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Looking after mum

DeeFur

New member
Jan 6, 2021
2
0
My mum is 92 and was finally diagnosed last April, just as lockdown here started. She wasn't allowed out for the first few months, but now. even is she could, has no desire to do so. Her mobility is very poor (uses a frame) and she went into hospital just before Christmas as was very breathless and had low blood oxygen. Before she went it she still managed to get up in the morning and dress herself and undress and get herself to bed - now she suddenly can't do anything for herself. She lives with us but in the own "annex" and I have always cooked her meals etc - now she can't even manage to come into the kitchen and make herself a cup of tea. I have to wake her most mornings, it then takes at least an hour to get her up, washed and dressed - some mornings she will let me help, some mornings she won't and it takes forever - I can't leave her as I'm afraid she will fall. Her personal hygiene leaves a lot to be desired, she is incontinent (wears pull up pants) and has to be forced to shower - so most mornings its a wash.... she then shuffles from bed to lounge chair where she collapses into her chair she sits in all day. I can't help but get frustrated and I know I come across as angry with her - It's not her I'm angry with its the disease.

I'm in and out all day getting all her meals, drinks etc through the day - often she falls asleep and I worry she doesn't eat / drink enough, so I have to stand and watch to be sure. She fibs and tells me she gets up and goes to the loo but I know full well she doesn't!

I worry constantly that she doesn't eat and drink enough, gets no exercise or fresh air (won't even go for a wander round the garden), is still really breathless and is basically sleeping all the time... She just seems to be going downhill so very fast its frightening and I hate that I feel I have no control over any of it.

Sorry if this seems a bit of a ramble but it all seems to be happening so fast and there is so little trace of my mum left.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,703
0
Kent
Hello @DeeFur. Welcome to Dementia Talking Point.

You are obviously finding caring for your mum a challenge at this stage and I understand it will be difficult getting help in while the pandemic lasts.

I wish I could offer some constructive advice but the body of a 92 year old would probably be shutting down even without dementia added to the mix.

You know she can`t help herself. I`m sure she isn`t telling any `fibs`. What she says she does, she probably thinks she does.

I can see you are frightened the way her health is deteriorating but sadly none of us have any control over the progression of the disease.

I wonder if this will help you.

 

nita

Registered User
Dec 30, 2011
2,058
0
Essex
As you know, her decline is not her own fault - hospital stays can accelerate the decline which will come anyway. Apathy and lack of motivation to do things seems to happen as dementia progresses. My mother got like this about a year into the disease, when I had to wash her, etc. She just let me do it in a totally unresponsive way which at the time was rather frustrating. Now I understand it better, I feel I should have shown more empathy but at the time I knew nothing of Alzheimer's and how it progresses.

On the other hand, there sounds like there is a physical problem with her breathlessness. Has she had Covid? If her oxygen levels are low as well I think that would be affecting her. I think you ought to get a doctor to see her. as soon as possible.

I know it's hard but try to be gentle with her - I don't just mean physically. When it gets too much, you may have to resort to accepting outside help as I did. Maybe you should consider this now as it sounds as if you're doing a lot of to-ing and fro-ing. It will be difficult for you if she is in an annexe and not the main part of the house. Try not to worry too much about her sleeping - my mother slept a lot of the time, even through doctor's visits, for example. I think the brain is trying to shut down as it can't cope with all the outside stimuli. With regard to hydration, I suppose in my Mum's case it was good that she liked a cup of tea so I could supply these often. She had to drink water with her tablets.

Look into getting a sitting service - in our area this was provided by a company called Carewatch but it varies by council area. Also look into carer visits for washing and toileting - the trouble with the latter being that they don't necessarily come at the time of need! Have you had an assessment with Social Services of both your and your mother's needs? That would be the first step and find out what is available to support you in your area. You can refer your mother directly to the SS department.
 

DeeFur

New member
Jan 6, 2021
2
0
As you know, her decline is not her own fault - hospital stays can accelerate the decline which will come anyway. Apathy and lack of motivation to do things seems to happen as dementia progresses. My mother got like this about a year into the disease, when I had to wash her, etc. She just let me do it in a totally unresponsive way which at the time was rather frustrating. Now I understand it better, I feel I should have shown more empathy but at the time I knew nothing of Alzheimer's and how it progresses.

On the other hand, there sounds like there is a physical problem with her breathlessness. Has she had Covid? If her oxygen levels are low as well I think that would be affecting her. I think you ought to get a doctor to see her. as soon as possible.

I know it's hard but try to be gentle with her - I don't just mean physically. When it gets too much, you may have to resort to accepting outside help as I did. Maybe you should consider this now as it sounds as if you're doing a lot of to-ing and fro-ing. It will be difficult for you if she is in an annexe and not the main part of the house. Try not to worry too much about her sleeping - my mother slept a lot of the time, even through doctor's visits, for example. I think the brain is trying to shut down as it can't cope with all the outside stimuli. With regard to hydration, I suppose in my Mum's case it was good that she liked a cup of tea so I could supply these often. She had to drink water with her tablets.

Look into getting a sitting service - in our area this was provided by a company called Carewatch but it varies by council area. Also look into carer visits for washing and toileting - the trouble with the latter being that they don't necessarily come at the time of need! Have you had an assessment with Social Services of both your and your mother's needs? That would be the first step and find out what is available to support you in your area. You can refer your mother directly to the SS department.
Thanks for the reassurance. The breathlessness was what she went into hospital for - I am waiting for a call back from GP to find out exactly what this did while she was there as there doesn't seem to be any improvement to me. SS came to visit about a month ago, so am waiting for a follow up from them too as well as a visit from OT...
 

Weasell

Registered User
Oct 21, 2019
1,102
0
Thanks for the reassurance. The breathlessness was what she went into hospital for - I am waiting for a call back from GP to find out exactly what this did while she was there as there doesn't seem to be any improvement to me. SS came to visit about a month ago, so am waiting for a follow up from them too as well as a visit from OT...
Heart failure can make you breathless and very tired.
 

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