Help Desperate for advice on elderly mum living in care home who wants to return home to live with us!!!

[Avalon85]

I originally posted a couple of years ago on www.mumsnet.com/Talk/relationships/a1448462-Feeling-increasingly-irritated-with-elderly-mother-who-lives-with-us

Since then, my mother became more and more infirm and was admitte to hospital. She had a stroke whilst on a rehab ward (learning to be more mobile after her ulcers became serverely infected) and fell, cutting her head open. She now has mobility issues beyond what she preivously had. She's 92, and was finally admitted into a care home as the social workers felt it was best for us all - my husband, daughter, myself, and her). We run a business and work together 24/7 and since she has been in the home, our lives and our marriage have vastly improved. She is using a walking frame now but is very wobbly, is pushed in a wheel chair and is often giddy, and on 2 x morphine tablets, lots of paracetamol, a sleeping pill and has nurse visits at the home to dress her ulcers twice or three times a week. She has been there since April and we visit every other day as I chose somewhere really nice (took ages!!) and its 5 mins from home.

My problem now is that she is always saying she 'wants to come home when she is better' but the hospital feels that this is as good as it gets for her. But....big but here. If we were to create a bathroom downstairs, get disabled ramps, turn our study into her bedroom, allow carers free reign of our house for visits/to cook for her as and when needed and nurses in for dressings etc (we have two small excitable dogs at home too) and put up with all the negativity, round of hospital visits, people in and out, not to mention the worry about whether she would fall when we weren't there, she feels she could come home again.

I am going to sound like the worse bitch in the world but I cant, just cant, go through this again. I love her but I don;t enjoy living with her. I didn;t enjoy it before she was this until. My life had virtually stopped and our marriage was under strain. LIfe is tough running a business and having a 17 year old daughter to parent too. I really cant do this again. The home is lovely where she is and they adore her. She is settled to a degree but was more settled recently until my parents in law started taking her for weekly outings to their home (They got bored sitting in her room at the home for weekly visits - she WONT gointo the day room or interact with the other residents). Now she's been to their house, she wants to come back to see 'her home' (which is actually our home, and my husbands house - he owns it!). She is refusing to settle completely at the home as she thinks she can come back again.

I have now been told for my own health and sanity, and for our marriage's sake, that I need to be the one (only child here!) to tell her why we feel she wouldn't be safe at home with us and why we cant cope with it all again. In the past she has fallen when we weren;t there, has left the gas on, has broken glassware and cut herself, and has (without being too indelicate) made our family home smell like a geriatric ward. Her ulcerated legs absolutely reek sometimes - literally hard to breathe! Imagine being 17 and having friends over with that going on! I know I sound awful but Im trying to be honest. Add to this melting pot the fact that she and I have always had a difficult relationshihp as she was over protective when I was younger and now overly involved/opinionated in our lives.

If she would just accept it I would bring her for visits, lunch etc but I am always aware that it could unsettle her. we've talked to her before and she appeared to understand - we both got upset and tearful but it was all fine when we left. Two weeks later my husband siad he wasn;t having a room in his home he couldn't use and wasn;t having a shrine so he redecorated the room she used to use as a lounge and we put what was left of her furniture in storage at our workshop. We didn;t say anything in case it hurt her as we'd only just discussed it. She has a lot of her own things at the home anyway and a really lovely room with her own electronic bed we bought we etc. However, imagine our shock when the time the subject was raised again, she claimed we had NEVER discussed it with her before and was very angry, literally furious that we were trying to push her out. My nerves have been bad and I was covered with hives until we found her a home. Eventually, they dubsided but when we have one of 'those' conversations with her in the home, I come out scratching again! I just can't live like this with a sword dangling over my head, waiting for her to demand to come home. Its making me feel ill. She keeps saying to me (accusingly) 'I know you don't want me back!!" I keep saying, its nothing to do with want Mum, its now about what we ALL 'need' as a family, as a couple, and that includes you!

She is safe and well cared for, has more visits than she ever did before and round the clock attention. We don;t have to keep looking over our shoulder any more. But this uncertainty is destroying our happiness. How the hell do I explain to her (shes stubborn and quite selfish and single minded) that we have cared for her for 13 years and we just can;t do it all over again. Mentally she is sharp as a razor and twice as cutting when things don't go her way. I dread raising the subject but I know I must sort this once and for all. What the hell do I do!!! Please don;t think badly of me.

Biddypop, you have a lovely family, and I agree with what you say.

I just hope I am fortunate enough to remain independent into my old age

I haven't read all the replies, but I am in the same position as you. My Mum is now totally immobile and incontinent. She lived with me until she became ill. She went into a care home 5 years ago because I could not lift her or get her to the loo. This year she has been in hospital 3 times and each time came out worse. She is now in a nursing home 30 miles away because the care home could no longer have her. Every time I visit she asks to come back with me, but I have to say no and then she swears at me and says I don't want her. The infections she has had have caused confusion and short term memory loss, so i know that half an hour after I have gone she will have forgotten me. The guilt never goes for putting her in a home but I know that this is best for her. So I do not think badly of you at all. Have a talk with the staff and ask what your Mum is like when you are not there. The carers say Mum joins in with activities and is happy. She is in a brilliant nursing home so I have no worries in that respect. I have had to learn to say "Mum I am going now, see you on Thursday. Take care, Love you" Then give her a kiss, ignore her pleas ans walk out. Then have agood cry in the car and go home - only to have to do it all 2 days later. HTH

Just marking my spot as I don't have time to read all posts now and write, but I work in that area and will be able to help. But as everyone said here, do not feel guilty. She is safe and well cared for. I will post again.
I know how hard it is, don't feel bad

Might be able to help, I meant. And homes are not what they used to be and I'd be happy to go and live in one. Plenty of outings, activities and company there. Not a dumping ground as someone has said!

*TheBakeryQueen Mon 05-Aug-13 19:07:27
I think you have already made up your mind that your mum is not coming home to live with you.

I couldn't, in the situation you describe, leave my mum in a home. She may only have a few years left & I know I couldn't live with myself. But that's me.

It's your decision to make & you've got to be able to live with it. Have a think how you might feel in years to come. Do you think you might regret the decision to not have her home?*

I used to say all this but until you have been in that situation you do not know. I really tried to look after my Mum. Strip washing her everyday when she had messed herself, because I couldn't get her upstairs to the bathroom. Washing floors because we did not make it in time. Getting up several times in the night to help her on to the commode. Dressing and feeding her. Could not get much help from SS or Attendance Allowance until 6 months had passed, by which time she was in hospital. Son came every night to help put her to bed. Not being able to go out unless I got a sitter in case she tried to walk and fell. We decided that when she came out of hospital I could not physically do it any more. My god the guilt was horrendous. I still feel guilty and folk saying they could not do that to their Mum makes me feel dreadful. Perhaps I should have tried harder but I know/hope I made the right decision. She is happy and well cared for. So try not to make people feel guilty until you have been in that situation.

My own Nan finally went into a care home a few months back and this lady saw her 100th birthday a few years ago.

She had daily carers from a private company; the attendance allowance that my Dad received for her went nowhere near paying for the level of care she needed these past few years - and subsequently went on to need. The whole situation re my Nan deteriorated very quickly, it got to a point real fast where the level of need far exceeded what the level of care the daily carers provided. A joint decision was made by both my Dad and my Aunt (her H had died some years previously) to move her into a care home. This was not done easily either in a physical sense; demand for places is high and the first one would not take my Nan because they were full.

Now she is in a care home (and this one is nice and does not smell of wee) she has put on weight as well. After a fair amount of false starts she has settled into life in the home. My Dad is also happier and does not feel guilty.

Another person who's had similar experiences but with MIL. You said in your OP that she was safe, well cared for and had plenty of visits. Think about that....that is a good situation. She is well and sees you very regularly, besides the guilt you are all much happier. I'm not being unkind but some elderly people don't have a clue about how much support they really need, she probably feels better because she is in a good place with constant care. I cared for my MIL for several years before her dementia got too
bad. She was very annoyed and upset at having to have carers, she struggled at first but for my own sanityand that of my dp we had to do it. Be firm and kind, stay present in her life but recognise your limitations. Good luck, I know how hard it is.

I am personally just relieved that we have all come to an understanding now and are moving forward. My mum seems much happier and is actively trying to socialise more now. She says she just didn't understand where she stood but now she does, she is perfectly comfortable with it. I have no regrets because we brought her to live with us (at a massive upheaval and cost at the time) for 13 years which is a long time to try to look after someone and keep them happy. She didn't have to contribute a penny towards anything and we made sure she was very well cared for. But during the last few years, it has taken it's toll on all of us, emptionally, physically and relationship-wise. Her health has seriously deteriorated beyond a level we were able to deal with and it was social services, not us, who recommended a care home following her 3 months in hospital. We also have a manufacturing business that originally employed over 30 and now has 23. We are on our knees trying to make sure everyone we employed can still pay their mortgage, leave alone ours, and I am needed there as much as my husband. If we lose the business, we lose our home so there would be no where for my mother if she was living back with us anyway if that happened. We are finally free to concentrate on our own lives and she sees us as much as ever. I am taking her a small fridge for her room today as she wants something to keep her cold drinks and snacks in. She is looking forward to her first trip home here which will be in a couple of weeks. Win/win I'd say. I am actually so relieved and feel I am able to finally smile again without a shadow over me. I need my energies for our own lives now not in worrying constantly over hers. The last thing I wanted was for us to come home (or worse, my 17 year old to come home) and find her Nana had fallen (again) on, say, the tiled floor of our kitchen or conservatory. We couldn't keep her tied up and she is very stubborn and inclined to 'potter' when left to her own devices! Thank you to all of you who have been wonderfully supportive, my grateful thanks, and to those who think I'm wrong in not insisting we have her back- (and give our keys to an army of unknown caters and professionals to come and go in our home as they please when we are not there. We need a sanctuary of our own to return to after work, not feel invaded) - you are entitled to your own opinions and i respect them but you'd have to be in my shoes to fully understand. Positive enenrgies and kind thoughts to all of you who are in a similar situation to me. It ain't easy!

My Mum is in a flat in CH at the moment, she has Dementia. Things weren't working out well at home with Carers. She wanted live in carers which my Brother supported, but she has a bad track record of accepting the daily ones and I felt this arrangement would break down quickly and it was better for her it go into a self contained flat in a CH.

She agreed to go in after an episode where she fell and spent 6.5 hours on the floor without calling for help though could have done any time. She told the Manager there she knew it was right for her to be there but changed her mind and refused to go.

She then became unwell as wasn't drinking and had a UTI. Brother agreed she should go for a few days bu still wanted to try live in Carers as that is her wish. The afternoon she got there she told me she needed to be there as she was past live in Carers but as she feels better she has changed her mind. However a psychiatrist has said she doesn't have capacity and the GP visited her at home the day she was ill and said she must go to the CH as unwell so effectively she was removed by her GP under the Mental Capacity Act.

We do not have POA and the SW has said she must stay until a case conference is held and a Best Interests meeting is held. My Brother feels this is all my fault but doesn't realise that when the health professionals hear he hasn't seen her for over 4 years you can hear the rolling of eyes down the phone. He has told the SW I want her in the CH 'to protect my inheritance' which has raised a massive red flag in Mum's case. He has fired me though is paying me for now and cut my DH's hours down to 2 days a week later this year and apparently no longer considers me to be his sister.

My Mum thinks I am evil, plotting against her and when I took DC's to see her said she thought I had poisoned the cake I gave her which really really upset DD and both are currently refusing to see her.

Fortunately I am very well supported by the rest of my family and friends. I have a very good friend who works in Community Mental Health who has been very helpful. She hasn't told me what to do but told me what factors to tame into account when making decisions. I do feel guilty, who wouldn't and i've had some horrendous times throughout this. But I know I am acting in Mum's Best Interests and although her wishes are paramount my health and my family life is important to a d that is what the professionals are telling me, they've seen this a 100 times over.There are often no good solutions in these cases and it's a matter of the least worst choice in the circumstances.

Very long post from me, I'm sorry. OP I'm glad your DH stepped in and she's agreed to stay. I absolutely understand how you feel and think you have done the right thing.

Pudcat, I am not trying to make anyone feel guilty. And don't tell me what I would or wouldn't do in a given situation. I know what I am capable of.

it gets a point when it is simply not safe fir the person to stay with family, let alone healthy for the entire family. Constant falls and accidents are dangerous and damage the sekf confidence of the older person and the carer gets guilty and stressed, in the end it takes a toll on everyone and the environment gets strained. For an older person to go to a home where they are well and family goes to visit, take them out regularly (health permitting) and keep them very much part of the family albeit luving in a different - yet more appropiate environment is nit something to feel guilty for. Thats me talking proffesionally.
My dads aunt has recently gone to a home, she is delighted, she has all her marbles and thinks is lovely to be able to call on staff everytime she needs something. Someone on the family takes her out (even to their iwn home for a meal) at least once a week. And the person that was her main carer, her daughter, has her life back. Everyone happy. When there is care and love, things can be worked around.

Avalon, I'm so glad your mum seems to have settled down, and it sounds like it is by far the best thing all round.

I'll have to 'put my mum in a home' in the next year or so. She has dementia, and not in a sweet old lady, bit dotty sort of way, but in a spitting food, lost most of her language, what she does say is very often unpleasant and rude, and physically frail way. And she's only 72, so could go on for a long time.

I think until its your parent with dementia, you don't know how hard it is. My grandmother had dementia, and I thought I knew what mum went through with that. But now I know I had no idea - and mum was 20 years older than I am now, so retired with no small children.

Others may have judged me this week - my dad had surgery and had asked if mum could stay with me for the week. I had to say no, and they had carers coming in to look after them both. But I need them to start accepting that its beyond us as a unit, and dad is so frail another crisis is always hovering

It always makes me laugh when the sanctimonious types come on and spout about never putting their relatives in a home. Until you've experienced trying to care for someone with aggressive dementia you have absolutely no idea what you are talking about.

Cleopatrasap, are you referring to me? If you actually read my post properly you'd notice that I specifically said 'in the op's situation' that I would care for my mum at home. I did not say I would care for someone with severe dementia at home. I'm not sure what I'd do in that situation.

Many people care for elderly relatives at home. It is not that unusual. Just because I have said I couldn't live with the guilt does not make me sanctimonious.

I know quite a few people who have worked in homes for the elderly. My experience of care for the elderly in hospitals is that is leaved a lot to be desired.

My dad died from cancer when I was 21, before that he was an alcoholic. I tried to help him & stayed at his house with him in difficult conditions when I was 19.

I've stayed at my nan's to give my mum & auntie respite.

My uncle has Down's syndrome and is suffering with mental health problems.

My mum is a very experienced community nurse who specialises in mental health/learning difficulties & challenging behaviour.

I've had quite a lot of indirect experience of the 'care' industry from a young age really.

So I can safely say what I would do I the op's situation, with my mum.

Why has that rubbed people up the wrong way? I'm not having a go at anyone, so why are you calling me 'sanctimonious'?

People can have a different perspective to you.

Because what you will do in a certain situation can be very different from what you do do when the time comes.

TheBakeryQueen
Pudcat, I am not trying to make anyone feel guilty. And don't tell me what I would or wouldn't do in a given situation. I know what I am capable of.

Maybe you are not trying to make people feel guilty, but this sort of attitude does. Until you have been in that situation you do not know how much you are capable of. I used to think that I could look after my Mum and I did my best. But my best was not good enough. My health suffered, my time for my husband suffered. My social time went out of the window. I am pleased that you know you will never put your Mum in a home and I hope you don't have to. But if you do then the only thing I wish for is that you feel as guilty as I do when someone says " I could never put my mum in a home". 24 hour care non stop is totally different from I've had quite a lot of indirect experience of the 'care' industry from a young age really.

I have a lot of direct experience of care homes (I work in one). Some are ok, some are not and some are very good. There are some excellent carers out there who do a sterling job of caring for our elderly loved ones in care homes. Staying at home is not always the best option for a myriad of reasons.

Imagine making a commitment to one of your parents that you will always look after them at home and then when the time comes having to face delivering 24 hour care to an individual with complicated medical and nursing needs - PEG feed, complex dressings, O2 therapy, frequent nebulisation, suctioning, swallowing problems (very common), doubly incontinent, hoisting, risk of falls, depression, anxiety, day/night reversal, poor sleeping patterns (pacing or wandering at night) etc etc.

People with dementia can be extremely challenging. I remember in particular a devoted son (only child) who was met with "f*ck off, I don't know who you are" every time he visited his 94 year old mother with advanced dementia. She was physically aggressive to him, would scream and spit and her language was enough to shock a navvy. Previously she had led a charmed genteel middle class life, was devoted to her son and his family and volunteered at Oxfam. Her dementia rendered her unrecognisable. She had no idea who her son and his family were. He would leave in tears, completely devastated. Imagine coping with that 24 hours a day?

In practice, some of our elderly have such complex needs that it is not safe for them to be cared for at home. Indeed, these people would not be permitted to stay at home. I know the OP's mother is not in this category but the point I'm trying to make is that if you make such a sweeping promise to your loved one then when the time comes it may not work out like that at all and the feelings of guilt, disappointment etc will be even worse.

Good points drasticpark. I had told my Mum that I would look after her as long as I could. She understood this, it is only since illness related dimensia has set in that she asks to come home and gets nasty. Oh how I cry and wish I could bring her home.

I think you are reading something into my brief post that isn't there.

It's an emotive subject and I think you're projecting.

I repeat: I can have a different perspective to you.

I'm sorry for anyone in this situation