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Finding it hard to process progression

Beanie01

Registered User
Dec 4, 2017
18
Mum is 76 and was diagnosed with mixed dementia (Alzheimer’s and vascular) about 2 years ago. She was living on her own until March this year, with carers twice a day (she refused all types of personal care so they simply put her pills out and washed the dishes!) and attended a day centre for 5 days per week, which she loved. After she’d been attending the day centre for about 6 weeks, my sister and I, with agreement of CMHT and social services, came to the conclusion that she needed full time care and she was moved into a care home. Initially, her care home was near my sister in the north west, but whilst the staff were great, it didn’t really meet mums needs. There was no outside space, her room was in the converted attic and it was so loud! Mum was distressed. We found a home near me in the south west, social services agreed to meet the new cost and we moved mum in April. All was going well for a few weeks, but then she started to lash out at staff. We never saw the behaviour and neither did her new Community Psych nurse. Mum started to have falls, and then after in she seemed to simply forget how to walk. She was admitted to hospital with a raging UTI which they managed to control with IV gentamicin then oral antibiotics. She was discharged to a nursing home, thankfully a 2 minute walk from my house. In hospital she had walked with a frame, but since discharge she has never walked again. That was on 20/09/19. She was back in hospital for just over a week with sepsis, pneumonia and diverticulitis and was discharged again with oral antibiotics.
Fast forward 8 days and we’re sat holding her hand, trying to make sure she’s not in any pain, ande telling her how much we love her. I can’t stop crying. But I know she can still hear us so I’m trying not to. 6 weeks ago she was walking with one stick and shovelling anything sweet down her. We knew there was only one way out of this hideous disease, but it’s been so quick! She’s now had 2 doses of diamorphine and midazolam, and we’re panicking that we’re shuffling her off before her time. The nursing staff in her home are lovely, and experienced in palliative care, but we’ve had to point out that she’s distressed/in pain for them to give the meds. The only reason we know the signs is we lost our dad to cancer 18 months ago, 5 weeks after diagnosis
Anyway, I’ve probably rambled far too much now. I know many of you have experienced these circumstances and come through the other side, so I shall too! Sorry for rambling x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,767
Kent
Hello @Beanie01

If your mum is officially on palliative care there is no reason why she should be in pain. When my husband was on palliative care he was fitted with a syringe driver which provided a controlled dose of medication to keep him pain free and comfortable.

It is a shock to witness such a rapid deterioration and painful for you. It does happen though.

Talk to the nurses about palliative care. It might help to make things easier all round.

and we’re panicking that we’re shuffling her off before her time.
No you are not. You are just trying to keep her pain free and comfortable.
 

Beanie01

Registered User
Dec 4, 2017
18
Thanks for your reply Grannie G, it’s just so hard watching my lovely mum go through this
 

Kay111

Registered User
Sep 19, 2019
201
What an upsetting and stressful time for you @Beanie01 - I'm afraid I have no advice for you, and I'm sure there are plenty on here who will do, but just wanted to send you some strength and support.

Please also don't ever feel like you're rambling, we're here to listen xxx
 

marionq

Registered User
Apr 24, 2013
6,132
Scotland
Your experience is very like ours in that my husband declined rapidly after a hip break and stay in hospital. Within days of moving to a very nice nursing home he died. It was obvious to me from the start what the outcome would be but no one would say the words. I can only conclude it is discouraged but I feel the result is an inappropriate attitude of “positivity” in the face of a serious situation.

My husband also was given midazolam and diamorphine and I’m not convinced it was very effective.

Hanging on to the knowledge that you have done your best to make the right decisions is really all you can do. We are fairly helpless in the face of death however inevitable it may be.

Good wishes and strength to you all.
 

Beanie01

Registered User
Dec 4, 2017
18
Thank you all. Strength comes and goes, but I know many people go through this every day. Xxx
 

canary

Registered User
Feb 25, 2014
13,409
South coast
Sometimes the decline can be very sudden and infections of any sort can progress the dementia.
My mum had a hip fracture and this can also progress dementia, which it did in mums case and she also passed away quite quickly afterwards.
You are in that horrible twilight zone when you just feel that you are waiting.
If your mum is in pain then painkillers are the way to go, so that she is not in distress.
(((((((((((hugs))))))))))))))
 

Beanie01

Registered User
Dec 4, 2017
18
Mum passed away about 2:15. I’m heartbroken, but she is no longer suffering. She was aware we were with her, and she knew who we were right to the end. We were lucky in that respect. Thank you all for your words of support.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,247
Yorkshire
sad news @Beanie01
my condolences on your loss
I'm glad (if that's the right word) that she knew you were with her, and hope there's comfort in that for you
 

Stripey3

Registered User
May 29, 2019
33
My condolences for your loss.
Take comfort from the fact that she knew you were there and her suffering is over.
She’s is pain free and at peace now.

Thoughts are with you
 

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