Miserable situation with my parents-don't know what to do.

(33 Posts)
hellymelly Sun 26-Feb-12 22:15:36

My Dad has parkinson's Disease and has just been diagnosed with lewy body dementia.He is 76 and has had parks for decades so is not in great shape-he can walk a little but is wobbly,he falls frequently but seems to be made of rubber as he never hurts himself,however he has fallen against Mum and hurt her.His speech is very badly affected and communication with him is hard,compounded by the LBD as he has lucid times and far less lucid times.
My Mum is 80.She has been caring for Dad at home,with two days a week respite when he goes to a day centre.However,following a fall where my mum asked a local man who had delivered something to try and help get Dad up,the man called an ambulance and although Dad was up by the time it came they took him into hospital where he is now.The hospital had various concerns,mainly to do with how unpredictable he is and how much he falls.The team there have recommended that he now go to an EMI home. His doctor talked with him and apparently Dad said he would be willing to go as he felt Mum wasn't coping.Their social care worker tried to talk to Dad but he was unresponsive,and the carers who come twice a day have expressed concerns for over a year that my Mum doesn't seem to be coping at all well. There was a meeting last week where the medical and social staff told my Mum that Dad would now have to go into a home.
I can see that she is finding it very hard looking after Dad,as now the respite days have been taken away because he falls and is therefore a danger to others.She sounded beyond desperate on the 'phone when that happened.She is worn out and not in great health herself. I see that logically him moving to a home is sensible.BUT...My Mum is hysterical,she is terribly upset.She wants him home,she doesn't want to ever be separated from him while he is alive.It was pitiful listening to her sob down the 'phone earlier (I live far from my mum).She asked Dad herself what he wanted and he said he wanted to come home. Last time I saw him he clung to me and cried and seemed very panicked,possibly because we had just had an initial meeting about how to progress with his care.I am lost about what to do.Can my Mum insist he comes home? Should we support her in that or is it madness? Until today I thought I had accepted that a home was the best solution but I feel heartbroken.My mum was saying that they had "broken her marriage" and that she has let my Dad down by not being able to bring him home.It is dreadful.All advice welcome.

ssd Fri 09-Mar-12 09:28:34

...and keep posting, you'll get support here x

albertswearengen Fri 09-Mar-12 09:40:47

My great aunt and uncle were in the same position as your parents except it was my aunt who had the multiple health problems and my uncle just couldn't cope after a while. Eventually they were persuaded after a great deal of time and multiple crises to go into a home together as they wouldn't be parted. It was great- they had separate rooms but it meant they could be near each other. My uncle loved it as the major stress of caring was lifted from him and my aunt got much better care.

hellymelly Fri 09-Mar-12 22:52:36

My Dad did suggest that to my Mum when he was a bit more together, a year or two back. She completely flipped at the mere suggestion, I think she may have spent some time in a Children's Home as a small child, certainly she has "issues" around any sort of institutional care. She won't consider it at all which is a shame. She is older than Dad and definitely more frail in the last couple of years. (she's 80 now).

mamadoc Sat 10-Mar-12 21:25:55

Sounds to me like there really is no other solution if your dad is needing so much supervision than that he goes into a home. Maybe you can help your mum to change her perception of it? ie that she is not failing him but actually doing the best for him. If he actually suggested it when he was better it seems as though the major objection is hers and not his and perhaps stemming from her past.

The standard of care homes varies greatly and often i'm afraid you get what you pay for. Perhaps if you could visit some together she would see that some are not so bad.

I visit older folk in care homes a lot for my job and it is not at all unusual for their spouse to be there daily, take them out on trips, have meals together, join in activities.

My own lovely gran lived in a care home in her 90s and was very happy there. A family member visited every day even when she got too ill to know that. It was hard for my parents to make the decision as she'd always said she wanted to be in her own home but actually she was miserable and lonely there whereas in the care home she had company and better care.

amicissimma Sat 21-Apr-12 18:43:45

I've only just found this topic, so come to it late.

My parents nearly ended up in this situation but my dad died just before my mum could cope no more. They did see the problem coming and were looking into a dual-registered home, ie residential and nursing. The idea being that Dad would be in the nursing part and Mum down the corridor in residential. Your council should have lists of homes and what sort of registration they have.

Another alternative is the one your mum seems to dread: putting your dad in nursing care and having her visit. As other posters have said, she could spend every day with him. (If you listen to The Archers for a while you will hear Jack and Peggy Woolley in that situation!)

My mum is now in a residential care home in her own right. It is lovely. Her rooms (adjoining living and bedrooms, bathroom, kitchen corner) are entirely private, but she gets 2 meals a day with the other residents. It's small and not at all 'institutional'. Often the residents are alone in the building unless the cook is in or the p/t administrator in the office. The residents are entirely free to come and go as they please, just asked to say if they will be in or out for lunch or dinner. They look out for each other and sometimes argue like close neighbours.

If there is any emergency my sister or I are called to deal with it; the 'staff' don't give any care (although they will bring meals to the room for a short illness and won't step over a body!). They are all supposed to wear a call button on a cord round the neck, although Mum thinks some of them don't. Occasionally a fellow-resident has called an ambulance for another.

I was fortunate in that Mum, having had a traumatic time with my Gran, made the decision to go into this home, by chance just before her health took a big downturn. There seems to be an awful lot of emotion involved for many people, yourselves included, which can make things very difficult. I do think, though, that the idea of a 'home' is worse than the reality. My mum is very happy where she is, and grateful not to have to worry about the day-to-day domestic stuff. (Only own laundry and room cleaning, but if she can't face it she can ask me or my sister.)

Heartstart Wed 18-Jul-12 00:04:56

Hellymelly I am in exactly the same situation and am typing this(with no thought tompunctuation grin ) from my dps house as mum was admitted with heart problems this am. Just had long chat with sibs re options but none of them are easy.

So sorry no help but absolute solidarity

cocolepew Wed 18-Jul-12 00:14:30

I was going to suggest if they could go into a home together, but if your mum has issues about them that wouldn't work. The home my Gran was in had a lot of couples in it. The only other thing I can think if is sheltered accommodation /folds.

Its a horrible situation to be in.

cocolepew Wed 18-Jul-12 00:15:54

Oh gosh just realised this is an old thread!

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