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.

I would get the staff on your side for this - the doctors say you aren't going to be well enough to move out mum, we wouldn't have a hoist if you fell. I think that you just have to keep on with "no". She has a home where she is well cared for, and your home is not equipped, either physically or emotionally, for her living in it.

Just keep on with neutral statements: "You are not well enough to live outside this home without a level of social care that cannot be provided for you" etc. without using you or I.

I think it would be madness to make the backward step of having her return to your home.

But do you really need to tell her that she can't do. Can you not tell her that she can return once she is strong enough and/or you have some conversion work done etc etc?

Even to bring her home would mean turning your house and lives upside down.

My mother is increasingly infirm at 89, sharp as a stiletto and nasty to match. I would never live with her, nor subject my teenage children to her nastiness.

I would say if you want your life to revolve around her needs go ahead, she may last another 10 years slowly disintegrating.

Sorry to be harsh, but that's how it could ( will) be. She's had the best of her life, your daughter has most of hers to live, never mind your sanity.

I don't think badly of you at all and I can't imagine anyone would. Firstly have some unmumsnetty like {{{{hugs}}}}, you are not the only person in this situation and I'm sure some others will be around to offer you good advice shortly. I saw my mum go through this - my nan moved to live with us when I was 9, she had a granny flat and all was well to start with but gradually dementia started. Mum was totally worn down.. Nan would go off wandering, was a risk in the kitchen just like you've mentioned, had incontinence etc.. Finally, Mum was persuaded to look into nursing homes - Nan hated it but Mum found the best solution was just to state that "it wasn't possible and wasn't the home lovely? change subject"

I think you just need to tell your mum that it isn't possible, you are worried about her safety and that your children are at a phase where they need you more. Can the SW or care worker help you with this?

I wondered if this was senility but you say she is mentally all there. So I fear it is just someone being manipulative, and being 92 is no excuse. Sounds also like a case of selective memory -and also if she is not 100% physically her memory will be affected.

filial duty is to care for your parents - but it doesn't mean doing it all yourself! She clearly cannot live with you, she needs to be somewhere with 24/7 help which means the professionals who work on a shift system. You have arranged a nearby and by the sounds of it highly suitable home for her. We all know that care homes are not the same as independence but there comes a time in life when they have to be accepted. In addition, it has been proved that if she lives with you she puts herself and all of you in danger.

your husband is clearly on your side. So the two of you know need to get the inlaws also 'on message' so everyone stays strong.

sympathy!

Oh Lordy, I do feel for you. Am in a similar position, including the hives! But luckily I have a brother and we are dealing with Mum together, also my Mum wants to live in her own home, rather than mine. (I have small children and lots of steep stairs, so here isn't an option for her anyway). My Mum is in a home she hates, which was a temporary measure, and she will be moving to one near me very shortly. The big problem is that all medical staff insist she can't live alone now, her fall risk is huge and she gets confused at night sometimes, but she has capacity to choose, and she wants to be in her own home. We are moving her here and then will assess things if and when it looks as though she likes the area and wants to stay.
Anyway, didn't want to rattle on about myself, but just to make the point that as with children, sometimes a situation isn't ideal, the parent might not be delighted, there might be compromises, but it is the best you can do, and that is all you can do. My Mum is safe, she is fed, clean, cared for. Her hair is done and she has a reasonable diet. She gets visited twice a week now, but it will be every other day I expect when she moves here (the home is 15 minutes drive away). Looking after your Mum without any siblings to spread the load sounds as though it would be hellish. And that in itself would have an impact on your mum and her general happiness. To be honest I would be cowardly about it and fudge the questions, and just give her as much loving care as you can whilst leaving her in the home. But maybe you would prefer to say directly that you can't really cope with meeting her needs at home, but that you will do everything you can do make her happy and comfortable? It is very tricky, but it sounds as though she is deteriorating slightly mentally and so you could bring her home only to have to return her in six months and that in itself mught be more stressful and unsettling for all of you, than leaving her where she is.

You have to put your health first - you have to make yourself and your DH & dc priority. Your mum is safe and being well looked after where she is, you can still visit her and possibly take her out on short trips but she is at the best place for her needs and you need to focus on yours.

Stick calmly to your decision. Not that it will be easy. But it is YOUR and DH's decision to make, not hers, even though you may feel horribly guilty about it.

The home sounds very good, as they care for her well, and she sounds settled there too.

The key point is that care staff have shifts. Family have none. So unless you have live in help, having a very sick person with you long term is going to exhaust you, however good your intentions. Because you will be on call 24/7. This is the reality of it.

Can she come to your home for visits as well as you going to her? This might be a compromise you can all cope with. Or does this unsettle her (or you) so much you can't realistically do it?

You poor thing. You have done so much. Stick to your guns. You have a right to your own life - so does your daughter. Could counselling for you help? Reframe the issue and help you handle the conversations? Good luck!

This website has been a godsend for me in helping me clarify my thoughts.

Mikegamble.websitetoolbox.com

It's a US site, and some of the info,there is not applicable ( VA, Medicare etc) but there are some very wise and witty people on there.

Please visit it. I think you will find it really helpful.

"Mum I'm sorry you don't remember, but we discussed this before and we all decided that the care you receive here cannot be matched in our home and you will be staying here."

and repeat ad nauseum.

Firstly, she's got to go into the day room at her home. She must be bored stiff. Can't the staff there bring one of the other ladies in to meet her for chats and then gently encourage them both into the day room?

Let's face it, the care home will want her to stay. I imagine it's hard work when a new resident arrives and it's much more cost efficient to have someone there for a long period of time. Get them onside. If she could enjoy being there and stop being so bloody stubborn you wouldn't have such a battle on your hands.

In your business, do you both work from home? It would be easier to say that you simply wouldn't be at home in the day time and that she'd be bored and at risk of an accident.

It must be hard for her to adjust, so be patient and give her time. I don't suppose any of us think we'll live in a care home and would find it a struggle at first. Having said that, don't give in!

Is she self funding the care home ? . Does she have capacity to make that decision ?

Oh Avalon not sure I have much advice but I can totally sympathise. My mum was living with us when she took a serious stroke less than 6 months ago. Rehab was of no help to her and being an only child meant I was left to take the decision re her future care alone and quickly (hospital just wanted the bed back). I found a good care home 5 mins from our house. Felt overwhelmed with guilt, not the family life we had planned (my mums only 67) but with two young children (under 5) not to mention my own marriage and job to think of I felt 24 hour nursing care was beyond me. At the risk of sounding selfish I wasn't sure I could give up the mother/daughter relationship in order to be her full time carer. God that sounds awful but I was terrified I'd be a rubbish mum at the same time. Now that my mum has taken a few steps with assistance she thinks that in the long term she can come home with the help of more rehab and the thought terrifies me. The responsibility is more than I can comprehend tbh, she still needs 24hr nursing care. Sorry for the long story (and lack of advice!)but just want you to know you're not alone xx

Op - much empathy. The last years of a parent's life can be so difficult. My mother battled every single stage that took her independence away from her. She wanted to live independently and be her own person. She was so determined that once she understood that her heart was failing and couldn't be cured, she actually hastened her death by stopping eating!
The strain on us was at times unbearable. It did help to understand that she was battling to live as she wanted, rather than in a care home according to other people's timetables. For her, independence was everything. My Mum didn't live long enough to 'come to terms' with her loss of independence but I think that if she had, it would have been her peers and medical staff who would have helped with this.
Does she still have any relatives or friends (of a similar age) who may be able to intercede?
Can the care home provide anyone to talk things through with her?
Having said that, she's from that tough generation who battled through the war, stiff upper lip etc and in my experience were not very open to 'talking things through'.

I also want to recommend 'A Bittersweet Season' by Jane Gross.

This book is compassionate and wise, but very hard headed.

The author is particularly clear about how elderly people with increasing mobility issues should have more help, not less, in place.

Well worth a look. Gross also has a blog at the New York Times website which is very illuminating.

I do understand. I really do understand.

I am in a very similar position with my own mother. Like you, I am an only child. My mother is being cared for in her home, with convoys of carers. She is refusing to go into a home. She is almost entirely immobile and calls us when she wants a window opening or closing. We make a minimum of 3 visits a day. The carers make 3 visits a day, the district nurse and the GP average a visit a day between them. It is horribly intrusive and tiring and she has no concept of the cost to us at all. She resisted the carers for ages, and actually told me that she thought DD could be her carer ...

You have got to preserve your own family. You are responsible for your children. That's your primary responsibility. Actually no, scrap that. Your primary responsibility is to yourself and to your well-being so that you can carry on doing all the things that you do. You cannot destroy your wellbeing for that of your mother, who, as you say, would in any event be better cared for in a home.

Don't feel guilty. You have permission from MN not to host your Mum any more. You've done enough. In fact you've probably done too much.

Oh, OP you have my total sympathy. I had exactly the same with my mother. Even worse was that because a catastrophic stroke robbed her od her short term memory, she could'nt remember what I said. I just kept on repeating calmly but firmly that it wasn't possible for her to live with me as I had to work. Eventually she stopped asking and was quite happy to come to my house for the day and then be taken back to the home.

But the worst problem, with hindsight, was my guilt. It did feel wrong to be 'dumping' my precious, much-loved mother in a home. It's a goof few years since she died - and he guilt has gone. It was the right (indeed the only thing) to do in the circumstances.

I know it's hard, but it has to be done.

Incidentally, she was in a home very near where I work, so I had my lunch with her every day (and took her out for lunch every Satuday) - I was usually the only visitor! Bloody tragic!

My nan lived with us when I was growing up. She had reasonable mobility and a bedroom upstairs, then she had a fall, went to hospital and then rehab. We had the exact scenario of downstairs extension and carers/nurses visiting while nan became progressively worse. Nan eventually went in to a home as my saint of a mum was on the verge of a breakdown. Nan was her MIL so extra halo for my mum.

My mum has since told us all that no matter what she (my mum) says in years to come none of us should let her live with us. I think this talks volumes about the pressure she was under looking after my nan.

On a purely selfish level it wasn't nice at times as a teenager to have my nan living with us. Myself and my siblings used to help look after her (because she's your nanna and you want to not because we had to) but we all became her carers. I don't look back and wish my nan hadn't lived with us because she was wonderful and I miss her every day but I do think that our family life improved massively after she moved in to the home.

No way any of us would think badly of you OP, no way.

This is so hard and many of us are going through a variation of this. Do not feel guilty - stick with your decision.

To be hard nosed about this - she may live in this way fr another five years or so and where will you be then? You'll have missed enjoying the lt few years for your DD living at home, your marriage may be under strain and your business I'll suffer. All for providing less safe and less appropriate care than she has now.

My cousin handled something similar with her mum by saying it was just until she got better. Which you my think is deceitful, but it gives some hope for her and keeps her focused on getting her health back to the best it can be,, but all the while knowing its not going to happen.

You could try day visits or afternoon visits home as a 'test' so that she can see for herself how impossible it would be?

Good luck

You may or may not feel able to tell your mother that coming "home" is not an option. That's your call. However, the home manager and your mother's GP can give her that message without the emotions you have (because obviously you love her) so please speak to them and ask them to explain why it's not practicable for her to leave the care home. Then you are in a position to repeat the message by quoting them when necessary.

I faced having my father come to live us following surgery to remove a life threatening tumour. I was dreading it. Truly and utterly dreading it and I loved my father with all my heart. I am not ashamed to say that I was partly relieved when the operation ultimately hastened his death and I never had to face having him to live with us.

Also, I can see this from the other side of the fence as I work in a care home (nurse) and I can say with certainty that she is not going to suddenly morph into a compliant sweet little old lady just because she's 92. Elderly people are just as diverse as everyone else. If she wants to stay in her room she should not be forced to socialise and you have no reason to feel guilty about that. She has her faculties and is able to make her own choices. Unfortunately for her, coming to live with you is not a realistic choice.

Please don't feel guilty. You clearly love your mother.

As an aside, had my father come to live with us, I know I would have had to give up my job as I absolutely know what a hard slog it is to look after and elderly person and how you have fight for every penny and every second of support. You are doing the right thing for everyone concerned especially and including her, honestly.