First, I would like to say welcome to all those who have joined recently joined TP..
@HopeAndStrength, @Lilstar
My hubby and I are many years into his diagnosis...17 to be exact. My hubby was 49 and is now 66. ON the outisde he is still a handsome man, well turned out, manicured and smart looking guy and looks so fit. But only a brief moment of closer inspection, then outsiders realize there is very little left of this man mentally.
Since the diagnosis, all four kids have graduated from university , 2 weddings, and 7 grandchildren.Our youngest child was 11 at diagnosis.
The first years, I was so angry about everything, particularly the change in lifestyle and irrationally felt abandoned by him. Life is definitely different from what my expectations were before this disease. But those feelings and issues passed and we just kept living one day at a time.
In the early years, he could still drive and bless him function at a process level (washing up, folding laundry, doing a little gardening) , eating on his own, helping around our home. We made sure he had plenty of exercise and when he started getting lost, I hired walkers to go with him when I could not. (12 to 15 hours each week of strenuous exercise). The trials he uses are less and less challenging but he is still walking. We used Aricept in the the early years, and he participated in two Novartis clinical drug trials.
But the disease is progresses and it will have its way ....but there has been plenty of joy along the way.
I am grateful to the advice I have received early on about finding and getting helpers to assist and relieve me with his care. People to help with the walking have changed into people who can help with the physical caring and provide me with relief so that I have been able to continue to have a life outside my relationship with him. Luckily , he was accustomed to the idea of staff so never rejected individuals who have been vital to him staying at home with me. I could not do everything without all the help I receive.
I am blessed in that his family of origin have been loving and as supportive as they can be from the UK. And to our two children who live near by who are also caring and supportive. It is more difficult for the two kids abroad but they do their best to stay in contact.
Today, he is completely dependent. He needs help dressing, cutting up and eating his food, understanding where he is in the house, where to sit in a room, but he can still walk and is physically pretty darn fit. He goes to daycare two days each week. (His brother and sister in law generously fund one day a week at the moment...not forever but this year, which is a great gift for me and for him as he is surrounded by patience kind understanding professionals) he does not speak much and struggles with language, but can still make himself understood most of the time.
Last week, we went to Italian lakes, I took with us a young woman from Windsor ( who now lives here) who has been helping me care for him at home. We had a wonderful time and I had some companionship in the evenings ...someone to play games with, someone to talk to me and enjoy the views. We took the train and I would not have been able to do this without a carer coming with me. It was quite wonderful.It can be tricky keeping an eye on Nick as he no longer always recognizes me and will wonder off and follow anyone who is around him. So busy public tourists places can be stressful for me as I must always be alert to exactly where he is. But with the carer it was very pleasant. I was more relaxed knowing there were two of us.
He did pretty well with all the strangeness and when he just got too super anxious in the evenings, I gave him his medication Dipiperon. I do not give it everyday only when he is seriously disturbed or anxious. It changes in the past there were days when he needed it to relax and sleep, Things change and at the moment he does not often require such medication, but I am not afraid to use when I think he needs it. It has been helpful over the years.Twice in nine days of holiday....pretty good I think. There were weird things like he would not sit on the balcony, it made him nervous and frightened...no matter what we did. His perception is not what it was and he often has concerns about heights these days.
@northumberian_k –Enjoy your Chicago trip. I want to take a trip all on my own, I will try to make the arrangements but that is an expensive undertaking and I am not sure when I will get a chance to travel completely alone again. I went to Copenhagen last summer for three days alone....and it worked out. But I would like to travel to the USA and it would mean a longer journey and longer time away which is costly. So, I am not sure when I will visit my homeland again….
@HopeAndStrength, @Lilstar
My hubby and I are many years into his diagnosis...17 to be exact. My hubby was 49 and is now 66. ON the outisde he is still a handsome man, well turned out, manicured and smart looking guy and looks so fit. But only a brief moment of closer inspection, then outsiders realize there is very little left of this man mentally.
Since the diagnosis, all four kids have graduated from university , 2 weddings, and 7 grandchildren.Our youngest child was 11 at diagnosis.
The first years, I was so angry about everything, particularly the change in lifestyle and irrationally felt abandoned by him. Life is definitely different from what my expectations were before this disease. But those feelings and issues passed and we just kept living one day at a time.
In the early years, he could still drive and bless him function at a process level (washing up, folding laundry, doing a little gardening) , eating on his own, helping around our home. We made sure he had plenty of exercise and when he started getting lost, I hired walkers to go with him when I could not. (12 to 15 hours each week of strenuous exercise). The trials he uses are less and less challenging but he is still walking. We used Aricept in the the early years, and he participated in two Novartis clinical drug trials.
But the disease is progresses and it will have its way ....but there has been plenty of joy along the way.
I am grateful to the advice I have received early on about finding and getting helpers to assist and relieve me with his care. People to help with the walking have changed into people who can help with the physical caring and provide me with relief so that I have been able to continue to have a life outside my relationship with him. Luckily , he was accustomed to the idea of staff so never rejected individuals who have been vital to him staying at home with me. I could not do everything without all the help I receive.
I am blessed in that his family of origin have been loving and as supportive as they can be from the UK. And to our two children who live near by who are also caring and supportive. It is more difficult for the two kids abroad but they do their best to stay in contact.
Today, he is completely dependent. He needs help dressing, cutting up and eating his food, understanding where he is in the house, where to sit in a room, but he can still walk and is physically pretty darn fit. He goes to daycare two days each week. (His brother and sister in law generously fund one day a week at the moment...not forever but this year, which is a great gift for me and for him as he is surrounded by patience kind understanding professionals) he does not speak much and struggles with language, but can still make himself understood most of the time.
Last week, we went to Italian lakes, I took with us a young woman from Windsor ( who now lives here) who has been helping me care for him at home. We had a wonderful time and I had some companionship in the evenings ...someone to play games with, someone to talk to me and enjoy the views. We took the train and I would not have been able to do this without a carer coming with me. It was quite wonderful.It can be tricky keeping an eye on Nick as he no longer always recognizes me and will wonder off and follow anyone who is around him. So busy public tourists places can be stressful for me as I must always be alert to exactly where he is. But with the carer it was very pleasant. I was more relaxed knowing there were two of us.
He did pretty well with all the strangeness and when he just got too super anxious in the evenings, I gave him his medication Dipiperon. I do not give it everyday only when he is seriously disturbed or anxious. It changes in the past there were days when he needed it to relax and sleep, Things change and at the moment he does not often require such medication, but I am not afraid to use when I think he needs it. It has been helpful over the years.Twice in nine days of holiday....pretty good I think. There were weird things like he would not sit on the balcony, it made him nervous and frightened...no matter what we did. His perception is not what it was and he often has concerns about heights these days.
@northumberian_k –Enjoy your Chicago trip. I want to take a trip all on my own, I will try to make the arrangements but that is an expensive undertaking and I am not sure when I will get a chance to travel completely alone again. I went to Copenhagen last summer for three days alone....and it worked out. But I would like to travel to the USA and it would mean a longer journey and longer time away which is costly. So, I am not sure when I will visit my homeland again….
