reaching the end

[suzannapat]

I have cared for my 59yr old husband for the last five years but he has deteriorated rapidly since the summer. He has been in a psychiatric unit since October. He is very distressed and wants to be physicaly active but the damage in his brain has destroyed his balance mechanism and so it is dangerous for him, the staff and other patients if he tries to walk. Consequently he is kept in an armchair pushed hard under a table and barricaded in so he cannot move.
This is heartbreaking to witness.
They have not been able to find a medication to ease his agitation and so this week the consultant has put him on morphine in the hope of inducing a euphoric state. He also tells me that we are looking at my husband surviving for just weeks now.
I am hoping that if he becomes able to relax and rest that I would be able to bring him home and care for him myself (with help of course!) for his remaining time.
Does anyone have any experiences they can share with me about this kind of situation?

Sue.

 

[connie]

Sue, cannot imagine how you must be feeling, but just wanted to let you know that I am thinking of you.
I know the feeling of wanting to take care of him at home, but please be guided by the consultant. You need to be so fit, especially when mobility goes.
Stay strong, sending you a big {{{{{{hug}}}}}}. Connie

 

[jc141265]

Sue,

It is unfortunate indeed that your husband can be a danger to other patients, for if that were not the case I might have been able to help. My father was regularly falling whether it was due to a lack of balance or because he was blacking out we are not sure, because no one ever saw him doing it. Several times he fell and hit his head quite hard, as he fell like a dead man, not having the reflexes to put his hands or arms out to break his fall. It looked like he was going to have the same fate as your husband and be locked into a chair, but instead we decided to buy him a football helmet to protect his head and decided that although it would be terrible if he fell and hurt himself, it would be more terrible for him if he were to be restrained. Thankfully he never did hurt himself more badly than a few cuts and bruises and one set of stitches (before he got the helmet) and for some inexplicable reason he has not had a fall now for about 6 months (touchwood). I have explained all this too you anyway, just in case there is some way that you can eliminate the danger to other patients.

When Dad was having these falls around April last year, I, my family and pretty much anyone who dealt with Dad thought he wouldn't last till Christmas. Christmas has now passed, and it is beginning to look like he may be with us for years and years yet....a blessing indeed but a mixed blessing as all carers would understand.

Dad too used to be very agitated and was violent at times, these days he yells occasionally but is no longer a danger to anyone. One reason for this could be that for a time he was put on a drug called epilim (sodium valproate) to control seizures he was having. This drug also turned Dad into a bit of a zombie when he first went on it (which was distressing & Brucie can attest that it did the same to his wife, and it was also distressing for him to see this) but in your husband's case, it might settle him down enough to get him through this difficult period. You have said nothing about your husband having fits, but epilim is also prescribed for use with mood disorders...well I guess I am just stabbing in the dark, with attempts to try to find a solution to your crisis...but sometimes, you never know, the stab might hit something right on the head. It can't hurt to ask a doctor about it, except that they may look at you like your crazy, but we're all pretty used to that by now aren't we?? By the way, Dad is no longer on Epilim and his seizures and nasty violent moods have gone away, but neither is he like a zombie.

Just for some background on my Dad's case: Dad was 59 also when he was having the falling over problems and looked like he wasn't going to last, he turned 60 during the last year and will be 61 in May. His dementia diagnosis was finalised in December 1999.

 

[mandy]

balancing

hi sue

my mum was very aggressive up until a few months ago when after trying many anti physcotics which didnt suit her, the consultant prescribed carbomazapine.
Mum has settled down really well and is still very active and able to walk around unaided. Sometimes she is off balance and will trip or walk into things but on the whole she gets around really well. Don't know if this would be worth mentioning to your consultant/