Coming to terms with caring

I’ve been helping to look after mum for years, I suppose you could say caring but she could do a lot for herself. She had a stroke 5 years ago, good recovery, but diagnosed with vascular dementia just over a year ago.

I struggle with 2 things; her nasty phases where I’m blamed for anything which might upset her that day and her incontinence.

I buy her incontinence pants from Boots. I tried using the local incontinence service but the pants they supply aren’t absorbent enough. I tried to get her to use these in the day and the Boots ones at night but she can’t maintain this separation. She wears rubber pants over the maxi incontinence pants because she won’t change them enough and I can’t make her do it. The incontinence service aren’t helpful. I tried asking for pads because she might be able to change them more easily but they only prescribe pants for dementia patients. I feel like I’m on my own with this!

Her house smells depsite my efforts & those of her weekly cleaner (who is lovely). She wears one pair of pants in the night and another in the day even if she realises she is wet. I buy bed pads but sometimes this is soaked too. She gets dressed / undressed in her living room so she leaks on the chairs & sofa. She will only have one shower per week.

I see her every morning to help her with some of her dressing. She won’t have carers as she thinks it’s ‘my duty’ to look after her. I’m an only (adopted) child.

I look after her finances (I have POA - you can’t imagine how nasty she was when I insisited on this on advice from nurse), take her to medical appointments, arrange her medication, sort letters, bills, etc as well as working part time. She’s had more falls recently (waiting for a visit from Falls Team) so is needing more help & I’m getting worn down.

She lives close by in her own flat & has savings which mean she doesn’t qualify for help. I get carers in when I go on holiday but this always makes her nasty to me. It doesn’t stop me though - I know I need a holiday!

I’m used to her moods. The dementia has made it worse but she’s always been prone to blaming me for her problems. It’s managing the incontinence that I’m struggling with. I don’t know how to make her keep clean. The dementia nurse is no help… she didn’t even refer us to the incontinence service when I asked. Another nurse did an assessment, based on keeping old people in their homes, which generated such a plethora of phone calls from the local authority I was exhausted… and none of them could do anything to help!!

How do other people manage?

How old is mum? Does she own or rent her home? Are you claiming DLA assuming she is over pension age? Exemption from Council Tax?

Hi, she owns her own home & gets higher rate attendance allowance. She’s 90 next week! I saw the Martin Lewis thing & sorted out the council tax. I feel like I’m always battling & mums never grateful or happy about anything I do. It’s not like the money thing is an issue as she won’t have carers so I don’t need to worry about paying for them!
I’ve been reading some of the other posts and one guy said he can’t see a way out until either he dies or his mum dies, which pretty much summed up how I feel too.

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Mum now has a number of issues which will get worse, never better. The dementia means she isn’t thinking clearly and is being nasty to the person who loves her most. Nothing will change until something happens to you, or you force change. To some extent, carers get the treatment they are prepared to accept, and mum thinks it’s OK to treat you badly. However, you won’t last forever. What about you, your hopes, your dreams, your happiness? Are you OK financially? Do you have any payment for the care you are giving? I looked after 10 family members at various times, now only my brain damaged son. Financially I’m OK, but at 72 I am too arthritic to realise any of my own dreams now, widowed disabled. If I had my time again I’d do things very differently.

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Hi Molly

Is it worth writing to your mother’s GP and explaining about the incontinence situation? It seems crazy that you cannot get pads prescribed. I had to do this for my husband who is 84.

I can relate to a lot of what you say re the personal care or lack of it. It seems to happen quite a lot with people suffering with dementia . I struggle to get my husband to change his pads and have to literally ‘steal’ his dirty dressing gown when he has a bath to wash it. He does not do his teeth either.

I think you do need to ideally get to speak or see her GP and explain how bad things are. Things do not move quickly in the NHS. Also do you have a local ‘Support for Cares group’? If so then they can often offer advice and know what is available in your area.

With regard to the nastiness, can totally relate. But YOU matter too. If you were not prepared to do so much your mother would HAVE to accept Carers and maybe now is the time to implement this? Old people can be very mean but if your mother has money, she should pay for her own care. I am an only child too and my late father expected me to care for him as well as my husband but I afraid I wrote to the GP saying they had a ‘Duty of Care’ and I was not prepared to sleep walk into caring for two bitter nasty old men who hated each other. So do not let her ‘guilt trip’ you. ‘’

Why not have a look at Roll Call? We share the ups and downs of caring and help each other through. Just lurk for a while if you wish.

Hi @Molly5002

welcome to the forum, caring for your Mum sounds tough. When you were helping to look after her - that was caring too.

It’s good that you take a break and get away; even though your Mum doesn’t approve.

There are others on the forum with experience of dealing with incontinence; carees not changing pads; the smell etc @Chris_22081 and @susieq have mentioned in the past products that help with the smell. Also those dealing with poor hygiene.

The dementia nurse sounds useless and the pad situation is ridiculous - some carers/carees have to pay for pull ups because they are what’s needed and the incontinence service won’t provide them; you don’t want them and they the only thing being offered.

I agree with @helena_2006 it’s worth writing to her GP about your concerns.

Both strokes and dementia can cause personality changes, and I know its easy to say, but try and remind yourself that it’s the dementia talking when she says hurtful things.

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@Molly5002
Hello and welcome to the forum. My lovely late husband suffered strokes vascular dementia and other health issues. His personality did change as in getting aggressive verbally especially a time when he had delirium. Eventually I adjusted to the fact he had dementia and really couldn’t help it. Sometimes when struggling I would write an imaginary D on my hand and it helped me crazy as it sounds. Because of his complex needs he needed to go into a nursing home. Heartbreaking.
I’m so pleased you can take a break from the caring because it’s very much needed. Life sounds tough for you

Hi @Molly5002 As others have already said “welcome”.

@Melly1 mentioned that I have talked about problems with my husband being incontinent. This got worse in the run up to him being diagnosed with prostate cancer just a year ago. At that time I was often changing the bed twice nightly.

We were using pads supplied by NHS but as you say, what was needed was PANTS which they refused to supply. I sourced some privately and have found the best prices seem to be from AgeUK or the Incontinence Shop. Sometimes large stores have a special deal and you can get them fractionally cheaper but you have to keep watching out for offers like that and who has time? They do them specifically for males or females so the fit is better.

We use pads as well as the pants sometimes and it can still be an issue.

This morning he had a bout of double incontinence and as I had slept in the spare room last night in order to get a full night - I wasn’t aware until I got back from the dog walk. Apparently he knew of the problem a ‘couple’ of hours earlier but didn’t call me!!!

He managed to shower on his own but simply dumped his dirties and the towel he’d used to try to clean up into the wash box in the bedroom - so the smell was pretty atrocious.

We have, for years, used Dettol Laundry Cleanser in our wash. This started when we had a medical practice and migrated to using it at home. Now it is in EVERY wash and I have found it’s far cheaper to buy a supermarket own brand (Tesco version works just as well) or Astonish now do one as well. It’s about half the price and works at low temperatures so you don’t need to boil wash everything. I have yet to find a smell it does not remove on a low temp cycle.

Alternatively you can try using Milton which is used for Nappies (or Napisan) but you may have to soak things in that for a short while first.

For general odours I tend to use Febreze - on duvet, sheets, pillows, carpets… Also good for use on carpets is shake and vac or similar.

That’s probably a lot to take in but I hope it helps.

so sorry to hear your story. I think you need to get extra help. This should not be all down to you. Have a word with your Gp or a Nurse. Join carers share & learn groups & care4acuppa! All very good. Best wishes Amanda h

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