tag:blogger.com,1999:blog-66003399158750993102024-03-12T21:00:42.063-07:00Go to Your Corners and Come Out LovingBlog written by a wife who was married to Gary 32 years before he died from the results of Dementia. She works Full Time as an Executive Director of a University. This blog will take you through beginning diagnosis to the aftermath of how she deals with grief. Written to assist others through experiences, humor and well, GOD knows what else....Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.comBlogger260125tag:blogger.com,1999:blog-6600339915875099310.post-73226312560790367392021-01-11T16:56:00.003-08:002021-01-11T17:15:22.468-08:00Three Years Later<span style="font-family: verdana;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-RZQzrQnpDVw/X_z4Gu7rOpI/AAAAAAAAMm0/i8iEJgoIv2E8Og6pn0O05FNh-qARLQ_3wCPcBGAsYHg/s512/gary%2Bbubbles.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="512" data-original-width="512" height="144" src="https://1.bp.blogspot.com/-RZQzrQnpDVw/X_z4Gu7rOpI/AAAAAAAAMm0/i8iEJgoIv2E8Og6pn0O05FNh-qARLQ_3wCPcBGAsYHg/w144-h144/gary%2Bbubbles.jpeg" width="144" /></a></div><br />Its been three years since Gary died. Most days I think about him. Its hard not to as we were married for 32 years and until he was months into his diagnosis, we were happy. I also have many reminders in our home that trickle memories through my brain. Most of all, Facebook pops up "memories" from years past when I least expect them. </span><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">For example, today Facebook showed me a video of Gary pushing our grandson Alexander around the backyard in a child's toy. I heard his voice. Before he died he was speechless for almost a year. I hadn't heard his voice since around 2017. I had forgotten how soft it was. In the video he was pushing Xander and laughing. I got really pissed. I understand that he is gone. I am very happy with my new husband. But the anger came from the unfairness of the disease....dementia. It is a horrible stealer of lives. I wish I could take it away from people. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">I used to only write blogs when I felt like I needed to get something off my chest. Today's blog was spurred by that video and a plea of someone on Facebook asking for advice for a family member with COVID and Alzheimer's. I can't imagine the pain of those two afflictions together. I felt the need to write something but frankly, I have no clarity around <i>what</i> I should write.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">I have a friend who's Dad has Alzheimer's and a mom with a different horrible disease. I give her advice when I can. It helps her and it helps me. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">A few days ago was the three year anniversary of Gary's trip to heaven. It was sad. I cried when I looked at the pictures of his last hours. I wish I had more videos of him when he was healthy to share with his grandchildren later. For example, Xander may not remember him after some time passes. It is sad. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">The advice I would give to others is to video the heck out of the good times. People grieve in different ways and you may not get through the stages of grief like I did. I grieved Gary for four/five years before he was gone. You may not have that same scenario. You will want pictures, videos, smells, etc of your loved one. Do it now. Its not too late.</span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">I remain available for those who need to work through a situation with Dementia. I hope it is a skill I will never need to use personally again. However, if I need to coach, assist or just listen I know that God blesses me everyday and I will do my best. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;"><br /></span></div>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-11781494412761971082019-10-17T18:18:00.003-07:002019-10-17T18:32:02.105-07:00I will always be a caregiver - the role just changed!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "verdana" , sans-serif; font-size: large;">For many years I was a wife and a caregiver for my late husband. He had Fronto-Temporal Degeneration or "Dementia". Many of those days are chronicled here on the blog that was first called "Go to Your Corners and Come Out Fighting." A couple of years into the battle, I changed the title to "Go To Your Corners and Come out Loving." At that point, I realized that one can not fight the disease. You can only learn to cope. So I used this blog as my therapy group, my friend, my replacement for him and spent many hours hoping I could help other families in the same situation.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">A little over three years ago, my husband at that time Gary ceased to know me. His body began curling up and experiencing atrophy. It was hell for him physically and my emotional state went through the same hell. I wish the disease on no family. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">When I think back on that time, I was experiencing grief. It is hard to love someone whose brain doesn't know you. The person you love is no longer there. I was grieving as if he was dead. But, I still had to go to the memory unit and look at him. The healthy mind experiences a special kind of confusion that cannot be explained. I was losing the only man I had ever truly loved and I was being devastated financially.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">I remember praying for God to take him and make him whole. Eventually, Gary died and had a peaceful departure to Heaven. My work was done. All I had to do was heal. It was not that difficult for me as I had lost him long before the actual death.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Many people thought I should wait a year before I made any big decisions. No one can tell you how to live your life...no matter how well-meaning they are.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Fast forward to my life now. I had a beautiful wedding two weeks ago and married a man that I would only have dreamed of a few years ago. He is kind, healthy and I am very much in love. </span><br />
<a href="https://1.bp.blogspot.com/-wchgyj0jFWE/XakMuKSLI6I/AAAAAAAALx4/KZFIyHjYkE4VwrfkcFqJt8-d0vyjNn4sACLcBGAsYHQ/s1600/wedding.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="806" data-original-width="503" height="320" src="https://1.bp.blogspot.com/-wchgyj0jFWE/XakMuKSLI6I/AAAAAAAALx4/KZFIyHjYkE4VwrfkcFqJt8-d0vyjNn4sACLcBGAsYHQ/s320/wedding.jpg" width="199" /></a><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;">He understands times when I still get teary over old pictures or am reminded of good times. He is precious to me.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">A friend called me last weekend and asked if I could consult with her neighbor who had just put her husband in memory care. She was experiencing the range of emotions affiliated with that hell-time. I got a lump in my throat and knew that I had to say "yes" to the request. There is a reason I lived through that time....I have to help others. My prayer is that I can be of some comfort to her. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Today, at lunch, somehow the conversation turned to our life stories. I was meeting with a colleague whom I had never met. I was able to quickly tell the whole "I <i>was </i>a caregiver story." I did so with little emotion and was able to articulate some of the events. I realized that my life as a caregiver will never be over....it merely changed from being a full-time caregiver with sleepless nights to the role of being called upon to help families cope. I am okay with that role. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">Meanwhile, I am loving life. Part of the comfort I can give people in the same situation is to tell families that God is always there and taking care of those who cannot do so themselves. There is hope for a new life. I am living proof. Thank you, Lord for the miraculous life. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com2tag:blogger.com,1999:blog-6600339915875099310.post-12435832266742676432019-04-23T16:18:00.001-07:002019-04-23T16:18:46.219-07:00Dreams of a Healthy Husband<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I have been having very intense dreams lately....mostly involving my late husband Gary. He was diagnosed with Frontotemporal Degeneration in 2014 and I suffered with him until his death in January 2018. I loved him dearly for 32 years and we had many great adventures together....many of which are chronicled in this blog.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The last few years of his life were mixtures of laughter, misadventures, caregiving and at the end, a near rendition of what I imagine hell to be like. I was always concerned that once I switched from loving wife to the status of "caregiver" that I would never be able to separate the realness of the disease and its horrific effects from the beautiful memories. There are times when I sit and try to recall special moments, vacations, etc and I always seem to super-impose the memory by inserting the "dementia Gary" into the memory. It ruins everything. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">But I have hope that someday the memories will be sorted into accurate timeframes with accurate faces, wellness and memories. There is hope and I know the accurate memories are still there due to the dreams that have perplexed me these past few nights.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">For example: last night I dreamed that Gary and I were riding in our Toyota Prius but we were sitting in the back seat and attempting to drive it from the back seat. We were in a neighborhood somewhere that we have driven before and we were laughing at how silly the situation was. He was normal again. Our Beagle dog Diva Gerl (now deceased) was running next to the car and sniffing the flowered trail that I saw outside the window. We would have never let her run free, so in my mind this was odd. Gary was going on and on and talking about the houses that we were passing...much like he used to when discovering a new place or sharing one of his entrepreneurial ideas. I found myself listening to him like I never had before. He was intelligent again. It made my happy.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Then, the dreamed continued and we pulled up to our old house in Elk Grove, California. We hopped out and the scene turned dark. Everything was pitch black as we opened the front door. When I walked in the house I found it odd that the night light by the front door was not working. Gary turned on the flashlight to his phone and headed for the breaker box. Again, he was normal with no signs of the dementia stare that plagued him in the end.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">In the dream, the lights came on but he did not re-enter the house. I looked for him and found him outside the house at the breaker box. It was open and he had flipped the breaker to bring on the lights. I looked at his face and he was again the "dementia Gary" with no response. Somehow, it was symbolic of him trading his intelligence for the light.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Ironically, when I awoke this morning and entered by bathroom, the night light was dark and the electrical plugs did not work. Switching the breaker did no good and now I await an electrician.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I don't really know what any of this meant and I can only assume it is a coincidence. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">If you have a loved one with FTD....take videos, make recordings and take lots of photos.....I would hate for you not to have the good memories for times when things are not going well. It is important to preserve the healthy memories. </span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-36999373695935292942018-12-29T04:35:00.003-08:002018-12-29T04:42:06.685-08:00He was helpless...or was he?<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-QSG-AbumgQU/XCdkF43dM2I/AAAAAAAALSU/EhatEiw_uXUezU0EzvfkFJiLIVJolNQ1QCLcBGAs/s1600/A%2Bman%2Band%2Bhis%2Bdog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="834" data-original-width="960" height="278" src="https://1.bp.blogspot.com/-QSG-AbumgQU/XCdkF43dM2I/AAAAAAAALSU/EhatEiw_uXUezU0EzvfkFJiLIVJolNQ1QCLcBGAs/s320/A%2Bman%2Band%2Bhis%2Bdog.jpg" width="320" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Its been almost a year since Gary died. This time last year we had started what I call "Death watch". I had been told since the beginning of 2017 that he would not live beyond August or it would be a "miracle". He lived until January 2018. Those days are chronicled in this blog if you want to read backward to late 2017 and early 2018. In retrospect, I believe he lived as long as he did for a reason.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It had nothing to do with Dementia. We all know the functioning part of his mind was gone long before his death...he knew no one and knew only the life that presented itself in every moment. He was helpless....or was he? The spirit is strong and I believe God has a purpose for everyone in every moment they live. Gary lived long enough to know that I was going to be okay and somehow, in the background, he took care of things that needed to be settled. I will never recoup the near $900,000 in losses he incurred through his early FTD-related decisions. But, he stayed long enough to make sure through the sale of our never-lived-in retirement home, tax benefits and insurance that at least I recovered the near $175, 000 spent on his care in the last years. (Yes, people, Dementia care is expensive!)</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The picture above was taken about a year and a half before I had to move him to memory care. It was near the beginning of a time when he needed care full time. He could still walk our dog Diva, but not by themselves. Since she was a Beagle, her nose would take them into uncharted territory and his brain, with no filter, would allow all types of unwanted adventures. Now, they are both in heaven and this picture shows what I believe to be their lives now.....on a walk, enjoying life again. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">For the caregivers, the family left behind, life has started anew. When his daughter Heather and I were in the daily life of taking care of him, we had no glimpse of the future. Exhaustion was ever-present and there was no normal future in sight. I want to give hope to all caregivers. When your loved one has been restored to their glory and move on, out of the hellish captivity of their brains, everything can start over or anew for you. I will never regret the time I spent as wife and caregiver but it certainly changed me. The first step after his death for me was to breathe and heal my own body and psyche. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Now, a year later, Heather is rebuilding her life and I am well on my way. I relocated away from the city and space where much of the agony occurred. I am in love with a wonderful man who is giving and compassionate when it comes to my remaining grief. I could not be more blessed.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">If you are struggling with the horrible effects of FTD and how to take care of a loved one, there are many resources available. I suggest you start with The Association for Frontotemporal Degeneration at https://www.theaftd.org.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The resources available to families and patients is not nearly enough compared to what is needed. But do not give up and reach out. More than anything, have faith that it does end and the Lord is in charge. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-39813163205896034542018-11-02T13:24:00.002-07:002018-11-02T13:25:18.583-07:00Happy Birthday in Heaven, Gary!<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">My late husband Gary would have celebrated his 70th birthday today had he lived. Frontotemporal Degeneration (FTD) robbed him of that celebration.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am a Facebook user and one of the features is a daily reminder of what happened on that same day last year, the year before, etc. Today, since it was Gary's birthday, I found the following:</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">2013 - We had not yet identified the disease but knew that something was definitely wrong. Part of the disease is personified in bad decisions....he lost over $400,000 that year in bad investments. </span><br />
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<a href="https://4.bp.blogspot.com/-KUqXUVq7RnQ/W9yut2UQECI/AAAAAAAALMI/-y4VBUMIlPkAii9aEEAXDDnDwycViltqwCEwYBhgL/s1600/four%2Byear%2Bs%2Bago.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="792" height="320" src="https://4.bp.blogspot.com/-KUqXUVq7RnQ/W9yut2UQECI/AAAAAAAALMI/-y4VBUMIlPkAii9aEEAXDDnDwycViltqwCEwYBhgL/s320/four%2Byear%2Bs%2Bago.jpg" width="264" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">2014 - Gary and our beagle Diva were constant companions. It is ironic that she died just two weeks ago. Early indications during this year of his disease included the two of them getting lost, getting in the car with strangers who felt sorry for them during the heat and Gary letting Diva run off-leash and her getting hurt. </span><br />
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<a href="https://4.bp.blogspot.com/-sLzLfCY6b6E/W9yuueqsckI/AAAAAAAALMQ/KhoC-D5uY7AHo0GwN_yFDAaCRDr3DEHZgCEwYBhgL/s1600/two%2Byears%2Bago.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://4.bp.blogspot.com/-sLzLfCY6b6E/W9yuueqsckI/AAAAAAAALMQ/KhoC-D5uY7AHo0GwN_yFDAaCRDr3DEHZgCEwYBhgL/s320/two%2Byears%2Bago.jpg" width="176" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">2016 - This year Gary had deteriorated so much that he had to go to a memory care unit. The disease had started taking its toll on his body and on his birthday he could not walk nor speak. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">2017 - just one year ago, the disease had ravaged his body and he was awake but near vegetative state. His hands and spine had atrophied and he did not know any of us. He certainly was not celebrating his birthday. He died January 9, 2018. Upon his death, within minutes, his body was restored and he lay flat. The atrophy in his hands and spine were gone and he was free.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">So, today, he is celebrating a FTD-free birthday in Heaven with his devoted Beagle by his side. I am grateful for the time we had together and even though my life is happy and continuing, there is still a sadness that reigns in my heart on certain days. Happy Birthday Gary. </span><br />
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Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-12603647740506665352018-08-30T15:22:00.002-07:002018-08-30T15:23:49.980-07:00No One Here Knows Gary<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Life has been very hectic. In the last month, I have started a new job, trained all over Southern California, rented the home I am buying tomorrow, moved all my belongings into the new house, worked twelve hours days and spent weekends unpacking two separate moving trucks. I have been quite busy despite the fact that my new boyfriend has been instrumental in unpacking most of my house. I don't know how I would have done this without him.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The hard part of this move is having so many belongings that trigger memories of Gary. While mentally, he has been gone for almost two years, he just died in January of this year. I do not feel grief anymore but have transitioned into fond memories that I will carry forever. FTD robbed us of our marriage and ultimately Gary's life. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am writing tonight to discuss how I am dealing with the memories and how they relate to his belongings. Gary made a beautiful, handcrafted dining table over 40 years ago. In the 32 years we were married, we moved many times. During those moves and in every situation, we always referred to it as "Gary's table" even though we were married and it was my table too. In this move, the table came on the first truck while I was at work. My boyfriend was at the house assisting the movers in unloading the truck and staging the house. He sent me a text to ask a question and referenced the table as "Gary's table". For the first time, I realized that it is now "my table" and despite my respect for Gary, I need to reference it as mine. The feelings centered around this emotion were confusion, pride and love. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Also a source of emotion are items such as framed pictures of us taken over the years. As I am unpacking boxes that contain various photos, I find myself repacking them and putting them into storage. While my new love is completely understanding of my 32 year relationship, I don't feel it is right to have pictures of me and Gary all over the house when he visits me. I have redecorated to not include all the photos. As far as my office at work, I have also decided to have one picture of Gary (in the rainforest in Panama) to symbolize my adventurous marriage to him. All other photos are of Heather, Xander, Wes and another very special foster group whom I helped sponsor at Disney last year. It is a strange feeling knowing that he is no longer here.....in any way.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am buying a new house and am in the middle of all the paperwork to sell the old house and buy the new one. For the first time I saw the words ,"Ada Gerard, a single woman" on a contract. What? Of course, I know I am single but seeing it in writing was really a weird sensation. Its almost like I felt incomplete.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">In getting to know the new employees at work, it is also strange that everywhere I have worked in my adult life, Gary was always a part of my life. Everyone knew him or knew of him. At Heald, for 16 years, everyone knew Gary as he would come to the campus and work at the Holiday events or donate food to the food pantry. They followed our stories after he got sick and started forgetting all of them. At the last University, they knew of him and I felt enveloped in love even though he was in Memory Care. They nursed me through his death. At the new school, they don't think of me as Gary's wife rather, they know of the story of him and that is all. I am finding healing in that blank space.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Life is moving on, I find myself excited at the possibilities of what life will bring. As I continue to unpack boxes in the new house, I'm sure I will find other items that will trigger a memory, a sniff from our dog Diva or a laugh...maybe even a tear or two. Its okay. I am healing from the trauma of FTD and hope that I can help others who are facing the evil of dementia or Alzheimer's.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-48970304502691724262018-07-25T10:52:00.000-07:002018-07-25T10:52:00.419-07:00Life Changes - a Three Year Journey<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Three years ago today, on July 25, 2015, I moved my family to Southern California from the Sacramento area to take a new job at the university.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">At the time, my husband Gary (already diagnosed with FTD) was still alive and moving with us was our daughter Heather and her son Alexander. As movers loaded the monstrous van with all our belongings, we sat and watched on benches made by my husband years ago.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">As you can see, Gary was starting to get that "dementia stare" and was very unhappy and confused. Heather and I stayed focused on the future....its all we could do.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Our lives have changed dramatically in three years. We suffered through two years of watching Gary decline. He went from still walking and talking through a phase where he repeated everything he heard without much original thought. He then started the "tapping" phase where he had constant movement of his hands and feet. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">When we moved to Anaheim, I rented a two story home that later became one of the reasons we had to put Gary into memory care. He started shuffling instead of walking and losing balance frequently. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I was working a 50 hour week and Heather began her college career. At first, Gary went to day care every morning and took the care-van home in the afternoon and met a hired caregiver that would stay with him until I got home at 7:00pm. As he declined and I was concerned about saving as much money as possible, I found that I was starting to feel trapped. I barely went to the store as I could not take him anywhere anymore. His verbal filters were gone and he would say VERY inappropriate things to people in public. And, of course, I was always afraid he would fall or overly wet his diaper. He still looked normal so people were always caught off-guard when he would blurt out such tidbits as "Ada, I am peeing!" or tell the manicurist that she had beautiful breasts. So, we stayed home. I bought everything including groceries from Amazon.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">As he deteriorated, so did I. My stress level was off the charts and I knew that I would have to take action and put him in memory care. He could no longer live in that house as it would be my fault that he fell down the steps. After four emergency room visits in two months and my own case of pneumonia, we moved him to Sunrise Memory Care.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">It was a horrific time for all of us. Every evening and on weekends, I visited him. Those visits are all chronicled in this blog. I watched him decline with every visit. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I remember sitting in that great room holding his hand and praying that God would end his suffering. I dreamed of a time in the future when I could live a somewhat normal life again. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">In January of 2017, I decided to take my life back. I lost weight, changed out my wardrobe, fixed my hair and started living. I started looking at life around me. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Gary died in January of 2018. It was a peaceful and much needed death. I took some time off and healed my body. I took a long look at my career, my living situation and my heart. I have no regrets as I know I took care of him and gave him the best end of life and care that I could afford to buy. </span><span style="font-family: "Trebuchet MS", sans-serif; font-size: large;">Sometime during all these end of life adventures, I found me again. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">So now, three years after moving to Southern California, I have made the decision to cut ties with this part of the world that has left me with so many bad memories and move. I will be relocating to Fresno, starting a new job at a smaller school (this one will fill my work heart), and pursuing a new relationship with a wonderful God-sent man. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">For all the family members of victims of Alzheimers, Dementia or FTD, I can only encourage you to do the best you can to care for your loved one but also to take care of yourselves to the best of your ability. My story is just beginning and there is hope after this dreadful disease. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I am eternally grateful to the Good Lord for the grace and amazing love he has shown me and my family through this ordeal. We are stronger for it and Gary is resting peacefully in Heaven. I know in my heart he is watching over us as we continue with our lives. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-32579215727637993702018-06-23T07:17:00.002-07:002018-06-23T07:18:24.370-07:00Haunted by the Disease<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Three nights ago, I was at my neighborhood swimming pool all by myself. It is a lovely saltwater pool that I often find maintained but rarely used. I often enjoy my exercise by myself. That night from the pool, I noticed some trash strewn next to the pool. Doritos bag and coke bottles. I thought to myself that when I finished swimming I would toss them in the trash. Careless teenagers? I thought that even in Anaheim Hills people don't think of others. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">That evening an event occurred that has almost haunted me since....I've thought about it many times and wish I could go back and respond differently. </span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">I think this story is about a person with early dementia but I'm not sure. Unless I go back to the pool and by chance encounter the old couple, I will never know.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I was in the deep end of the pool and watched an elderly couple (late 80s or early 90s) enter the pool area. Their gaits were slow and methodical, like they fear every step will end in a fall. They stabilized each other. The woman walked with the assistance of a walker and the old man helped her gently into the pool. I told them the water was very warm and enjoyable. She told the man, "Look, there are pine needles in the water. Perhaps you can take them all out while I swim like you did the other day." I thought nothing of it at the time. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Myself and the woman were busy moving through the water. The old man was in the shallow end splashing at the water and then he stopped and walked to the edge of the pool and started taking pine needles out of the water, one at a time, and putting them on the cement next to the pool. Again, I thought nothing of it. I heard him and his wife carrying on small talk and since it was not my business, I did not really listen. In fact, if I had to recant their conversation, I could not.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">As I closed the exercise rings on my Apple Watch, I decided to not exceed my goals but rather be content in the fact that I reached the goal. I was hungry and wanted dinner.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I got into the hot tub to warm up. As I dried off to leave, I glanced at the pool. The woman was safely floating on her back and oblivious to anything else. I looked at the man and he had moved to the other side of the pool and was reaching for the Doritos bag. He reached slowly into the bag and began to feast on the Nacho Cheese flavored delicacy. I thought, maybe the couple had been here earlier and left those and that the Doritos were theirs. I walked away but turned around and looked again at the scene. Something was not right. His hollow eyes looked at me and I was embarrassed that he saw me watching him. I went home.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I have re-thought this scenario many times. I honestly think the man has a form of dementia. The looks, the behavior and the strange non-filtered actions were too close to behaviors exhibited by my former husband. Why else would he have been so meticulous about the pine needles but eat Doritos from a bag left behind by others? I had to think, does the wife know? </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">How silly of me, of course she knows if she lives with him everyday. Then again, when a wife or spouse is in the day to day hell of the early disease, the behavior goes ignored because it is odd and we relate it to aging. The stress could be overwhelming for her and that few minutes of floating where she was not watching him is the only peace she gets.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">Then, the guilt set in on my emotions. What if the old man got sick from eating the Doritos and because I didn't say anything, she doesn't know why. Why didn't I point out this situation to her? Afraid to interfere? I have imagined having a conversation with her......how would I have asked her if she is okay. Does she have a support system? Has he been diagnosed? Maybe he doesn't have Dementia at all and he was just from an era where if you are hungry and you see food wasted, it must be eaten? Ada, don't be silly.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">Anyway, I have thought many times over the last few days that I am forever changed by the fact that I lived through many years of FTD hell, as a wife and caregiver. I think differently and feel the responsibility still to help others if I can. In this case, I failed. I walked away. I won't do that again.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">Last Sunday, our Pastor talked about believers needing to walk toward others in discomfort or needing help. Perhaps I heard the message but was not listening.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">I have rationalized since that I am sure the old couple is just fine. I am hoping that I will see them again and be able to further interact with them to get the whole story. I hope I was wrong about it all but my guts tell me otherwise.....it was Dementia. In some small way, the hell of that horrible disease forever haunts me. I wish it on no one.</span></div>
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<br />Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-47714349960997418742018-06-13T11:14:00.001-07:002018-06-13T11:14:37.843-07:00There is hope after the "stare". <span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Sunday is Father's Day. I was reading this blog from years past around this time of year and contemplating how things have changed over the years. This time last year, Gary was still alive and for the most part, showed no emotion....just had that blank Dementia stare. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">For those who don't know, Gary died in January this year, 2018. He fought a long hard battle with F.T.D. Sadly, it was a battle that is never won by the person who has it nor by the family and caregivers supporting them. It is deadly and for now, has no cure.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">This week I was talking with some co-workers who were inquiring "How are you?" It is so interesting when people ask the question because they are not sure of the response but I know they are genuinely concerned about my well-being. Sitting at the table was a new employee whom I had just met and she knew nothing about me. I did not take this into consideration before I answered because I knew the one asking the question knew my story. So I answered that I am doing very well and happy. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">We chatted for a while about how things have changed and I referenced a time when Gary just had "the Dementia stare". The new employee, a compassionate nurse, giggled. Not knowing the situation, she assumed that my husband was "Normal" and found my reference to him staring as funny. I thought nothing of it and told her that he had died in January of Dementia and that the time I was referencing was a time when he really did stare. I am not sure, but I think she was partially mortified and partially thankful that I seemed to have accepted my fate and am moving through life. She apologized and I explained that it was okay and I apologized to her for being so casual and flippant. (Defense mechanism that I have mastered.) We all had a good laugh and moved on with the update.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Later in the day, I encountered another employee who is the primary caregiver for a husband-still-at-home-with-Dementia. Few people know of her plight as she is very private. We chatted about his regression and that fact that he is at the shuffling, unstable, stumbling stage of walking. I remember that stage well. Everyone around the patient then is scared of a fall. She and I chatted about possibilities.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I asked her if her husband still knows who she and her children are to him. She said a quiet "yes" but looked at me with a realization that the day is coming when he won't. I hugged her and told her I would be there for her when that happens. We parted after a sincere hug.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The disease is so horrible. It is obviously difficult for the patient but is equally difficult for the caregiver. What I do know is that six months later, after the passage to peace, life is good again. There is hope that any caregiver can heal and be happy. I want to thank the support team that helped me for so many years....they are too countless to name. Some were instrumental in my ability to cope and recover. You all know who you are. Thank you. </span></div>
Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-27697307299799420382018-05-30T16:31:00.002-07:002018-05-30T16:31:14.662-07:00Spreading Gary's Ashes<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This past weekend, my daughter, grandson, myself and two dear friends went to Yosemite National Park to spread half of Gary's ashes in the place he had designated. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">It was a clear day as we attempted to go up the road to Glacier point but the traffic was so heavy the rangers were stopping cars so we went to the valley instead. Later in the afternoon the cars cleared and we started to Sentinel Dome, our intended destination. As we went from 4,000 to 5,000 to 8,000 feet, the air became heavier and foggier. When we parked, the trail was only visible a few feet. We started walking the two mile trail into denser fog. </span><br />
<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">It has been years since I hiked so going up a wet surface was tough.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I was carrying Gary's ashes in a box in my backpack. I found them to be heavy. The feeling of the weight kept throwing off my balance. I told myself to suck it up and keep going. The weight was symbolic of the many years I "carried" him when he had Dementia. I told myself that nothing was different. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Then, I remembered meeting with a clairvoyant in January after he died. She told me that I have problems asking people for help and that I need to start practicing asking people to "carry my baggage" even if I didn't need it. Wow, I had no idea at the time that I would later refer to that event when carrying my husband's ashes to their final site. I asked our friend Michael if he would carry the backpack and he gladly took them and carried them to the top.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I was very tired by the time we reached the top. We found a perfect spot under a tree to spread the ashes. It was a single trunk with two branches spreading apart. Again, the symbolism was incredible. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">We all got quiet and I said a heartfelt prayer and gave Gary back to God. I cried as I spread the ashes into the plants below the tree.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Gary would have been pleased with the location. Mike and I hugged and cried. We will miss Gary greatly....especially when visiting such magical places that he loved so much. It was a life well-lived. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I thank God for giving him to me for 32 years. I hope that all families who lose someone to such a horrible disease can feel the peace we felt on that mountain. God bless you all. </span></div>
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Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-48591884629275204962018-05-10T16:16:00.001-07:002018-05-10T16:16:46.493-07:00Life has started over again.....<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Life has started over again despite the setbacks of the impact of Frontotemporal Degeneration on the life of my husband, me and our family.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Gary went home to be with the Lord 4 months ago. He is no longer suffering. During the last 5 years I had to deal with his disease in a very real way while still working full time as a university administrator while coupling as a caregiver. It was exhausting. The whole scenario unfolded over a period of years and all of a sudden, I found myself overwhelmed. I just slid into my new role of caregiver or as I call it un-wife. I always talk about what a great marriage we had and we did....but NOT during the years of FTD. He slipped away about 8 years ago. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">In reality, he was not there for me and was high maintenance even before his diagnosis. He was 100% dependent on me. He could not help his behavior and I spent many years resenting him thinking that he could prevent it. Those years of anger are my only regret. Had I acted differently, nothing would have changed in his behavior but probably many hurt feelings would have been prevented. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">If I have any advice to give families of those suffering with FTD, its be aware that they have a disease and you might need to imagine that the human form before you is not really the family member you have lived with before now. That person in your memory is already leaving or gone. Do not be upset with them. Find a support group or a way to deal with your pain away from them. Grieve them while they are alive.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Meanwhile, I have started to feel like my own person again. I am not spending $8000 per month on memory care. I am improving my house, dating and having fun again. There is life after FTD. Am I a better person for having the experience? Yes. Would I do it again? No way. I am just thankful that my husband of 32 years is in a better place and no longer suffering.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">At the end of this month, I will join his daughter and grandson and some dear old friends to spread his ashes over Yosemite. He is finally free. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-8718064179216094182018-04-09T15:32:00.000-07:002018-04-09T15:32:00.774-07:00Inhale. Exhale. Inhale. Exhale. <span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Gary died three months ago today. For the most part, I don't have much emotion around it and didn't even realize until this afternoon that it is an "anniversary" of sorts.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Yesterday, Heather and I were driving near the Memory Care Unit where Gary lived for 1.5 years. I had a moment where it seemed odd that I would not turn into that street. I even articulated to Heather that it is still surreal that he is not there sitting in his chair. I gave it no more thought.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This morning, as I clicked through Facebook I saw a link to a blog entry from this time last year where he had spoken the phrase, "No, shrimp.", as a result of me ordering him taquitos from a choice of taquitos or shrimp. He did not speak very often then and we were shocked (even then) that he spoke. As I read that this morning I felt a profound sadness and wiped away a tear. Just one tear. I brushed it off as normal grief and went about my day.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">This afternoon I was witnessing an interview with a student who mentioned abuse against a person with Dementia. It was completely unrelated to me but I instantly felt grief tears welling up in my eyes and I excused myself from the situation. This reaction is not one that I have had before and luckily the person doing the interviewing understood instantly what was happening. I walked into the hallway and spent a few minutes just breathing. Inhale, exhale. Inhale, exhale.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I understand this is normal but I don't like not performing well in "normal" situations. Inhale, exhale. I am very pleased that I know my husband is tucked safely into heaven and that his pain is over.....but sometimes it sure is hard. </span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-91163775129202621412018-03-03T09:50:00.002-08:002018-03-05T08:56:06.526-08:00Two months since his death.<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It has <span style="background-color: white;">been nearly two months since my husband of 32 years died from the results of Frontotemporal Degeneration (FTD - Dementia).</span></span><br />
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<span style="background-color: white; font-family: "trebuchet ms" , sans-serif; font-size: large;">Many people have asked me, "How are you doing?" That is such a normal but unusual question to ask someone who is going through such a transition. Here are some answers that swirl through my brain that never meet my lips as an answer to this well-meaning question:</span></div>
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<span style="background-color: #eeeeee; color: red; font-family: "trebuchet ms" , sans-serif; font-size: xx-small;">Warning: the following thoughts are unfiltered :)</span></div>
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<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am doing just fine, thank you.</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">How do you think I'm doing? I just lost my husband?</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I feel great because I am no longer a caregiver responsible for someone else's every breath, diaper and cost to keep them in a Memory Unit!</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am happy that I can now start my life over!</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I'm scared because I am alone for the first time in my life!</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am confident that I can take care of myself since I've been taking care of myself AND Gary for many years.</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I want to go on another vacation.</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I want to find the second man of my dreams and live happily ever after!</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Go screw yourself, do you just want to see me cry?</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Everyday I feel more stress leaving my body.</span></li>
<li><span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Why does God put certain people in our lives and then take them away?</span></li>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">One feeling that has not really crossed my heart is that of grief. While at Canyon Ranch, I spent time with a grief counselor who was able to get a smidgen of tears out of me and for that moment, I needed the relief. However, the five years of hell that Gary and I lived through prepared me for a life without him. I am confident that is the case.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I had a meeting with a member of Alzheimer's Orange County yesterday and I will begin work as a sponsorship chair for a Caregivers Recognition Event in September. It is time to start giving back. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">This week, I drove past the Memory Unit where Gary lived for 1.5 years. During many weeks, I was there everyday. As my car passed the street that turned into the building, I kept driving. I had no inclination to stop. That part of my life is over. I smiled and kept driving. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It is my hope that someday there will be a cure for the nasty, evil disease. In the meantime, I wish well to all the other family members and caregivers in this world who need incredible support. </span></div>
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Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-22719620625879239002018-01-20T07:44:00.002-08:002018-01-24T16:11:25.051-08:00Sunsets and Sunrises of Life after Dementia<div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It has been 12 days since Gary died of the effects of Frontotemporal Degeneration (FTD). </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Since then, I have been at Canyon Ranch in Arizona taking care of my medical, exercise and spiritual needs. I am taking care of myself for the first time in years. It feels liberating.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I am in the desert in winter. Two of the most magnificent things about this naturally placed resort are the sunsets and the sunrises. Since they signify endings and beginnings of days, I felt it appropriate to take the advice of a dear friend and write about my experiences with both.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">For the last few evenings, i glanced at the sunset. It was always beautiful....however, last night I chose to study it from the magnificence of nature. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">It was a spectacular day. Perfect in almost every way. I found a perch with an unobstructed view. As the light started to change, so did my mood. The obvious fact here is that no matter how wonderful or desperate a day is, the sunset or darkness always comes. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">The sky was full of clouds as well as blue (starting to grey) splotches. I sat quietly, helpless against the oncoming darkness but glad for the experience. Holding on to a good day is like life....eventually you need to rest. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">The colors in the sky became magnificent as the sun played against the clouds. One of the spirit guides here pointed out that the sunsets and sunrises are not as spectacular without the clouds. In this evening, she was correct. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Red. Orange. Yellow. Crimson. Blue. Green and brown. All colors were displayed beautifully on the canvas of the sky. I contemplated how each color stands alone but meshed together portray the beauty of it all. Just like life. People and experiences are the colors and life is the sky. We can choose to focus on one and get stuck there or see the whole picture.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;"> As the sun started to really dip behind the mountains, the sky became very still. All clouds stopped moving and the beauty froze. It was as if the universe was saying "stop and appreciate what you have." I did. I expressed gratitude for my existence and for all my blessings.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">As it grew dark, I felt a completion for my day. It was good. I looked forward to arising this morning and watching the sunrise from the same spot.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I slept, for the first time in ages, like a small child. I awoke with exuberance for the coming day. I made my way up the hill and found a great spot to sit and quieted my soul. I closed my eyes and soaked in the cold. As I opened my eyes, the sun was starting to dance on the clouds over the mountains to the right. </span><a href="https://3.bp.blogspot.com/-ycya9jgUlD4/WmNhAcikz3I/AAAAAAAAKFk/kCj6mUNY-HwBhga6Ua3CegNMUSHg3BWcACLcBGAs/s1600/sunrise%2B1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://3.bp.blogspot.com/-ycya9jgUlD4/WmNhAcikz3I/AAAAAAAAKFk/kCj6mUNY-HwBhga6Ua3CegNMUSHg3BWcACLcBGAs/s320/sunrise%2B1.jpg" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I could hear the world saying "Good Morning, Ada!" It felt as if God was painting the canvas of the sky. I sat for a few minutes in complete solitude as I watched the sky change.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The color changes were amazing as he moved his hand back and forth and made the clouds appear as cotton balls. It made me realize how fast things can change in life as well. While we have intentionality and focus, we must not miss the cues given us by nature and life.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Then, in an opposite direction there appeared a small black cloud. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I wondered if that cloud was symbolic of hard times in our lives. While the sky around us is painted, the negative events are there as well. I pondered the black cloud in comparison to the disease that has so impactfully changed by life in the last five years. Beauty was all around and I am glad that I could still see it despite the black cloud</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Then, just like my life, in an instant, that cloud changed and had color.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">While it was still a dark cloud, I could see if differently and for the beauty is possessed. The colors now reflected were like living through a dark period and emerging stronger because of it.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">As I sat there and absorbed the omnipotence of God, I realized that each day is a new day with new opportunities and how we view them make all the difference.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I then changed my body which changed my view. Behind that mountain, the sunrise was again changing. Just like our lives.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I sat there for another 1/2 hour and soaked in nature. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Dementia can drastically change our lives. I am choosing to now enjoy the sunsets and the sunrises. Looking at the metaphor in these events will help me sustain the peace that I have found here.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I wish Dementia on no family.....but I do know that God is there through it all..... just like the cloud hiding behind the mountain in the last picture....</span></div>
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Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-84183503770112961742018-01-14T11:19:00.002-08:002018-01-14T11:19:27.661-08:00Gary's Journey has ended. Rest in Peace dear one.<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It was Tuesday and I had a bad cold. I was on my way home from work and had the thought, "perhaps I should go by Gary's and visit." I again knew that I should not take a cold to the Memory Unit so I re-routed for home. The phone rang with the Sunrise Assisted Living ringtone...I immediately knew something was wrong.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The voice on the other end informed me that Gary had not eaten since the day before at lunch and had his jaws on lock-down so he could not eat. He was also not drinking water. <i> </i>I somehow knew this was the beginning of the end. I explained that I had a bad cold. Her response was, "We have face masks....you need to come."</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I spent most of the next week by his side. I sang to him, prayed for him, talked to him about memories and listened to him breathe. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">By Friday, he had a catheter as his kidneys were shutting down due to no water. He took three teaspoons of water from me on Thursday and four teaspoons on Friday. He had chosen to die. The output from the catheter was near black. I stayed with him each day and went home at night to try to sleep. The whole week from Tuesday to Sunday, I slept about 12 hours total. I was exhausted but knew the end was in sight.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">On Sunday, we started the oxygen and started monitoring the number of respirations emitted from his frail body. His last weight taken was 135 pounds....down 50 pounds from when he moved into memory care one and a half years ago.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Gary's daughter joined me for several of the days where we sat vigil....waiting for his death. We sang to him, had visitors with guitars and prayers and basically sat quietly and watched as his right lung collapsed. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I awoke at home on Monday morning after two hours of sleep at 2:30. I struggled to go back to sleep but arose at 4:30 am and decided to go ahead and join Gary at the unit. I took my belongings needed to stay with him indefinitely. I would not be coming back to my home until he died.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Normal respiration is between 12 and 20 breaths per minute. For days, Gary was at 24. He was on morphine to assist with keeping him from struggling. The Hospice doctor visited on Monday morning and decided it was time to put him on continuous care. Simply put, he would have a nurse 24 hours a day that could administer morphine and other comforting drugs until he dies. I was glad to have the professional company in the room. The doctor met with Heather and I and said he would live 12 to 24 hours.....48 on the outside. His physical strength and lack of heart or lung issues would slow down the process.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The thoughts that occur during this time of waiting are incredible. I had very few tears or grief. I had always said the last few years had already given me time to grieve. I, apparently, was right.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">On Monday, around 3:30, his breathing changed and became more shallow. His breathing count was sustained but it sounded very differently. The nurse's job at this point was to watch him and give comfort as needed. When this breathing changed, so did her demeanor. She made no comment, but I knew the difference was a marked indicator or pending death. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">At 7:30, I moved to sit on the bed with his head next to my breast. I stroked his head and chest and felt a man very different from the one I knew and loved. His blood had been leaving his extremities for hours but now his entire legs and hands were starting to turn purple. I thought at any minute he would die. The nurse came over and examined him. She indicated that it would not be long. I sat there until my legs fell asleep and my pain was unbearable from positioning. At 9:30, I moved to the chair where I could sit more comfortably but still touch him. The nurses changed shifts and I got to know the new nurse. She suggested that I sleep and that she would wake me if anything changed. I slept in the chair for about 45 minutes, rejuvenated and went back on death watch.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The night brought a stream of caregivers who were respectfully saying goodbye to a man for whom they loved and cared for for 1.5 years. One of the ladies always referred to him as Poppy, like her substitute father. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Around 12:30, I again sat on his bed and watched his coloring change once again. His face had turned purple but the crown of his head was still white. It gave the illusion of him having a jagged crown on his forehead. His breathing had moved to being forced by his stomach muscles.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The nurse commented that she had never seen shallow breathing being sustained for that long. Around 4:30, the room felt different. I knew the Lord was near. I turned on the Christian music station and again filled the room with soothing sounds. His apnea had started. The nurse talked me through what would happen. The science of the last breaths were accurately called by her. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The song "Oceans - where my feet may fail" was playing. As the song played out with a peaceful tribute to God, my husband of 32 years drew his last breath. When the song ended, he left this earth. It was the most peaceful experience I have ever had. 4:57 am on January 9...he was gone. I could not have scripted the last few minutes of his beautiful life any better than the unfold. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">We had to wait until an RN came to officially pronounce him dead, but I knew he was gone. I called the folks I needed to call and then sat there. Around 6:45, Heather came to sit with him and me until the nurse came. We sat with his body for 3 1/2 hours before the nurse arrived. His official time of death was 8:45 am. I was exhausted and decided to leave. Heather offered to stay until the mortuary came but I encouraged her to leave as well. The nurses would stay with his body until he would be moved.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It was over. The beautiful life he had lived was done. The agony bestowed on my family from the Frontotemporal Degeneration was finished. He was at peace. As I left the room, I kissed his forehead and noticed that he was again turning from purple to white. He was being restored. This was symbolic of what was happening behind the scenes. I knew as Gary ascended to heaven that his body was being restored to one of health, memory and wholeness. It was beautiful. I felt at peace. His journey was done.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Mine is just beginning.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com2tag:blogger.com,1999:blog-6600339915875099310.post-9024146121587634592018-01-05T09:35:00.002-08:002018-01-05T09:35:36.333-08:00The last days....<span style="font-family: "Trebuchet MS", sans-serif; font-size: large;">Watching your loved one die has to be one of the hardest things to experience in life. I have sat next to my husband, Gary for the past three days and watched him cascade through the final stages of life. Frontotemporal Degeneration is the devil in the form of disease. It is evil and no God loving man or woman should have to endure it. Not only is the patient a victim but also the family, loved ones and caregivers.</span><br />
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<span style="font-family: trebuchet ms; font-size: large;">Some of these caregivers have cried more than me when working with Gary. They are all professionals but humans first. I am simply numb.</span></div>
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<span style="font-family: trebuchet ms; font-size: large;">After a night of partial sleep, my daughter and I went to breakfast and talked. No particular subjects were present on the agenda but it was nice to have companionship. I then came to Sunrise Assisted Living to sit vigil with my husband's body. It is still alive but I am convinced his soul is not her</span><span style="font-family: trebuchet ms; font-size: large;">e. </span></div>
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<span style="font-family: trebuchet ms; font-size: large;">Upon entering his room for the first time in 12 hours, I was rocked by the difference in his body. It is almost as if his head is changing shape. His face is gaunt and has little color. He now has a catheter and the output is only liquid from his body as he has had no water. He has had morphine to assist with...I'm not sure what. His limbs are starting to show the ugly color of blue.</span></div>
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<span style="font-family: trebuchet ms; font-size: large;">I loved this man so much for 32 years. We had wonderful adventures and shared great times as well as many typical marriage challenges. Watching him take what are undoubtedly his near last breaths, I am full of love, anger, rage and praise for a precious Lord who allowed such an amazing man into my life for as long as he did. </span></div>
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<span style="font-family: trebuchet ms; font-size: large;">On the table beside his bed is a copy of our marriage vows. Ironically, part of my vows to him stated: "If I can begin to touch others as you have touched me, I shall praise God for allowing such a strong love. For you, my dear, are special and I am blessed to be your wife."</span></div>
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<span style="font-family: trebuchet ms; font-size: large;">I have been very blessed and can rest in the fact that I know Gary was strong in his devotion to God and that he will soon be free of disease and made whole in Heaven.</span></div>
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<span style="font-family: trebuchet ms; font-size: large;">I will write again when he is officially gone...with God's will, it won't be long.</span></div>
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<br />Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com7tag:blogger.com,1999:blog-6600339915875099310.post-68186009117168050582018-01-04T04:41:00.001-08:002018-01-04T04:45:08.298-08:00Watching Him Breathe<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Just hours after my last call from the Hospice Chaplin telling me she had prayed over Gary, I got another call informing me that he has stopped eating and drinking. So, I went to the Memory Unit to start what has been a very interesting two days.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">The Hospice nurse who called me had been off work for a week and came back to work. Upon entering Gary's room, she noticed a marked difference in him. It was not hard to miss. I, too, upon entering his room saw a broken man. His eyes seemed to be sitting deeper in their sockets and he appears significantly thinner. His jaws were sagging. I received a universal message that my husband is dying. I have known this for a long time, but the evidence was very visual.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">So, I have spent the last day and a half, mostly, at his side. The first night, he never awoke during my visit. Actually, visit is not the correct noun. I will now call it a vigil. He had not eaten since the night before and was clenching his jaw tight shut when offered water. Whether he is mentally aware of his actions, his body is shutting him down.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Lacy, one of his original caregivers (Angel) greeted me to tell me that she had also been on vacation and had experienced a dream about Gary. She described a vivid dream where she walked back into the unit after being gone and saw me and Gary sitting in the great room talking. She said he got up from the chair and walked over to her and said, "Look Lacy, I can talk again!" She said we were both very happy. She woke up and felt that the Lord had sent her a message that Gary would be whole soon.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">One of my pastors came to sit for a while with me. It was nice to have companionship to talk and reminisce about Gary's life. I am mostly alone now. I told her that most of our lives together had been just Gary and myself and that once again, it appears that it is just us, alone, losing the final battle. Or perhaps, he is winning the final battle. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I do not ask friends or associates to come to the Memory Unit to visit or to sit with me. I would feel wrong putting people in that position. Everyone deals with death differently. I am getting tremendous support from texting, Facebook, Skype and phone calls. Even when loved ones do not know what to say, their thoughts and prayers are special. It will keep me from self-destructing. (You know who you are and I thank you!)</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I sat with him all day yesterday and provided basic care. We tried to give him water using a swab and I discovered that he had pocketed (held in his mouth) the last dose of applesauce and medicine he had received the previous night. The poor man could not swallow it. His mouth was cleaned and he then took about 4 teaspoons of water before his again refused to open is mouth.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Sitting and watching someone actively die is an amazing experience. The professionals say that perhaps he is just taking a break from food and water and that he might rebound. I don't agree. If he does not drink or eat, they predict his demise in 2 to 7 days. We will re-evaluate daily. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am spending my days sitting quietly with him and watching him breathe. I stroke his head and arms but there is no reaction. Its as if his mind has already left his body and his body is just hanging out. The days are long and grueling. I am not filled with any type of emotion including grief. Any emotions I have are tucked deeply away while I do what I do best which is "take care of business". I will fall apart later.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Since I was told that his death was probably not going to be last night, I gave myself some solace and stopped for dinner. I sat at the bar at a local establishment and had a magnificent steak salad and a martini. A subsequent chat with a local business owner who just moved to the area took my mind off my troubles for a few minutes. I ended the conversation with him by sharing my blog address and talking to him about his 90 year old mother. Its nice to talk with people. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I came home and sat in front of the television. The family was off on an adventure and I was alone. There is a constant nagging in the back of my mind that the phone will ring and it will be notice of Gary's departure. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It is 4:30 am and I am about to shower and make the sojourn to his facility to sit with him today. I have taken off work during this time to spend with him. I have to slow my mind and body or I will go crazy. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Thanks to all for your prayers and well wishes. </span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com3tag:blogger.com,1999:blog-6600339915875099310.post-86868765204532947382018-01-02T15:32:00.002-08:002018-01-02T15:32:31.291-08:00"This is the Chaplain from Hospice"<span style="font-family: "Trebuchet MS", sans-serif; font-size: large;">My phone rang today.....it was a call from Hospice. Normally, the caller says, "This is so and so from Hospice and this is not an emergency." Not today. The caller said she was the Chaplain from Hospice....and then she paused. I took a breath as I filtered through a wave of emotions. The brain is amazing in that it can go through so many emotions so quickly. </span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">I thought:</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">"Oh no, not today." I felt dread.</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">"Finally....." I felt relief.</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">"I wonder how he died?" I felt curiosity.</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">But, she was not calling to give me bad news, rather to tell me that she prayed over Gary and that "in death and dying, it is important to know that they can still hear." So, she described whispering a prayer in his ear and that she had read him a Bible verse. I thanked her for praying for him. I also told her that this was the first Christmas in 32 years that we did not share our day. (In fact, I neglected to visit him on New Years.....I actually forgot it in my plans.) </span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">We had a short chat about my grief and how I am dealing with it. Of course, I shared the address of this blog and I do hope she will pass it on to other families.</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">After the call, I realized that some emotions that I did not feel during those few quick seconds were grief, sadness, melancholy or regret. I felt neutral. I think I am ready for his death. </span><br />
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<span style="font-family: Trebuchet MS; font-size: large;"></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com1tag:blogger.com,1999:blog-6600339915875099310.post-72066216582458114092017-12-27T15:02:00.002-08:002017-12-27T15:02:58.203-08:00"Ms. Ada, Gary cried listening to Pink Floyd."<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I went away for Christmas and visited my daughter's other family. They accepted me with open arms and I am grateful for the time together and for the fact that I was not alone.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I visited Gary today. He was sitting in the sun room at the memory care unit underneath an exquisite tie dyed blanket. It fit his original personality perfectly. I asked one of the caregivers from whence it came and she said they got all new blankets and everyone knew immediately this was the blanket for Gary. In fact, she told me that despite protests from the other residents that on Christmas she played a Pink Floyd c.d. for him. She said, "Ms. Ada, Gary cried listening to Pink Floyd." So, after trimming his mustache and nails, I played some great rock classics for him. He promptly fell asleep. As I sat next to him, I felt a loss.....not so much for my husband but for the man who could entertain a room and brighten everyone's day. His eyes have no life left. I saw no tears. I cried no tears. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Various people who loved him read this blog and contact me privately to ask about services. They too know he is slipping quickly. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Meanwhile, I live life. The family is headed to Disneyland on Saturday. </span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-3372576100385275332017-12-19T13:05:00.003-08:002017-12-19T13:06:36.459-08:00Familiar Faces Fading<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I drew a deep breath as I walked into the Memory Unit where my husband Gary lives. Nothing in particular caused the stirring in my soul but I felt the need to actively breathe. I had not been there in over a week and did not know what to expect. I never do.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">He was seated at the dinner table waiting on his food. Well, he was not waiting nor did he have any visible awareness of his surroundings nor existence. I kissed him on the head and sat next to him. He was leaning over so far due to his atrophy that kissing him on his lips is no longer a viable idea. The top of his head will have to do.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">His eyes were open. When his juice and water came, I fed it to him with a spoon. The consistency is that of jello. He "drank" most of it. What did not go in his mouth landed on his bib. The angle created by his spinal atrophy makes it difficult to get anything in his mouth.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">The food came and I struggled through dinner.</span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">He ate willingly as I fed him with a fork. He still chews and swallows. His eyes water constantly. I read somewhere that tearing can be caused by slight aspiration. There were no signs of that today....just the tearing.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">As I looked around the room, I looked for familiar faces. Of the 24 patients on the unit, very few are the original residents there when Gary moved in to the unit. Most were either moved or have died. As I sat there watching the varying levels of decline, I felt a remarked heaviness. I look at Gary differently now. I no longer feel "lovey-dovey love" rather a "I feel sorry for him love". </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">My husband is gone in every way but physical. I hope he goes soon. I have accepted it. My sadness now is not so much for our departed relationship but that the disease takes away all life. It is so unfair. I left him with another kiss on the head and told him that I would see him after Christmas. Maybe....</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">Today, I spoke to a nursing class at my University about the importance of Advanced Directives. I am morphing away from the caregiver role but hopefully I can draw on my years of experience to assist others in some way. I was able to talk about Gary's illness, the deaths of my father and sister without any drama or emotion. </span></div>
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<br />Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-49294260625500831712017-12-10T03:31:00.002-08:002017-12-10T03:32:14.347-08:00I am okay!<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">For the past few weeks, I have been waking up in the early morning around 2 or 3 o'clock...no reason other than what I call Monkey Mind. Today's awakening happened at 1:58 am. I am currently sitting in my bed typing. </span><br />
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<span style="font-family: "trebuchet ms"; font-size: large;">These moments give one a quiet time to think, reminisce, contemplate and dream. I often think of Gary in these times but not nearly as much since so much time has passed since he went to Memory Care. I don't miss him here at home because I bought a house and moved since he was admitted. He has never been here. I have found distractions to take place of the hours I used to spend care giving.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">I stopped by the pharmacy yesterday to purchase a new beard and mustache trimmer. His old one was not working properly and he has been looking rather sloppy. In fact, some days he has pureed food stuck in his mustache. Yuk. To be honest, I did not buy a new trimmer before yesterday because I kept thinking he was going to die. I didn't see the point. How selfish of me. </span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">So, I bought a new one and proceeded to the visit. He was awake and in the living room of the unit. He was watching the other residents in a planned activity of batting each other with "noodles" or Styrofoam sticks. I took him in his room and used the new tool. He looked much better and more like my former Gary.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">There is a void in his eyes that is bigger and deeper than the immediate past. As many of you know, I have really struggled and belabored in the past few months wondering why he is still hanging out here on Planet Earth.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">This past week, I had some help from our CPA and together, we figured it out....quite by accident. For 10 years, this woman has prepared our taxes and has seen the height and depth of Gary's business ventures. I asked her what my tax hit was going to be related to a recent transaction because I was expecting heavy capital gains. I knew it could be steep and I wanted to properly plan for April 15.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">She asked many questions, prodded the facts and figures and had a revelation. She indicated that we had a significant investment loss a few years back that we could never claim as we did not have the income to offset it. We can use it this year and there will be no significant tax hit. She also said that had Gary died already, I would not have been able to use 50% of it. All things considered, Gary is saving me six figures. She said to me, "Ada, that is why he is still here. You know Gary, he was always finding loopholes and he just gave you another one!"</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">At that moment, while reveling in the truth, I felt the most quiet, contented peace. I have continued to feel it all week. The angst of why Gary is hanging on no longer bothers me. It feels good to be free of that disturbing wonder.</span></div>
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<span style="font-family: "trebuchet ms"; font-size: large;">So, today at church I will be lighting the Advent Candle with another lady from the congregation. Another chapter of my life on the new adventure of being a "single" begins. </span></div>
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<br />Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com2tag:blogger.com,1999:blog-6600339915875099310.post-41572847168759958682017-12-04T13:17:00.001-08:002017-12-04T13:26:27.270-08:00Not sure what this means.....<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I walked into my Gary's Memory Unit on Saturday and was greeted by a caregiver.....well, I am always greeted by one of them as they have to let visitors in the unit by using a locking code. She quickly told me that Gary had a new roommate. I asked about his abilities and Memory Status so I know how to act while in the room. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I walked past the living area where I knew Gary was sitting and went back to his room. Outside his room was a pants rack with Gary's blazer and dress slacks. This was odd. Most clothing that hangs in that hallway is used for reminiscing decor. Specifically, women's hats, dress up gowns, etc.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I found it strange that Gary is still alive but his clothes had been entered into the inventory of memory joggers. I said nothing to anyone and went back to say hi to my non-emotional husband. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">One of the angels was feeding him his thickened water with a spoon. He has water spilled down his t-shirt and also water coagulated in his mustache. She arose and knew that I would take over giving him water. I retrieved a straw and he promptly drank it all quickly. For some reason, he drinks it that way for me but when one of them tries, he chews the straw. Go figure.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It seems like many of my visits now are to supplement the care-giving done by the Unit and by Hospice. I trimmed his nails, mustache and used a q-tip to remove an excessive amount of ear wax from his ears. He did not seem to notice or care about any of this. As I perform these actions, I talk to him the whole time. I call him by his nicknames "Baberoon, Garball, etc." If he has any recollections, at least he knows that someone who loved him is there. He often grabs my hand and will not let go.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">He often has a tear roll down his cheek. I wipe it away and tell him I love him. That is all I can do.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">He fell asleep and I left. I thought of the deaths that have occurred since he started living there a year and a half ago. So many lives are impacted by this horrible disease. My life has changed significantly and evolved....I have to honestly say my life is better than it has been in years. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I am blessed to have had a wonderful marriage for 32 years. I am ready to see what is next for me as Gary moves toward going home to Heaven. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-1115267976511774862017-11-26T09:18:00.001-08:002017-11-26T09:22:31.108-08:00He is here in Spirit.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">As many of you know, my husband lives in a Memory Care Unit under the care of fantastic caregivers/angels and of course, Hospice. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">We are all shocked that he is still alive. Here he is yesterday right before falling asleep during a Frank Sinatra sing-a-long. Frankly, had I not left, I too would have fallen asleep.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">He held my hand as he fell asleep.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">It is amazing to me that all the folks who live in the unit with him have some form of Alzheimer's or Dementia. To look at some, they seem perfectly "Normal" until they talk. Others look afflicted, like Gary. I do not understand why this disease exists. It serves no purpose other than to give caregivers jobs and to support vendors who have built a business around it. Then, there are the families.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">On Thanksgiving, I watched families come and go. Some handle the disease well....others have no concept of the depth of it due to denial. I watched one son show pictures of family to him (like I've done many times) hoping for some shred of recognition. The act is not for the patient but rather the loved one. The patient doesn't give a flip. We all hold on to some hope that recognition will be there for some short moment. I like to think I know better and that Gary is gone and will not "pop" back. But the truth is....I still go there to visit the body that is Gary. Not the personality.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">I bought a new home a few months back and decided to buy some new Christmas decorations and decorate the last two days. So many memories flooded my mind about Christmases past with Gary. They were all charming memories. We decided years ago to not buy each other gifts at Christmas but rather make memories throughout the year. Ironically, only I have the memories. He will never step foot in this house that I now call home. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">When I first met Gary in 1985, he drove a VW Camper Van. My the good times we had in it...before and after marriage. It died a slow, rusty death in 1988. Somehow, those who knew him back then tend to think of him as an old hippie turned "yuppie" turned entrepreneur turned investor turned dementia patient. So, yesterday as I was checking out the new Christmas decorations, I saw a large VW van figurine with a Christmas tree on top right next to the cashier...it was meant for me.... I had to buy it....</span><br />
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<a href="https://2.bp.blogspot.com/-lrLzX8yhV98/Whr2WWJnpzI/AAAAAAAAI_g/bxkdjDx3hUMEKQxOYP6VWg8HZhrtzxWwACLcBGAs/s1600/VW%2BVan%2B11-25-17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://2.bp.blogspot.com/-lrLzX8yhV98/Whr2WWJnpzI/AAAAAAAAI_g/bxkdjDx3hUMEKQxOYP6VWg8HZhrtzxWwACLcBGAs/s320/VW%2BVan%2B11-25-17.jpg" width="240" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Later, when I had finished all decorations, I found the perfect spot for the van. On the front porch, at the entrance of the home. While he will never come in that door, he is here in spirit.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;">Merry Christmas season, Gary.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br /></span>Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com2tag:blogger.com,1999:blog-6600339915875099310.post-31355883826485967122017-11-22T05:44:00.000-08:002017-11-22T05:44:03.995-08:00Missed Call: Hospice Nurse Betty<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">While I keep my phone with me most of the time, due to circumstances I don't always have the ringer activated. Such was the case yesterday. During a meeting around 2:00, I glanced down and saw the following:</span><div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">My heart always leaps when I get a call from anyone at Hospice, even the music therapist. After all, its never a call to give GOOD news....</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I read the voice to text version of her email. Since my version of this application is not perfected, all I could understand from the message was that nothing was an emergency but morphine was also in the sentence....the two don't necessarily go together, so scratching my head, I called Nurse Betty.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">She promptly answered my call and explained that Hospice had been called in the middle of the night because Gary was "screaming in pain". Since he is non-verbal, the situation was rather unusual and of course, no one could detect his pain. So, they administered morphine and he slept the rest of the night. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">She was calling me to let me know that he was better and had eaten all his breakfast and lunch. She was acting as if I had known about the events from the night before.....no one had called me. I was livid. Then again, I could not have done anything but worry. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I expressed my discontent with the situation. We determined that the last time he was "screaming" was two years ago related to arthritis in his hips. They had stopped the supplement which aided his pain so I told her I would bring some over that afternoon.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Fast forward past the trip to the Emergency Room to determine if my ankle was broken (its a sprain) and past the trip to Sprouts Grocery to pick up the MSM promised to Nurse Betty. I arrived at Sunrise to find Gary being wheeled out of his room, freshly groomed and up for dinner after a peaceful afternoon nap. I guess morphine helped with the peaceful part. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I rolled him over to the table and hugged on him. His eyes were wide and showed no signs of immediate distress. I sought out the Manager to inquire about the night before and the events that transpired. She had been called at 3:30 am by one of the caregiver/angels. She reported that while walking past Gary's room she heard him making a very loud noise that was described as a cross between a groan and clearing his throat. He often makes a noise while eating that has a lower volume than described here. It was determined that he was in pain and they ordered the morphine. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I expressed that I was concerned that no one called me. Was it the Unit's responsibility or Hospice? I didn't care but asked to be called in the future.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I returned to his side and fed him dinner. During the dinner, he again started making this noise. It was a gutteral, ear piercing sound. I cannot truly describe it but the brain is led to think he is either choking, in pain or distressed. He was breathing so I knew it was not choking. The son and daughter of one of the other residents were also sitting at the table. Everyone stays so calm as we know the events that occur at any moment of days in the Memory Unit could be pivotal in all their lives. The son, a man about my age, looked at Gary with compassion and a mix of horror. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">We carried on our conversations as I rubbed Gary's back, neck and head. It was if he was trying to tell me something in his noises. I imagined that the noise was him trying to find his voice. I asked him what he was trying to say. Of course, he could say nothing. His eyes were full of torture while at the same time, completely void of feeling...it is difficult to describe if one has never seen the Dementia stare.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">I will never know what he was thinking or trying to tell us. As one of the angels walked back and forth taking care of other residents, his eyes followed her. Back and forth. He was watching her....I have no doubt. This is a behavior not exhibited by him in many months. He looked so desperate even though his noises had stopped. As he began to fall asleep I dismissed myself from the table and we all said our "so longs" until Thursday's Thanksgiving lunch. We all assume that our family members will still be alive two days from now. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Hospice. Morphine. Screaming. Fear. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Those are all terms that are a real part of Gary's life. It is pitiful I am coping. I await the next phase of his death and of my life. They are polar opposite in their direction.</span></div>
Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0tag:blogger.com,1999:blog-6600339915875099310.post-20321879190075835892017-11-19T09:14:00.000-08:002017-11-19T09:14:14.893-08:00Am I really ready for his death?<span style="font-family: "Trebuchet MS", sans-serif; font-size: large;">Sometimes life has a way of smacking us across the face and behind the head and kick us in the shins.....other times, it quietly taps us on the shoulder and whispers in our ears "Hey, you aren't paying attention. Wake up."</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">This year I have experienced the smacks, kicks and pain of the following:</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">My father died in February</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">My sister died a week later</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">I totaled my car and could have died</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">I bought a house that has had "issues"</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">I had a cancer scare</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">I had surgery</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">My car has been in the shop for three weeks now....</span><br />
<span style="font-family: Trebuchet MS; font-size: large;">and.....my husband is in hospice with Frontotemporal Degeneration.</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">All those things have kept me busy this year along with a few other distractions that won't be listed here....</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">However, this morning, I opened Facebook and one of the caregivers from a FTD group has posted the link to this Ted Talk.</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;"><a href="https://www.ted.com/talks/beth_malone_how_my_dad_s_dementia_changed_my_idea_of_death_and_life?utm_source=facebook.com&utm_medium=social&utm_campaign=tedspread--b">https://www.ted.com/talks/beth_malone_how_my_dad_s_dementia_changed_my_idea_of_death_and_life?utm_source=facebook.com&utm_medium=social&utm_campaign=tedspread--b</a></span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">I was in my bed enjoying my morning coffee when I clicked on the video. It starts with a young woman saying that her father has FTD and she wants to kill him. She was serious. Well, watch the video and you will see why all those of us who care for FTD patients have felt the same way at one point or another. </span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">As her story unfolded, I started feeling her angst. I have lived it. She references a time when after she thought her father's personality and spirit had left his body and remaining was a shell of the man. This is when she considers "getting him out of that body". Then something happens that makes her realize that his spirit is still connected to his body and she commits to continuing visiting and watching him "live".</span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">That story was the quiet "tapping on the shoulder" that I referenced above in the opening paragraph. It said to me that despite the stare, lack of response and gone-ness of my husband's personality that he is still there. I see small signs of it every so often. Rarely. I have ignored them so its easier to let go. Its easier to rationalize why I don't go there and sit with him very often. </span><br />
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<span style="font-family: Trebuchet MS; font-size: large;">Soon, he will be gone for good. When the spirit leaves the body and he goes to be with his Lord, what will I do? What will I feel? Recently and up to this morning, I thought I was ready for his death. But after watching that powerful talk on YouTube, I am no so sure. </span><br />
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<br />Ada Gerardhttp://www.blogger.com/profile/05891558720454654583noreply@blogger.com0