Visiting mum - just a duty

[Florentines]

Not seeking advice or anything really but I realised today that it's been so long since I got any enjoyment at all from seeing my mum. She has carers so I'm very lucky that I don't have to do the everyday care. But even with that, every visit involves medical stuff (appointments, calls, discussions that she doesn't understand but that I feel I have to have with her), or household stuff, or sorting out bills or whatever things she's got wrong. She's had dementia for years but won't accept it and so I have to pretend she's fine and leave her 'jobs' to do otherwise she gets upset. Then the 'jobs' all have to be re-done. Having a conversation is exhausting as I have to guess half the time what she's trying to say. I have to be cheerful otherwise she acts like a martyr about what a 'nuisance' she is. It's like having a young child but without any of the good moments. I can't now remember the last time I came away from a visit or phonecall having enjoyed it. Years I think.
I've done everything I can in terms of keeping her life as pleasant and normal as possible and there are no solutions to any of this. But I'm just so sad and tired and the reality is that I will be relieved when she dies. She has literally become a job I have to do. It's a crap life for her and a crap life for me.

She has had so many medical appointments the last month or so and it just seems like this mad effort to keep her alive when actually it ruins her quality of life because she hates leaving the house, she hates speaking to doctors, she gets upset because she's stressed and doesn't really know what's going on. And for what? Why can't we accept death and not obsess over trying to make people live longer and longer

I’ve been where you are and couldn’t agree more. 💐

Do you have a health and welfare PoA? Because if you do, you can just stop taking her to all those appointments. If you don’t, you could explain to her GP and ask to get it all stopped. It’s remarkable how quickly all attempts at medical intervention stop when someone is housebound because it’s just too much trouble.

My dad also has had bladder cancer. Last check up showed it has come back. They want to keep sending him for more tests and possible treatment. I made an appointment to see his consultant and we agreed that at this stage of his life and dementia further tests and any further treatment, beyond pain management, would not be in his best interests.

In my dads case it would have been kinder had Covid taken him, instead he now has no mobility at all or independence in eating/drinking/toileting and no dignity left. It's incredibly hard to bear witness.

I bitterly regret being talked into letting mil have a pacemaker fitted. She was advanced in her dementia and in a care home. But the consultant really did the hard sell. This was despite my holding both POAs.
It was an utter nightmare both during her day stay in hospital and once she was back in the home. Took about 6 weeks before she finally gave up fiddling and pulling at the pacemaker, which as she was so tiny, showed as a lump under her skin.
I believe that without it, she would have had a heart attack in her sleep and it would have been a quiet release for her. Instead, she lived another year, the majority of which she had apart from family due to covid rules. When we did finally get to see her, she had bed sores and was bed bound, unresponsive and clearly in pain. No fault of the home, she had just deteriorated as other bits of her failed - legs, appetite, sight, etc, but her heart still kept beating not allowed to give up.
She lasted another fortnight before she finally died of an infection. Antibiotics were withheld with our consent.

I too wish there could be a more open conversation about these issues by the Government. I dread the thought of my beloved only daughter going through what I went through when looking after my father. My lovely Mum was years younger than him, but died as she had lived, no trouble to anyone. It was very quick and unexpected - a very aggressive form of cancer which took her in a couple of months. I was left with a very angry, frightened elderly father to look after. Suffice to say those two years were hell - my brothers were no help at all - only interfering when money was the issue. (My father was comfortably off). My Mum had died three months before my wedding - so I had a new husband, work and a five year old daughter as well. Looking back I don't know how I managed it - one day he was being his usual horrible self to me, and the lady who I employed to help overheard him and couldn't resist having a go at him. We were at the stage of looking at care homes for him, but he died quite suddenly at this point. So awful to have to say how relieved I was. I shocked my eldest brother when I told him how I had begun to hate my father. The stress of it all is so hard to bear - and my heartfelt sympathies go out to everyone who is still in this situation.

@minmooch my darling mum is in a care home with advanced dementia, she has no quality of life and to see her now when she was such a vibrant, capable, giving person is heartbreaking. I go once a week and feel terrible, we were so close spoke multiple times a day about silly things and I miss her so much. I lost my older sister to cancer the year before mum was diagnosed too. The home she is in lost a lot of patients with Covid a few months ago, she had it too but recovered. I met up with her friend whose partner was in the same home and who died of Covid and she said he had such a peaceful end and basically just went into a very deep sleep, am I wrong and evil to think why not my mum.

Name Change for this one - & long sorry.

My widowed Mother is almost 91 & I am her only relative near by so am her go to for errands & & support & general house help. Reading this topic I could be each & every one of you above this post, some days I feel quite exhausted with her needs & expectations, other days I feel so guilty for those same thoughts.

My DH is not supportive & hugely critical of me voicing my concerns to him so I dont have an outlet here so bottle this up & feel even more frustrated (both his parents have died). I have younger siblings living much further away but in contact with our parent by telephone - but I feel they get a "sanitised version" of her day to day - one of my sisters is so homesick to be back here (for the past 30 yrs ) & would agree with our Mother if she told her that the Moon was real cheese so she does not agree with some of my emails or suggestions for Mothers care. I however get the ambulance phone calls, the complaints about lots of ailments, low level sarcasm/martyrdom about how no one visits. Also how she ought to be able to do so much more than just sit on her backside (her words) but the COPD, ulcerated legs & general frailty combine to meaning she'd probably end up collapsed & unable to do anything. Stubborn as muck & will sometimes go shopping (in a cab) but as above shattered as a result.

She lives in our old family home, v. large & needing maintenance but is fiercely resolute that she wont go into a rest home as did our father (dementia etc) who had several unfortunate falls & died as a result. His death not because he was 93 & so unwell but a direct result of his poor care - according to Mother.

Anyway, just a vent, thanks for reading

That sounds like a very difficult situation, MaryMichael. I totally get the exhaustion and guilt. I often feel very resentful because a lot of my mum's problems result from poor (selfish?) choices that she & my step dad made. Then because I feel resentful I feel guilty. I'm fortunate because my sister & brother live close (my mum now lives at my sister's) and we do listen to each other when we need to vent although I don't like to dump my emotions on them too much. It must be v difficult feeling that you have no real life support.

I've found The CockRoach cafe brilliant when things get too much & I need a sympathetic ear.

Anyway, just a vent, thanks for reading
You're being abused and dumped on, this is completely unfair, your partner is selfish and cruel. I understand why you feel guilty and conflicted but the guilt is misplaced. I wish you would find the strength to distance yourself and shed this burden which has been unfairly landed on you🙏💙🦋

My elderly neighbour struggled across the road to me the other day. She wanted to warn me not to waste time and enjoy myself while I could.
She is eighty seven and I had thought she has a good quality of life. She is often out and about. Yet she told me her life is miserable.
I felt pretty miserable after talking to her too.

My mother is in her nineties and would have a much happier life if she didn’t chose to care for my father and her brother. We have a lot of outside help too.

I find my regular visits to them draining and frustrating in equal measure.

The two men are difficult and frankly unpleasant. My uncle displays inappropriate behaviour with women. He refuses to wear trousers and has to sit covered by a blanket, which he choses to let slip off with regular monotony.

I am at a loss to know what to do with them all. The GP says as they are all still able to make their own choices that she won’t get involved.

I feel such guilt as I would just like the two men to go into a home and my mother to live her final years in peace and dignity.

Her choice is to care for two, unpleasant old men who are completely housebound, unable to walk to a lavatory and who both treat her as their servant. It is so painful to stand by and watch this tragedy unfold.

Sorry, I suddenly had to get all that off my chest.

thanks @Ieatmarmite & @QioiioiioQ - I shall have a look at the CockRoach Cafe posts & yes I understand the load but the only solution appears to me our Mothers eventual death. I appreciate your sentiments though,

@lollipoprainbow no you are not evil at all. I saw my Dad today. Just the two of us in his room. Grade 4 bedsore on his foot, bed bound. He thought there were two other people in the room with us. I played him some music that he seemed to like. Showed him a photo of his mum as a young woman - he said that's my mum. Showed him a picture of my mum, his wife of 50 years, he didn't know who the nice lady was. Can't imagine who he thinks I am if he can't even remember my mum/his wife. Helped him to eat some soup and a sandwich. It's no life at all. I wish too that COVID had taken him rather than have left him in a worse state than he was in before. A vet wouldn't let my dog suffer this indignity - but nothing I/we can do about it. He just has to see his days out like this - living not even a half life. The only blessing is that he doesn't seem distressed. My darling son was 18 when he died from a brain tumour. He knew he was dying, it was horrific. So i guess my Dad has it easier.

@minmooch thank you and so sorry to hear about your son, my sister was diagnosed with cancer totally out of the blue and died within months she was only 59, she planned her own funeral and memorial service terrible, she was so brave about it all. At least my lovely mum got to see all her grandchildren and had a relatively long and happy life.

At a much earlier stage but it just resonates so much that there isn't very much pleasure in seeing my mum any more; too much stress and trying to make things better for her when they are objectively getting worse. I am lucky though that she was a great mum to me so at least there is no mental conflict there.

At work there are sometimes families of elderly patients who object even to a DNACPR. I mean, if you're having CPR you're already dead. I have only once heard of CPR actually working in the community - a man had a heart attack while playing sport with 3 medical consultants! But it doesn't often work in hospital either.

@PermanentTemporary I heard a program on the radio recently where an A&E consultant was talking about CPR and how tv programs are giving the wrong impression of how successful it is- as you said, in practice it rarely works. He said that he wouldn't want it if he was in the position of needing it. Its made me think a lot about it.

@minmooch So very sorry to hear about your son - that must have been such a difficult time for you & your family, as well as for your son. Its so unfair the way life works out.

I'm popping my head round the door to remind myself how very lucky I am.
Mine, as I think I said elsethread, is an 80 y/old alcoholic. (I used to post as Cattermole but lost my login!) She's currently drinking again and I am absolutely consumed with rage at her: her only grandson starts his SATs next week, he finishes his primary school education with all the joy and sadness and rites-of-passage stuff that means so much, all the sports days and Scout camps and leavers' assemblies even if they are going to be a bit of a bodge job this year, and she's drunk and whiny and she wants AAAAAALLLLLLL MY TIME to tell me about how my dad - who's been dead for 6 years - told her on hs deathbed that there'd never been another woman in his life...

Her cleaner's manager has sent her a letter saying that it isn't Lucy's job (not her real name) to clean up human waste and if it happens again they will terminate their agreement. She's been discharged from the alcohol support agency because there is no more they can do with her, she is just a drain on their resource.

This, apparently, is someone with full mental capacity. Eeesh.

So sorry to everyone on the thread. My mum has very advanced dementia, no recognition of me any more, not even as a human being. I see her regularly and it's a shock every time I go.

@minmooch so sorry about your son, how unimaginably difficult for you.

Her cleaner's manager has sent her a letter saying that it isn't Lucy's job (not her real name) to clean up human waste and if it happens again they will terminate their agreement. She's been discharged from the alcohol support agency because there is no more they can do with her, she is just a drain on their resource
So sorry you're having to deal with this clusterfuck situation🙈😕

My Dd is 94. He doesn't have dementia, but is very frail and housebound. He has numerous health problems.

He has carers in four times a day and I visit twice a week. It is definitely a chore.

His whole world has shrunk to the point that his main topics of conversation are what he's eaten that day and how he is feeling. He often calls 999 and they are regular visitors. Last time it was because he had constipation!

He regularly complains about being bored and lonely, but if I suggest any sort of trip out he refuses. He is apathetic and lethargic. He has 17 tablets/medicines every day to keep him going.

I feel so sorry for him as he was a very good Dad, caring and he kept me going when my Mum died early of cancer. Now he is like a selfish toddler and I hate that he is just existing and I hate that I feel so resentful of spending my precious time with him.

I'm glad I got that off my chest - I'm drowning in guilt.

Now he is like a selfish toddler and I hate that he is just existing and I hate that I feel so resentful of spending my precious time with him
Obvs it's not his fault but it's also not right, you shouldnt be in this position, we need proper ways for society as a whole to manage old age.

His whole world has shrunk to the point that his main topics of conversation are what he's eaten that day and how he is feeling. I found with my father that if I sent him emails with lots of family news, he would talk about that. Now he's beyond emails, and beyond rational conversation most of the time, but I still write letters with our news, and news about the local town, and he still refers to it. The world that he experiences has shrunk, but I try to keep him part of a wider world. But very lucky in that he has always been interested in what's going on outside his personal world, and he has still retained that part of him.

The truth is that extreme old age is not pretty. There isn't a perfect solution or a way to manage this that will stop it being difficult.

💐 to the carers

This is all too familiar, and so sad. My mother lives in quite a nice area, but it's forever tainted for me by the feeling of dread and misery I get as I approach it.