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Hygiene Advice for my 56 yr old Mother with Early On-Set Alzheimers

SHR

New member
Feb 12, 2019
6
Hi guys,

I'm the 29 year old daughter of a a 56 year old lady with early on-set Alzheimers, two years into diagnosis. I live at home with her still, helping out, along with her partner of 18 years, who is 62. Just want to give a bit of context as I feel our ages play a part in this issue.

As you probably all know the challenges are varied, and change frequently in stages and waves. These days, we're having particular trouble with personal care. My mother is double incontinent, and requires help with dressing and washing, we take care of all that, I was hoping to starting looking into getting assistance with this before the pandemic hit. Primarily because Mum has become resistant to almost any step to do with personal care. I feel like it may be due to incidents where she has shown resistance or reluctance before, and we've shown frustration, and then that memory or association with the process and that response becoming engrained or subliminal. Also because it's my stepdad and I doing it, we have very different temperaments, I a freelance TV makeup artist (apparently the creative mindset attributes to a way of thinking up a way around things a dementia navigator once told me), and he a policeman, retired to take care of Mum. Where I think some things are a good idea, he'll think others are, and it's hard to argue because the techniques each work at different times. But if we try and propose it's time to get dressed, or to wash when we know for a fact it's necessary, or brush her teeth, the all get resistance and refusal. Because she is double incontinent, going to the toilet is a behaviour or habit she has completely fallen out of and never looks for it, and when I ask if she needs it, or say let's just see, though I'm occasionally successful begrudgingly, it still doesn't negate the hygiene issues with double incontinence. She doesn't let me know if she needs it, it's just if I make her sit on the toilet just to see if anything happens. Usually I just take advantage of her sat down to change her trousers and pants while she's seated; as if that were the incentive. If a shower is needed, 90% of the time I'd say I'm unable to do that, and my stepdad is only successful if he's insistent. And I know that can only be pushed or trusted as a technique so far, as as she 'deteriorates' she's going to be wilful more physically than verbally, as she feels like her words aren't being heeded effectively. I worry about that even know. Though I try and maintain patience, and consistent pleasant tone, I've been grabbed by the hair or had a slipper help unto me to hit me with it when I've been bent down to hold trousers open for her to step into. And it seems like it is more the activity than the varying ways in which we approach it. But how can this be navigated when these are essential practices for health and wellbeing? I'm starting to worry about our inefficiency as caregivers, though I felt like there's still much of her there to benefit being at home around us. And she's fine in between anything to do with hygiene, bar getting us up and wanting company during the night.

We choose our battles, and toothbrushing and hair washing have really fallen by the way side. Recently asking her to brush her teeth, using a nonchalant throwaway tone, or a more insistent tone, she completely ignores me and gets into her bed. Dead toothbrush, she wouldn't use it because it wasn't charged, charged she's not using it. Me doing it with her, no. Cleaned it brand new, no. We're getting her to a hairdressers soon and that's how we'll wash her hair, limit the processes we have to worry about. When my stepdad helps her get read and changed or cleaned, she starts calling him a peodophile and that he's not safe around little girls, so maybe Mum's age to herself has regressed but this isn't substantiated in other areas. I can't tell if it's just ammunition because he's an older man, though a couple of times, she has actually been very scared. But again whether this is more towards the process, or a legitimate belief that he isn't safe I'm not sure. And when I do it I get the sassiest sarcasm you've ever seen haha. I'll get refusal but with the wriest smile, or I'll get told I'm useless with belligerence, or somewhere in between.
We've been asked whether someone in uniform would be more effective, or other an older woman would work, and these are all processes of elimination I suppose we'd work through when other people can come into the equation. But there's nothing I can spot, in any clarity of mind because we can't get away from it, and whilst these things need attempts to be solved daily, multiple times a day, that are triggering her or may help her in getting these essential processes completed without distress. And stress. For all involved.

I've read fact sheets, and now looking to Teepa Snow to see if she has tips, and I know there must be a million factors, but I was just wondering if anyone else is having these problems and to this degree?

Sarah x
 

May30

Registered User
Feb 25, 2017
48
Hi Sarah
We went through the same thing with my dad. I was your age and my dad was early 70s. We did a referral to social services and they arranged for a carer to come every morning initially to help with washing and dressing and then in the evening. The carer in the morning was absolutely brilliant. They tried to keep it consistent and give us the same person. Dad loved her. She was calm and less flustered than we were when he started to refuse which I think made such a difference and it helped that she wasn't family. If he refused my mum and i started worrying that it wasn't going to work and I think dad picked up on that. Evenings were less straightforward as dad was always more confused and we never found someone who he responded well to for the evening shift so my mum and i would do it. We had the carers coming in for over a year which worked well. The resistance did get worse in the end, both with the carers and us and dad was doubly incontinent which led to his skin becoming sore as we couldn't wash him properly. At that point we weren't able to keep him at home.
I would definitely try to get an assessment through social services to see what support you can access.
Have you had any involvement with an incontinence nurse? Also I remember people suggesting at the time that it could be a urinary tract infection that caused his change in behaviour around personal care so might be worth looking into that.
It's great that you posted on here. I always found it so helpful.
Thinking of you
 
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Bunpoots

Volunteer Host
Apr 1, 2016
4,763
Nottinghamshire
Hi @SHR

@May30 has given you some very good advice. I had to do very similar for my dad. I was his sole carer for many years and he was resistant to personal care, or even the suggestion that he should have a shower or shave unless I was very careful how I phrased it...I usually got it wrong. When incontinence entered the equation it was a cause of constant stress for both of us. Dad didn’t believe he was incontinent and always said being a bit wet didn’t matter!

Dad was always more co-operative with my sister who he seldom saw and she could usually get him in the shower so I think hosting happens with carers who aren’t always around.
Eventually I couldn’t cope so got carers in for dad. I introduced them slowly, starting with weekends, and leading up to 4 times a day. He was usually fine with them but had he refused he would have had to have gone into a carehome. A bonus was I now had a better relationship with dad and could concentrate on the fun things.

Dad eventually went to a carehome from hospital after a stroke and one of the reasons I felt he shouldn’t return home was because he could be very difficult about personal care and in the home they could just try again ten minutes later - something home carers just don’t have time for.
 

SHR

New member
Feb 12, 2019
6
@May30 Thanks for your reply. Yeah I'm sure her skin is getting uncomfortable now, and we've been told similar about a UTI. We had a phone consultation and just had a short course of antibiotics to treat a UTI that might be there, as I kept not being able to get a urine sample. But I realise that treating this UTI is not going to mean much when the conditions causing it in the first place are the very things we're struggling to address. In the beginning I used to be quite good at identifying things that might be triggering her, and thinking objectively and pragmatically, how we might be able to come at something a different angle, but I can't creatively think my way out of this one. And @Bunpoots I appreciate what you said about your sister and too about home carers not having much time. Though my twin sister has never visited and been able to help practically, she too seldom visits, and has is a home-owner, married with a first baby on the way. Even when I had her on my own when my step dad went on holiday for three weeks she didn't come help. And not having time, I'm finding it's the patience, and even with my stepdad. I often find him doting, and a bit helpless sometimes and I find that frustrating. He dwells, and I find it unhelpful. It's been tasked to me to address all the legal and financial elements, and research when we're having problems. But I know this can be seen as cruel and unemotional, but I feel that's the role mine has just become.

But on a more practical note, would you have any advice on contacting Social Services? I'm sorry I have no idea about any of it.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,763
Nottinghamshire
When I contacted SS first time I phoned them @SHR and they did a phone assessment of how I was dealing with the situation as a carer as well as dad’s needs to see if he might qualify for help. Be totally honest about how much you’re struggling. You might be pleasantly surprised at what they can offer.
The refusal to accept personal care is making your mum vulnerable to illness and skin breakdowns.

I felt really daunted at the idea of asking SS for help but all the social workers I dealt with were lovely. Then a social worker would do a home visit but I suspect it may all be done by phone in the current situation.

Look for “Adult social care” on your council website.
 
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May30

Registered User
Feb 25, 2017
48
I completely understand the part where you mention that you try to identify triggers and solutions. We tried the antibiotics route for a uti several times even though it was never confirmed as we couldn't get a urine sample. I did so much research into what could've been the reason for change but I think it was the progression of his alzheimers.
These links might be useful...
 
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Alex54

Registered User
Oct 15, 2018
322
Newtown, Wales
@SHR I give you full credit for the care you are giving to your mother. The one thing going against your mum is her age, Alzheimer's hit younger people harder and its progress is a lot quicker. So get whatever help you can get, shout scream and demand help, otherwise you will end up in a horrible situation.
 

SHR

New member
Feb 12, 2019
6
Thanks you so much everyone for the messages so far :) I should have come here sooner. And @Bunpoots thank you for that advice, I'll get to that as soon as possible, and see what the start of that pathway looks like for us x