Family Dispute WWYD?

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This is a bit of an AIBU but I need serious advice which is why I'm posting here.

My dm has advanced alzheimers disease to the point that she no longer recognises family members and is quite aggressive a lot of the time. She lives with my df who looks after her on a day to day basis. I also have a brother and sister who live near to my parents andare very good to them, they help with shopping and washing and ironing etc. My dbro and dsis also have power of attorney.

I live abut 200 miles away and have a supportive dp who works away quite a lot of the time and 3 children, 1 at school and the other 2 are of pre school age.

Yesterday my df was admitted to hospital and is likely to be there for about 1 week. My dbro rang and asked if I would have my dm to stay whilst df was in hospital and also for a few extra days so that he could have a break.

I had seen that this situation had been on the horizon and had been thinking about it for a while and had come to the conclusion that I couldn't cope with her because she needs help with getting up, going to bed, doesn't know who I am or where she is but mostly because of her aggression towards my children. I can't look after her as well as the children, I can't cope with it all.

When I told dbro that I couldn't have her he said that he wouldn't be letting me know what was happening as it was going to be 'none of my business' if I wasn't going to look after them directly. He now won't a answer his phone or respond to emails asking where they are or how they are. My df isn't answering his phone either and I'm worried sick.

I suppose that if I'm going to be really honest here, I'm a bit worried that if she were to come to stay for a short time, my family would delay having her back for weeks or even refuse to have her back. If I were to have her to stay, we can't afford to pay for carers and I don't have poa so she couldn't either.

AIBU or are they? Are we both NBU? What should I do? I feel like the only thing I can do is to ring up and say that I'll have her but I can't cope and feel this is wrong for my dc because they are frightened of her and they should be able to feel safe in their own home.

Sorry it's so long but I didn't want to drip drip further info.

"DP are self-funding which I suspect is why there has been no respite or carers going in, df doesn't want to spend the money".

SS won't be interested at all if this is self funded; they are just glad then not to have to do anything!.

This is so sad and your Dad is also being stubborn as well. This family of yours will implode under the strain, the strain is showing now by your brother getting angry with you for no real good reason. Him becoming angry with you will not solve anything and will make things worse longer term.

The solution to all this now is for this lady to be placed into a dementia specialist care home. Its the only way forward.

Movign yoru mother to yours is not at all feasible and she is likely to be too ill now to be moved any great distance. They are going to have to call in professional help now for their sake as well as yours.

i can understand the brother being upset

he cares for parents on a daily basis, probably as well as coping with his own life, and is probably exhausted and would like someone else to take the burden, if just for a short time

I dont think its unreasonable of him to ask you to have your mother just for one week, when he copes day in day out

I'm sorry to hear about your parents. My mother looked after my grandfather who had alzheimers also. My grandmother was also alive but too old to care for him. All of her brothers and sisters lived a fair way away and rarely helped or even offered to help. It's so hard to live with a person with alzheimers and it would be very stressful for your brother and sister to do everyday and also to watch the deterioration is heartbreaking. As busy as you are if you can help out for a few weeks, you should, even if it disrupts your life for a couple of weeks. My mother has now fallen out with all of the family because they refused to help and she almost had a breakdown doing it on her own. Both grandparents are now dead and family relationships ruined. You all need to work together in these hard times and help each other. My mum also had children when this was happening and a job.
I hope it all works out, these are such sad and heartbreaking situations.

I would argue their mother will not cope with being moved at all. This family have managed so far without outside help but now the time has come (inevitably) where this family can no longer manage. It is okay to put your hands up and say we cannot manage anymore and seek outside professional help. I note also the OPs father is going soon into hospital.

This lady needs 24/7 care in a specialist care home.

OP - If you have not already talked to the Alzheimers Society I would do so. It is not your fault in any way that you live some distance away; many people live apart from the place in which they grew up.

Could you pay for someone to live in as a carer if your husband is not able to take time off work for a week?

Poor you, Quint, I just read your thread. I am protected from a lot of this because of the distance.

FAB5, were don't have the money to pay for a carer. My df does though. My dm would need somene with her pretty much all the time.

Thank you all for your posts, they've been very helpful in looking a the issues from everybody's point of view. I think I'm getting some ideas together in my mind that involve me more directly and that I can suggest to dbro and dsis.

Well, yes, but it is not your fault that the situation is like this in your family. You have young children, and it is not the right thing to do, to move your mum in with you.

Your dad is an adult, and your brother and sister too. If they are chosing to do this level of care, and to not look into a home for her, you should not have to pick up the pieces when they buckle. If they have reached bursting point, go home, apply a fresh mind to the situation, care for your mum a few days, listen to them, and try help them see that a care home is the best solution.

Incidentally, my mum has been allocated a permanent place now, and will move next week. We are however appealing the decision as the nursing home is not suitable for my father to visit in his wheelchair, and there is no sheltered housing nearby for him to live in. We want them both in the same facility. Dementia unit, within easy access of sheltered housing for my father. Your dad may not want to be separate from his wife, but he must be under a terrible strain, and might hope for somebody else to make the decision.

(My mum also has dementia. I got ss involved when it started becoming increasingly clear that she'd lost the ability to use her washing machine, dishwasher and hoover, was washing clothes in the bath, not cleaning her flat, eating properly etc.... etc..... Was very difficult sitting down with her and ss to list where I thought things were going wrong and where help was needed. (I'm 300 miles away.) She denied everything of course!
She agreed to daily visits from a carer to stop me worrying in the end. Was a mixed success.
At this point ss were asking if there was any way she could live with one of us. Had to say no and explain why several times (kept coming back to this) and emphasise she was completely on her own , no friends etc ....
Fast forward 6 months and she had a fall and broke her leg. Again they were desperate to pack her off home or to one of us once she was in a cast and we had to be VERY clear about how she would try and cut off the cast if she was allowed back to her home which was up 9 flights of stairs anyway and had to say no and explain why several times over.
She ended up stranded in a hospital for 6 weeks. Terrible thing to do and her mental condition worsened while she was there, but was the only way to get them to realise the truth of her situation and sort out appropriate care. She needs help in every way imaginable now (18 months on). Can't imagine how that would be if she were living with one of us.
One of my brothers won't speak to any of us now. Not sure if this is guilt / sense of responsibility for how it panned out or what, but is very sad.
Do know my mum has 20 odd years left in her (early 60s) and we could not have coped if we had stepped in.)

In your situation I would would help out at your parent's house, but make it very clear it was temporary. I wonder if having a face to face chat with your df about day to day life is going to make things clearer? Then maybe broker a meeting between ss and your df in hospital. The ward sister will point you in the right direction. Then you can add how much of a burden it is on your brother and sister. You need to lay it on thick in my experience. Our experience is that ss do work in the hospitals and are familiar with this kind of situation.
Horrible though it sounds it seems like your brother and sister have just about had enough anyway and you blindly taking over (for now) isn't helping the situation beyond delaying the inevitable. Also it seems at the moment you're hearing everything from your brother and sister's perspective and it might help to try and get a more objective view. There's also an assumption your brother and sister do step back into the fray when your df is back home. Are you sure they intend to?

I can understand your siblings wanting a break BUT they are wanting you to take sole care of your mum as well as 3 small children, when they have not had sole care of her at all? as your father has been caring for your mother?

Horrible situation for everyone.

They need to get a proper care package set up. im also wondering if your bro and sis have power of attorny whats the issue with your DAD not wanting to spend money on carers? cant your siblings just do it?

I agree with the suggestions about you going up there for a few days: it shows willing, that you do want to help with your parents, and it means you won't be talking from a point removed from the nitty-gritty where you're all theory and no experience. It also means you can talk face-to-face with your siblings and hopefully clear the air.

I hope your dad gets well soon and the situation can be resolved to make life easier for everyone.

My in-laws had dh's grandmother living with them. She went to her other son's whilst my in-laws were on holiday and they effectively put her in a home because they couldn't cope. You've got to be careful to acknowledge the hard work your dbro and dsis are doing and to suggest a home now is basically saying they're wasting their time. For you to go to your dm's on your own allows you to be with her 24/7 and gives a set time-frame you can be away for. It will help your siblings acknowledge your limitations and hopefully the fact that you're putting yourself out by leaving your own family for a while. Once you've experienced a week with your dm, it will put you in a better position to be able to negotiate what's best for her in the long run. It might also be a last opportunity to spend some quality time with her, and that's probably what's most important.

Caring for someone with dementia is hard relentless work. I know this as I used to do it professionally. There is no shame in investigating the possibility of respite care. When I met family who were investigating the possiblity of putting their parent into care, they were often full of shame. I, however, was always full of admiration for how long they had managed to keep on going for so long.

Have you considers what happens after your Father comes out of hospital? He may need time to recover, he may not be able, physically, to go on caring for her in the way he has. Perhaps this is the perfect time to reasses the situation.

There's not just your mother to think about. What sort of quality of life does your father have at the moment? Given he is currently frail, if he does not recover sufficiently, and continues to look after your mother full time, with the support of your siblings, what sort of quality of life can he, and they, look forward to in the future? She's not going to recover from this and it's all downhill now.

Despite what your siblings say, it's time to get SS involved, for their sake as well as your father's. You can't help living 200 miles away, but you can be the one who stands back and sees the whole picture.

I would imagine that it is your Father that is so opposed to your Mum going into a care home, and would be upset that he would have to admit that he could no longer care for her and that your brother and sister are doing what they are doing because they are supporting your Father.
Ultimately any final decision rgarding her care will be up to him as her next of kin!

I also think you need to go and visit to help out, it is a family emergency after all.

Im not sure the family would be happy, if OP decided to research a home etc
Given the OP is not helping with the mum daily, I think the family would think its not her place to make judgements like that
Especially as they deal with her daily, they are more in a position to say whether "mum" needs more suitable accommodation or not
Who knows how far her dementia has gone? none of us OP, and certainly sounds like the OP does not know as much as the rest of the family

No Im not being judgey either, I completely understand why you can not help OP.
I just think given your not really that involved with the daily care of your mum, I would think your family would be very upset at you for suggesting homes etc.

I think calling SS would massively rock the boat here.

Given the OP has had no involvement in the daily care of her mum, to be asked to help out once, then the OP calls SS, im afraid you may end up losing all your family doing it this way

Do as quint said, go up for a few days and help, after doing it for a few days, I think the OP will be more able to decided whether she needs more help or not, and chat to family

You must consider getting SS involved and say you need emergency respite care - even if it needs to be self funded.

The system in Scotland is different (free nursing care - but that does not mean free care): SS here offers up to 6 weeks respite, recognising that if they didn't, then people would end up not coping and they'd have more call on their (limited) resources.

My mum (with a rare form of dementia - not Alzheimers - but a form of frnot-tmporal related to a head injury she sustained 4 years ago) was booked into respite care so my dad could go to a college re-union (2 week trip). In the event, she broke her wrist (balance is another thng that is progressively going :() a month before, and dad decided he could no longer cope, so instead of going into the home for the respite, she had to get an emergency placement at a different home that had space :(.

Fortunately my father - even though he feesl horrifically gulty that he couldn't cope and has only recently (on the advice of the dementia team) stopped bring home her home regularly for the day - never put any pressure on either my brother (with 2 babies) or me (with a 10 year old) to look after her, even though we live locally (with 10 miles).

Someone with dementia needs 24 hour care to be kept safe - not something you can provide with 3 young children. Either your children or your mother would be in danger if you were to look after her at your home - and that is before even factoring in the disorientation she would feel in a strange house.

You need to explain that to your siblings. Again maybe SS, the Community CPN or a support nurse from the ALzheimers Society (if your area has one) can help in clarifying the sitation and the realistic options to the family.

I think QS' suggestion of trying to get time off to over to help out is a good one - but only if your siblings are prepared to use the time that you are over there to also address the longer term picture.

Hi, I am a carer myself so have experience with the elderly and dementia.
I think you should go ahead and organise the care yourself, you are her Mum afterall and you have a right to say what happens to her as much as them. And I think you should go over and visit her when you can.

It's too much for your family to expect you to have her under your circumstances.

I don't understand why they are being funny with you as she needs professional help and they can't provide this for her and neither can you.

How often do you visit her normally?

Agree with Quint - moving your mum out of her familiar environment is probably not such a good idea. If you go to her, you can really see what life is like for your siblings and hopefully between you you'll be able to agree on some sort of care for her. Hpefully your DH can take some time off to be with your DCs, if not do you have inlaws, friends etc who could help out. You really need to go.

"I just think given your not really that involved with the daily care of your mum, I would think your family would be very upset at you for suggesting homes etc".

But why would this be bearing in mind that the two other siblings are likely to be now at the end of their respective tethers?. If they are arguing, "no home for mum" I would also be wondering why they are saying this. It also makes me wonder why they have tried to carry on without seemingly any outside support (Social services will not do much unless you are both really desparate and have little funds). It is no shame on their part for them to now put their hands up and say that professional help is now needed.
Instead of this the OP's brother asks the OP who happens to live miles away to have their mum for a few days and perhaps a few extra as well. With advanced Alzheimers this is just not feasible, let alone adviseable if this lady has become violent too as a result of the Alzheimers.

Her brother also needs to start talking to the OP: not doing so is counterproductive to the whole situation and makes him also look petulant.

OP

I have been following the posts with interest, as my MIL has Alzheimers, my FIL is 80 and they are 250 miles away from us with their other son and family in the Us of A. I have long wondered what we would do should somehing happen to FIL so he can't cope. And we have decided that a care home will be what happens as we cannot possibly cope. Alzheimers is an illness that needs a team of professionals who are not emotionally involved in the long term. Actually, I will put my hands up and say without shame" I am not prepared to cope".

Do not bring your Mother to you - she will ask to go home immediately and the chances are you would not be able to manage this. . We made the mistake of bringing my MIL and PIL to us a couple of Xmases ago and it was a disaaster - from teh minute she arrived all she would do was shoult and scream she wanted to go home! Until we took her home on Boxing Day!! (1000 miles of driving for this round trip!). Also, don't forget, you probably can't leave your Mother alone for a minute in the house while you pop to nursery, school, shopping - so in effect you will be adding a very agressive fourth child to the mix. So for every school run, every trip out you will have to get her ready as well as the kids.

I think it is a good idea to TRY and go to her but I would be very clear from the outset about exactly what you are prepared to do or not do. Sounds like you and your siblings need to get together and have a heart to heart.

Thank you all for posting and especially for trying to be fair to us all. I do feel very guilty that I'm not physically closer to my mother. Of the three of us I think I was probably her favourite which makes it all worse and I do miss her very much and would like to spend more time with her while I still can. The idea of doing so when my df is in hospital is a good one.

I'm not sure if I mentioned it but I did have dm to stay here 4 times during 2010 each time for 1 week t give my df a break and it was more difficult each time which is why I felt that I couldn't have her to stay again. She was especially hostile and aggressive to my middle child who remembers this and is now quite frightened of her which is one of the reasons that I'm reluctant to bring her into our home. ATM I normally visit them about twice a month which, I understand, is very little compared to what my siblings are doing.

I managed to get through to my df this afternoon and he is out of hospital now and back at their flat with dm. Although I asked, he wouldn't tell me what arrangements had been put in place on their return to help them.

From conversations that I've had with him during recent weeks I don't think he is averse to the idea of dm going into a home, it's my siblings who are against it.

Sorry - should have clarified when I referred to the system in Scotland: that means I don't really know how it works in England.

But at the same time, whatever country you are in, there should be no shame in asking for help.

I feel for you: it is not a nice time :(

It's good to hear your dad is out of hospital.

I know my dad has really appreciated the fact that I have never judged him for the fact that he felt the need to put mum into a home. (In our case it is made worse by the fact that she still has both her short and long term memories - it is a very complicated form of dementia :(). He feels enough guilt and sadness without needing opprobrium from one of his children. He loved - and still loves - her very deeply.

However much I could or would have gone across to help, I still wasn't the one who was having to live with her 24 hours a day.

I think he had had some issues with my brother - but he is careful not to get involved (my brother and I tolerate each other) so we have never really disucssed it.

Your siblings can only lay guilt on you if you choose to accept it. If the right thing to do is for your mum to go into a home - then that is the right thing, however painful it is. You can be sad - but don't feel guilty.

Keep talking to your dad. He's the one that needs the support at the moment.