I have not visited Gary much lately. Our dear friend Shirley came down from Portland last weekend to visit us and we went to see him three times. She was moved by the experience as evidenced by her tears and subsequent conversations.
It is difficult seeing the transition from what was a brilliant mind to that mind of today.
In my last post, I announced (in essence) that I was taking back what control of my life that I can and that I am thinking differently and making decisions for me. I have done that since I committed to it.
Through the help of special friends, I am getting my energy back. I am separating from the negative emotions I have been feeling for a period of time for which I can no longer track to the beginning.
I stopped by to see Gary briefly today. He stared at me. He seemed to know me but had no reaction. I hurried out of there as this morning I started a project at home.
This morning, I began purging and bagging all of Gary's clothes. I boxed his dress shoes and casual shoes in separate boxes. I used Hefty flex bags to hold all the shirts, pants, swimsuits, khakis, hiking clothes, etc. It was 12 bags full. I will give them to charity. He will never need them.
I did not finish. I still have his dress clothes, neckties, t-shirt collection, coats, jackets and shorts. I just could not do anymore today. I will do it soon.
Upon finishing, there was a catharsis that existed. It was magical. I have let go. I can't tell you how exciting it is.
I will always love Gary. I hate Frontotemporal Degeneration.
I am surviving and starting to get happy.
Saturday, January 28, 2017
Sunday, January 15, 2017
"Bloggers Want To Know..."
What a fantastic week....for me, at least. Life at the University is full of excitement and advancement every month but January seems to be particularly fulfilling. Especially when my initiatives are working and my teams are on top of their game.
Many nights, while driving home or to see Gary, I often reminisce of days when I would call Gary on my way home from wherever I was and share my day. He would listen, ask questions, provide insight and share in my professional growth. Those days are gone. I don't even sit and talk with him hoping for a glimmer of that side of him....there is no point. Don't feel sorry for me when you read that. I am over the period of feeling sorry for myself. It just is....I have no emotion tied to those memories anymore.
On Friday, an old friend came to visit. She has seen Gary since he moved into Memory Care so I felt comfortable that her shock in seeing him now would not be so great. We spent Friday evening with her listening to my current thinking about my life, what the future holds and a particular troubling dilemma I have that will not be discussed here other than to say that I am in a very different space about my life, my future. It is a good place.
During that conversation, she asked me for an update on Gary's condition. For avid blog readers, apparently I left out a significant update on his ability to stand anymore...or not stand. He went through one day two weeks ago where he was no longer able to stand and needed to be moved by a mechanical lift. Even our daughter Heather asked me on Saturday morning about his condition by saying "Bloggers want to know!" To all readers, I apologize for leaving you hanging.
That period of decline was temporary and lasted less than 12 hours. I called the next morning and asked about his condition and was told he was back to "normal". Not normal as we know it, but normal that he could stand long enough to have his diaper changed while using a walker as support.
Susan and I spent about a half hour on Saturday with Gary and he never opened his eyes though he was awake. He held her hand and repeated some phrases quietly. I was not expecting much response but we left to go on a day of adventure in Southern California. We toured the Queen Mary and ended our day eating outside and dancing to a swing band at Downtown Disney.
For the past few years, when I could get away and do things, I always found myself full of guilt or having yearnings for having Gary with me or wondering "Wouldn't Gary love this activity?" Due to some new thinking, yesterday contained none of that. I was able to have fun and enjoy myself as a human.
Three times this month old and trusted friends talked sense into me and assisted me to change focus. I never realized how desperately I need to kick the "woe is me" mantra and move on.
I love Gary with all my heart and will take care of him always. He is my husband. I just do not need to live as if the world is ending. Our world together as we knew it has ended, but not the whole world. The Lord has a plan for me to do BIG things. I intend to listen closely and fulfill those plans. Prayers are appreciated as I embark on new adventures! I am receiving some much needed spiritual guidance so everyone relax. I will not do anything stupid.
Many nights, while driving home or to see Gary, I often reminisce of days when I would call Gary on my way home from wherever I was and share my day. He would listen, ask questions, provide insight and share in my professional growth. Those days are gone. I don't even sit and talk with him hoping for a glimmer of that side of him....there is no point. Don't feel sorry for me when you read that. I am over the period of feeling sorry for myself. It just is....I have no emotion tied to those memories anymore.
On Friday, an old friend came to visit. She has seen Gary since he moved into Memory Care so I felt comfortable that her shock in seeing him now would not be so great. We spent Friday evening with her listening to my current thinking about my life, what the future holds and a particular troubling dilemma I have that will not be discussed here other than to say that I am in a very different space about my life, my future. It is a good place.
During that conversation, she asked me for an update on Gary's condition. For avid blog readers, apparently I left out a significant update on his ability to stand anymore...or not stand. He went through one day two weeks ago where he was no longer able to stand and needed to be moved by a mechanical lift. Even our daughter Heather asked me on Saturday morning about his condition by saying "Bloggers want to know!" To all readers, I apologize for leaving you hanging.
That period of decline was temporary and lasted less than 12 hours. I called the next morning and asked about his condition and was told he was back to "normal". Not normal as we know it, but normal that he could stand long enough to have his diaper changed while using a walker as support.
Susan and I spent about a half hour on Saturday with Gary and he never opened his eyes though he was awake. He held her hand and repeated some phrases quietly. I was not expecting much response but we left to go on a day of adventure in Southern California. We toured the Queen Mary and ended our day eating outside and dancing to a swing band at Downtown Disney.
For the past few years, when I could get away and do things, I always found myself full of guilt or having yearnings for having Gary with me or wondering "Wouldn't Gary love this activity?" Due to some new thinking, yesterday contained none of that. I was able to have fun and enjoy myself as a human.
Three times this month old and trusted friends talked sense into me and assisted me to change focus. I never realized how desperately I need to kick the "woe is me" mantra and move on.
I love Gary with all my heart and will take care of him always. He is my husband. I just do not need to live as if the world is ending. Our world together as we knew it has ended, but not the whole world. The Lord has a plan for me to do BIG things. I intend to listen closely and fulfill those plans. Prayers are appreciated as I embark on new adventures! I am receiving some much needed spiritual guidance so everyone relax. I will not do anything stupid.
Thursday, January 12, 2017
A Partial Widow at 53
How can one be a "partial widow"? A dear friend recently used this label for me after I was expressing discontent with not having a normal, healthy husband of 31 years at my side. I was feeling sorry for myself and wondering what life holds for my future.
She has said this to me a couple of times and she is exactly right. I seem to live in this surreal life where I work an Executive Job, have fantastic job satisfaction and yet most nights, I stop by the Memory Care Unit where my husband lives and then I go home. My step daughter and grandson live with me but for the most part, we live separate lives. My husband is not there, physically or mentally. Thus the "partial widow" comment. I grieve for him almost everyday. At least I grieve for the man that was. His body is still there and visible when I visit but for the most part, he is a stranger.
It has been said many times, "Ada, I don't know how you do it." This expression comes from people who have never lived a life with a mentally disabled, terminal spouse. I just keep going everyday and try to find peace in the fact that I am a married woman with no normal marriage. I am a normal female who wants a partner that can meet me half way. I sometimes get bitter. I sometimes get angry. But for the most part, it is incredibly lonely in every way... and all that implies.
Perhaps some day I will have life #2. I, in no way, am anxious for the next step that will occur in this married life. So for now......I will just continue to take one step at a time and know that God is in control and has a plan. Please continue to pray for Gary to have no pain or discomfort.
She has said this to me a couple of times and she is exactly right. I seem to live in this surreal life where I work an Executive Job, have fantastic job satisfaction and yet most nights, I stop by the Memory Care Unit where my husband lives and then I go home. My step daughter and grandson live with me but for the most part, we live separate lives. My husband is not there, physically or mentally. Thus the "partial widow" comment. I grieve for him almost everyday. At least I grieve for the man that was. His body is still there and visible when I visit but for the most part, he is a stranger.
It has been said many times, "Ada, I don't know how you do it." This expression comes from people who have never lived a life with a mentally disabled, terminal spouse. I just keep going everyday and try to find peace in the fact that I am a married woman with no normal marriage. I am a normal female who wants a partner that can meet me half way. I sometimes get bitter. I sometimes get angry. But for the most part, it is incredibly lonely in every way... and all that implies.
Perhaps some day I will have life #2. I, in no way, am anxious for the next step that will occur in this married life. So for now......I will just continue to take one step at a time and know that God is in control and has a plan. Please continue to pray for Gary to have no pain or discomfort.
Saturday, January 7, 2017
"I'm Not Gonna Miss You"
The Hospice Nurse called me last night to tell me that Gary's X-ray came back showing no injuries. No broken bones. So, he has been getting Tylenol as needed. His wrist has been swollen and pained for a couple of weeks.
Today, I reached the "Happy Place" around 10:45 and his hand looked almost normal. He was sitting in his wheelchair among the other residents listening to the Activity Director and mostly snoozing. I said hello but did not pull up a chair next to him because I would have blocked another resident, Nancy's view. I really don't think she knew anything going on and she probably wouldn't have known that I was blocking her view but she is an old lady so I have to be nice.
I felt like a fish out of water because I didn't really want to sit down with the residents so I checked on Gary's room, sorted the clothes in his closet, and plugged in his beard trimmer. I went back to the living area and sat down directly across from Gary about 5 feet away and listened to the stories being shared in the room.
Around 11:45, he suddenly woke up, sat up straighter and looked right at me. I said, "Well, there you are! Hi babes!"
As usual, he had no visible reaction. There is no emotion to be found on his face anymore. Here is the look of FTD.
I fed him lunch. When I first entered the unit this morning, one of the angels stopped me and asked me to bring in a thermos cup with a lid so Gary can pick up his own hot beverage. She says that he tries to pick up the coffee cup and is able to drink, but has coordination issues with sitting it back down and spills the liquid. They tell him that this is okay but she detects that this embarrasses him and then he doesn't try again. She senses that the cup would help him be more independent.
He seemed troubled today. I don't know why he would be other than the fact that maybe today he is more aware of his situation.
I wheeled him into his room for a beard trim. Afterward, I played some songs on my telephone. He showed no reaction. I held his hand and rubbed his arms. I played Glen Campbell's song about Dementia "I'm Not Gonna Miss You". He seemed to listen. It made me sad. Please find the lyrics below:
"I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you
I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry
I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I'm not gonna miss you
I'm not gonna miss you"
Today, I reached the "Happy Place" around 10:45 and his hand looked almost normal. He was sitting in his wheelchair among the other residents listening to the Activity Director and mostly snoozing. I said hello but did not pull up a chair next to him because I would have blocked another resident, Nancy's view. I really don't think she knew anything going on and she probably wouldn't have known that I was blocking her view but she is an old lady so I have to be nice.
I felt like a fish out of water because I didn't really want to sit down with the residents so I checked on Gary's room, sorted the clothes in his closet, and plugged in his beard trimmer. I went back to the living area and sat down directly across from Gary about 5 feet away and listened to the stories being shared in the room.
Around 11:45, he suddenly woke up, sat up straighter and looked right at me. I said, "Well, there you are! Hi babes!"
As usual, he had no visible reaction. There is no emotion to be found on his face anymore. Here is the look of FTD.
He seemed troubled today. I don't know why he would be other than the fact that maybe today he is more aware of his situation.
I wheeled him into his room for a beard trim. Afterward, I played some songs on my telephone. He showed no reaction. I held his hand and rubbed his arms. I played Glen Campbell's song about Dementia "I'm Not Gonna Miss You". He seemed to listen. It made me sad. Please find the lyrics below:
"I'm still here, but yet I'm gone
I don't play guitar or sing my songs
They never defined who I am
The man that loves you 'til the end
You're the last person I will love
You're the last face I will recall
And best of all, I'm not gonna miss you
Not gonna miss you
I'm never gonna hold you like I did
Or say I love you to the kids
You're never gonna see it in my eyes
It's not gonna hurt me when you cry
I'm never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I'm not gonna miss you
I'm not gonna miss you"
Written by Glen Campbell, Julian Raymond • Copyright © Warner/Chappell Music, Inc
I heard the other residents exercising in the other room, so we went there and I attempted to get Gary to move to the commands. Nothing. So, we sat there. I held his hand until he fell asleep.
As I was sitting there watching him sleep, three of the residents began a conversation. The room is very open and there is no privacy. One of them was the others about her mother having Dementia. She explained how her father had taken care of her mother for years and how difficult it was on him. She expressed that she hoped she never got Dementia because she did not want to be a burden on her family. All three of the other ladies also lamented that they, too wished that they never get it. None of them know that they are in a Memory Unit because of Dementia or Cognitive issues. Listening to the conversation was rather surreal.
Then, they started discussing the need for individual phones in their rooms so they can call their loved ones. The devised a plan to go to the office and have a conversation with the manager demanding that phones be installed in all their rooms for a $5 per month fee. They said that when they "check out" and go home that the fee could be transferred to another resident. I was quite impressed with their plan. Then, the phone on the unit rang and one of them said, "Perhaps we should answer it." Another one said, "Oh no. They have a whole bank of operators in the back room that handles all the calls and they will come get us if its for us." Absolutely all of this was fabricated in their minds. However, they all agreed that this information was the truth and they started talking about the weather.
I am always amazed at how God enables these folks to not suffer but instead to carry on as if they were spending the afternoon at a country club. It was beautiful.
Normally, Gary takes a nap and has a routine changing at 2:30. His caregiver came to move him into his room and so, I left. He always needs two people to assist him.
Wal-Mart was the most logical stop for purchasing the cup and some Dixie cups for his dispenser. On the way back home, I stopped by Gary's to drop off the cup. He was sitting out in the hallway wide awake. Something was wrong. The Care Manager came over and explained that for the first time, Gary was unable to help them by standing to move him from the chair to the bed. Apparently, for six months, he has been able to stand long enough for them to safely change him and get him to his nap. Not today.
So, they were retrieving a machine from the Assisted Living Unit that would safely move him to the bed. They were reallocating it to his room when I left again. Wow. Reality. He could be back to his "normal-not-so-normal" self tomorrow or he could now be totally reliant on people moving him. Dead weight. Only the Lord knows what tomorrow brings.
The hardest part of having a spouse with Frontotemporal Dementia is well, everything. I can't heal his disease. I can't live normally without guilt. God is in control and the spouse had no insight. Each phase of this horrible disease is unbelievable.
Wednesday, January 4, 2017
Missing his touch...
Visiting Gary tonight was very special. I had a fabulously successful day at work and was feeling very good leaving work. Traffic was heavy but I got to Gary's Memory Unit quickly and found him sitting in the living area. He kissed me hello and I said hello to all the residents who responded to me.
The angels were dealing with all the residents' individuals needs and deciding on a movie. Gary was particularly awake and confirmed what the care manager told me when I came in. The swelling has decreased in his hand but he is articulating that he has pain. We gave him a pain pill and requested an xray tomorrow.
Meanwhile, I noticed when I bent over to fix his shoe that he started patting my back. I stayed in a bent over position to see if it was a fluke. He continued to caress my back and pat me. It was as if he was aware that I have feelings. I sat up and he moved his caressing to my hair. He felt the back and then moved his hand to the side of my head and stroked my hair. He said, "Your hair is soft." I almost cried. This is more aware and present than he has been in many months.
I told him that I love him and he replied, "I love you, too." I said, "I'm glad you love me. It's easier that way." He sort of smiled and said, "Yes, its easier." Despite the fact that he was repeating words he was hearing on the movie in the background, these were original words and thoughts. Thank you, Lord!
He went back to stroking my hair and arm. I started talking to him as I would have years ago. I told him about my day and that it was successful. After a few minutes, he stopped repeating my words and went back to repeating the words on the movie in the background.
Over the weekend, I had tried to get him to watch the screen when the sailboats were on, but he would not. I thought that tonight, he might watch. I moved him over to a clear view of the screen and moved his chin to where he could see the actor John Candy waterskiing on the screen. He started watching it. His eyes stayed fixed for about 5 minutes of the movie.
I told him goodbye and left. He kissed me goodbye and said that he loves me. Wow. I could not have asked for a greater surprise.
It is amazing that these few moments of recognition are so valuable. I hadn't realized how much I missed his touch. It was if I was starved. I can only imagine how he must feel during times of clarity. He must miss us terribly.....I surely do.
The angels were dealing with all the residents' individuals needs and deciding on a movie. Gary was particularly awake and confirmed what the care manager told me when I came in. The swelling has decreased in his hand but he is articulating that he has pain. We gave him a pain pill and requested an xray tomorrow.
Meanwhile, I noticed when I bent over to fix his shoe that he started patting my back. I stayed in a bent over position to see if it was a fluke. He continued to caress my back and pat me. It was as if he was aware that I have feelings. I sat up and he moved his caressing to my hair. He felt the back and then moved his hand to the side of my head and stroked my hair. He said, "Your hair is soft." I almost cried. This is more aware and present than he has been in many months.
I told him that I love him and he replied, "I love you, too." I said, "I'm glad you love me. It's easier that way." He sort of smiled and said, "Yes, its easier." Despite the fact that he was repeating words he was hearing on the movie in the background, these were original words and thoughts. Thank you, Lord!
He went back to stroking my hair and arm. I started talking to him as I would have years ago. I told him about my day and that it was successful. After a few minutes, he stopped repeating my words and went back to repeating the words on the movie in the background.
Over the weekend, I had tried to get him to watch the screen when the sailboats were on, but he would not. I thought that tonight, he might watch. I moved him over to a clear view of the screen and moved his chin to where he could see the actor John Candy waterskiing on the screen. He started watching it. His eyes stayed fixed for about 5 minutes of the movie.
I told him goodbye and left. He kissed me goodbye and said that he loves me. Wow. I could not have asked for a greater surprise.
It is amazing that these few moments of recognition are so valuable. I hadn't realized how much I missed his touch. It was if I was starved. I can only imagine how he must feel during times of clarity. He must miss us terribly.....I surely do.
Monday, January 2, 2017
"Don't Leave Yet!"
Happy New Year 2017!
After returning from a short family vacation to LEGOLAND and the Safari Park, I went to visit Gary today. I took along a nutritional supplement, MSM with me. He ran out a few months ago and the prescription provider could not get it. We tried a few months without it and I'm convinced part of his issue with his hand is arthritis/joint related. So, I will buy the product and take it in.
He was sitting in the Living Room of the Unit with his eyes tight shut. He was obviously asleep and the angels reported that he did not even wake up when the therapy dogs came to visit. I kissed him on the cheek. No reaction.
It was time for the ambulatory residents to go for a walk upstairs in the Assisted Living Floor. We were asked to go so I pushed Gary in his chair and we made three laps. He was semi awake but it was more visiting time with three of the ladies. We took Annie the dog along and all seemed to need to get out of the memory care unit.
As we arrived in the living area, Gary abruptly awoke. I kissed him and said "Happy New Year". He replied and puckered for a kiss. It was time for lunch so I sat next to him at the table and started to feed him. He picked up his glass and drank his juice out of a straw. He needed a little help sitting it down, but seemed very aware today. Even stranger was the fact that Nancy, 96 years old/non-verbal and always needs help feeding was feeding herself. She picked up her spoon and put three mouthfuls of peas into her mouth and chewed. I acted as if I was not watching so that if she had a moment of clarity, she would not be embarrassed or stop. She then sat back in her chair and refused to eat anymore at that sitting. She was trying desperately to put words together and was adamant about something related to the brown pureed stuff on her plate. We giggled together and then my attention turned back to Gary.
After lunch, we moved to his bedroom to do some trimming and snipping of moustache and fingernails. He chatted and made words but really, nothing made sense at that point.
We moved back to the living area and left to go to the drug store for more combs, shampoo, Body wash and assundries. When I returned, there was a travel documentary on about sailing around the continent of the United States.
Gary loved the sport of sailing so much that he wanted us to go sailing full time. In fact, we spent many years preparing even though we will never go. I tried to show him the screen and show him the sailboats on the screen. He would not look at the television but repeated every nautical term he heard. The entire time, I was holding his hand, stroking his arm, scratching his head and rubbing his legs. I put my head on his shoulder for a few minutes and relished in the closeness that I so desperately miss. He kissed my head and kept repeating what he was hearing on the cruise-show.
I knew that I had to leave and told him that I had to go back to work tomorrow and that I would be by tomorrow night. He grabbed my hand hard and would not let go. He said, "Baberoon, don't leave yet." It does not get any more personal or present than that. Not only did he call me by a loving nickname, but he stated what he wanted.
I sat back down and stayed another half hour. We just sat together and held hands. He would look over at me with that blank FTD stare but I knew by the hand squeezes that he was there.
When I did get up again to leave, he let go of my hand. I told him that I would be back tomorrow night and he said, "Tomorrow night. I love you."
Even a manicure, pedicure and a dinner later, I have very little feelings. I started my diet again today...for real this time. I am supposed to start the book today. I have writer's block. I am not sure where to start. What would Gary want me to say? I'm sure the words will come.
After returning from a short family vacation to LEGOLAND and the Safari Park, I went to visit Gary today. I took along a nutritional supplement, MSM with me. He ran out a few months ago and the prescription provider could not get it. We tried a few months without it and I'm convinced part of his issue with his hand is arthritis/joint related. So, I will buy the product and take it in.
He was sitting in the Living Room of the Unit with his eyes tight shut. He was obviously asleep and the angels reported that he did not even wake up when the therapy dogs came to visit. I kissed him on the cheek. No reaction.
It was time for the ambulatory residents to go for a walk upstairs in the Assisted Living Floor. We were asked to go so I pushed Gary in his chair and we made three laps. He was semi awake but it was more visiting time with three of the ladies. We took Annie the dog along and all seemed to need to get out of the memory care unit.
As we arrived in the living area, Gary abruptly awoke. I kissed him and said "Happy New Year". He replied and puckered for a kiss. It was time for lunch so I sat next to him at the table and started to feed him. He picked up his glass and drank his juice out of a straw. He needed a little help sitting it down, but seemed very aware today. Even stranger was the fact that Nancy, 96 years old/non-verbal and always needs help feeding was feeding herself. She picked up her spoon and put three mouthfuls of peas into her mouth and chewed. I acted as if I was not watching so that if she had a moment of clarity, she would not be embarrassed or stop. She then sat back in her chair and refused to eat anymore at that sitting. She was trying desperately to put words together and was adamant about something related to the brown pureed stuff on her plate. We giggled together and then my attention turned back to Gary.
After lunch, we moved to his bedroom to do some trimming and snipping of moustache and fingernails. He chatted and made words but really, nothing made sense at that point.
We moved back to the living area and left to go to the drug store for more combs, shampoo, Body wash and assundries. When I returned, there was a travel documentary on about sailing around the continent of the United States.
Gary loved the sport of sailing so much that he wanted us to go sailing full time. In fact, we spent many years preparing even though we will never go. I tried to show him the screen and show him the sailboats on the screen. He would not look at the television but repeated every nautical term he heard. The entire time, I was holding his hand, stroking his arm, scratching his head and rubbing his legs. I put my head on his shoulder for a few minutes and relished in the closeness that I so desperately miss. He kissed my head and kept repeating what he was hearing on the cruise-show.
I knew that I had to leave and told him that I had to go back to work tomorrow and that I would be by tomorrow night. He grabbed my hand hard and would not let go. He said, "Baberoon, don't leave yet." It does not get any more personal or present than that. Not only did he call me by a loving nickname, but he stated what he wanted.
I sat back down and stayed another half hour. We just sat together and held hands. He would look over at me with that blank FTD stare but I knew by the hand squeezes that he was there.
When I did get up again to leave, he let go of my hand. I told him that I would be back tomorrow night and he said, "Tomorrow night. I love you."
Even a manicure, pedicure and a dinner later, I have very little feelings. I started my diet again today...for real this time. I am supposed to start the book today. I have writer's block. I am not sure where to start. What would Gary want me to say? I'm sure the words will come.
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