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Dementia and Alzheimer's

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Hand Hold Please - Not Sure How To Feel

7 replies

LostInTheSystem101 · 09/12/2024 14:23

Hi All!

I've posted before about my Nan's house sale to pay for her dementia care.

Nan went into a lovely, small, private home, in March 2023, having been diagnosed in 2020, in the midst of Covid and following a two-year battle with Stage IV Bowel Cancer.

My mum kept an eye on her at home, cooked, cleaned, did the shopping, went to her house to let her back in in the early hours when the police found her out wandering, went to all of the appointments with her, dealt basically with all and everything. Nan had several bouts of illness; pneumonia, covid, sepsis, the lot. I live 150 miles away, my aunt (her other daughter) about 70 miles, my mum and brother locally. We all gathered about four times to say our goodbyes. Each time she rallied.

There have been no major illnesses since going into the home. Up until about 4 months ago, she was 'ok'. Mobile, eating, drinking, laughing. she lost her memory of all of us largely, but had moments where she was quite lucid. She then went through a bit of an angry, shouty stage, then became physically aggressive and we thought we might have to move her. However, her dementia specialists were lovely and changed her medication, which helped.

She kept on the slow cognitive decline, then lost a lot of her mobility. She was put on 'comfort rest' about 2 weeks ago, and so stayed in bed, other than to be wheeled into the shower.

I spoke to her 6 days ago, on the phone when my mum was visiting. It wasn't a conversation, but she responded to talking about food "Oh yes, I could do with some mince pies" - that kind of thing. She sounded tired.

Mum called me Saturday to say Nan has stopped swallowing - she will chew food but then it goes to the front of her mouth, and any liquid dribbles out. Her GP is going tomorrow to consent to her medications being stopped, other than the morphine patches she has.

It's time now, isn't it? I am due to go down Saturday, but I fear the chances of her being with us by then are slim. My mum has told me not to worry about going down beforehand, there's nothing that can be done.

So here's the conflict: We didn't have a great relationship. There were good times, marred by very bad ones, She could be spiteful and narky, but also sweet and oddly caring. She wasn't affectionate, but that just wasn't in her nature. My 'Nan' as I knew her, has been gone for a while, all that is there is an old lady, trying her best to slip away peacefully. I just don't know whether to go down and say goodbye one last time, or to wait until the weekend, and if she's still with us, go and sit with her then.

Equal parts of me say stay and go - see what the GP says tomorrow (mum will be there) and perhaps go after that? Go tonight? I mean, I don't know if she's taking any fluid on board at all, but if she isn't, she can't survive much longer, can she?

Sorry for the miserable post - I have nowhere else to vent!

OP posts:
unsync · 09/12/2024 14:36

It's such a difficult decision, I feel for you. I've always thought of how I would feel after. Will I regret not going if they die and I don't see them? If the answer is yes, I would struggle to come to terms with it, then I go - if not, then I don't.

It's a very binary decision, but one you need to think through carefully - you need to be able to live with the consequences of your decision. Flowers

LostInTheSystem101 · 09/12/2024 15:15

Thank you for your reply.

Yep, I know what you mean - I'm just not sure, so I kind of think that means I should go. If I felt sure I'd be ok, I wouldn't even need to ask.. x

OP posts:
Muchtoomuchtodo · 09/12/2024 15:17

It’s hard. I’ve been there. You only get this time once. I decided to go and looking back am glad that I did.

sending you all lots of love xx

LostInTheSystem101 · 09/12/2024 15:22

Thank you, I think I'll head down first thing tomorrow.. xx

OP posts:
LostInTheSystem101 · 22/12/2024 02:38

Just a brief update, Nan passed peacefully at 2am Thursday morning. She had been very happy on Wednesday, and had obviously decided to let go.

No more torture for her. Rest in peace Nan.

Thank you for your support and advice x

OP posts:
Megjobethamy · 31/12/2024 01:22

My husband (64) was diagnosed 6 years ago wirh early onset Alzheimers. We have managed ok until this year and are getting one day " Day Care" and 4 hours per week for social support. Over Christmas his behaviour has deteriorated significantly and I am struggling so much in the evenings.. We have 5 wonderful children and the older 2 are living nearby with their own children and the younger 3 are mid 20s and have gone to various places for New Year. Tonight I just found so difficult.. he would not get ready for bed, called and shouted constantly for me which I'm sure my neighbours could hear. We were relaxing until about 10 and when it came to bedtime it just became impossible and I got very upset and emotiona as he was just so uncooperative. I can't carry on.. I want him to go into some facility. But he's so young, I feel so bad but I'm at the end of my tether. It is the evenings and overnights that are hard. He's fast asleep and I am crying my eyes out. It's so sad but there is no rationalising with him. I am sick and on antibiotics and steroids and I'm just weak... He is on an antibiotic too.. I just feel everything is collapsing around me and my health is deteriorating. I feel he'll outlive me ( I just turned 60) and feel so hopeless and sad. Not sure what I want, a handhd I guess..It's so tough..

LostInTheSystem101 · 03/01/2025 12:38

@Megjobethamy I am so, so sorry for your situation. Have you contacted anyone at Alzheimer's Society? We found them very supportive with Nan. There may well be facilities for younger sufferers near you, though the home my nan was in had residents in their 50s upwards. We were able to choose a home though, as she self-funded. Would that be an option for you?

Alzheimer's Society may also be able to suggest/support with more permanent care at home (that is something we considered), just to take the weight off of you. You could also consider a respite stay somewhere, perhaps.

You're not alone - I'm so sorry you're going through this. It's easy to say 'be strong', but it's very hard to actually be that way. Reach out for help - it is there xx

https://www.alzheimers.org.uk/

Alzheimer's Society

We are the UK’s leading dementia charity, we tackle all aspects of dementia by giving help and hope to people living with dementia today and in the future.

https://www.alzheimers.org.uk

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