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Elderly parents

I am having THE worst time. Long- sorry

92 replies

Kenworthington · 31/03/2020 21:55

So, I posted a bit about this on an old thread in the dementia threads. But this board is busier so here I am. Anyway.
Bit of back story, my dad is end stage vascular dementia/Alzheimer’s. He’s been in a home for nearly 5 years now and is close to dying. I was told this back in December. He doesn’t really eat, completely immobile, doubly incontinent, doesn’t speak etc etc. Despresing and sad but he’s had it for around 15 years. We are already at 11 years post diagnosis. Never ever expected he would go on so long with it but he had it early in his early 60s.

Meanwhile, my mum. So she’s 81. Up until August/September time last year, she was quite active, going out on the bus independently, looking after herself. She’s type one diabetic. Around sept things started going downhill- several things happened in quick succession-
*she developed a really bad pain in her hip/leg. Could barely walk, became very unsteady, wasn’t sleeping. After many many trips to the Gp and an x ray they discovered she had severe osteoarthritis in her hip. After a few physio sessions where she was give exercises to do at home, it slowly eased. The pain went away but Walking was still not good. She started using a stick. Very shuffly. Around this time she had already stopped going out independently as too wobbly.

  • then she developed extremely swollen feet/ankles. She went to doctor. Saw a new qualified doctor who said it was due to her varicose veins. I didn’t think this was true. She’s had the veins forever and has never had this problem. She is also tiny. You could see it wasn’t a usual thing for her. So I took her back and said I didn’t belive that was the cause and asked them to check her heart. Another doctor came in and checked and checked her heart and her chest. Fluid on chest. It was agreed that her heart was failing . She was put on various meds to sort the heart and remove the fluid.
  • I started noticing her memory was getting bad. She started asking me stuff over and over again. I just knew this was the start of dementia. It’s got worse and worse.
  • she became isolated and needy. She needed me every single day, for hours on end. She wanted to do the same thing every day. She would be depressed if she thought I wasn’t going over and difficult if I was Poorly or something and had to cancel. There were many many trips to and from the doctor. The doctor and diabetic nurse became concerned about her insulin/blood sugars . She still seemed able to Anaheim it all herself.
  • we saw a consultant at the hospital who thought vascular dementia was probable. He did a brain scan anyways o tile anything else out and we were due back at hospital in May for memory clinic for official diagnosis.

Fast forward slightly to two weeks ago. I knew the ‘isolation’ thing would be tricky for her and as such I was going over every other day rather than every day. And I was just going and sitting with her and having a cuppa rather than our usual trips out to the cafe and supermarket. I could tell she was getting more depressed and gp agreed to put her on antidepressants in her next pill pack.

Now the big problem:
I saw her briefly the Thursday before lockdown. And sat morning she text me early to say she as fine and not to go over and shed see me the next day. On a whim I decided to pick her up some treats and drop them over. When I got there I couldn’t find her straight away then found her lying barely conscious on the bathroom floor where I thought she’d perhaps had a hypo. She was talking nonsense and crying. I tried to get her up but just couldn’t do it. She was a dead weight, and pouring with sweat. Ambulance came and as soon as they turned her over she was totally grey and one said to the other ‘she’s going to go’ Sad. So anyway eventually they took her off to hospital and I still really thought she’d come home that night. I went back in in the pm and took her some clothes etc. By which time she wa sin the acute medical ward. Late that night I had a phone call from the doctor to say they’d discovered she’d actually suffered a massive heart attack. It was clear they expected he’d to die. I went in a few times the next day. Becaus if the virus we were only allowed in one at a time for up to an hour. Also saw her in the Monday. Then- lockdown. So she’s been in hospital now for a week and a half. She can’t have any visitors. She’s getting more and more sad and depressed and confused. They moved her yesterday to a small community hospital. Which is miles away from me. And now we are waiting on a room in my dads nursing home. Which she doesn’t know she’s headed for but there’s no way she can go home to live alone now. Today on the phone she asked me about her mum and could I check on her Sad - she died 17 years ago.
Anyway I don’t know what the actual point is of this, perhaps to just get it all out so I can return to it. I am SO stressed and anxious. I’m an only child and I have to sort it all out. There’s too much. She’s going to hate going into the home but the three carers a day they are offering me (becasie they want her out of the hospital) is going to be nowhere near enough, esp as they often don’t turn up and they don’t stay long. I also know how resistant she is to having carers in the home. She looked after my dad mostly alone apart from support from me wat longer than she should have. I mean she’s not going to get better. It’s going to get worse and worse and it’s all so fucking unfair .

Sorry about the monumental essay and now I’ve got it all out I’m afraid I’m going to do a terrible thing and go to bed because I’m emotionally shattered but if you do reply thank you so much and I promise I’ll be back tomorrow.

OP posts:
CMOTDibbler · 30/04/2020 16:23

Thats brilliant that you had a good phone call. Fingers crossed for next time

Kenworthington · 30/04/2020 20:21

Thanks so much all you lovely lot. Dad is also doing well today apparently too. Fingers crossed it continues a while at least

OP posts:
cakeandchampagne · 30/04/2020 20:38

Flowers How sad for all of you.

You could just tell her her mum is fine, and try to change the subject to something related- the garden her mum tended, etc.

Honeyroar · 30/04/2020 20:47

Oops I meant to say you’ve done what’s right for her, not you!

MotherofTerriers · 30/04/2020 21:22

Tell your mum she can’t go home until the doctor says she is well enough and you’ll speak to the doctor as soon as you can. In the mean time she needs to eat and sleep well to speed her recovery

TokyoSushi · 30/04/2020 21:43

Oh OP, I've just come across your thread, what a time you've had. You sound like you're doing amazingly well, sending lots of strength and unmumsnetty hugs your way.

Binglebong · 30/04/2020 21:45

So glad it's looking a bit better.

Kenworthington · 03/05/2020 12:45

Well it didn’t last. I knew it wouldn’t. I knew. But still I was really hopeful as I rang her this morning. We are back to her being distressed, confused angry, asking about her mum, thinks she’s on holiday, she should never have gone on holiday as now she’s stuck. No one visits her (well yes obv this actually is true!!) , no one comes in to her room to see her, it’s just terrible. I really really hate lying about her mother and she really pushed me into a corner today so I had to say I was looking after her 😬 . Still appears to have forgotten a bout my dad. Although she asks about the kids so that’s weird. So in some ways she is stuck in the past perhaps when she was young but also she is aware she has grandchildren. Weird.

OP posts:
CMOTDibbler · 03/05/2020 12:53

There is absolutely nothing wrong in telling lies for your mums wellbeing - in fact Contented Dementia recommends it as there is no point distressing someone who can't keep the truth in their reality. It hurts us more, but keeping the person with dementia on an even keel emotionally is more important.

Honeyroar · 03/05/2020 13:00

I can’t count the number of times I lied to my mil. It stops the stress for them too, and they often don’t remember what you’ve said two minutes later. I used to see her face relax when I agreed rather than corrected her. From their point of view it must be awful having everyone tell you you’re wrong all the time..

Binglebong · 03/05/2020 14:14

The current advice is to go with their reality. So "yes, your mum's fine. She's asleep after dinner so can't talk right now", "it's a pain being stuck but isn't it lucky that you were on holiday so get to still be looked after and pampered a bit?" "The kids are fine, missing you the same as I am."

Try to just to with it. It is exhausting and feels wrong but you will both be happier for it.

Flowers
Rinsefirst · 03/05/2020 15:41

I found dealing with DM in the early stages of dementia on the phone really difficult. It took me years to realise not to challenge her version of events and be kind and accepting. Conversations could also only be about her, no longer two way. I was ridiculously slow to process her new normal and not take it personally. But eventually I became a total pro at saying my Dad has popped to the shops, that her brother might come over later and that her mum knows she will be late back. Once I stepped into her world it all got easier. Flowers

Kenworthington · 03/05/2020 16:21

Thank you for all your replies. I know the lying and going along with things is the right thing to do which is why I’ve been doing it even though it feels so so wrong. I guess really I keep thinking she will remember the truth and know I’ve lied. Which is ridiculous. But that’s come from the place that from the time from the heart attack 6 weeks ago she’s dropped off a metaphorical cliff with the dementia. It’s SO sudden, this awful change. So it’s hard to process this is it for ever now. It’s also hard to do it all on the phone, the phone calls of which I am going to go back to restricting because I don’t think it’s helpful to either of us tbh. I wonder whether FaceTime might work better if I can Get them to sort it? Or may make her even more confused. If she thinks her mothers still alive she might be horrified to find I’m in my mid forties!

OP posts:
Choice4567 · 03/05/2020 16:35

Hi OP. Just wanted to say that we were in a very very similar position with my grandma a few months ago. We found FaceTime actually better than phone. The Home would go round with an iPad, on a rota, and FaceTime 1 family member. My grandma didn’t really know who my mum was often, but was much happier when she could see her and did lots of smiling and waving

forgetthehousework · 10/05/2020 19:01

You may find she 'recognises' you as her mother, particularly if there's a family resemblance and her dementia has caused her to regress in time too. My gran used to muddle up lots of family members (including some who died passed away) when she developed dementia, but actually that made things better because she thought they'd visited her.

BigMetalPebbles · 11/05/2020 09:43

Oh yeah. I remember going to see an elderly relative in her (lovely and probably therefore wildly expensive) care home and she'd often call me by my Auntie's name, I'd just laugh and say "close enough", as long as she was happy ...

Binglebong · 11/05/2020 11:42

My grandad decided my gran was his mum and he was married to mine! He had no idea who I was but he was happy with it.

It's one of those illnesses where it really is harder for the ones left behind.Flowers

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