So glad im not on my own... uncle

[danielle]

Hi
I have been a single carer for my elderly uncle (who i have known all my life).. for the past 3 years. He lost his daughter then his wife all within 2 years..He took to drink but over a period of time we managed to compromise...
He has no contact from his son and this has been ongoing for as long as i can remember. Son dont wanna know his dad.
I feel like ive been alone for uncle for the past 3 years..shopping cooking doc's etc... responding to his beck and call.....
he has been in and out of hospital through reacurring chest infections,
The last time he was admitted he stayed in hospital for 3 weeks then was discharged ...to his home address.
He was still poorly and He was admitted back to the hospital within 9 hours of discharge.
And there he has been since ....neanly 10 weeks and for the last 3 weeks he has been STRANGE to say the least...
They say prob his chest... then tests showed he has vascular dimentia plus chronic chest infection.. i really cant belive how rapidly this thing....has took hold of him, he has gone from a kind genuine sweet honest uncle to a complete nightmare to be honest.. i get shouted at, abused, and have had things thrown at me. .........no one else just me.
He is apparantly on antibiotics for chest and diazipam to calm things AND DF118'S for pain... but....
Tonight i find that his blood pressure has dropped...? WHY COULD THIS BE...
I had biggest job to wake him up... It really freaked me out...he is also now apparantly doubly incontinant. I went back at night time visiting only to find he had "WOKE UP" and was confronted with im coming home with you - i hate it here-i wanna die....etc
I was totally gutted... and felt soooo guilty..but i know sensibly that i couldnt cope with him at home.
Does any one else any info ..all will be greatly appriciated as i am begining to feel that whithin my self myself not able to cope. not a feeling i am fimilliar with...
I cant let this happen as there is no one else at all apart from my parent who are both of ill health themselves.

 

[Brucie]

Hi Danielle

what a great person you are.... but you need help.

Infections of any sort, coupled with dementia, make for all sorts of weird results. For someone with a dementia to be catapulted out of their known surroundings to hospital [where the staff generally have no clue as to how to cope with a dementia patient and mostly will try to ship them out as soon as they can] will often seem to accelerate, or at least accentuate, their condition.

Also people tend to get institutionalised in hospital to an extent that to bring them home is very difficult indeed. You should start to accept the fact that he may never go home now - if he does, then a major care package will need to be in place. Also, if he doesn't have one, an Enduring Power of Attorney needs to be in place, though it may be too late now for him to sign one.

Do contact the Alzheimer's Society Help Line and explain your situation. This is all bad enough for a spouse, or sibling, or child to cope with, but for you, it is doubly so and it could take over your life.

It is one of the particularly sad things that, when they want to complain about things [shout, etc, because they can't make themselves understood in a world that is no longer theirs] - they do so to the person they most easily recognise....usually the person caring for them, in all senses.

Don't get upset about that. It is not him being nasty, it is the condition.

Keep strong, and keep posting here - we'll try and offer what advice we can.

 

[Sheila]

Dear Danielle, I think you have done a pretty wonderful job to care for your uncle the way you have. Vascular dementia tends to become worse in steps such as you describe. The chest infection and strange surroundings will have accelerated this. It couldn't be helped, my Mum had the same experiences. Further to what Brucie has said, you do need to inform the hospital that you do not now feel able to cope with him at home. Tell them you need help to find a placement for him. They cannot force you to take him home although they do try to make you feel you should sometimes. Stick to your guns and before you accept a placement, go and see the home to make sure you will be happy for him to go there. You don't have to accept the one first offered, you can shop around. Keep posting to let us know how you are doing and we will try to help where we can by our own experiences. Love She. XX

 

[danielle]

coping with uncle..

I would like to thank you for responding to my message.
I never knew this website existed and only found it by chance. It really does make a difference to know that someone else knows and understands what its like. I have visited him tonight and was pleasantly supprised to see him sitting on the side of his bed ( in a fashion) nibbling at his sandwich (he refused to eat or drink) but my relief was short lived when he took one look at me and promptly lay down and went to sleep. I tried to make conversation with him only to be told "leave me alone" i spoke to the nurse and she explained that he seemed a little better today apparantly its "normal" for him to have good days and bad days I found myself asking for who...Is a good day when he lies in bed all day and doesnt speak... easy care... or is it when hes shouting and demanding... hard work ! I think i prefered the noisy shouting uncle tom apposed to the quiet not speaking and not moving one ! she said that his white cell count had started to level up ? but his blood pressure was still lower than normal. she did explain that hopefully on monday someone from social services would be round to see him and asked it i could be present. (to sign to allow asesment?) i do have an enduring power of atternoy uncle tom sorted that out months ago I will have to find out exactly what this means... But i am pleased that i have some say in what happens. It really helps to come onto this message board and just sound off...
Many thanks again Danni x

 

[Sheila]

Hi Danielle, it would be a good idea to see who ever turns up from S.S. as you can then tell them what you are prepared to do and not do when it comes to your uncle being discharged. They may well want to do a means test to see what he is entitled to and what must be paid for, this usually rears it's head when care homes or packages of care are entered into. The test will be on your uncles finances, not yours. Yes, I know what you mean about the definition of good/bad days!! Hope all goes well, love She.XX

 

[danielle]

Uncle Tom

Hi She
Thanks for reply...I have been reading through some of the messages posted on here and was gobsmacked but relived (for my own ends) at how many other people are going through the same thing. I think that feelings of guilt and also lack of knowledge are the majior factors in my feelings at present.

Thanks Danni x

 

[Kriss]

Hi Danni

welcome to TP. Good days/bad days are common and your Uncle has/is going through a period where his whole perspective of life has been turned upside down. Any sort of change to the routine of an AD sufferer usually has a major impact and will upset them dreadfully.

I am my Aunt's only remaining blood relative and share Power of Attorney with one of her best friends. The move from home into a residential home for my Aunt was the only choice but it still left me feeling that somehow I had let her down and betrayed her. It's almost 12 months on to when the move was made and at first she was very up and down. There have been various changes to medication and at times I have wondered it it was being overdone to make life easier but it seems that some days it just has more of an effect than others. She may be very sleepy when we visit and have trouble staying awake but I think often these times are wehn she has a particularly wakeful night. Other days she "wakes" very quickly and is up and out of her chair immediately. A fortnight ago when we arrived she already had a visitor who was having trouble getting her to wake but as soon as we arrived she came to and having walked the perimeter of the gardens with us we then went on an "expedition" out from the home and onto the estuary front which she enjoyed tremendously. We were overjoyed that she had managed such a feat - some days she seems barely able to walk unaided but on this occasion was amazing.

I had considered all manner of totally impossible options of trying to find carers for her at home (she scuppered this one as would not accept any help at all), and even giving up my job and moving in with her. Looking back they were crazy ideas for us but you go through all sorts of mental anguish trying to "do your best". I look back now and think thank goodness things have gone how they did. Everyone is different but for Aunty this has worked well. She has stayed in the area where all her loyal friends are and we travel up to visit nearly every week.

I think what I am trying to say is don't overload yourself, try to take a step back and consider that sadly this illness will mean coping will only become MORE difficult and there ARE good homes out there if you can find one. Let the professionals do the physical caring and then you can do the quality caring to make his days a bit special when you visit. Aunty seems to have now accepted where she is is "home" and she has a routine that gives her a form of security. I had to tell her many times at the outset that she had to get her strength back and get well before the Doctor would allow her home (it was horrible lying this way) but she came to see me as the good guy who was on her side and I guess that's why she always greets me with a big smile these days - it wasn't always like that at the beginning of last year.

As Bruce often says "it's the illness talking" not your Uncle so try not to let his hurtful reactions do too much damage. I am sure you can gain his trust again.

Kriss

 

[Sheila]

Dear Kriss, what a very wise and caring person you are, it is a hard task, but you have pulled it off magnificently, well done. Love She. XX

 

[Sheila]

Dear Danielle, glad to hear you are letting others take the strain a bit. You need to do this for your own and everyone elses sake. You have a young family who need you. I know how hard it is to do, but you have done the right thing. It is nigh on impossible to be all things to all people, you get to the stage when you can't see for all the hats your wearing falling in front of your eyes if you don't! Do make sure you take a bit of time out just for you too, your needs are just as valid as the others. You must not feel guilty, you are doing your very best for your uncle, but Danielle, this illness is bigger than any of us and a bit of help is worth it's weight in gold. Lotsaluv and a hug, She. XX