A sudden physical illness meant that my father had to be transferred to a care home without planning as my mother had also hurt herself and couldn't deal with my dad's symptoms. When he was left there he just knew it was because of his own illness and its having become unmanageable for my mother. He whispered to her that he loved her and was put to bed. In the next day or two he went into a sudden rapid decline and began behaving totally uncharacteristically. Now he's in a hopital being assessed and he is getting frailer, and more confused and delusional. He seems so changed from just 1 month ago. Is this what the end looks like, and if so why was it so sudden - we had no idea he was so near to having last-stage Alzheimer's. He never got to accustom himself to the idea of leaving home or having a second home in a care home, and now it seems that he's not considered well enough to come home. We feel like we have betrayed him. My mother feels guilty for not handling his illness better; I feel dreadful too. What do we do now? He seems to have lost everything and no one seems to be there to help him understand what has happened and what is going to happen. Is there really no possibility of fulltime care at home? Is that just for the very rich? If he goes into an Alzheimer's unit, will we be able to have him home for meals/the odd night or weekend? Or is that cruel?
Will Dad ever be able to come home?
- Thread starter LJVP
- Start date
Hello and welcome to TP,
I am sorry to hear your dad is so poorly and know from experience how distressing situations like this can be. Try not to cross bridges before you come to them ( I know easier said, than done.) I can understand the fear you and your mum must be feeling but once the Dr's do their assessment things will be clearer and you'll have a better idea of what you are dealing with.
In this situation all you can do is be there for your dad and give him as much reassurance as possible. I hope that the news the Dr's give is not as bad as you fear. Hang on in there and I wish you all the strength needed. Caring Thoughts, Taffy.
I am sorry to hear your dad is so poorly and know from experience how distressing situations like this can be. Try not to cross bridges before you come to them ( I know easier said, than done.) I can understand the fear you and your mum must be feeling but once the Dr's do their assessment things will be clearer and you'll have a better idea of what you are dealing with.
In this situation all you can do is be there for your dad and give him as much reassurance as possible. I hope that the news the Dr's give is not as bad as you fear. Hang on in there and I wish you all the strength needed. Caring Thoughts, Taffy.
Ljvp
Hello.
I`m so sorry about your father`s illness and seemingly rapid downslide of his Alzheimers. From reading posts on Talking Point [TP] this seems a common occurence.......a physical condition, perhaps an infection, a fall or a need for surgery, affecting the dementia.
It is impossible to know which came first......did the Alzheinmers cause the physical illness, or make a sufferer more susceptible and vulnerable, or did the physical condition affect the Alzheimers.
Have you discussed his condition with his doctor? Have you been given any hope he might rally once he recovers physically.
We are all looking for answers, for reasons and for hope but the reality is we can only live for the day.
I think it is only the rich who can be cared for at home.
Home visits from a care home will depend on the condition or the resident and the policy of the home.
Please let us know how your father is.
Love xx
Hello.
I`m so sorry about your father`s illness and seemingly rapid downslide of his Alzheimers. From reading posts on Talking Point [TP] this seems a common occurence.......a physical condition, perhaps an infection, a fall or a need for surgery, affecting the dementia.
It is impossible to know which came first......did the Alzheinmers cause the physical illness, or make a sufferer more susceptible and vulnerable, or did the physical condition affect the Alzheimers.
Have you discussed his condition with his doctor? Have you been given any hope he might rally once he recovers physically.
We are all looking for answers, for reasons and for hope but the reality is we can only live for the day.
I think it is only the rich who can be cared for at home.
Home visits from a care home will depend on the condition or the resident and the policy of the home.
Please let us know how your father is.
Love xx
Hi Ljvp, welcome to TP.
I went through exactly the same last September with my husband.
He went into a sudden and rapid decline as a result of a UTI, and had to go into full-time care.
I had all the same emotions -- shock that it could have happened so suddenly, guilt that I could not longer give my husband the care he needed, and terrible depression that I had lost my lovely man.
Nine months later, I still don't know why it happened, no one does. Other people have UTIs without the sudden collapse. All I can do is accept.
The guilt has passed, I know I couldn't manage John at home, he needs three carers to attend to his personal needs.
I'm beginning to accept my loss, though I still spend as much time as possible with him, and feed him his meals. I know that one day I'll lose him altogether, and want to make the most of every minute we have.
If he is able, there's no reason why you can't take your dad out for meals, though I'd say be careful about bringing him home, it might give him more pain every time he has to go back. It might be OK, but I'd let the staff advise you on that once they get to know your dad.
Apart from that, just give yourselves time. After nine months, I'm still not totally accepting, but it does get easier.
All the best,
I went through exactly the same last September with my husband.
He went into a sudden and rapid decline as a result of a UTI, and had to go into full-time care.
I had all the same emotions -- shock that it could have happened so suddenly, guilt that I could not longer give my husband the care he needed, and terrible depression that I had lost my lovely man.
Nine months later, I still don't know why it happened, no one does. Other people have UTIs without the sudden collapse. All I can do is accept.
The guilt has passed, I know I couldn't manage John at home, he needs three carers to attend to his personal needs.
I'm beginning to accept my loss, though I still spend as much time as possible with him, and feed him his meals. I know that one day I'll lose him altogether, and want to make the most of every minute we have.
If he is able, there's no reason why you can't take your dad out for meals, though I'd say be careful about bringing him home, it might give him more pain every time he has to go back. It might be OK, but I'd let the staff advise you on that once they get to know your dad.
Apart from that, just give yourselves time. After nine months, I'm still not totally accepting, but it does get easier.
All the best,
It isn't necessarily only for the really rich, but you do need to have substantial reserves of money, to care for your loved one at home if they need full time care, because it requires not only the full time carer to be able to afford to not work, but realistically there needs to be money to pay for other carers to come in and assist at least some of the time. My parents aren't 'really rich' it was just lucky that Dad was frugal and put a lot of his money away in superannuation, he and mum bought their house over the years so don't have to pay rent, and Mum now uses Dad's superannuation(which has been re-invested) returns to live off. Usually if you are going to care from home you will also either need the money to pay for the necessary equipment which in Dad's case is a wheelchair, a shower chair, a hospital bed (which is not necessarily needed but its difficult otherwise to make Dad comfortable in bed as he is hard to move) and a hoist. Alternatively if you are lucky some local organisations might help you to source these things and may even find ways to have them donated to you. So yes it is extremely difficult to end up in a situation where you can care for your loved one at home. You generally also need a home that can be accessible for wheel chairs...mum has had makeshift ramps installed in her house.
On the bright side, although this rapid decline may carry on, there are times when it can be reversed. Dad had to be carried out of the home he was originally in when we took him back to our home and he seemed barely conscious...but now 9months later he is able to walk again and is bright and sparky most of the time. Its a difficult issue, because I think the tendency is for the world and especially hospitals to never consider rehabilitation work for someone with alzheimers, as they consider the disease irreversible so whats the point. Many might say that we have prolonged ours and Dad's misery by rehabilitating him back to his current state, but I can't agree when I see him smiling and laughing now. So if you want for him to possibly get better, that would require a lot of hard work, spending a lot of time with him at the home he is now in, and trying to find ways to exercise his muscles (we started off with just standing Dad up for a minute, then sitting him down, then standing him up for two minutes, sitting him down, eventually seeing if he could take steps, with one or two of us there ready to ease him back into the chair if he faltered...and so on and so on...now he can walk down the street again). However it all depends on the individual's condition, whether they want to do the hard work too, or it might be just too painful and distressing for them, or their condition may not be like Dad's and they can't get better (Dad is only 64).
I don't believe it is often possible for a person to get better when they are not at home because they do not get one on one attention 24hrs a day. Unfortunately because of the restrictions to home care as mentioned above, in most cases the terrible truth is that home care is just not possible. You should not feel guilty about this AT ALL, this is not your fault, life is the cards we are dealt, and sometimes we just don't have the cards we need. I have only posted my message for awareness sake, if you have the right cards...you can sometimes win the game and sometimes you dont even know you have the right cards, Dad was in a care home for 3yrs before coming back home. I also want it to be known that despite what doctors say, there can in some cases be improvement in a dementia's sufferer's condition,it depends I think on what kind of dementia they have and what parts of the brain it affects, nonetheless even we know that eventually there will be a decline once more. I would estimate that Dad's improvement currently wiped out approximately 3yrs of decline.
Last but not least as to whether it would be cruel to take your Dad out of the home for visits back home, again it depends on the sufferer...Dad used to love coming to my house for days out of the home, we used to take him out for birthdays and xmas...for other sufferers it distresses them...you will be able to tell from your father's reactions whether this is good for him. When they want it and aren't distressed by having to go back to the home, this is the most wonderful thing to do for them & you.
On the bright side, although this rapid decline may carry on, there are times when it can be reversed. Dad had to be carried out of the home he was originally in when we took him back to our home and he seemed barely conscious...but now 9months later he is able to walk again and is bright and sparky most of the time. Its a difficult issue, because I think the tendency is for the world and especially hospitals to never consider rehabilitation work for someone with alzheimers, as they consider the disease irreversible so whats the point. Many might say that we have prolonged ours and Dad's misery by rehabilitating him back to his current state, but I can't agree when I see him smiling and laughing now. So if you want for him to possibly get better, that would require a lot of hard work, spending a lot of time with him at the home he is now in, and trying to find ways to exercise his muscles (we started off with just standing Dad up for a minute, then sitting him down, then standing him up for two minutes, sitting him down, eventually seeing if he could take steps, with one or two of us there ready to ease him back into the chair if he faltered...and so on and so on...now he can walk down the street again). However it all depends on the individual's condition, whether they want to do the hard work too, or it might be just too painful and distressing for them, or their condition may not be like Dad's and they can't get better (Dad is only 64).
I don't believe it is often possible for a person to get better when they are not at home because they do not get one on one attention 24hrs a day. Unfortunately because of the restrictions to home care as mentioned above, in most cases the terrible truth is that home care is just not possible. You should not feel guilty about this AT ALL, this is not your fault, life is the cards we are dealt, and sometimes we just don't have the cards we need. I have only posted my message for awareness sake, if you have the right cards...you can sometimes win the game and sometimes you dont even know you have the right cards, Dad was in a care home for 3yrs before coming back home. I also want it to be known that despite what doctors say, there can in some cases be improvement in a dementia's sufferer's condition,it depends I think on what kind of dementia they have and what parts of the brain it affects, nonetheless even we know that eventually there will be a decline once more. I would estimate that Dad's improvement currently wiped out approximately 3yrs of decline.
Last but not least as to whether it would be cruel to take your Dad out of the home for visits back home, again it depends on the sufferer...Dad used to love coming to my house for days out of the home, we used to take him out for birthdays and xmas...for other sufferers it distresses them...you will be able to tell from your father's reactions whether this is good for him. When they want it and aren't distressed by having to go back to the home, this is the most wonderful thing to do for them & you.
help for care at home
Hello
I'm really sorry to hear about your father's sudden downturn. It must be an awful shock.
My mother is in her 10th year of vascular dementia/alzheimers and is still at home. I'm a teacher and live a couple of hours away from her, but do look after her myself during the school holidays and weekends, thus saving money, but obviously the rest of the time she has live-in carers. She does have to contribute some money towards her care, but we also do get money from social services in the form of direct payments. You should get social services to assess, hopefully they will assess the need for 24 hour care and give you money accordingly - obviously not all of it, but it does help, particularly if you can do some of the looking after yourself. Re equipment, again social services and district nurses have provided most of ours - we may just be lucky with where my mother lives - so now my mother has hospital bed, ripple mattress, hoist, commode etc etc provided for her. As I say, it may depend on where your parents live, but it really is worth asking. Hope this is some encouragement and things are improving.
Hello
I'm really sorry to hear about your father's sudden downturn. It must be an awful shock.
My mother is in her 10th year of vascular dementia/alzheimers and is still at home. I'm a teacher and live a couple of hours away from her, but do look after her myself during the school holidays and weekends, thus saving money, but obviously the rest of the time she has live-in carers. She does have to contribute some money towards her care, but we also do get money from social services in the form of direct payments. You should get social services to assess, hopefully they will assess the need for 24 hour care and give you money accordingly - obviously not all of it, but it does help, particularly if you can do some of the looking after yourself. Re equipment, again social services and district nurses have provided most of ours - we may just be lucky with where my mother lives - so now my mother has hospital bed, ripple mattress, hoist, commode etc etc provided for her. As I say, it may depend on where your parents live, but it really is worth asking. Hope this is some encouragement and things are improving.
A line worth pursuing?
That went straight to the heart. I do so understand. My own feeling is that OF COURSE home is best, and it may perhaps be acheivable. I'm just beginning to discover what "the system" has to offer, and I suspect that unless you have drawn a good ticket in the postcode lottery, it ain't much.
But why not think about other options - "merging" households, setting up granny flats, and pulling in help from other family members. Cousins may be distant, but if they have the cash (or the time), they might just be wonderfully helpful. Doing things at home will be very very tough, but also very rewarding. Be realistic, don't expect too much of yourself, but do have a look at the possibilties. Very best of luck.
That went straight to the heart. I do so understand. My own feeling is that OF COURSE home is best, and it may perhaps be acheivable. I'm just beginning to discover what "the system" has to offer, and I suspect that unless you have drawn a good ticket in the postcode lottery, it ain't much.
But why not think about other options - "merging" households, setting up granny flats, and pulling in help from other family members. Cousins may be distant, but if they have the cash (or the time), they might just be wonderfully helpful. Doing things at home will be very very tough, but also very rewarding. Be realistic, don't expect too much of yourself, but do have a look at the possibilties. Very best of luck.
i am so sorry to hear about your dad it brings it all back about my dad he had dementia and lived on his own we tryed everything to keep him home but he was such a risk at home so we tryed to get him help at home but like you said you have to be rich to get the help they need dad went into a nursing home and we got full funding for him and because he needed 1 2 1 care at night the home was being paid 1 thousand and 8 houndred pound a week we could of had dad looked after at home for alot less than that but the funding would not pay for anything at home dad passed away 3 weeks ago whote a big loss .but you asked could you take dad home an odd night where dad was you could take them out every day and if he is safe he could sleep home the odd night when we put dad in the home we were devastated crying all the time but after about 2 months we new it was the right thing to do and i went in every dinnertime to help him eat his dinner i think you will feel a lot better when you can settle your dad at a home i hope every thing works out for you
