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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.

I have no advice I'm sorry, but I didn't want to leave your desperately sad post unanswered. I can see my parents being in the same situation in the not too distant future, as my dads alzheimers progresses. Is there any way that your parents could both move into a home? One of my friends had gps who were able to do this locally to where I live - she was relatively able, but he was not.
It's the most heartbreaking thing to see your own parents in such distress, isn't it? I really feel for you. sad

hairtwiddler Sun 26-Feb-12 22:31:40

Oh how horrible for everyone. Sounds like the hospital admission has really brought lots of issues to the fore, so instead of coming to a conclusion gradually, it's being forced on everyone.
Some thoughts.... is the care package that they had in place the maximum available? Might be worth contacting the social worker to see if there is any possibility to increase his care in the home. For example, could he have some regular longer respite care stays in addition to the day centre to give your mum a break? Do they know why he falls so much? Is it something to do with the house which could be made more safe with an occupational therapy visit? Does he need a review of his parks meds?

If it really is in his best interests to be in care I hope there is somewhere close to your mum so she can go in daily. Has he at any point in the past (when more lucid) expressed what he would want in such a situation? If, so, would that help your mum come to terms with it now?

I hope things get better soon. So hard for you to be far away.

hellymelly Sun 26-Feb-12 22:45:54

Thanks for the quick responses,esp as my post is so long.Dad has just had a meds review so all has been done on that front.He falls so much because he is only just able to walk (he also had a stroke two years ago).But is very stubborn and doesn't use his zimmer.He wobbles a lot even with the zimmer,there were some scary moments with my dds (4 and 7)when we last visited.Sometimes he crawls about. a few weeks ago we had a meeting and it was agreed that he could go home for the time being,and that they would up the carer visits from twice a day to three times.That was the max that they could offer apparently.I am not sure about the longer respite,I will look into that.The daycare centre won't have him any more because he tries to walk and falls.In hospital he is on 15 minute obs because of this. Anyway since then the lewy body demetia has been diagnosed and he has had episodes of agitation and aggression in hospital,prompted by extreme frustration.So the medical team and the social one decided that it was no longer in his best interests or my mothers,for him to be at home.They feel its a serious accident waiting to happen.I can see that.I can also see that separating them after fifty odd years together is terrible though.
My dad did suggest to Mum a couple of years ago that they go into a home together,but she totally freaked at the mere idea.Added to that he needs EMI care so sheltered housing etc,is no longer an option.I will ask more about that though.(My Mum is fixated on her own home and has fears of homes and destitution that are very deep rooted and to do with her childhood.)

LondonNadiy Mon 27-Feb-12 15:14:30

My mum and her siblings had a similar problem with their parents. My granddad was very infirm walking and incredibly stubborn (and dare I say it, downright selfish often) - the Aunts had to take away his wheelchair because he'd have my 80yo nana pushing him up and down the hill daily for his 'exercise'. They continues 'independently' in their own home until he died last summer and Nana has lived with my mum since, but they only managed with daily help - there was a Home Help about 3 times a week and one of the Aunts (actually, and one uncle, he gets lumped in the with girls a lot so he's an honorary Aunt, but there are 5 of them) went every day, to do the tablets (a serious consideration - are they compos mentis enough to regulate their own medication?), to force them to bathe, to check that they weren't eating rotting food, check the post etc.

Your parents seem to have more physical than mental ills, but still they are likely to need daily attention, and my experience with the elderly is that they are very mistrustful of their home help staff - my 92yo great aunt will call her son up and tell him that her (lovely and definitely innocent) home help, who has been there daily for about 9 years, is stealing her clothes when she washes them, for example.

I suppose moving them closer to you is out of the question with your mum's attachment to her home? Are there more siblings or even cousins who could stay with them for a while on rotating shifts or something? Hiring a nurse may be an option - a larger male nurse would be able to help your dad up if he fell etc.

In short, I suppose, I feel your pain, and dread when this will come to my parents rather than my grandparents, and a semblance of 'independent living' can be maintained, but it costs in either time or money. But a nurse is unlikely to be much more expensive than a good care home for two.

hairtwiddler Mon 27-Feb-12 17:20:13

How are you doing today? I agree, EMI care is not suitable for your mum if she is fit and mentally able. So difficult.
Is his agitation only in hospital, ie is the unfamiliar environment the reason? It's so difficult to advise without knowing them but I would want to know that every avenue had been explored around having him home. Has he been seen by old age psychiatry services for example?
I really hope you come to some resolution.

hellymelly Mon 27-Feb-12 17:39:37

Thanks so much for all the advice.Dad has just had a psych assessment-that confirmed the lewy body dementia.His cognitive abilities are not too bad at the mo- although that varies terribly through the day.He has called the police thinking someone is in the house,that sort of thing.(partly to do with bad nightmares).He also hides from my Mum and gets himself in dangerous situations in the garden or by trying to walk to the shops. My Mum is at the end of her tether,she had a stroke a few years ago and has some problems from that.She gets so exhausted and is reluctant to call an ambulance if he falls and can't get up ,she calls my brother who lives about 45 minutes drive away. However she desperately doesn't want to be parted from him.She says she agreed to care for him with her marriage vows and quoted the "that which God has brought together let no man put asunder" which made me crysad.She really is completely heartbroken and distraught. I want her to move close to me and have been finding out about local homes today,but I don't know if she will agree.Their house is in a poor state and will be hard to sell (Mum refuses to rent,refuses to think of staying with me etc,is generally intractable and difficult to deal with,which doesn't help,she's not very pragmatic at the best of times).I can't have them both live with me,totally unsuitable house,(4 stories) but also small children and my Dad are not a good mix now,he isn't aware of putting anyone in danger from his falling. Part of me feels angry they didn't plan for this better,but I think Mum always assumed that she would never have Dad put in a home and didn't think further than that.
My DH rang one local home today and asked about visiting-they have one old Man who goes in and sits with his wife all day every day sad sad.I cried again when I heard that.

funnyperson Wed 07-Mar-12 20:36:50

hellymelly surely no one can make your parents go into a home if they dont want to? I think you and teh family could put your foot down a bit more and ask the hospital to reorganise another discharge planning meeting with social services and ask them to come up with alternative solutions eg carers going in every day. meals on wheels etc.

hellymelly Wed 07-Mar-12 22:52:30

They did have carers going in every day,and initially that was to be upped from twice to three times a day,but partly due to my Dad's lewy body dementia diagnosis and partly due to valid concerns about my Mum,( how well she was coping/her general state of physical and emotional health),the decision was made that my Dad should go into a home.This was also agreed by my Dad in a conversation with his doc.
I had a long talk with my brother about it, and he said that however painful it is,my Mum is not coping,even though she desparately wants to. He sees my Mum weekly as he lives closer,and although I feel really torn I can see he is right,she isn't coping.She was seen hitting my Dad by a carer,and although she was hitting out at him lightly and didn't hurt him,she was clearly at the end of her tether,very frustrated and miserable. She really wants him there at home,and that is very painful for us as a family to deal with as we want him there too,but we have to think of the effects of that on both of them,and now I've had a few days to mull over the talk with my db,I can see that he will have to go into a care home.If we could afford a rota of carers in house then maybe he could stay at home,but we aren't in that postion. If my Mum was coping well with him,then I would be insisting that he went home,but she is 80,she is quite frail,she's getting very tired and even simple things like him waking her at night are having a big impact on her now.
I can't tell you how much I appreciate all the posts as I am so upset about all of this.I googled lewy body dementia,I wish I hadn't.sad.

mrswoodentop Wed 07-Mar-12 22:58:01

You could try Very Sheltered Care with EMI ,you need to look into what is in both their area and your own ,although the funding situation is also relevant.I think age concern have a support line where they could help you understand the types of care available and the funding position.

hellymelly Wed 07-Mar-12 23:01:13

DH did talk to age concern last week,and said they were really helpful and very kind and sensitive.He was very impressed by them.I am going to call them again this week.What is Very Sheltered Care? Is it like sheltered housing but with extra help?

ssd Wed 07-Mar-12 23:02:52

hi helly, it does sound like going into a home would be best all round for the family, as well as for your dad. TBH it might give your mum a bit of relief once she accepts him going, it must be so hard for them, but it seems to be the only solution. one idea, will your mum carry on living where she is? maybe a move into sheltered housing would be good for her, she would be able to mix more and might meet other elderly women who are in/have been in her situation, or similiar. I realise this might be a step too far right now, but its something for you to bear in mind (and if you do, get her name down on the housing lists soon, she could wait literally years for something to become available),

I know, or rather can imagine how upsetting all this is for you, and I'm sorry, its so hard. I hope you can keep posting here and getting some comfort, I dip in and out of here, sometimes it all gets me down and I don't want to post and dredge it all up, other times its literally a lifesaver.

suburbophobe Wed 07-Mar-12 23:05:58

Sorry love really feel for you, my mum has had dementia for the last 6 years...and dad died of cancer recently....

But I can't read anything when it's all scrunched up together in one line.

Sorry....

ssd Wed 07-Mar-12 23:09:48

very sheltered care is having a 24 hr warden, meals in a dining room, not sure about 24 hr medical care though, and it sounds like this is what your dad needs

also its hard to get into, long waiting lists

op, ring your council, they will send you a list of a sheltered care in your area, or you dads area if not near you

ssd Wed 07-Mar-12 23:11:44

suburb, thats a bit mean about the scrunched up in a line stuff

sometimes when you're pouring your heart out punctuation goes out the window and sometimes you get someone like me who is a shit typer

guanosoup Wed 07-Mar-12 23:18:31

helly, my dad had LBD, and spent his last years in a lovely care home. Dad had had carers coming in, and attending day centres, but as his mobility reduced and his agitation increased, he needed to go in to hospital for an assesment of his meds, mobility etc, and moved onto a care home from there. Despite it feeling like an awful situation where we had let him down, it really was the best solution in the end. Mum got more rest, and her health improved. Mum visited him nearly every day, and thier relationship changed from carer and cared for, back to husband and wife. The place he lived really was his home, and he was safer there.
I do hope you find a satisfactory resolution to your dilemma.

dontrememberme Wed 07-Mar-12 23:19:29

It sounds like they need a better home care package, dont take budget restraints as a reason to refuse.
As well as assessing your Dads needs has your mum had a full Carers assessment to see what she needs to support her caring for your Dad.

If you have tried every other care option avaialable & the Docs are still not willing to discharge your Dad back home then at least it is the medics decision and not your Mum making the decision to put him in to a home.
I hope you are able to find a solution, good luck

Kbear Thu 08-Mar-12 21:49:07

I am in the same situation with my inlaws, me and DH are their carers now and it's getting desperate.

We both work full time, have children and busy lives, and it's at the point where I can only see FIL going into a home for his safety and MIL's.

He tries to leave in the night, threatens her, swears, sees people in the flat, sees dogs coming out of the floor, hides keys, hides everything, cuts up his clothes.

She can't even remember to give him his tablets and hasn't for four months (I just found out) because "someone" told her at the hospital last time he was in there that he didn't need any medication anymore. He was on heart meds, parkinsons meds, diabetes meds, water tablets, aspirin etc etc.

He's back on them now since earlier this week and our invention but I went round there tonight and she's given them to him wrong for two days.

I feel your pain and I don't know where to turn either.

hellymelly Thu 08-Mar-12 22:27:36

Guano that is such a helpful thing to read and has really touched me.
My parents had such a happy marriage,and so that is very consoling to think it may not always feel so bleak.
Scrunched up in one line? Oh dear! Is that because I don't put a gap after a full stop etc ? Have never been shown how to type so I just do it as though I'm writing a letter ! (Otherwise surely my punctuation isn't too terrible is it? confused )
And thanks for the other posts too. I have a list of EMI nursing homes but will check out sheltered care, although I think he does need nursing.
(am now so completely paranoid about what is wrong with my typing that I am finding it hard to write anything.eek.I'd better not venture into pedant's corner for a while)

hellymelly Thu 08-Mar-12 22:36:18

kbear I hadn't seen your message when I posted. That sounds just horrendous. The paranoia and delusions sound like my Dad but he is not that bad yet. In a way my situation is easier than yours because we are so far away. My Mum can't turn to us and even my brother is too far to just pop in easily, so a new situation has to be found now. If I was close I would be in your position. Do your in-laws have anyone coming in to help or is it just down to you? If they are in the loop of care it seems easier to get help. Do call age concern though, as they are really helpful and will be understanding of the conflicts in this sort of situation. (at least that's waht I felt.)

Kbear Thu 08-Mar-12 22:39:54

helly, I will call Age Concern, thanks. I also have to call carers and see the doc about getting her referred for mental health assessment. It's a minefield isn't it.

hellymelly Thu 08-Mar-12 22:45:20

It is. And it is also so sad to see parents getting so frail. My lovely chatty Dad, who sang, played the piano, is a mensa member and a chess obsessive, can't do much at all now . He reads still, but he can barely speak, can't chat ,is having terrible nightmares and delusions. Parkinsons is a hellish illness.

ssd Thu 08-Mar-12 22:47:03

kbear, phone your council too, they will give you advice

sorrys its so desperate sad

hellymelly Thu 08-Mar-12 22:59:48

ssd- I will try to get my Mum to move near me. She won't consider anything like sheltered housing at the moment. She seems not in great shape either to me. My brother thinks it is the stress but I wonder if there are also issues with her getting a bit less mentally able. Are you in a similar position with a parent/s ?

ssd Fri 09-Mar-12 09:26:32

sort of

my dad died years ago and getting mum to move nearer me was impossible

she finally moved into local sheltered housing and its been great, she's just the same as before, but I feel she is safer (no steps to climb) and she has a warden who checks her every day, even if for 5 minutes

she has a good care package now, but again it took me years to set up and establish, I now think it should be increased but she says no

its just so hard having to be the parent to your parents and tell them things they don't want to hear, mum resisited moving until her eighties, she's of the generation that thinks the council have never ending money and spaces in homes/sheltered housing, just waiting for the oldies to decide when they are ready to move.

my mum still think she got a sheltered house really quick, she doesn't know I put her name down years ago,( when she was telling me the only way she'd leave her house was in a box.......)

its so hard and you have a lot on your plate helly

I'd say finding a decent care home for your old dad would be the priority, then once your mum gets her breath back ask her if she'd consider moving into somewhere more suitable for HER needs, she's probably forgotten what those are!
good luck...x

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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