Help!! Mum is 88, I am 68 and she only wants me!!

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Heather, if mum has the onset of dementia, then it is really only a matter of time before residential becomes the only option left. Some people seem to go into a sharp decline, others down a gentle slope. The very worst thing you could ever do is bring her home to live with you. Keep some space and maintain some sanity and a relationship. When my mum needed carers (I'd been her sole care until I developed a life threatening condition) she realised that either she accepted outside carers into her home, OR she moved into a nursing home, and so she accepted the carers. You need to drip feed to mum this clear choice. In fact, my mum became so ill a few years later after developing sepsis that she needed full time nursing care anyhow. I found a lovely home a mile away, and for the last year of her life we were mother and daughter again. I'd felt that my role had been Odd Job Woman, again doing things the carers couldn't or wouldn't.
So make sure mum claims Attendance Allowance, and once she has a formal diagnosis of dementia, she becomes totally exempt from Council tax on the grounds of "severe mental impairment" I believe.
Find out as much as you can about the nursing homes closest to you, look at the Care Quality Commission website, and go and see the ones you like the sound of best. Some may do respite weeks, for example. Find out more about their charges, etc. Decide also, at which point enough was enough.
Finally, your husband matters every bit as much as mum, if not more so. Make that clear to mum. Decide which day or days are going to be "mum free" and stick to it. I was widowed when I was just 54. Every day with your husband is precious. Don't waste it.
Heather, I do hope the moderators give you your own thread. So many forum members have your problem. The messages you are replying to are a few months old. You should not feel guilty. The word here is 'it isn't what your mother WANTS, it's what she NEEDS' - she doesn't need you and your husband to miss out on your deserved retirement or for you to wear yourself out so you can't help her at all. At least one forum member had a better relationship with her mother after she was in a home, because it left time for human contact. I do hope others who have more experience of this than I do reply to you. (My brother was very nice to careworkers and liked me to go out whenever I wanted to).
I'm afraid I do agree with BB and Greta - even if your mum struggles on a bit longer in her own home, even with careworkers coming in (which she doesn't want!) (all too familiar - my MIL refused to let them in the flat after the first time they came!!!!!), it can't last for much longer as her dementia gets worse and worse.

So it really is time to start planning for residential care for her. There are a MILLION reasons why bringing her to you to live is a disaster! She does need to be able to have 24x7 care at some near point in the future - my MIL does. Dementia makes them, so sadly, completely helpless in the end. My MIL has now lost the ability to tell when she wants the toilet, so she is doubly incontinent, wearing pads all day and night. She doesn't really know day from night, and wanders around during the night. She has to be guided to eat, and what to do, and where to go. She needs someone with her all the time.

In a residential home there are always a team of carers to do all that, day and night. That's why you alone can't do it.

Please do sit down with your husband and talk it through frankly.

One thing I would say, though, especially while your mum is not too advanced in her dementia, is this.

Before my MIL got as bad as she is now, she used to come to me for what I called 'sleepovers'! I went and fetched her twice a week, and she spent the day with me, and the night, and then I ran her back to the home in time for lunch.

You might well consider doing something similar with your mum. What if she came to stay with you for weekends maybe? That would give her time with you, 'at home', but only for a short period that you could cope with.

The dilemma of caring for an elderly relative with dementia is that what we can do for short periods is NOT what we can do endlessly. So having her with you regularly, but for 'short periods' could work really well. (It depends on how confused or agitated she becomes by changing places of course.)

Even now, though, with MIL as advanced as she is, I still visit regularly, and take her out for drives and a picnic cream tea in the car by the seaside. She enjoys it, I chat away to her, and then I take her back in time for her own evening meal. It seems to work ok.

Wishing you all the best, but please please please don't think to have her live with you, 'instinctive' though it feels. Do, please, read all the posts here on this subject on the forum. There are, indeed, members who have done it, and managed to hang on to the bitter end, but it has been very hard for them.

So much, sadly, depends on how long it goes on for. For example, if she has other health problems, then the doctors may say 'I think this will be your mum's last Christmas' ....in which case you might well decide ' OK, so for this coming year we'll look after her at our home', and that might well be doable.

But, be warned, there are those on the forum who 'took on' their mums and dads never realising just how long they would keep going. One member here took on their mum's care at 91, and her mum lived to 100!

It's a sad time, there is no doubt about it, and we all want our parents and inlaws to have a 'peaceful' last stage of life. But we do have to consider the bigger picture all the time, and the long-term impact our decisions have.

Kind regards, at a difficult and stressful time, Jenny
There was a discussion on the radio recently about the problem of caring for elderly parents when their offspring are getting old themselves and wanting to enjoy their retirement, which seems to be pretty much what this thread has been about.

My father died from cancer when I was 38 and my mother died of Alzheimer's Disease when I was 48. My husband's father died when my husband was in his early 20s and his mother when he was 51 and having read all the posts here, I now see that as a blessing in disguise. It has also meant that our siblings who are now grandparents are able to enjoy their grandchildren without having to worry about elderly great grandparents.

Gilli
We were in the opposite situation, parents died at 78, 78, 86, and 87. My husbands parents 4 miles in one direction, mine 6 miles in the other. We also have a son with severe learning difficulties. At one stage all five were entitled to highest DLA at the same time, it was horrentdous. One day my husband said to me, very sadly, that we were too close. He died of a massive heart attack soon after his father. The only glimmer of hope I can see for future generations is that with parents having their children later, those children will be younger when the parents develop age related health issues!
I think the other glimmer of hope - and really, it has to be a big shining beam! - is that increasingly there is emphasis on a HEALTHY old age. I am relying in us 'baby boomers', the post war generation of the late 40s, 50s and early 60s, to be sufficiently 'health aware' - especially in terms of things like smoking, alcohol and diet - and, of course, crucially, exercise (the ONE single thing that seems to make a real, real difference to both body AND mind in terms of health!) - to have reasonable grounds for looking forward to a healthy extreme old age (ie, post 80-ish).

To me, the biggest, biggtest problem is dementia, because it requires 24x7 'attendence'. You simply cannot leave someone with dementia alone, any more than you can a 2 year old! They need constant attention and checking on - you can hardly go out of the room (unless they're asleep). They have NO ability (in the end) to entertain themselves or occupy themselves 'of their own' without guidance, encouragement and supervision (again, think 2 year olds!)

Even with substantial physical limitations of ill-health, a 'physically sick' person is far less dependent in a 'continuous' fashion than someone with dementia (until, maybe, sadly, the dementia is near death, and the patient is simply torpid in bed/chair, incapable of movement just about), and that has to make it so much less stressful to look after them. Besides, most importantly, they are still 'them'! They are still the people we know and love - we can have conversations, rational discourse, etc etc etc. They haven't become ghosts in their own bodies.

That said, of course, keeping physically well is pretty damn important too!

But the difference between my own MIL - 93 now - with advanced dementia, who is yet physically pretty damn fit (considering!) - and my SIL's sister's MIL, also 93, but with no dementia, though physically frail, is total. The latter still lives in her little flat in the local town a couple of miles from her son's family, he visits daily, takes her shopping (she will NOT use a wheelchair!), and she comes over for Sunday lunch, family gatherings, etc, and is as sharp as a pin still. She is still the 'same person' she always was...

My poor MIL, by contrast, is in residential care, 24x7, a secure unit (she wanders....), and though she recognises me and enjoys my taking her out, just simply is 'helpless'. It's dreadful to see, as until she was 89 she was totally independent and self-reliant, the person I've always known her.

So, to me, the arch enemy is dementia, and that's the real 'killer' when it comes to family caring. I looked after my MIL for 5 months until I cracked and put her in a home. By contrast, my SIL's sister has no need at all to resort to that. It's the dementia that makes the difference. So, so sad. And SO 'exhausting'.
Hi Joan
I know exactly how you feel and I must confess that I have lost my temper in the past with my mum and then have felt so guilty and come home and just dissolved into tears because of it.

It is so so hard to see your mum deteriorating both physically and mentally and just not be your mum any more. My mum is 89 and has the onset of dementia and can become very argumentative with me and won't listen when I try and say things to help her feel better. She gets so agitated and depressed which I just find so difficult to cope with. Her doctor visited a couple of days ago as she has yet another urinary infection (which I know makes her very confused and disorientated) and which of course has an impact on her dementia too. The doctor was also very concerned about my wellbeing and has insisted that I get more care in the home for her. We have carers coming in morning and night but I just find the strain of day to day care too much. I have now resigned myself, with the doctors opinion too, that we will be looking at residential care in the very near future, which I know my mum will refuse.

I am 68 and retired 4 years ago to look after my mum but just feel for my husband and myself that I must now think of myself and him and we should be able to be enjoying our retirement together. This must sound so selfish but I can't help feeling the way I do.
If mum has dementia then she may not be legally able to make a reasoned decision. It's really good the doctor is on your side. Start by looking at the Care Quality Commission website where you will find a good search facility. Then work out which one would be best for YOU as well as mum. My mum was physically disabled, in a home about a mile away from my place, so I could visit whenever I felt like it, sometimes twice a day if mum had needed some "shopping".
So make a list of possible homes, starting with the nearest first. Read the reviews on the CQC website, ring up and make an appointment to view, and then have a look. You will be surprised how quickly you like or dislike the home. Are the staff apparently friendly, competent, caring, etc. etc.?
You also need to find out if mum would be classed as "self funding" or not. Maybe an up to date Needs Assessment from Social Services would be next on the list of jobs.
Some homes offer day care, some respite care. Don't delay, because it can take a while to go through the process. Once you know which home you like, and who is going to pay, someone from the home will go and see mum and do their own assessment.
On the issue of 'selfishness'. One way of looking at it - the way I do, in respect of my now 93 y.o MIL with advanced dementia - is in terms of 'life-quota'.

At 89, the blunt truth is that your mum has HAD most of her life. You, at 68, with your husband have NOT!

I know that can be harsh sounding, but if you think about it, at 89, your mum has had twenty years more life than you, and in order to look after her yourself, you have to GIVE UP years of your life, when you haven't had as much of it as she has!

If you change years into money, at say, £1,000 a year, it's the equivalent of your mum, with £89,000, expecting you, with only £68,000, to give up say up to £11,000 to her (if she lives to a hundred, which she might - someone else on the forum took on her mum at 91, and the mum has just died at 100....).

When I 'inherited' my 89 y/o MIL with incipient dementia, and she could no longer live on her own, I was late fifties.... it dawned on me that I might very easily spend the ENTIRE decade of my sixties looking after her - I'd be 70 before she died ....

It absolutely appalled and horrified me, and for that reason I brutally reckoned that, when it came down to it, my life was 'worth more' than hers was, because I'd had thirty years less of it than she'd had!

This view, expressed here, caused quite a bit of controversy, and yes, it is a fundamentally horrible thing to say that any life is 'worth more' than someone elses. But the dreadful truth about caring personally, 24x7 for someone with dementia is that it EATS one's life.

I'm not saying no one should do it - it's a personal choice, depending so much on individual circumstances, and, perhaps most of all, the relationship one has with one's caree (as my MIL, I'm very fond of her, but there are no 'heart strings' as there would be with my own mother, and there is NO ONE ELSoSE to share the caring, as I'm widowed, and her surviving son is dirvoced and in the USA...so there was ONLY ME to look after her....)

So, is it 'selfish' to want one's own life, and not spend it looking after a very elderly person with dementia who is increasingly not going to be the person they once were?

Personally I think the sacrifice is too great. I would NOT want my son to have to give up his retirement years for me, and I hope I have the strength of mind to stick with that wish (and I certainly hope he has the strength of mind to put me in residential care!)

I do emphasise these are only my own thougths, in my own circumstances, and do feel free to entirely reject them!
Thank you for your replies and very kind advice. I accept now that the time is coming soon to think about residential care for my mum. I just want to get through this Christmas and make it a happy and enjoyable one for her. She is coming to stay over the Christmad period with myself and my husband and I am sure having the family around her will calm her anxiety and reduce her depressive episodes.

I am hoping to get the extra care in place at home in the New Year and this will relieve some of the strain during the day. She is just constantly on my mind when I am not with her and it has got to the stage that I dread the phone ringing as I know it is her but feel I must answer it every time she calls (sometimes up to 6 times a day). It is the total dependency that she has with me that is so exhausting. I am not sleeping well and feel that my health is deteriorating too but just feel so guilty that I cannot do any more to help her.
206 posts