Need to vent - no sleep for 4 nights

Jerseygirl

Registered User
Feb 8, 2021
61
0
I am sorry if this post offends but i need to vent. I am sole carer for my mother who has had alzheimers diagnosed in 2017. She is stage 6. Since new.year i am getting more angry and snapping at her and then feel guilty of course. I have no family or friends and just the 2 of us and i work from home 24/7. Lately its the constant sobbing, anxiety or just yapping at me complaining talking rubbish. She has not slept in 4 nights and hardly shut up. When i beg "i have not slept for 4 nights" of course i get back "well neither have i". At least if i let out a primal scream (i wish i had a field to stand in and let go) it quietens her down for 10 mins.. no matter what i do otherwise (soothing, distraction, music) nothing else works. She cannot walk, eat without help or anything - only go on and on. Care homes no good here, tried them with respite and had to bring her home. Home carers not been great and they only come during day when she is worse early morning and night. I just want this to progress quickly and be over with.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,710
0
Kent
Hello @Jerseygirl

There must be something available for you. However unsatisfactory it is it surely cannot be worse than what you are living with now.

If your mother is stage 6, she is totally incapable of moderating her behaviour and that coupled with your exhaustion cannot be good for either of you.

Have you tried this link?

social-care-and-support-guide
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,812
0
Oh dear @Jerseygirl your post is not offensive , it is the post of someone reaching the end of their tether. And I really feel for you.
Please follow @Grannie G’s advice, not all care homes are the same.
 

snowmile

New member
Feb 3, 2024
6
0
I really feel for you. I had a couple nights in a row when my mom didn't sleep and I thought I would lose my mind. Maybe this is a dumb question but can her doc prescribe medication that would help? My mom takes zoloft and ativan. It helps so much to calm both her mind and her body. I'm in the US, not sure the drug names are the same. I don't know how you do it alone, I had to get an aide so I could go into the office to keep my sanity. Since I'm reading this site, obviously thing are still stressful :) I hope it gets better for you soon.
 

lollyc

Registered User
Sep 9, 2020
959
0
Not offended - been there, but I had given up work, so at least didn't have that in the mix too. I know some don't approve, but I went down the drugs route. GP was reluctant - falls risk etc. - but eventually prescribed Mirtazapine, Quetiapine and the occasional Lorazepam (we tried several others along the way) which did help. Lack of sleep is so draining, but it's also so upsetting to have someone so distressed and anxious all the time. If they had a physical pain we wouldn't question giving medication to solve it, regardless of any possible side-effects, but the medical profession seems to view the mental anguish of dementia in a different light.
 

Fredalu

New member
Jan 28, 2024
7
0
lollyc, I feel for you. the drugs can minimize the ups and downs , but remember they cant really fix anything. . I believe they have calmed the outbursts of anger, but then so does a dish of ice cream.
 

Firecatcher

Registered User
Jan 6, 2020
587
0
I’m totally on your side. I’m an only child and although I never cared directly for my Mum who is now in a care home just managing everything whilst trying to work has been difficult and stressful enough. The situation you’re in can’t continue. I’d contact your Mum’s GP and request an urgent referral to the community mental health team. GPs are usually reluctant to prescribe medication but the CMHT will be able to. What was the reason for respite care not working out. We’re the care homes unable to cope with her behaviour and insisted you took her home. There are care homes that can manage challenging behaviour so maybe do some more research. If your Mum has above 23k in savings you can organise a care home without having to consult with social services. You need to prioritise your needs not your Mum’s wants. People can live for a long time with end stage dementia.
 

Jerseygirl

Registered User
Feb 8, 2021
61
0
Thank you everyone for your supportive replies!. It means so much as its so lonely.Its so good to vent without judgement as the guilt is bad enough. I do have an annual telephone review with the doctor's nurse on wednesday so i am going to stress her anxiety and sobbing as its so stressful for her often been in a state of fear, as well as watching her. Previous respite did not work well, first time was in 2019 when i was at a breakdown and she was in for 10 weeks while social services came on board but there was a lot of PWDs with challenging behaviour causing her real fear, same happened in another place a few years later and, due to seeing a big lack of staff and her fear brought her home after 4 hours, to be honest the third place was better for other patients behaviour and having a separate lounges for those pwds, but not enough staff and she fell twice (causing me more stress with their calls to me wanting me to come and take her to hospital - she was there because my back was injured), and left in wet pants for the week. ) To leave on a more positive note, last night she slept for 15 hours and keeps nodding off now *bliss!" and waking to sing "roll out the barrels" before dropping off again!
 

lollyc

Registered User
Sep 9, 2020
959
0
lollyc, I feel for you. the drugs can minimize the ups and downs , but remember they cant really fix anything. . I believe they have calmed the outbursts of anger, but then so does a dish of ice cream.
Really - ice cream? Sadly not in my world. Anyway, Mum died 2 years ago, so at least her hell and mine are now over. Dementia can't be fixed, full stop.
 

T1000

Registered User
Feb 3, 2022
221
0
I do have an annual telephone review with the doctor's nurse on wednesday so i am going to stress her anxiety and sobbing as its so stressful for her often been in a state of fear, as well as watching her.
I'm not being funny but if she is at stage 6 how is there only an annual call? My mum is still conversational and in a home, but I dread anyone being in the position that they are trying to care for someone at stage 6 and getting 1 phone call a year. Can you also call your local Alzheimers charity branch for support x
 

Jerseygirl

Registered User
Feb 8, 2021
61
0
T1000. I totally agree. Before this not seen doctor since, and that is only because he came to the house (unheard of) to get agreement to a 'do mot resusitate' for their file!! I have been in touch with them over the phone for UTIs and antibiotics but they do not seem to bother now she has dementia! The review was today with a nurse and i spilled everything out, how i am on my own trying to muddle through it all. She agrees. I asked for more regular contact with me, even if just a phone call every 6 months, do i can have medical contact as she is progressing and she asked i do an online consultation request with all this (which i am going,to put all down). She was able to book a medication review re mum's depression, anxiety, sobbing many episodes but they cannot do this until end march. I live in a small seaside town but few doctors and a large elderly population so seeing a doctor is nearly impossible.
 

Jerseygirl

Registered User
Feb 8, 2021
61
0
Really - ice cream? Sadly not in my world. Anyway, Mum died 2 years ago, so at least her hell and mine are now over. Dementia can't be fixed, full stop.
I am so sorry to hear your loss. Mum is constantly asking me to 'call the doctor as i have had enough' (ie she thinks doctor will come and put her down) . I guess somehow we expect when our parents gets old we would spend more quality time together, enjoy our last months together, express our love.... not have them turn personalities, not to appreciate or care about you, unable to face spending time together and feeling so resentful as this awful disease that robs so much.
 

jennifer1967

Registered User
Mar 15, 2020
23,477
0
Southampton
you are lucky, my doctors do a chronic illness review a year which for my husband includes, COPD, diabetes and dementia as an after thought. also includes a meds review so time is devoted to physical illness. he was asked how he felt about having dementia? one of the kids has to go with him as i cant.
 

jennifer1967

Registered User
Mar 15, 2020
23,477
0
Southampton
I hope he is still able to respond and include some swear words! My goodness, no wonder you can't go
im actually housebound with my own chronic pain so my daughter went that time. i wish they had a better method such as speaker phone. he can respond and did. all they picked up and followed up was he was breathless from COPD. he had to go in again to see the nurse. my daughter had to go with him again. his meds review they do on the phone with me.