Hi,
New here. Glad to find you. I wonder if any of you can suggest ways I can help brighten my Mum’s days.
I live near Mum (88, mild Alzheimers, rather frail now) and help out very willingly with shopping and gardening and other practical things. But I find it hard to just spend time with her. We’ve never been “best friends” the way some mothers and daughters are, I soon become irritable with her.
She’s always been content with her own company, but her ability to occupy herself is diminishing rapidly now. Her sight and hearing are poor and she has hardly any hand strength. She gets a lot of phone calls from family, which is great, but even these are blighted now by her difficulty finding words. I’d like to see her spending time doing little activities with someone cheerful and imaginative (i.e. not like me!). I should add that Mum has always viewed “clubs”/day centres with horror.
So do you think I could find a paid carer (or volunteer) who would fit the bill? And how can I broach the idea with Mum, who is going to think it very peculiar and tell me she’s fine as she is.
HI,
I’m in a very similar position to you. I look after my mother, with the help of carers and find it easier to do stuff for her, instead of being a companion. We’ve never been very close and she’s never really understood or knows who I am. Being with her means that I shut down on who I really am and I end up feeling exhausted when I spend just a little time with her.
I need respite care, but she doesn’t want to go into a nursing home, so I’m having to start pulling ultimatums, but that’s another story.
I think the most important thing is for you to have the kind of companionship that YOU need. Sometimes what we think someone else wants is what WE actually want, but by proxy. I’ve just been diagnosed as being on the autistic spectrum and want my own company above all others. So what I want is plenty of time alone. If I can get that then being a companion to my mother becomes much less important. So first of all identify what YOU need in this area and how much or little time you’re prepared to spend with her.
Then, do you know WHAT your mother actually wants? Would she be happy listening to music for eg or the radio? if her sight and hearing are diminishing, you should be able to find assistive technology.
My brother comes round once a week and being more similar to my mother, they both enjoy a good gossip, which is something of a relief to me. Another brother calls from abroad once a week as well. Her twin sister calls occasionally. Do you have any family who might visit once a week/bi monthly etc?
Are there any associations you can speak to regarding activities that are suitable for a woman in her position?
I hope that this helps. It’s a tough situation and I do empathise.
Hello Owles. Don’t be hard on yourself. Nobody is good at everything. You are good at practical things but not at social chit-chat. Others are just the opposite.
It sounds as though Mum gets visitors with good social skills. If they are now finding things more difficult because of the Alzeimer’s, so will you. Stick to what you are good at. I’m sure Mum appreciates this - and your company, even if you have little to talk about.
Investigate the possibility of a social worker to entertain Mum by all means, but make sure that Mum would be happy with this.
I see Owles hasn’t been back for a while but wanted to contribute to this discussion - this is exactly what I have found with my mum. Before illness and subsequent disability mum needed me as a friend, and for emotional support, and later on for some heavier tasks around the home and garden. I spent at least one day every weekend with mum while working full time, and always either saw her for an hour after work or spoke on the phone every day.
Since needing full time care mum is a completely different person. She doesn’t like to read any more, doesn’t enjoy TV, won’t engage in any activities unless I’m doing it with her and then is quickly fed up with it. The only thing she will do is ironing hankies (I gave her a cold iron at first but since I have to stay right next to her anyway and she was ok, I let her use a warm iron). I have to wash and scrumple up the several dozen hankies I bought for the purpose every other day in case this is what she wants to do. I have to get out the iron and an extension lead, set up the ironing board with her wheelchair and then sit next to her and make sure she’s safe while she happily irons away.
I’m so exhausted from the care that I just don’t have the energy to chit chat - and mostly mum’s chit chat is thinking of things I have to do, or worrying about things we can’t change or do anything about, or repeatedly worrying about missing birthdays, and that is exhausting in itself. I need to have more than half an hour (while she catnaps) to think my own thoughts, or just not think at all. She talks incessantly. This is on a good day - on a bad day it’s all that along with agitation, frustration, anger and tears and screams (of course I don’t let her do ironing in that case).
This goes on through the night as well. She has more than once suggested I hop into bed with her to keep her company!!
She is lonely and grieving for the life she so abruptly lost, but I can’t fill all the gaps - I too am a person who needs alone time.
Gosh Jean, you can’t keep this level of interaction up!
I get like this in the hols when I am with S 24/7, I love him dearly but talking about his special interests, providing reassurance, helping him manage his stress levels, structuring his day and being his main source of entertainment is exhausting. It’s better when we are able to go out and also see people - as that wears him out socially and then he needs less interaction for me. At least I know its only for a fixed period each time (although Covid changed all that.)
I think your ironing task is very creative and great that you have found something she will do.
I can’t remember her diagnosis? Would she chat away to a budgie or a cat or a baby doll? What about a telephone befriender? If she has had her jabs, then how about a care worker taking her out in her chair to give you a break?
Hi Melly, she doesn’t have a diagnosis yet, they were thinking along the lines of residual delirium from the infections, hospital stay and Covid but it seems likely now that she has dementia. We were hoping she would gradually get better but it doesn’t seem to be going that way so we will have to get referred to the memory clinic - we did have a referral a few weeks ago but mum was slightly better when they rang and I was concerned she’d know what was going on and be upset so we agreed to leave it for a bit.
A pet isn’t a good idea at the moment, I can barely manage mum and her unpredictability would mean a pet wouldn’t get the attention they need. It would be ideal though, if next door’s cat would visit - our neighbour is lovely and said she’d be only too happy for him to visit mum, but he’s playing hard to get and won’t come to us yet!
Mum is deaf so telephone is out and she hasn’t had her vaccine yet because of having a suspected urine infection when they came round to do it. She does have some friends we could arrange to come and visit, and hopefully it won’t be too long before they can come into the house.
I was going to start taking mum out for walks in the wheelchair just before she went back into hospital so that is something to think about, and maybe I can get a carer or volunteer to take her for a walk sometimes as well. If she is in a good phase I hope to get her to the garden centre but I’m a bit nervous about that and want to wait until we can have a coffee in the cafe as well.
Mum does need 24/7 supervision at the moment - sometimes I think I’m being over cautious but then mum will suddenly get it into her head that she can walk unaided and try to spring out of her chair to go and do something. In any case, she doesn’t spend long in her chair before she feels tired and wants to lie down again. If I try to encourage her to stay “up”, she usually cries pitifully or gets angry. When she is lying down in bed she expects me to stay with her and chat, and ramps up to screaming if I don’t go back to her when she calls me.
She uses the commode every hour at least, through day and night. When she was in a good phase I did get her to agree to use pull ups to have a wee at night, but she soon forgot about that and also calls me because she thinks it’s time to get up, or she is confused about what the clock says.
I’m a bit concerned that intermediate care didn’t flag any of this up to me before discharge last time - however at that time it was a covid recovery unit so they weren’t working normally. It seems to be the same at the hospital as well though, they just accept whatever cognitive state a patient is in as normal for them and even when I alerted them to mum’s cognitive deterioration just before a major delirium “spike” they didn’t take any notice of me. They had to sedate her twice that night, and move her to a separate room as she was screaming and shouting and physically agitated. Edited to add, they had already done tests for infection so these episodes are happening for no apparent reason.
Despite me asking for further investigation into that, they only said they’d see about psychiatric assessment. Now that mum has been moved to intermediate care that may not be followed up - I will have to try and talk to them. It seems endless and relentless, dealing with near-impossible demands as a carer and trying to get the right medical attention at the right time.