Mum has Alzheimer’s, two years now. I gave up work to care for her, claimed all I could, My sister helps once or twice a week, but that’s it, a 15 min visit, tells me do this do that. Buy buy see you again. It’s not much help
Now mums started night time confusion. I put her to bed when she asks, but she will wake me 3 or 4 times in the night till about 2 am. The dogs get upset, my son tries to calm her but it rarely works. She is convinced she is in a hotel and wants to go home right now. I show her all her familiar stuff in her room, a room she sleep in for last 23 years, she will settle for 15 min or so and it all starts again, GP stopped her Donepezil, said it was probably causing the night confusion, that was 2 week ago, but it’s no better. I am exhausted, I can’t settle to sleep, am on alert for her
walking about. She used to go downstairs and wander about. So I turn the chair lift off now and she stopped it , I have a gate at top stairs as well.
I got 3 hours disturbed sleep last night, then I heard her moving about at 6 am demanding tea. This can’t go on, I am a walking zombie all day as I have to keep ears and eyes on her 24/7
Has anyone any advice, had similar happen, we tried to get some help from social. But they are so short staffed they not doing any new referrals till April next year 2023
I have no life now. My sister tells me where she been night out, meal out… Me! Not been anywhere except walking the dogs for 2 years. This started getting bad when we lost step dad in January 2022. Think I just need some advice from you lovely people who do the same, how can I deal with it?
Hi Christine
I really feel for you. Heartbreaking situation.
You may have to agree with your Mother that she is in a hotel room because she really believes it. Saying something like you can’t go home just yet, no transport or similar.
You really should explain to your GP that you are so exhausted, can’t go on any longer, and need support. He should refer you for assessments,and push the need.
Your sister, I would suggest to her that she has to step up the game, that you and your son on going out or even away for a few days, and will go regardless. I know it will be very hard to say it but she will have to stay with her, or take your mother to her home and have a taste of what goes on.
I’m sure others will be along with other advice but I do know you have to shout the loudest to be heard.
I had exactly the same with my Mum. I know that the night ti9me confusion is a side effect of Donepezil so started to do some research. I found a Canadian study that said it could be taken in the morning rather than the recommended night time. I discussed this with her geriatric psychiatrist and he agreed to her taking it in the morning with her other medications to see if it had a beneficial effect. After a few nights it did make a difference and the wanderings/confusion became less. Eventually though they did return.
Yes. Was told same. Lucky for us our Gp is also well versed in dementia issues having worked in the field . But he took her off it. As said it’s only beneficial in first 12/18 months then any good effect diminishes, how do you deal with the night. I am finding it so hard to get back to sleep for being on alert for any sounds from her room
I know saying anything to my sister will cause a row. She is all self self. If you know what I mean. Like last 3 days she been on a mini break and point blank told me get on with it. Don’t bother me ok
Mum is a darling in the daylights hours. It’s the nights. I will try the agree with her. Transport tomorrow. See how it pans out. I just try to tell her about all her familiar stuff and then say it’s your bedroom. Look at your pictures. Your dressing table. Your wardrobe. I promise mum would never put her in a home. But I feel some nights that would be best. Then I feel guilty as hell
Christine,
There is a term on the forum for relatives like your sister - helicopters. They hover in, make suggestions/ criticise and then depart and don’t give any help. Unfortunately they are unlikely to change.
In your Mum’s confused state home is probably her childhood home. Pet used to talk about ‘kind lies’ that she used with her hubby. If your Mum thinks she is in a hotel room it’s kinder to agree. You can always point out the familiar things in addition to Pet’s suggestion and say something like, since we are here for the night, it’s nice you have some of your things here with you.
Re your promise regarding not putting your Mum in a home - what about a compromise and a few nights respite so you can catch up on sleep?
If you get ill from lack of sleep who will look after her then?
Christine
Before my husband became ill with vascular dementia and strokes we promised each other we would never put each other in a home. Very very sadly and with a broken heart I could not keep that promise. His needs were more important than wants. It was for his safety. His consultant strongly advised ( in fact I don’t think would have been allowed ) me having him home. I was at breaking point. Eventually I saw that it was better for both of us and my family. We could visit, care manage but leave,knowing he had 24/ 7 care. Could take a breath at home. The guilt was heavy at times, but truly it was for the best.
We had been Married for over 50 years when he died. Very much loved.
Lots of relatives I met at the home had made similar promises that could not be kept. For all the right reasons
Hi Christine. I’m pretty sure that accepting no new referrals until April has no legal basis and is challengeable. Is there a local advocacy service you can use?
If not, tell them that by April you’ll be in a state of collapse or worse and that they are breaking the law. Make sure you get their name. Ask them to spell it for you as you want to make sure it’s right. Then ask them to confirm in writing that they are taking no new referrals. It might trigger a response you can use, or provide you with evidence to take higher.
Your sister has lost her right to involvement in any decision about mum by her behaviour. Something will only change when YOU refuse to do it any more. However, there is lots to consider. Does mum own her home, or rent it? How old are you and your son? Does mum have over £23,000 in savings. Do you know about NHS Continuing Healthcare?
Mums CNN lived with me last 23 years. I built a granny annex on my home for her and dad. Yes. I had a conversation with her today. As I got flu and she came over. Got mum up. Did breakfast. Tidied up a bit. And came back with some dinner at 5 and put mum to bed at 7. Had to laugh. Didn’t fetch ant cooked food for me. Who feels like death:joy:
We got a financial meeting with local council to see if we can get any care help , here in wales you can’t get even self pay care without an assessed visit. Which been pending since September. Our local health board is going into special measures. Do not good there is it.
I did manage to get gp yesterday to refer us to incontenant nurse. As buying stuff is ££££ mum does have savings. I am 63
Christine, so you started caring for mum and dad when you were 40, 23 years ago. That’s enough for anyone. If mum has savings, she should be buying EVERYTHING she needs AND paying you to care for her, as you have given up work for her. I’m not sure of how things work in Wales, but if the Care Act applies there, I suggest you ask for a “Care Act Advocate” for you, and one for mum. Waiting 4 months for an assessment is unacceptable.