"Dementia is easy to say and easy to write but not so easy to understand"
Tues 3rd Nov.
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Hi There,
My mum was diagnosed with alzheimers with lewey bodies 3 years ago, although we're pretty sure she has had it for 6 years now more or less, initially she would not agree to go to the doctors, then when we did get to the doctors it took around a year for a proper diagnosis. My dad is mums full time carer and i visit every day as does my brother. My sister visits when she can as she does not live locally.
We are all struggling with what to do at the moment. The pressure on my dad is huge, my mum cannot bare him leaving her side. Her anxiety levels are through the roof and we have been told that there is no medication left to try. We had managed to get 3 hours on 2 seperate days at a really good day care centre for mum so my dad had some time for himself, as although me and my brother spend as much time with mum and dad as we can, we both work full time and i run my own business which means i struggle for time off. Unfortunately today we've been told mum needs too much 1 to 1 care, they haven't the staff to cope with her anxiety and we have definately lost 1 day, the other day they are cutting to just 2 hours. We really are at a loss for what to do. Obviously we want to look after mum, but we are increasingly worried about dads health and wellbeing. We are in touch with the alzheimers society, they have been very good, in fact they helped us to get the 2nd day in day care initially. We're just not sure where to turn now..... Any suggestions would be greatly appreciated.
My mum was diagnosed with alzheimers with lewey bodies 3 years ago, although we're pretty sure she has had it for 6 years now more or less, initially she would not agree to go to the doctors, then when we did get to the doctors it took around a year for a proper diagnosis. My dad is mums full time carer and i visit every day as does my brother. My sister visits when she can as she does not live locally.
We are all struggling with what to do at the moment. The pressure on my dad is huge, my mum cannot bare him leaving her side. Her anxiety levels are through the roof and we have been told that there is no medication left to try. We had managed to get 3 hours on 2 seperate days at a really good day care centre for mum so my dad had some time for himself, as although me and my brother spend as much time with mum and dad as we can, we both work full time and i run my own business which means i struggle for time off. Unfortunately today we've been told mum needs too much 1 to 1 care, they haven't the staff to cope with her anxiety and we have definately lost 1 day, the other day they are cutting to just 2 hours. We really are at a loss for what to do. Obviously we want to look after mum, but we are increasingly worried about dads health and wellbeing. We are in touch with the alzheimers society, they have been very good, in fact they helped us to get the 2nd day in day care initially. We're just not sure where to turn now..... Any suggestions would be greatly appreciated.
Dear Caroline
My goodness; it is a nightmare isn't it. Yes, I can give you a few suggestions. I don't know if you will agree but I can only tell you that I was in a very similar situation. For me it was slightly worse as our three sons all lived away and although they visited as frequently as they possibly could, no-one has any idea of what the day to day and yes - night to night - living was really like.
Eventually I was persuaded by my husband's social worker to get some respite care and for four days, despite the guilt and the worry, I was able to step back from the situation and start thinking more clearly. Despite my fears, my husband came home unscathed and fairly cheerful.
Getting respite wasn't easy. I was the one who had to visit (unannounced) several care home until I found what I thought was the best place for him. I told him he was going there to be monitored as he knew that word, but I made sure he didn't see the suitcase that held his his clothes. The social worker supported me with this and she was marvellous.
I didn't visit him but went to stay with a son and had a complete break. I also got the social worker to explain the financial aspects of it all - very important!
It sounds to me that your Mum isn't the only sufferer in all this and eventually serious consideration has got to be given to your father.
In our situation, my husband had two sessions of respite before sheer exhaustion and brain overload finally led to my own illness and my husband went into that same care home full-time. It's hard. It's awful and the only time the guilt left me was when, eventually the care home workers could no longer manage him and he was moved into the hospital situation.
The whole thing - all of it was grim, but I had to finally accept that like any other illness, hospital, with its professional, caring and compassionate staff was truly the only place his care and wellbeing could be properly managed. I visited him most days and even when I had a break, to him it was just as if I had simply left the room and walked back in again.
All of this is very hard. It's hard even for me to write about, but you know, sometime the awful reality has to be faced. Your father - and all of you - need a break, if only a short one and you know - your Mum will be tougher than you think.
All my good wishesgo out to you. Please write again if you would like to
Yours
Jill.
My goodness; it is a nightmare isn't it. Yes, I can give you a few suggestions. I don't know if you will agree but I can only tell you that I was in a very similar situation. For me it was slightly worse as our three sons all lived away and although they visited as frequently as they possibly could, no-one has any idea of what the day to day and yes - night to night - living was really like.
Eventually I was persuaded by my husband's social worker to get some respite care and for four days, despite the guilt and the worry, I was able to step back from the situation and start thinking more clearly. Despite my fears, my husband came home unscathed and fairly cheerful.
Getting respite wasn't easy. I was the one who had to visit (unannounced) several care home until I found what I thought was the best place for him. I told him he was going there to be monitored as he knew that word, but I made sure he didn't see the suitcase that held his his clothes. The social worker supported me with this and she was marvellous.
I didn't visit him but went to stay with a son and had a complete break. I also got the social worker to explain the financial aspects of it all - very important!
It sounds to me that your Mum isn't the only sufferer in all this and eventually serious consideration has got to be given to your father.
In our situation, my husband had two sessions of respite before sheer exhaustion and brain overload finally led to my own illness and my husband went into that same care home full-time. It's hard. It's awful and the only time the guilt left me was when, eventually the care home workers could no longer manage him and he was moved into the hospital situation.
The whole thing - all of it was grim, but I had to finally accept that like any other illness, hospital, with its professional, caring and compassionate staff was truly the only place his care and wellbeing could be properly managed. I visited him most days and even when I had a break, to him it was just as if I had simply left the room and walked back in again.
All of this is very hard. It's hard even for me to write about, but you know, sometime the awful reality has to be faced. Your father - and all of you - need a break, if only a short one and you know - your Mum will be tougher than you think.
All my good wishesgo out to you. Please write again if you would like to
Yours
Jill.
