new memeber

[fishtank]

Hi , My father was diagnosed with vascular dementia about 5 years ago and not quite sure if i am on the correct talking point, anyhow perhaps you could enlighten me.
He is progressively deteriorating and at the moment is in hospital after another admission from 2 weeks earlier ( for 7 weeks with bowel compaction and kidney damage and returned back home doubly incontinent ) Usually starts with a chest infection, progresses to irregular heart ie transferred to coronary care. before that he was admitted with severe nose bleeds again a trip to coronary care with arrhythmia.

This time he was admitted after falling and bruising and during his stay in hosp became dehydrated ( nurses thought his deliriousness was the dementia) i told them it wasn't !! Since then my mum and I attend 2x daily to make sure he eats and drinks and seems to be recovering.
Whenever we visit though we do not know what we will be faced with, the most upsetting thing at the moment being his anger and shouting and refusing help,medication some vital for his heart condition.
Has anybody any coping strategies or ideas, on how to cope with these outbursts and how to encourage suffers to take vital food, medications etc . It is very hard to understand how my Dad is feeling or thinking and want to do the best for him. Sorry to ramble on but just thought Id see if other carers have any ideas. Thank you for reading .

 

[edwardbs]

Hi , My father was diagnosed with vascular dementia about 5 years ago and not quite sure if i am on the correct talking point, anyhow perhaps you could enlighten me.
He is progressively deteriorating and at the moment is in hospital after another admission from 2 weeks earlier ( for 7 weeks with bowel compaction and kidney damage and returned back home doubly incontinent ) Usually starts with a chest infection, progresses to irregular heart ie transferred to coronary care. before that he was admitted with severe nose bleeds again a trip to coronary care with arrhythmia.

This time he was admitted after falling and bruising and during his stay in hosp became dehydrated ( nurses thought his deliriousness was the dementia) i told them it wasn't !! Since then my mum and I attend 2x daily to make sure he eats and drinks and seems to be recovering.
Whenever we visit though we do not know what we will be faced with, the most upsetting thing at the moment being his anger and shouting and refusing help,medication some vital for his heart condition.
Has anybody any coping strategies or ideas, on how to cope with these outbursts and how to encourage suffers to take vital food, medications etc . It is very hard to understand how my Dad is feeling or thinking and want to do the best for him. Sorry to ramble on but just thought Id see if other carers have any ideas. Thank you for reading .

I also have vascular dementia and one of the hardest things I find in hospital is to explain to doctors that I do not have a selective memory. I am only 61 but will have no idea about times and dates. How many times might as well be in Martian and guess well It is as though you are being asked to remember some obscure chemistry equatioun from school that you never learnt because you did needle work.|It is why we want to scream at them.
Idont get hungry some days and others never feel as though I have eaten although I am never really hungry just that it is time to eat.
Hospitals no longer worry if you NEVER get a hot drink. They dont keep any check on what you are eating. Last time I was in I lost 8lbs in 5 days
Tell the staff he has dementia see that it is over his bed Say he needs to be fed and watered and keep telling them and telling them Make sure that visit him if poss at feeding times like the zoo and feed him.Like they do in the third world.
he is difficult in hospital because he is hungry and thirsty. Would a small child be any different?He has very few ways of expressing himself. Also he will have a headache. Try not eating and drinking you get a headache.
He may not regog nise faces and accents.Now we have lots of new faces and people asking things he cant answer. He feels awful. And scared.Words get mixed up. hes confused.He might not see well. Things move when I get tired and colours change for me.
For me my brain is like a book with pages missing. once a page has gone it is gone. Some pages have words missing some have flaps over words which might stay down covering the word, might reveal a picture but not the word, the picture might but unhelpful or it might be the wrong word or worse blank blank stay blank.
I watch my brain/mind being eaten away. I sound fine
I self control lowers
I feel a bit like a leper but it is affecting my brain.
It is not your father being difficult it is the dementia.
If yoou put a rubber band tightly round your wrist your hand would swell up and not work and hurt. His brain was done that. Not enough blood. Bits have died
All you can is remember him as he was and love him.

 

[RedLou]

Thank you for your insights. As a new member, these are incredibly helpful. My father has Vascular Dementia. He lives abroad and has been taken into hospital because he was neglecting himself even with care coming in to help him. He wasn't eating what they cooked or was locking himself in the bathroom for hours, for example. The hospital have just told me he will never be allowed back to his flat. They are hoping to place him in a state-run care home (very good place) in due course.
My dilemma is: do I tell him he is never going home? He talks about going back to the flat all the time and blames everyone and everything for his constant falls and bad decisions. But he was miserable in his last months there as well. He really, I think, believes that he will 'get better' and return to the life of a few years ago. He doesn't accept that his life is now restricted and not likely to improve.
I don't know whether it's cruelerl to give him a false hope or cruel to extinguish his hope/belief he'll go back home at some point?

 

[Pickles53]

Edwardbs, thank you for your courage in posting this. My mum is not in hospital but temporarily in a care home and I am increasingly upset by how unhappy she is. I will try to understand better, although I can't change the basic fact that there is no way she could return home in her present circumstances.

Redlou, she was unhappy at home too, every day she phoned me to tell me how miserable she was, but now she's not at home she has forgotten that altogether. Mum is going to move to a care home near us for a trial period and following the advice of others here we are intending to say that it's for a convalescence period initially. I think that when she asks to go home, she means 'home like it was before I got ill'. I am still hoping she will recover a bit of the mobility she has lost over the last few weeks, but sadly although she says that is what she wants, she is too frightened to try to stand.

 

[jaymor]

Hello and welcome to TP.

Hospital is not the easiest place for someone with dementia to be. Sadly most hospitals are sadly lacking in dementia awareness and think as far as care is concerned, one size fits all. Edward has explained it very well from a sufferers point of view.

Your Father will be confused from the move to the hospital and is now facing another move. His experience of hospital will be very different to that of a good care home.

I would choose to tell him he is going to a convalescent home where he will get good care to enable him to regain his strength and well being. The doctors have told you he should have this time there. This way you have made the doctors responsible for his move not yourself.

Hopefully he will enjoy the company, the care of the staff and the convenience of having his meals prepared and cooked for him and no longer want to return to his flat. If he is not forgetting his flat then invent a few problems with it that you are getting put right, leak in bathroom, damp in the lounge etc, delaying tactics for him going home giving him time to settle in and with luck, forget the flat.

It isn't easy but far better than telling him daily he won't be going home and him being upset and distressed everyday.

My husband wanted to see his parents, had I seen them , why had they not called in? I told him his Dad was at work and his Mother was shopping, at the hairdressers etc and we would telephone them later. He was happy with the answers. He would ask again sometime later and I would give the same answers, he was never distressed and of course never saw them as they had both been dead for many, many years.

I hope the move goes smoothly for you Dad and he settles well,

Jay

 

[marionq]

Not a lot to add to the excellent answers except to thank Edward for a very valuable insight into the experience of a dementia patient.

 

[jeany123]

Wonderful helpful post Edward,

My husband was the same fishtank I never found a solution, he didn't start to improve until he was out of hospital, he was frightened and uncooperative angry and shouting and lashing out, not even knowing who I was when I visited sometimes, even though the staff were wonderful and reassuring, I think it is just the hospital atmosphere that has the affect on them and the not knowing what is happening,
Best wishes and I hope your dad improves soon,

Jeany xx

 

[RedLou]

Thank you for such prompt advice. I am trying not to tell even tiny white lies to my Dad. This is because I feel if he finds out about even one, he will lose his faith in me. I am the only family member who calls or flies out to see him regularly (although my daughter tries to). My brother now lives in America, you see, and finds the whole situation hard to deal with. My half-sister is now caring for her partner. At the moment I tell my father a veiled truth. 'There's no discharge date yet.' Do you think I should go on doing that? The more he talks about going back to his flat, the worse I feel that I let him live in this false hope, but maybe it is simply that he is expressing his regret for the active years he spent where he saw friends and travelled.

 

[Pickles53]

Thank you for such prompt advice. I am trying not to tell even tiny white lies to my Dad. This is because I feel if he finds out about even one, he will lose his faith in me. I am the only family member who calls or flies out to see him regularly (although my daughter tries to). My brother now lives in America, you see, and finds the whole situation hard to deal with. My half-sister is now caring for her partner. At the moment I tell my father a veiled truth. 'There's no discharge date yet.' Do you think I should go on doing that? The more he talks about going back to his flat, the worse I feel that I let him live in this false hope, but maybe it is simply that he is expressing his regret for the active years he spent where he saw friends and travelled.

I don't like the idea of deceiving mum (who would) but the alternative is to tell her ten times an hour that she can't go home which makes her cry and tell me I'm cruel. And she can't go home, too vulnerable and too much risk of something worse happening.

 

[Sue J]

Hi and welcome to many new members

Fishtank I wonder if you could suggest to the staff that they allow you to give your Dad his medication when you go in to help him with his meals.

Edward, you have expressed so well what it is like. I struggle so much at times to express things. Hope you find the forum helpful, I do very much

Best wishes to you all
Sue