Looking after Mum

I'm reading all your comments. And thank each and every one of you. Your insights and advice have given me strength.
I'll be back on here soon and talk about how it's all going with my Mum.
Keep commenting as everything I read helps.
Xx

Gracesgran, I'm afraid you are right about too many professionals.
I have heard so many times of doctors/social workers, etc. saying for example, 'Well, if she can't remember to take her tablets/how to use the microwave, etc., all you have to do is write it down for her/phone to remind her,' etc.

Even if they've 'been on a course', no conception of the practical realities - I.e. someone has to remember to look at what you've written, and remember after turning their eyes away, to do it!
Equally, to remember what you said on the phone for the time it takes to do whatever it is.

And what can be particularly frustrating about these clueless professionals, is that because they ARE professionals and you are not, they think they must know better than the one who sees the person in question all the time.

Sorry I meant Dragonfly46

Oh Draonfly46 - That's lovely

My mum died of dementia last November. While she was in her sheltered bungalow I did everything for her plus arranging carers, cleaners, meals, shopping, social life, paying bills etc. A year before she died, my brother, the apple of her eye, moved her into a cheap and below-par care home without consulting me. She was still able to get out independently at that point. Up to then, she was very much against going into a home and I felt it my duty to uphold her choice. She couldn't possibly have understood the life-changing "decision" she had made. Once there, she very quickly lost the ability to walk, broke her arm, and complained of rough handling. Of course I reported them but my relationship with the home was rather strained after that and I now don't speak to my brother.

My mum has dementia (diagnosed) and last year my dad found as he is physically disabled he could not manage with her despite having carers twice a day. He asked me to find a home for them. I really struggled with this but it was the best thing I could do. They are still together. My mother is happy in her own little bubble and loves it there. She is far more with it than she was at home as she now has stimulation. My dad is happier as now when she wanders off there are people to there who can cope. Also there is someone there to pick her up when she falls. They are 95 and 96 and a lot fitter now than when they were in their bungalow. I used to dread them ringing me day and night but now I go and visit just for the pleasure of their company!

My mum was a bossy person who mainly talked and didn't listen, we didn't get on, and she used to say she loved me but didn't like me. When she had a stroke - which meant she could not talk or walk, we had a much more compassionate relationship.
Her eyes would light up whenever she saw me, and I became the one who did all the talking. For the last 6 years of her life, what I felt was a mixture of love and compassion, as well as outrage that she had had to suffer like this, and none of what went before mattered anymore.
When she died, everything felt complete - no regrets

I did the same thing, came back from the Middle East to help care for my mum. My sister tried her best and called almost everyday but she also had a full time job. We tricked mum into going to the doctors for an Alzheimer's diagnosis. She thought it was just a check up for her high blood pressure. That was a turning point as social services and medical staff were brilliant in sorting the extra care she needed and arranged for care workers to call in several times a day and arrange all of her medications, which was just as well as my sister fell ill with cancer and would not have been able to cope (she is well and recovering now!). Might be a good idea to see what care your Mum may be entitled to receive as that will ease the burden on you

I have one sister and she was the 'golden' girl. Rightly or wrongly, I felt I was just a baby backup! However, the golden girl upped sticks and moved to a different continent when our mother was in her seventies and had had two strokes. Who was left with the care.....?!

Looking back, I can't say I was particularly graceful about the situation and looked on it as something that had to be done and did so through gritted teeth, really. It didn't help that my mother was sound in mind but completely frustrated in body and so was a very angry person - and who can blame her?

Although dementia was not our problem, care was and you can commend yourself Olene for even giving your sister a break. Mine would announce grandly that she was coming over to look after mother for a fortnight, stay three days at the most, then go off around the country visiting friends.

When your mother has died you will be left with memories and thoughts of how you helped her, so the forthcoming time could be very precious to you in years to come.

I had a very distant relationship with my mother, but as you stated Olene, the way I overcame it was to 'love' her but not 'like' her particularly. That way, when she died I didn't feel guilty as I felt I had done my best. She never showed any great fondness towards me which, as an only child, I found hard to accept, but we can't expect to be loved by everyone I guess, and I have found plenty of lovely people who have loved me like a mother, so I am lucky.

Witzend I would say that many in the medical and caring professions, while wanting to do their best, are pretty clueless and, what is not their fault, do not seem to be offered training to cover this. I also agree that I would not mention the disease to mum but it was often on TV and, as I said, she became very defensive about the smallest of courtesies. I wonder if those of us who are, because of the sad circumstances of our loved ones, becoming more knowledgeable will be more accepting if it happens to us.

I spoke to mum's doctor on the phone before we went. She said little but was obviously aware when we went for mum's check-up. You are right about not contradicting but oh how sad it can be when nurse from the memory clinic comes and does the annual test and mum looks at me for an answer, so worried to have been put in a place that shows she is missing the information. I do say things, when she is asked the day or the month, like - the weeks seem all the same to me now I am retired and the nurse usually makes a similar 'let's get you off the hook' comment. It really is a cruel disease. I have to say that as she gets worse - quite a downhill slope in the last year - her concern has got less as she actually seems less aware that she doesn't know (I hope that makes sense).

Meant to add, what some people do before finally managing a visit to the GP, is to write beforehand giving full details of dementia-like behaviours. Typically a GP will not discuss a patient with you, but you can give this prior information, in case (as so often) the person will insist, and very likely believe, that there is nothing wrong with them - they still do all their own cooking, shopping, washing etc., even when this has maybe not been the case for some time.
What some people accompanying a person with dementia to an appointment will do, is sit slightly behind them, so they can indicate when answers are at odds with the true situation.
It is incredibly difficult and upsetting for the person in question, to have to contradict them openly.

My Mum didn't have Dementia so I can't answer from that angle. I was not her favourite child - my brother being the apple of her eye - but I was the one who looked after her when she needed it. She was always difficult - I couldn't do right for doing wrong - but plodded on regardless, tried not to argue and just got on with what I needed to do.
Over time I became aware that she was taking a little time to consider what she'd said and she'd add the odd "Thank you" - usually as an afterthought. We never spoke of love, though I always assumed deep down she loved me and I felt the same way. I eventually realised that she couldn't help being how she was, it was her nature.
The night before she died we just held hands and I knew she loved me and I loved her.

My message really is to just go home and do what you need to do to make her comfortable. It will be a very short time out of your life and she needs your help.

It's not always by any means an easy matter to get a diagnosis. Some people are extremely reluctant to visit the GP, and even if you do manage to get them there, they can 'present' very well for short periods.
And it has to be said that some GPs are pretty clueless about dementia.

My mother was diagnosed some time after the symptoms became clear to us, and was told by her GP that she had Alzh, but had forgotten by the time she got home maybe 15 minutes later. While she had accepted it from the GP (in her mind = to God) she would furiously deny it if we ever tried to remind her, so we very soon stopped.

It's definitely the case that a UTI (urinary tract infection) can exacerbate symptoms considerably.

I have certainly found that having the diagnosis was a tremendous help. Sadly, when the doctor asked mum is she wanted to know what the problem was called, she said yes. She found that very hard to bear and for some time we got a lot of 'I'm not stupid' if we offered to do something - even as simple as making a cup of tea. I don't know what would have made a difference. About a year ago (she has been diagnosed for 5 years) she decided it was because of 'the bomb that went off close by' (she's 96) and seems much happier now.

A diagnosis means that people may be able to claim certain benefits. The one I didn't know I didn't know until someone from Age UK was helping me with something else was 'Council Tax - Severely mentally impaired (SMI) person discount'. If eligible it means the person who is severely mentally impaired will be exempt from council tax. This is not means tested but the council contacts the doctor. It all helps pay for a little bought in care or devises and alarms which can help.

Sorry I have not read the thread thoroughly as I'm at work.
The first thing that springs to mind is 'Mum has (undiagnosed) dementia'.

You need to get a proper diagnosis - she could have a UTI or other condition which might be treatable. Please get a medical opinion. First stop is her GP. Is there a social services Care Package in place?

Then some counselling for you maybe?

It will depend on the person and the circs, but I do think 'love lies' can sometimes be the kindest way.
E.g. my FiL suddenly started asking where MiL (dead 10 years) was. We began by very gently explaining that she had died, but he would be terribly upset and cry, only to forget and ask again shortly afterwards.
So we started saying she had just gone to the shops or to see Auntie So and So. This would keep him quite happy, and because his short term memory was almost non existent by then, he never remembered that we'd said much the same before.

By contrast my mother, who was devastated when my father died after over 45 years of a happy marriage, seemed by a certain stage to have forgotten him altogether. Occasionally, if I showed her a photo, she would say very vaguely, 'Oh, yes, did he die?' and would not be at all upset when I said gently that yes, I was afraid he had.

My mother was extremely unkind to me, but not to my two sisters, which made it worse. I longed to have a close relationship with her, but it was not to be. The only way I coped was to keep away from her. No help to you, I'm afraid. Try to distance yourself from the problem by seeing her as a person with a problem and don't make it yours. Give her a hug and tell her you love her if you can, especially if she's being mean.

My mum had dementia. Medical advice now is to agree with the person in whatever way you can, not necessarily lying, just not putting them right. But it's hard. Those who said think of how you re helping your sister when the situation gets to you , are totally right and you can do this . But maybe you could also assess if your sister needs care workers in to help too and give her regular time out in order for her to keep going?

It is possible, Olene, that your mother has no idea you think you are her least favourite child. This could just be your perception of your relationship. Your sister has done a wonderful job looking after your Mum, and will continue to do so after her holiday. Just try and enjoy the time you have with your mother - hold her hand, stroke her cheek, kiss her head, shampoo her hair, play some of her favourite music. And go along with whatever she says because you can't argue with someone who has dementia.

My own darling mother had Alzheimer's and the disease actually killed her. But the love we gave her even when she was in a totally different world did calm and comfort her. She thought I was her Mummy, but who cares?

I hope your sister has a good holiday and that you can have a more tactile and peaceful time with your mother. I'm sure she loves you, and always has. So enjoy these precious moments with her, and forget about past grievances.

Good luck.

Good luck Olene. I used to feel guilty because I visited out of duty. I know I was never the favourite but was the one who was there when my other siblings made no effort.

I hope that you get closer with your mum. Because my two siblings lived an hr or two's drive away all the responsibility came to me to care for mum. I really feel for your sister. I got to such a point of exhaustion that I asked for a family meeting. Happily it resulted in shared care. Unfortunately mum took it all out on me ...as they say ' people always take it out of the ones nearest & who are constantly there for them'.

As for 'undiagnosed' dementia, well that needs changing for everyone's sake. Mum was on medication for 7yrs before she died. This helped beyond words. She died last year knowing us all at the age of 98. The Memory Clinic were invaluable. Visits, advice from other professionals, lots of help from them changed mum's quality of life.

I really hope that you can swallow your own feelings about your mum ( I know how that feels as I always felt like the cuckoo in her nest). As well as your mum needing you your sister certainly will. Good luck, it won't be easy.?

Having had both my mother and my FiL with dementia, and more hands-on experience than I care to remember, I do sympathise.
People who have never lived with it often have absolutely no idea of how stressful and exhausting it can be, and often come out with doubtless well meaning platitudes.

I did a lot of 'sleepovers' with my mother and one thing I did now and then, when my patience was near breaking point, was to,pretend I'd left something in the car, go and put Bohemian Rhapsody on loud (with the windows closed!) and have a really good SCREEAAM!!!
I do recommend it!
I wish you all the best.
BTW, the Alzheimer's Society website has an excellent forum for carers called Talking Point. Whatever you are having to deal with, someone will have been there. There aren't often any easy answers, but at least you can offload to others who know exactly what it's like.
So many people just don't.

For those that say I wasn't my Mums favourite, this could be due to post natal depression, difficult birth and lack of bonding. Maybe this helps with understanding.

Men who see their children being born say they bond better than with siblings that they didn't see born.

Olene does your mother resent you leaving her to live abroad and you say she was always difficult. You don't say how long you are here for but at least it has a limited time. . Go out for short periods when you can to give yourself a break as obviously your mum can be left. Take her out as well. And moan here.

The only way I coped with it was literally counting to 10 (in my head)

It worked most of the time.

Hopefully it won't be nearly as bad as you're expecting.

Good Luck!