I sit here wondering if I post to "partner w/dementia", "end of life", "coping with loss" as I feel I am dealing with all situations. Forgive me for the long story - I've been keeping it in too long.
My OH was progressing through the disease slowly, and I always felt I had it easy compared to others here on TP. His psychiatrist wanted me to put him in care 2-years ago and I thought he was crazy as it was "easy" to care for him. That all changed in December last year. After 5-days in respite he came out an entirely different person and had advanced dramatically. Normally a gentle soul, he became agitated all the time, and in some cases he was violent if my son or I would try to help him. He was not incontinent when he went in but he came out double incontinent and would not let me help him get changed or showered. He could no longer dress himself which was not an issue before the respite. He feared being in a room with closed doors and would yell and pound on the doors even if I was in the room with him. Then he could not find his way around the house anymore. He also spit pills out which had never been an issue and would not let the caregivers in the house to help him. He would yell and scream at them and scare them away so we had to cancel the help.
On December 27th after the full month of challenges and then 5 extremely rough days in a row over the holidays I called our family doctor in tears and she recommended we take him to hospital as we were no longer safe with him in the house. After a half hour of trying to get his shoes and jacket on my son literally had to bear-hug him and carry him to put him in the car. At the hospital he was calm for about an hour of the wait and then he went into a violent rage yelling and screaming and pounding on my son in the middle of the waiting area until 4 strong men where able to get a hold of him, strap him down, and sedate him.
After 18 days on the regular ward under various heavy medications they moved him to what is called "Path". Path is a waiting ward until the next stage is figured out and a bed would be found for him in a CH. On the 20th of January his mom came in from out of town to see him and we had great news - he was stable on medication and would be on the list for a CH. The very next day he became violent and stayed that way until the 10th of February. So he was off the wait list, on new medications, and awaiting the next decision. (I believe his mom visiting is what set him off as he isn't able to speak clearly and I think he was upset that she was seeing him like he is).
On February 20th he was moved to a tertiary care unit (sectioned) in a community close by where they hope to get him stabilized for placement in a special care unit of a care home as he will always need 24/7 care. I've been told it could take 6-24 months. I've also been told that now they think he has Alzheimer's and Frontal Temporal Dementia due to how he is presenting. He now also has the spastic twitches and jerks associated with FTD and is down to 150 pounds (he had gained wait over the winter and then lost 5 pounds since Christmas Day even though he still eats quite well).
When I visit him now he is calm due to medications (which they continue to make adjustments to according to his symptoms) but he does not see me. He is in a world of his own and only mumbles things that makes no sense at all, and I think he sees things as he reaches out to the air as if to grab something. Once is awhile he will yell something quite clearly but it is usually a series of swear words. Around the 21st of January he could walk at great speeds around the ward just holding someone's hand, and now he cannot walk at all. They say it is due to the spasms and jerks he suffers as they have weakened his legs. Even with support he cannot hold himself anymore so he is safety strapped in a chair or in bed. Although he eats well he has to be fed and it is a slow process and now he can no longer just drink from a cup but must take a mouthful at a time to figure out how to swallow it. I usually try to plan my visits 3-times a week around a meal time so I can feed him and see how he is doing.
When I see him I leave with this overwhelming sense of loss and I truly believe that at the rate he is deteriorating he won't see the end of the year. We are in the 8th year of knowing we were living with this disease and I have felt every stage of grief quite a few times over. Now it hangs over me daily with this heavy sense of loss even though he is still physically there. It is so hard to see the face I have loved for 40 years, and know that the person I love isn't there anymore - not a trace. It is almost more painful now that he is in care as I can see him without carrying the full responsibility of daily care for him and I remember all that was once good and miss it so much.
So, like the last few months, today is another day where I will put on a brave face and put one foot in front of the other to get through the day with emotions that sit below the surface. I am thankful you are all here and appreciate that I can spill this out to others who know the pain of walking this journey.
My OH was progressing through the disease slowly, and I always felt I had it easy compared to others here on TP. His psychiatrist wanted me to put him in care 2-years ago and I thought he was crazy as it was "easy" to care for him. That all changed in December last year. After 5-days in respite he came out an entirely different person and had advanced dramatically. Normally a gentle soul, he became agitated all the time, and in some cases he was violent if my son or I would try to help him. He was not incontinent when he went in but he came out double incontinent and would not let me help him get changed or showered. He could no longer dress himself which was not an issue before the respite. He feared being in a room with closed doors and would yell and pound on the doors even if I was in the room with him. Then he could not find his way around the house anymore. He also spit pills out which had never been an issue and would not let the caregivers in the house to help him. He would yell and scream at them and scare them away so we had to cancel the help.
On December 27th after the full month of challenges and then 5 extremely rough days in a row over the holidays I called our family doctor in tears and she recommended we take him to hospital as we were no longer safe with him in the house. After a half hour of trying to get his shoes and jacket on my son literally had to bear-hug him and carry him to put him in the car. At the hospital he was calm for about an hour of the wait and then he went into a violent rage yelling and screaming and pounding on my son in the middle of the waiting area until 4 strong men where able to get a hold of him, strap him down, and sedate him.
After 18 days on the regular ward under various heavy medications they moved him to what is called "Path". Path is a waiting ward until the next stage is figured out and a bed would be found for him in a CH. On the 20th of January his mom came in from out of town to see him and we had great news - he was stable on medication and would be on the list for a CH. The very next day he became violent and stayed that way until the 10th of February. So he was off the wait list, on new medications, and awaiting the next decision. (I believe his mom visiting is what set him off as he isn't able to speak clearly and I think he was upset that she was seeing him like he is).
On February 20th he was moved to a tertiary care unit (sectioned) in a community close by where they hope to get him stabilized for placement in a special care unit of a care home as he will always need 24/7 care. I've been told it could take 6-24 months. I've also been told that now they think he has Alzheimer's and Frontal Temporal Dementia due to how he is presenting. He now also has the spastic twitches and jerks associated with FTD and is down to 150 pounds (he had gained wait over the winter and then lost 5 pounds since Christmas Day even though he still eats quite well).
When I visit him now he is calm due to medications (which they continue to make adjustments to according to his symptoms) but he does not see me. He is in a world of his own and only mumbles things that makes no sense at all, and I think he sees things as he reaches out to the air as if to grab something. Once is awhile he will yell something quite clearly but it is usually a series of swear words. Around the 21st of January he could walk at great speeds around the ward just holding someone's hand, and now he cannot walk at all. They say it is due to the spasms and jerks he suffers as they have weakened his legs. Even with support he cannot hold himself anymore so he is safety strapped in a chair or in bed. Although he eats well he has to be fed and it is a slow process and now he can no longer just drink from a cup but must take a mouthful at a time to figure out how to swallow it. I usually try to plan my visits 3-times a week around a meal time so I can feed him and see how he is doing.
When I see him I leave with this overwhelming sense of loss and I truly believe that at the rate he is deteriorating he won't see the end of the year. We are in the 8th year of knowing we were living with this disease and I have felt every stage of grief quite a few times over. Now it hangs over me daily with this heavy sense of loss even though he is still physically there. It is so hard to see the face I have loved for 40 years, and know that the person I love isn't there anymore - not a trace. It is almost more painful now that he is in care as I can see him without carrying the full responsibility of daily care for him and I remember all that was once good and miss it so much.
So, like the last few months, today is another day where I will put on a brave face and put one foot in front of the other to get through the day with emotions that sit below the surface. I am thankful you are all here and appreciate that I can spill this out to others who know the pain of walking this journey.
