I can stand watching my mum slowly and painfully declining. It's destroying me.

[Normansglasseye]

I can't stand it anymore.

My lovely mum was (is) my best friend, the person I always went to for chats, laughs and reassurance. We are very similar in nature and she got me. She has such a sweet and kind nature, never had a nasty word about anyone.

But Alzheimer's is taking her. It's been 7 years now and although she still recognises me she is going downhill rapidly and it's killing me to watch it.

I see my parents 5 days a week. Yesterday I took her to the eye hospital as she has many other ailments (breast cancer, osteoporosis, heart issues, cataracts and glaucoma). She was so confused in the big busy hospital and couldn't do most tests as it confused her. She is 82 but is so frail now, she looked about 100 sitting in that clinic. It broke my heart seeing her befuddled, bent over and so so old.

I've just come back from sitting with her so dad could go food shopping. I made her some lunch but then we sat mainly in silence as she has lost all conversation. She is still happy and smiling but is exhausted these days and spent so much of the time dozing on the sofa (although I did have The Golden Girls on as we used to love that in the 80's). I literally left as soon as dad came home because I feel so ill. I have a constant upset tummy, awful indigestion and constant nausea. I just hope it's from the stress of it all but I literally want to run away from it all. I don't know if I can stand watching her deteriorate to the end of this evil disease.

I know she's not young and she's had a good life. I know our parents can't live forever and I'm so very lucky to have had her in my life for 52 years but it is absolutely soul destroying.

How do you get through this kind of thing without it wrecking your own life (and health)? I feel so sick all the time.

I read something which really helps me. It was along the lines of just living with them in the here and now, not thinking of them as the person they were before illness, but the person they are now.

Obviously takes a bit of practice and maybe I find it easier as I live in, but I take things on a day by day basis. I don't really have the capacity to do what I need to if I dwell on how awful the illness is. There'll be time for that after. I just try and make the best and most of where we currently are.

I had this too, and unfortunately have no words of comfort. Dementia is fucking brutal. Just wanted to say how sorry I am about your mum and how important it is to look after yourself as well.

Right there with you, my wonderful mum, the only person who truly got me has gone. She has Alzheimers and vascular dementia. I'm devastated. I ve booked a telephone consultation with an admiral nurse. I ll let you know if its helpful . 🌻 Best wishes to you x

Am so sorry, dementia is truly awful.

How much does she really really need to go to all these appointments?

Often hospital clinics don't appreciate how difficult it is for a frail person to attend and quite how many appointments stack up.

Can you get a common sense approach on her appointments and medication on what is really going to make her feel better and what is someone unthinkingly booking follow ups.

I'll have to work on that unsync
I have one of those overthinking mindsets so it may take a while but I'll try.

Thank you Candleabra* it's really is fucking brutal, I don't think many realise just how awful it truly is.

I'm so sorry Deedeedoe
I do hope the Admiral nurse helps you. I used them for my dad, they were brilliant helping him. Let me know how it goes. I may need to call them myself x

I told the clinicians yesterday that it would be best if mum was discharged. Even then the opthalmologist was taking about putting mum through cataract surgery, I really don't think he fully grasped the fact mum has dementia. There's no way she could go through surgery like that and tbh pretty pointless too.

I told dad yesterday that we need to narrow everything down to the basics from now on.

She is so lucky to have you.

I lost my lovely mum to Alzheimer's 6 years ago and my over riding emotion when she died was relief. I don't have any ideas but my mum like yours seemed happy most of the time so hang on to that. The Alzheimer's society have a good website with lots of info so worth having a look. Don't forget to look after yourself - it's brutal
Best wishes

I’m with you. My DM has had Alzheimer’s for about ten years now, in a care home for 5 years. She just sits, totally unaware, and occasionally makes random sounds or words. I feel like I’ve been grieving forever.

The Admiral nurse did help me to acknowledge my grief and to stop centering my life/ thoughts on her. Now she’s part of my life, but not the focus. I’ve given up the physical care to the professionals.

I have to remember this is no longer her - she has gone. My advice is to grieve but be realistic and don’t let it stop you living your life. She has had her life and she wouldn’t want that for you.

It’s brutal, I see my mum fading before my eyes. She has vascular dementia and I grieve for what we can’t have again, no conversations that make sense ever again.. She was in hospital for 2 months and it was awful as she was so distressed and thought she’d done something wrong and kept saying she was sorry and begging to come home. Trying to explain that she had to stay there was harrowing.

Thank you. I think I need to contact the Admiral Nurses for myself, I think I've reached that point.

I think it's because we are still at that place where mum is still mum in many ways but also not in so many other ways? I do wonder if I can finally grieve once she goes further into her self? I really don't know what to think anymore. This disease really messed with your head.

I just wished she had gone in the sane way her own parents did, from a heart attack. Dementia is an awful drawn out disease, isn't it?

It's so heartbreaking, I really feel for you x

I had a cry in Christmas Eve as I had effectively lost my Mum. Hugs to you it’s so hard to stay strong.

all of it; one granny had dementia, the other slow death through starvation and paralysis after massive stroke. My amazing mother nursed both of them, without anyone paying her

Hello Normansglasseye, hope you are ok. Visited my mother today. I was so glad to see her and she looked well cared for (care home, sadly) and the staff seem genuinely pleased to help the residents. I tried to engage with her, we ve always been so close, but she barely looked at me and shook my hand from hers when I tried to hold it. I came away a bit earlier than normal. It's a bit shit. Hope you have had a better day x

I'm so sorry Deedeedoe, it's just heartbreaking isn't it? I really feel for you x

We've not been having a great time tbh. Mum has had quite a few toilet accidents this weekend and dad is exhausted. The two of us visited a local care home yesterday, to enquire about respite. They were absolutely lovely there and the place had such a homey feel, it's run by two sisters and the home used to be their family home until they turned it into a care facility which gives it a person touch but I'm still finding it hard, the though of putting mum in there leaves me feeling so sad.
We will start with a week in February when mum's carer goes on holiday and see how it goes.

I am dreading it tbh.

@Normansglasseye thst sounds so incredibly hard. I’m sure it’s pointless and trite to say you shouldn’t feel guilty, but you really shouldn’t. Dementia care is a very gruelling task and that is why specialist dementia homes cost so much money.

Your lovely mum would not want you nor your dad to be turning themselves inside out looking after her. Mums of that generation were proud and selfless and pretty fucking awesome to be honest.

I hope things are bearable for you, because it’s really difficult. on the plus side, your mum was kind and nice and you loved her. I’ve got several friends whose mothers were horrendous a long way prior to dementia setting in, and they have the headfuck of sorting out their care while not liking their parents very much

I did find it useful,to understand the various phases of the dementia ( in dad’s case LBD), to help me understand and process the progression of disease. Sometimes we loose sight that this is a terminal illness, and knowing the progression helped me understand that and recognise symptoms in any phase are transient.

Just echoing what Undrugged said above, it is such an awful and desperately sad situation but your mum would not be happy to see you so distressed.

Respite care sounds like a good idea, try and take some time to really look after yourself however you can - counselling, exercise, walks, nice times with friends, baths, proper food.... Whatever you can.

Because it's brutal and drawn out, and if you recharge your batteries a little you will be able to cope with what's happening/coming a bit more.

Thanks everyone.
Dad and I had a meeting at, what seems like, a lovely local care home. Mum's carer is off on a weeks holiday in April and we are going to place mum in the home for a week of respite care. Dad is having a little wobble and only wants her in for a few days but he and my sister and I really do need a full weeks rest so I am hoping he will agree to it.

If you can, I would really encourage you to consider 2 weeks of respite. In fact, most care homes insist on this as a week isn’t long enough for someone to settle. If you can have two weeks, it might allow you both to see how your mum would benefit from being in a nursing home. It would mean your dad could go back to being her companion and not her carer.

Two weeks would be wonderful but tbh, it's been a push to try and get dad to agree to a week, even now he's saying he'd rather it be a few days. This home offers respite by the day/night and at £1000 per week he won't stretch to two weeks atm.

I’m sorry OP, I know how hard it is and I’ve been in the exact same situation (though in my parents’ situation, they could afford it easily which made it even more frustrating). This takes over your whole life and I think the ‘well’ spouse often can’t see the impact this has on everyone else as they are so against putting their loved one in a home. I had a very young child when my parent was diagnosed and I have nearly 5 years of trying to support caring for a parent while also looking after a toddler. It was horrendous and while I respect my parent’s willingness to honour their vows, it came at an awful cost to everyone else.

Everyone has their limits and sometimes it’s kinder for someone to be in a home as there is a point when they just can’t be looked shafted at home properly.

sending 💐

I'm going through this with my 87 year old mum but it is delirium, in September she was still cooking & cleaning, doing everything for herself. Come October she was admitted to hospital after a fall & was diagnosed with a UTI, she spent 7 weeks in hospital & was discharged with carers calling 4 times a day & the district nurse once a week. Within 36 hours she was back in hospital as we just couldn't manage her, her mobility is virtually nil, she is incontinent, doesn't recognise us & she has horrific mood swings telling us she wants us dead, can't remember my lovely dad who died 7 years ago. 24 hours after being readmitted they said there was nothing medically wrong with her, 20 minutes later they rang to apologise as she had nearly knocked out a doctor after throwing a full water jug at his head & was screaming the place down. In total she has now been in hospital for 10 weeks & they say we need to find a nursing home for her, she will never be fit to come home again, I effectively lost my mum at the beginning of October. I'm at the stage I wish she could get something like pneumonia that would take her peacefully & quickly, she has lost nearly 5 stone in weight, has pressure sores on the bottom of her back & bum, is hardly eating, refusing medication & has no quality of life, who wants to get old?