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Dementia and Alzheimer's

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Can someone please have any advice on this issue

17 replies

Kimbo180 · 13/08/2022 17:30

My partners mum have dementia which we dont no what stage yet. She seems to be going downhill fairly quick.
So here is the issue
She keeps thinking she is going to soil herself
She goes up the toilet about 100 times a day
Wont go anywere because of the same issue.
Always wanting someone to go the bathroom with her.
We have tried loads of things try keep her mind of things etc nothing seems to be working.
Does anyone know why she is like this is it just part of the diesese?
Were exhausted trying to deal with her.

OP posts:
SolasAnla · 13/08/2022 17:33

Has she seen a GP and ruled out any medical conditions which would make her free as if she needs to go all the time?

Kimbo180 · 13/08/2022 17:34

Yes they were all out last week and said everything is fine .

OP posts:
PritiPatelsMaker · 14/08/2022 08:30

I'd ask the Doctor's Surgery to refer her to the Incontinence Team to see if they can help you.

It's an awful disease isn't it?

Kimbo180 · 15/08/2022 10:42

Ah its heartbreaking

OP posts:
PritiPatelsMaker · 15/08/2022 20:55

Has she had a care needs assessment yet @Kimbo180?

Kimbo180 · 15/08/2022 21:27

No not yet we are waiting for the occupational therapist to do it. But things are very slow moving with it all.

OP posts:
PritiPatelsMaker · 16/08/2022 06:59

No not yet we are waiting for the occupational therapist to do it. But things are very slow moving with it all.

Services are very stretched aren't they but I'd be into them daily of it's affecting your lives this much Flowers

Candleabra · 16/08/2022 07:10

So sorry. Yes my mum went through this. I think it an awareness that she wasn’t completely continent so she became obsessed with going to the toilet. If we went out for a meal she would go 5 or 6 times, and needed to be accompanied so it was very difficult and made leaving the house almost impossible . All aspects of toileting became very difficult so I really have my sympathies for you dealing with this.

Kimbo180 · 17/08/2022 16:42

Was your mam at later stages ?were begining to think she will be 24 hour care soon. Were doing it between us.
Its taking its toll on everyone tho atm.

OP posts:
HeddaGarbled · 17/08/2022 16:51

Would she worry less if she wore incontinence knickers? Age Concern’s website have a good selection.

Kimbo180 · 17/08/2022 17:06

Weve tried but she wont wear them.

OP posts:
Kimbo180 · 17/08/2022 17:07

Was hard even to let someone wash her. She wouldnt let me do it and she has only 2 boys.
Her sisters were doing it. So weve only managed to convince her to let a carer come in twice weekly.
And that was only last month

OP posts:
PritiPatelsMaker · 17/08/2022 17:23

Was your mam at later stages ?were begining to think she will be 24 hour care soon

My DF had the same thing and has gone into a care home recently.

He fell in the bathroom in the night and had to go to A&E and was discharged from the Hospital to a Care Home.

I really would push for a Social Care Needs Assessmentt* Flowers

Kimbo180 · 17/08/2022 20:40

Im in ireland. You have to nearly fight to get everything its scandlous the way they get treated.
Worked all her life.
Very annoying

OP posts:
PritiPatelsMaker · 18/08/2022 07:09

Ah that does make a difference in the process. It's awful how they get treated over in England too.

My DF is struggling with her DM who is now doubly incontinent and SS won't consider putting her in a home because they'd be funding. My DF also has MS and the burden of looking after her DM is affecting her health but SS just don't care.

SolasAnla · 18/08/2022 09:53

Has she still got legal capacity?
She can have "mild" dementia and still have legal authority.
That is the first thing you need to ask the doctor to make a judgement on.
The doctor will supply a letter/ medical opinion which her solicitor will need. If she has she needs to sign a Enduring Power of Attorney and appoint someone to act for her when she can't.
If she no longer has capacity it can be more complicated.

Apart from money most agencies will work with the family ( >> once the family are in agreement<< ), while it may be a little unfair its best if only one or two people get involved in communicating with key decision makers so that there they can build a consistant ongoing discussion of what "the plan" is.

The other thing is her pension if it is being paid into a bank ac she will loose access to the account once the bank realise she has no capacity. If she collected it herself at the post office she needs nominate someone.

Try call alzheimers society who may be able to hepl direct you to getting support.
alzheimer.ie/

If you post in this board you may get better local knowledge
www.boards.ie/categories/carers-caring

She needs a care assessment
www.hse.ie/eng/services/list/4/olderpeople/

You should phone the community health center
[ keep clicking down] www.hse.ie/eng/services/list/1/lho/
and find which public health nurse is in charge of doing the assessments. Why is the OT doing the assessment? No disrespect to the OT but my understanding is that funding etc is managed via the PHN doing a holistic report which OT and physio etc supply parts. The OT can be very valuable recomend, get equipment etc but there may be a incontinence nurse who can help too. If she needs pads etc i believe the PHN can supply some.
In this case you could also ask for a physio to do an assessment of her physical condition to see if soft exercises (pelvic floor) would make her feel more confident when moving around.

www.hse.ie/eng/home-support-services/after-you-apply-the-care-needs-assessment/after-you-apply-the-care-needs-assessment.html

If she now has a carer, you can use that to your advantage.
Make sure that the carer documents their interactions what she can not do, if she is a fall risk etc
And NB that she is refusing to allow family members to help. Sometimes people will behave better for carers and they remove the stress and conflicts involved in doing simple things.
If the carer has experience they are quick to find a method which works with her personallity.

If they are part of a company contracted by the HSE they should have done a full care assessment and have written up a care plan. Have a look at that and see if includes all the points. The company have an ongoing relationship with all the community services needed so (case managers) can also be an invaluable source of information.

Candleabra · 18/08/2022 09:57

Kimbo180 · 17/08/2022 16:42

Was your mam at later stages ?were begining to think she will be 24 hour care soon. Were doing it between us.
Its taking its toll on everyone tho atm.

Depends what you define as later stages.
Looking back it wasn’t.
I thought things were pretty bad at the time but it was nothing compared to what was to come.
She was still at home then.
I’m so sorry. Dementia is the worst disease and when you think it can’t take anything else away it does.

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