Three Years Later

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.  

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.  

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 what I should write.

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. 

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.  

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.

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. 

I will always be a caregiver - the role just changed!

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.

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.  

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.

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.

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.

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.  

He understands times when I still get teary over old pictures or am reminded of good times.  He is precious to me.

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.  

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 was 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. 

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. 

Dreams of a Healthy Husband

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.

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. 

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.

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.

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.

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.

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.

I don't really know what any of this meant and I can only assume it is a coincidence. 

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. 

He was helpless...or was he?

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.

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!)

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.  

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. 

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.

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.

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. 

Happy Birthday in Heaven, Gary!

My late husband Gary would have celebrated his 70th birthday today had he lived.  Frontotemporal Degeneration (FTD) robbed him of that celebration.

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:

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.  

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.  

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.  

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.

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. 

No One Here Knows Gary

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.

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.  

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. 

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.

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.

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.

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.

Life Changes - a Three Year Journey

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.

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.

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.

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.  

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. 

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.

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.

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.  

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.  

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.  

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. Sometime during all these end of life adventures, I found me again.  

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. 

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.  

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.  

Haunted by the Disease

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. 

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.  

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.

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. 

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.

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.

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.

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?  

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.

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.

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.

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.

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.

There is hope after the "stare".

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. 

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.

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.  

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.

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.

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.

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.  

Spreading Gary's Ashes

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.  

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.  
It has been years since I hiked so going up a wet surface was tough.

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.  

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.

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. 

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.

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.  

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. 

Life has started over again.....

Life has started over again despite the setbacks of the impact of Frontotemporal Degeneration on the life of my husband, me and our family.

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.  

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. 

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.

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.

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. 

Inhale. Exhale. Inhale. Exhale.

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.

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.

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.

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.

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. 

Two months since his death.

It has been nearly two months since my husband of 32 years died from the results of Frontotemporal Degeneration (FTD - Dementia).

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:

Warning:  the following thoughts are unfiltered :)

• I am doing just fine, thank you.
• How do you think I'm doing?  I just lost my husband?
• 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!
• I am happy that I can now start my life over!
• I'm scared because I am alone for the first time in my life!
• I am confident that I can take care of myself since I've been taking care of myself AND Gary for many years.
• I want to go on another vacation.
• I want to find the second man of my dreams and live happily ever after!
• Go screw yourself, do you just want to see me cry?
• Everyday I feel more stress leaving my body.
• Why does God put certain people in our lives and then take them away?

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.

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. 

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.  

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.  

Sunsets and Sunrises of Life after Dementia

It has been 12 days since Gary died of the effects of Frontotemporal Degeneration (FTD). 

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.

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.

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.  

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. 

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. 

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.  

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.

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.

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.

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. 

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.

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.

Then, in an opposite direction there appeared a small black cloud. 

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

Then, just like my life, in an instant, that cloud changed and had color.

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.

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.

I then changed my body which changed my view.  Behind that mountain, the sunrise was again changing.  Just like our lives.

I sat there for another 1/2 hour and soaked in nature.  

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.

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....

  

Gary's Journey has ended. Rest in Peace dear one.

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.

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 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."

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.  

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.

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.

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. 

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.

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.

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.

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.  

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.

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. 

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.

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.  

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. 

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.

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.

Mine is just beginning.

The last days....

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.

Some of these caregivers have cried more than me when working with Gary.  They are all professionals but humans first. I am simply numb.

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 here.  

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.

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. 

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."

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.

I will write again when he is officially gone...with God's will, it won't be long.