Don't want mother living with me - am I a bad daughter not facing up to my duties?

[josephinewilson]

It's getting to the stage where my mother's sheltered accommodation wardens are saying she really should be in a home. I'm ringing up the council for advice today. She would be self funding as she has about £50K. I want to do the best for her. My OH is saying really, we should have her at our place and look after her here. He says it for the best of reasons, because she still recognises me and the house and it would be less of a shock for her - and because, as he points out, it would save her money rather than the inheritance all going on residential care. Trouble is - the thought of this makes me so anxious and tense; I really don't want to -and then I feel guilty for not being willing to look after her in what is probably the last months of her life.

My OH is not at home much of the day and two days a week he is out of town, so although I am sure he means well, the bulk of the care - toileting, washing feeding, and monitoring would go onto me, although as he points out, we could still have her two 30 min carer visits that she has at her sheltered accommodation.

Three years ago I gave up my teaching job of 30 years to work from home, online. So I have an office and I do teaching online, by video conferences around the world - I do a lot of meetings in video conferencing, I make tutorials and screencasts and facitilate help forums. Every couple of months I go to conferences in other countries (off to Japan on Friday) I am now the sole earner in the family and I'm afraid having my mother here will disrupt my work - I have visions of her wandering in and peering confusedly at people on the computer screen during a conference call to the US or something (!) And if OH and I were both away at the same time, even for only a couple of days, we'd have to get here into respite care.

We have a spare room but the bathroom is on a different floor - and she is too scared to go up and down stairs. Whenever I take her out, she always insists on using the lift. She also has been caught in the sheltered accommodation wandering around at night and I fear I won't be able to sleep if I am afraid she is wandering around.

But then I think I am just making excuses for myself because I don't want her here; I' d rather have her in a nice home and visit her daily, even though I know it means all her hard-earned savings are going to go, depending on how long she lives.
Last night I lay in bed planning an escape to a local hotel while OH was left to look after my mother - and she doesn't even live here yet and no plans have even been mad!! It's ridiculous I am getting things out of all proportion and then feeling really bad.

 

[Grannie G]

Hello josephinewilson

If you have any reservations about having your mother live with you, listen to them. It would be the worst move possible to have her just because you feel you should.

I was in a similar position with my mother .

While she was in her own home we did everything we could to keep her safe. Once she showed she was at risk we found her the best possible care home we could. She lived there for six years, which used up all the money from the sale of her house, but it was her money while she lived and it served its purpose.

 

[Moonflower]

I'm sure you will get more knowledgeable replies than mine, but here goes:
No, you're not a bad daughter. I also work from home, and couldn't manage my Mum here as well. This disease is progressive, and your mother will sadly get worse, and probably more needy.
My mum, for example, really doesn't understand why it wouldn't be appropriate for her to sit in on student counselling sessions...
Also, as many here can tell you, respite care can be extremely hard to come by, even if you are paying for it - you won't necessarily be able to get a bed for your mum when you need one, or be able to book one in advance.
Yes, it's sad that so much money has to be spent on care, but if you can get your mum into a nice facility near you, you can care, visit, take her out for trips etc. Unless you can afford to give up work or drastically reduce your working hours, 24 hour care from you with just two 30 minute carer visits probably isn't feasible, in my opinion

 

[marionq]

If your life is now as you want it be assured that will not continue with an elderly lady with dementia in your house. In a decent care home they will look after her and entertain her which you could not do.

I did research for several organisations after giving up my teaching job. I have done nothing for the last three years because if I don't give my husband my undivided attention he would either be up to some disruptive behaviour or he would be out the front door and lost. I miss doing the things I enjoy which require concentration and believe me my husband is not the most demanding person but the illness makes it impossible for him to be by himself.

If you are the breadwinner then you make the decision. Otherwise you will want to pay someone your inheritance to take her off your hands!

 

[Pear trees]

Read other posts where people have moved their parent in with them. They describe the constant supervision, lack of routine and general loneliness they have experienced, not to mention the toileting issues. Your own life and career would be put on hold which would affect your financial position as well.
If you feel you could could not cope with any or all of these problems it would not be a good idea for your mum to live with you.
You are not a bad daughter. You simply want the best care for your mum, and recognise that you are not the best person to give it.

 

[josephinewilson]

Again - thankyou

Thankyou SO MUCH for the swift replies so far. This forum is a life saver (I would normally have been at work for two hours by this time but even the worrying of it has broken my routine today) I am self employed and so if I don't put in the hours I don't get paid. I'll start my working day now.

Perhaps I should show my OH this forum thread? I think he also thinks I'm not a dutiful daughter if I don't have her with us. If I can only get over the idea that it is perhaps OK to accept I'm not up to the challenge, rather than forcing myself to do something I'm not comfortable with.

 

[RedLou]

I also work(ed) from home (job suffered greatly long-distance caring for my father who wouldn't move to a CH close to me - but that's another story.) Even when my father came to stay for a holiday for two or three weeks my job suffered. I couldn't work properly or with concentration when there was someone constantly wanting to be fed or ferried into town etc. - he always expected me, the woman, to wait on him hand and foot. -- I believe he had undiagnosed dementia on the last visit but not before.
So let's take the guilt-trip and the 'duty' words out of this. On cold hard economics, how much do you earn? (I'm not asking you to post this, just a little mental arithmetic!) If your career suffers, how much do you stand to lose a year? How does that add up against the 'inheritance'? Because I know I'd much rather earn my money than inherit it. As for the rest - you know your house is impractical. That's not an 'excuse', that's reality. Are you going to substitute trips to Japan with following an elderly woman up and down stairs contentedly? Because it's not your OH who's volunteering to take this on.
Just saw your last comment - yes, do guide your OH to this forum. Show him the threads about incontinence, sleepless nights, violence, the inability to sit and watch television of an evening...

 

[Moonflower]

Showing him this - and some of the other threads posted by people who are full time carers - is probably a good idea. Explain that even if you really wanted to move your mum in, you would have to give up work to care for her - unless he fancies taking on that role of course.

 

[Rodelinda]

I can only echo what others have said. You're not a bad daughter - indeed you're a good daughter to care and be worrying about how to cope. My mother has been living with us for over four and a half; she was diagnosed with vascular dementia last summer but I had been pretty sure for a couple of years. But even before she was diagnosed I had to give up my job as long hours and a long commute weren't compatible with having an elderly person living with us. She is now dependent on me in many ways (not just practical) although she doesn't (yet) need support with personal care.

Would we make the same decision again? I'm not sure. Even now (and we're in the foothills of the journey) we can't leave her alone for more than a few minutes. She can't do things like make a cup of tea and is not that stable but almost worse than that is her inability to recognise what she can and can't do and her lack of awareness of dangers. She is liable to wake up and be totally confused, she is beginning to hallucinate, she can't cope with her pills and every time we hear her door open, both of us are alert. So we rarely relax. We don't go out together any more and sorting diaries is a nightmare. I was the main earner and still try to do some consultancy work and my partner works from home but it's hard to concentrate for long, everything my mother wants has to be done 'now' as she has almost no short term memory and you can't reason with her. So I can be on the phone or in the middle of something complex and I just have to drop it.

So think hard, it's not an easy decision but as I say I'm not sure I would do the same again. There are good care homes with lots of activity where you mother will be cared for. Her being in a residential home doesn't mean you won't continue to care - you will still be involved in her life and be there for her. But think carefully about making the commitment - and think about the next phase as well when it's no longer 'safe' for her to live with you. Good luck - I know how difficult a decision it is. Sue

 

[tigerlady]

I think you have answered your own question. Show your OH other posts of people who are looking after their LO's with dementia, and he will see how it completely changes your life, to the extent that eventually you wont be able to leave her alone at all.

Your duty to your mother is to make sure she gets the best possible care and is safe.

I never even considered having my mother living with me, when her dementia worsened - I lived 100 miles away, and she had a good network of friends where she had lived all her life. She would have been so dis-orientated and unhappy. She went to a lovely care home where my aunt had been, and she settled very well - even to the extent that she thought it was her own house converted to a hospital.

My sister visited several times a week, as she didnt live too far away, and I went every month and we took her out as often as we could.
.

 

[Beate]

It's funny how people who haven't got much to do with the daily caring and stress at all and do not know what it entails always find time to tell us what to do. Where is he in all of this? You say you are the sole earner so what is OH doing if he is not around? If he was pulling his weight more then maybe this could work, but as the situation is now, not a chance. You have a right to your own life, and inheritance really shouldn't come into it when making a decision. At the moment it's your Mum's money, to be used on her care in the best possible way for her. So stop feeling guilty and find a great home for her. It will be better for her than one frazzled daughter trying to do it all and burning out in the process!

 

[Delphie]

You're not a bad daughter. Lots of us, for all kinds of reasons, can't or don't want to look after our parents ourselves. And the worries you list are very valid indeed.

Emotional issues aside, you've already identified some practical problems of the upstairs bathroom, you and your partner having to be away sometimes, you needing a good proportion of time to work uninterrupted and so on. There may be ways of addressing these issues but, seeing as money has been mentioned, it's worth remembering that for the most part there will be costs. You could maybe install another bathroom or get sitters in for when you need to work or at night if she interrupts you sleeping, then perhaps pay for respite if you're lucky enough to get a bed when needed, but that 50k won't last very long once you start adding it all up.

Also, you mention that these might be the last few months of her life. Maybe you're right, but maybe it's not months but years. Your OH might think a few months of disruption will be worth it, especially if he's out a lot, but you and he could be looking at many years of being constantly on call when at home or sharing your space with paid for carers.

Ultimately, though, nothing is written in stone so you could try it, with eyes wide open, with her name already on the waiting list of a good care home you've chosen for if you can't cope.

And I'd forget the 50k if I were you. You'll probably end up spending it on her care anyway, one way or another. Or you'll do everything for her yourself but your work and earnings will suffer.

 

[Linbrusco]

Also, if the resulting stress caused you to become ill or you ended up in hospital would your DH step in and be the dutiful son in law?
My parents live in their own house behind ours. Mum 75 with moderate Alzheimers and Dad 78 with cognitive impairment.

At times my DH resents the amount of time my parents demand of me, I can't imagine what it would be like if they lived with us.
My husband has life threatening health issues of his own, so in recent months I have really had to pull back on the amount of time and running round that I do for them.
Made all the more difficult now, as Mum has developed incontinence.

I never invisaged my parents going into care, but then I didn't invisage either of them getting dementia.
Mum is still at home for now, but I don't feel it will be long before she has to go into care.

 

[Kevinl]

If it sounds like a bad idea then it probably is a bad idea.
All your commitments make it sound like a none starter to me.
K

 

[Witzend]

No, you are NOT a bad daughter!

Until you actually do it I don't think most people realise what a huge commitment it can be, looking after someone with dementia full time.

We had FIL living with us for about a year - we hadn't a clue what we were taking on. I say 'we' but it was mostly me - besides working long hours OH was often away for a week or more at a time. At at the end of it - we managed to find the right CH and they were wonderful with him - I was utterly exhausted. And believe me, I had always been very fond of my FIL.

When it came to my mother not many years later, much as I loved her (she died last summer at 97) I don't mind admitting that there was no way I was doing it again. And I know her former self would never have wanted me to. Her own mother had had dementia during her last couple of years and my mother had been nearly driven mad, having her just for a few days now and then. I supported her at home as best I could for as long as possible, but when it became painfully obvious that 24/7 care and supervision were now needed, it was time for a CH.

I have said it before on here, but IMO other people's lives are important too - I don't subscribe to the view that everything must revolve around the person with dementia, and everyone else's lives, needs and wishes must come second. Though it's possible to get that impression from some of the stuff you read, which seems designed to make you feel terrible if you're not willing and able to give up everything else to care 24/7.

 

[sinkhole]

I can't add much, other than agreeing with everything said in this thread so far!

 

[josephinewilson]

Still here

I was attending a video conference in one tab of my computer (just watching and listenting not presenting )and reading your replies in another tab - my mind is not focused on work today.
In reply to the question about inheritance: A few years ago when still of sound mind (following a bit of a spat with my brother who lives 100 miles away and rarely visits) my mother changed her will so it bypasses me and my brother completely and goes to her four grandchildren, now adults. I am fine with it because he has two children and I have two, so it is still 50/50 in that sense, but it does mean that actually I won't get any of her money and although I have financial POA I don't like to spend too much of it because I feel I would be robbing the 4 grandchildren of their inheritance. (They all live 100 and 200 miles away with full time jobs so can't realistically help) Having her at home might save some of her money for them rather than all going on residential care but at what mental cost to me, I am thinking?

 

[meme]

your are not a bad daughter..it is good to know your limits ..however is it worth giving it a try for a fixed amount of time...6mths to a year?? A lot can happen in a year....and you can maybe research homes near you just in case.

 

[Kevinl]

I don't like to spend too much of it because I feel I would be robbing the 4 grandchildren of their inheritance.QUOTE]

Well don't feel that way, it's your Mum's money and using it to give her the best care is what counts.
There's no reason for you to give up possibly years of your life caring just to get them rich (richer).
If you tried moving her in and it didn't work in 6 months time (or whenever) you might have to go down the care route anyway if it didn't work out, but by then your business and your relationship with your OH may be in such a state that neither survive.
We have 3 children but I wouldn't expect them to give up everything to look after me, we didn't have children to be carers for us, having had my mother live with us for 3 years I know what a strain it can put on a relationship, what your OH says now and what he saying in a few months time might be 2 different things let alone how you'll manage your career.
K

 

[mancmum]

My dad lives with us

All of my family ..husband and kids were supportive of this move ..and I thought I could carry on with a very demanding job and employ carers during the day BUT I couldn't. The settling in period was about six months.

Now I have someone who is settled and who trusts me and I think the fact that his needs are met have contributed to a good as it gets dementia experience.

Father is continent and does not deliberately wake me ..although I do wake. I am now three years into this and I know I will probably not work again. It has had its costs on me.

My MIL in law potentially leaves an inheritance of 160,000 but we accept that this will not ever happen because any care costs for her would take all of this.

Also that 50,000 will disappear very quickly if someone needs full on dementia care. If you have a good job, keep it.