Wishing your elderly mum was not here anymore

Marydoll my mother had a very similar episode. She thought the flickering tv in the cubicle next to her (hospital) was someone setting g the ward on fire - every night she feared they would all die.
Then deliveries were made below her level and she thought illegal immigrants were being smuggled into the hospital to work as nurses - who of course she didn't trust. She started to pull her lines out of her arms, to allow her to escape at night.
I stayed overnight sleeping in a chair for the week or more she was there.
But she thought I was 'their' spy, so was very difficult with me.

silentgames ... I do agree with your understanding of the situation, it is not their fault it is the illness. So hard to deal with though isnt it?

Izabella

I can only repeat others advice, get a social worker involved, they can do an assessment, more carers in too.
My Mum, after a second hospital trip (dehydration) was discharged to a care home, we knew it was coming, had researched and found a lovely one., she thought she was in a hotel.
My Mum had vascular dementia, it can be a long haul, she lived for another 9 years, long after she recognised none of us and was bed bound. For your sanity and life, get help and try not to ever feel guilty, we all do our best.

Oh, the refusing to wash or be washed, really rang a bell. My formerly very fastidious mother became a nightmare in this respect. I could not get her to have a shower, even though she badly needed one - it was always, ‘I can’t be bothered’ and any pressing would result in tears and strops.

However my sister, who lived a 6 hour drive away and so visited much less often, was able to be much tougher - just wouldn’t take no for an answer. ‘You NEED a shower - you smell!’ (she did.).
Of course there were tears and strops, but give zero short term memory they were soon forgotten and I’m sure she must have felt better afterwards.

How the eventual care home (dementia only) managed it I don’t know, but she was always clean, with nice clean hair - ditto all the other residents.

Betty65

Awww Betty, I read your post and felt so very sad, sad for you, sad for your mum..
It is absolutely such a sad sad situation and heartbreaking.

I will be perfectly honest with you, I never ever wished my mum to not be here BUT I was pulled in every direction possible.

Being an only child, I literally had everything to do, but i wouldnt have had it any other way at all, but there were times of stress and certainly times where i couldnt fully rest as i had whirling thoughts of what if mum fell, what if , what if, what if..

1 time I rang ( as I did daily)and my mum didnt answer the phone....PANIC MODE WAS ON RED ALERT..... I raced over to mums like I'd stolen the car shot through the door expecting the worst possible and what did I find !!!! My mum sat watching TV full maximum blast laughing at whatever it was that was showing, I said "Mum, I've been ringing and ringing you !"
She replied "Have you ! I never heard it !"

I was seething .... with the TV up total maximum volume, a bomb could have gone off and mum wouldnt have known !!!!

Looking back NOW, I smile and give a little laugh to myself, but at the time WHOAAAAA.....

So, my advise you you Betty is please, for your OWN SAKE , you must get the carers in more.

I did with my mum, I did 4 days and I got them to do 3 and it helped enormously.... please seek help Betty because when the day comes and your lovely mum is no longer with you, that is when you will harbour regrets and THAT is something you dont want ......

Take care of yourself and your mum because your mum is very precious indeed.

Betty65 you are entitled to your own life. If your mum gets upset about activities that don't involve her don't tell her about what you are doing (I know it seems like being deceitful and if you've spent your whole life talking to her about things it is difficult). There's lots of good advice on here about help and things you can access. You are entitled to your own life.
As far as stories about hospitals go when my mother was moved into a private room because he had picked up an infection she became convinced she was on a cruise (the one we had been on was a disaster). She complained about how awful the service was. Said there was a man in the next room who had brought his whole family with him and that she couldn't wait for the ship to get to port.
Although we could see the funny side it was very worrying at the time- it was all linked to the infection. I do hope you can find a way thrugh this difficult time- good luck!

Oh Betty how I understand what you are saying.
It is unbelievable how people can change with dementia. My Mum went from being a normal loving Mother to being a complete sucker of joy. She hated my gorgeous grandchildren or any friends coming to the house as they took the attention away from her and if I told her I was going anywhere it was ruined by “can I come” which wasn’t always possible as she was in a wheelchair by this time.
In the end it was damaging the relationship I had with my family, and so following a fall and a hospital stay she did go into a home against her wishes to begin with.
To be fair after a while she was no happier/unhappier than she was at home but we could go and visit and leave when it all got too much so our relationship was probably better (carers were wonderful with her).
Anyway she was there for three years until she died from Covid in April.
Yes, I do feel horribly guilty now that she ended up there - would she have died at home? Who knows, but also I feel a tremendous amount of relief that I don’t have to worry about her anymore.

Sadly this happens more than we realise in families. My Mother became very difficult in her final years. Myself and my two, sisters had a rota of sorts, where we covered every area from shopping to cleaning and laundry. We had care in place three times a day, but in the end things became non workable to keep her in her home. She only spent 6 months in the care home, but finally we could relax in the knowledge she was safe and cared for. It's a true saying old age ain't for wimps.

@Betty65.
You are finding this difficult? It is difficult. You are finding this demanding? It is demanding.
I spent over 5 years of my life caring for my parents and it was so hard.
I would not change a single harrowing moment I was there with them. Though I wish with all my heart those moments had been much less awful.
My brother and his wife just abdicated. They left me to cope alone because their retirement was so much more important than anything else.
I torture myself constantly thinking I didn’t do enough while they have made clear they feel they behaved impeccably.
I did everything I could to keep mum and dad together until mum died and then had dad to live with me until he died three years later during which time he was totally dependent on me.
The obvious lack of care for him from my brother and his family cut my poor old dad in his most needy time to the quick and in the end (when my brother could see the end was nigh and visited more regularly) dad had no interest in seeing him or his family. God only knows how they live with themselves.
My dear old mum had dementia and it was horrendous, pitiful and painful. She said some things to me which bought me to tears but I always knew it was the dementia and not my lovely mum talking.
My brother was happy to take and he did plenty of that, while everything was good but the minute anything was asked of him he didn’t want to know. We’re all different I suppose but we are left in the end with our memories, dad said my outstanding feature was my loyalty and I’m very proud of that. My brother wanted to put my parents in a home, it was their worst nightmare, they are very often not nice at all.
@B9exchange has good advice for you, I hope your brother is more use than mine was. In addition I would say speak to your mum’s GP and ask to have your mum referred to a hospice (sadly dementia is a terminal condition). The support I received from the hospice for my dad was amazing and they have all the local knowledge of local charities etc who can also offer help and they worked with social services and were in the end able to obtain a live in carer for us. They also offer support services for the carer. You should definitely register with your GP as a carer if you haven’t already because this ought to open up opportunities for help for you.
Your mum sounds lonely and afraid bless her, where I live Crossroads Care provided someone to come and keep dad company for three hours a week to give me a break, investigate what may be available in your area. I also hired a cleaner twice a week for two and a half hours a time because that was also someone else around and way cheaper than carers. It’s really important to know that there are times you can do your own thing without worrying.
Lastly and very, very sadly in the scheme of things this won’t last long; dementia is a progressive and fatal condition. Your mum should attend a memory clinic in case there is medication that might help her, your GP can make the referral.
Make the most of your mum while you still have her, regret is a dreadful thing.
Good luck!

Karen, you sound very bitter about your brother but not everybody is able to care in the way that you did - maybe he knew that he could not.
Also you don’t mention if you were also working or had a partner and other family to consider - all this makes a big difference in what you can manage.
In addition we are a very, very close loving family but I would not want my children to give up years of their lives to care for me in my old age, I really wouldn’t. Maybe one day I may say I don’t want to go into a home but thinking rationally as I do today I trust my family to find me a good, caring home and visit me regularly to check all is well.
I certainly would not want them feeling guilty if they couldn’t care for me at home.
You mention regrets but you can only do the best YOU can, others may be different.

Oh Karen I wish I was you,i wish i had the strength of character to do what you did. If only we were all the same. I wish I had a sibling, it must be easier even if they don’t do much their still there .Don’t be too hard on your brother we can only do our best we’re all different .

On one of the trips to A&E when mum had a fall, a young doctor treated her and said she could go home. For some reason an older doctor also came, had a good look at me and said they would keep her in for the rest of the night. I must have looked at the end of my tether.
On another occasion I was asked to step out of the cubicle. I was just standing near the white board which had names on. My mother was saying over and over again 'why am I here, when am I going home'. I discovered that the man on the other side of the curtain to her was suicidal. Poor chap.

We had two parents with dementia at the same time. My brother was fighting cancer. We were both working full time. We pulled together and got through those tough years. Don't ask me how. The Alzheimer's society were very helpful.

In the end we really had no choice but to put them into a home because my dad's dementia was so advanced his behaviour was very challenging. They had a twin room in the care home. When he finally died there was relief mixed in with the sorrow because my lovely, gentlemanly, intelligent dad was already long gone and he wouldn't have wanted to live the way he was. Mum didn't even realise he'd died because of her Alzheimer's. She passed a year later.

I'm so glad my brother and I did all we could at the time. We were in it together and used to call ourselves the A team. My brother lost his battle with cancer a few years later.

I look back at those times and wonder how on earth we coped but I'm glad we did it together. I miss them all.

"Betty65* I understand totally what you're going through.

Betty, one thing the Alzheimers society lady said to us was that one day there would be a crisis and we would know it was time for us to make arrangements for them to be moved into a care home. This happened when it snowed and the carers couldn't get through. Mum and dad wouldn't answer the phone. (An electricity company had been trying to get them to change suppliers and they wouldn't stop ringing so they stopped answering the phone). I lived miles away and the roads were treacherous. Mum had a urine infection and dad wouldn't or couldn't make food or drink. They hadn't eaten that day. That was the crisis point. My brother managed to get to them. We moved them into a care home that day.

This won't go on forever but it probably feels like it. I really feel for you and everyone going through this at the moment.

I know how everyone on this thread feels. I sometimes feel that my mum should just pass away quickly without pain. She will be 99 in a few months. She is still living independently in sheltered accommodation but struggles. She had carers when she came out of rehabilitation after breaking her hip two years ago but got rid of them as she said she didn’t need them. She is able to shower, dress herself and even manages to do her own washing in the communal laundry. I do her shopping and cleaning. There is a warden on site and she can pull,the emergency cord if she’s gets into difficulty.

I know I’m lucky that she is still able to do things for herself but she has no life. She is nearly totally deaf and forgets things now and is definitely showing signs of dementia, but to have got to the age she is, she’s done well. She sits in a chair all day with the TV blazing and when I ring she can’t hear me and often doesn’t answer the ‘phone. She knows who I am but we can’t have a conversation any more.

I used to (still do to a certain extent) feel terribly guilty not visiting her more often but since Covid I’ve only been shopping every 8 or 9 days so don’t visit as often as I used to. I make sure she has long-life milk and bread in the freezer and her store cupboard is stocked with tinned soup etc.

She lives in her own little world now and the other (younger) residents in the complex look our for her so I know she sees people other than me.

She became very needy about two years ago. “I never go anywhere”, “everyone in here goes to their families for their tea”, that sort of thing. Getting her in and out of the car is a nightmare and when she comes to my house she has difficulty in using the toilet and she NEVER enjoys it so she doesn’t come very often,

I have learned to take a step back now. I visit, shop, every week or so and clean often. I try not to feel guilty now. She tells me everyone goes to their families on a Sunday but I know this isn’t true (she tries to make me feel guilty). A lot of the residents don’t have family and I also know that very few visit, even when they live locally (they are on first names terms with me as I am a regular visitor). People say to me that “isn’t it marvellous how your mum can look after herself”. “I bet she can’t wait to get to 100” that short of thing. What they don’t realise that in the last 10 years I have been to A&E many times, when she fell several times (including breaking her hip and being hospitalised), a heart condition where she had a pacemaker fitted and nearly died, several gastric problems requiring numerous GP visits and a hospital consultant visit, six weeks in rehabilitation when she broke her hip etc. I have visited hospital/rehab nearly every night (whilst holding down a full-time job). I am now retired (64) and it’s alright for people to say I am lucky. I get the brunt of everything (I have no siblings) and to be honest I’m dreading the next ‘phone call to say she’s had a fall or even worse. As I’m not getting any younger I just want some of my own life back. Does that sound selfish? I’m getting better but there are still times that I feel so guilty I don’t visit as often.

Ohhhh reading alllll these posts makes me want to hug each and everyone of you.... its nothing short of heartbreaking....

We love our parents and would walks millions miles for them, and to witness them slowly slipping away before our very eyes is pure raging torture.....

Obviously I can't hug everyone ( and I include all the lovely, precious mums and dads ) and i can't click fingers to make everything better for everyone but i can say that my thoughts are with each and everyone and i have been right there in your shoes ......

Sending some lovely flowers for those that dont drink

And a glass of wine for those that do

Xx

Freeandeasy. I know how you feel, your story is very similar to mine although my mum is 89 and lives in an over 55 complex. She also broke her hip spent time in rehabilitation and has heart problems.
I’m trying to persuade her to move into sheltered accommodation but not having any luck. I just live on the edge all the time ,every night before I go to bed I have the feeling that tonight will be the night she falls or becomes ill. I’ve lived like this for 35 years as my dad was ill ,before he passed away 10 years ago. It is a very difficult situation to be in I really sympathise with you. I’ve cut down my visits to twice a week now but feel awful about it, as she says she’s very lonely and I should visit every day.
I’m trying to be fair to everyone. I’m 63 still working part time and have 3dgc my husband retired last year and wants us to spend time together, but there’s not much time for fun at the moment. There are no answers only guilt.

I feel for all those who are struggling with caring for an elderly parent. It really does feel endless with the constant demands physically and emotionally.
My dear old mum lived till she was 94 and was in sheltered accommodation near me after my father died. Slowly her life shut down ,she didn't have dementia but was deaf and had chronic heart failure. I worked full time and had teenagers at home and on my own. At night she would pull her alarm cord and I would be phoned as a key holder. Getting dressed and short drive to her flat in middle of night,sorting her out and then work next day. She became emotionally very dependant upon me and would expect phone call at 6 and outings at weekends.
It came to a head when my 17 year old had a large ovarian tumour and was very ill. She then got told that she is not my priority and accepted daily carer visits. Once she got to see my daughter she realised I needed to look after her and not mum.
It was a relief when she died but then complete grief at the loss. We all try out best and that's all a parent can hope for in old age.

What a lot you are going through!
My friend's DM died recently after years of decline. There are 4 sisters, so that was good that they could share but 2 opted out and said that she (DM) should go into a home although it would be against her will.
My friend, who herself had been recently widowed, took the brunt of mother's moods and needs.
The 2 sisters who were sharing the care eventually snapped and visited several Homes. They found one in the countryside about 15 minutes drive away and she moved in there, having been to see it with them and commented on how much she wanted to live in the country!.

It was such a relief to the sisters that instead of dreading to see mother and wonder what they'd find (she was now incontinent) they went every day and spent quality time with her or took her for outings. It was months rather than years.
She died peacefully last year.
I hope you get help Betty as you shouldn't be bearing this burden alone.

katyj You sound very similar to me - thanks for responding (and everyone else too). My mum went into sheltered accommodation 25 years ago at her own request as her sister was already there as they wanted to be nearer to each other. My mum lived in a three bedroom terraced house and was finding it difficult to manage the stairs. Unfortunately her sister (my aunt) sadly died five years later but my mum fully embraced the whole sheltered accommodation living experience. Before lockdown they had an enormous amount of social activities i.e coffee mornings/sewing/knit and natter/ quiz nights so katyj I would certainly encourage your mum to look at sheltered accommodation. My mum has had a very fulfilling life up until now and has embraced every aspect of it.

This a very poignant thread for me. That’s why I’m on Gransnet because I can relate and emphasise and sound off to people in a similar situation that I can’t sound off to in real life. I’m am ‘honorary’ gran on here in as much that I have never had children so no blood grandchildren. However, my partner and I have been together for nearly 40 years so my step grandchildren are like my own. My partner is 15 years older than me, and although in good health at the moment, you never know what’s around the corner, so I guess at 64 I’m wondering where do I fit in - in all of this? My partner needs me and my mum does too. Thank goodness for Grandsnet - this is where I can sound off. Thank you.