The Ice is getting thin

[HarryC]

Yet another post from me as this is such a great platform for corresponding with people who can see my point of view.

As I have said before Mum lives in her custom built three room annex on the back of my house, with my wife cooking, cleaning and doing her washing with 45 minutes paid carers six days per week (self funded). Mum is truly horrible to my wife who now just goes in to the annex to collect the washing or take in/collect mums meals trying to avoid contact as it always ends in a row or mums sarcasm. Cleaning of the annex is done when mum is at her day centre (three days a week)

Yesterday (Mothers Day) my brother called her for the first time this month and we overheard her telling my brother that I have "changed so much, he's really horrible, that wife of his has poisoned him towards me" If it wasn't for me and my wife mum would be in a care home, we didn't ask for this and certainly expected more help from brother and co.

Mum is pretty much incontinent and has pull ups changed twice a day, if she gets up in the night she removes the pull ups, goes to the loo and must urinate horizontally as the loo and floor are soaked. She has taken to leaving the pull ups off and hiding them, me, my wife, the carers have all told her to keep them on until she gets clean ones in the morning all to no avail. The smell of urine in the bathroom and bedroom/ bedding, permeates into the main house, it is awful. It is a permanent round of cleaning and bleaching, which if she would keep the pull ups on would not be such an issue. Yesterday my wife went in and got mum her change of pull ups and nightie, when she went back in to collect the clothes for washing, mum had put her blouse down the toilet (with urine in the toilet)

Mum is going in for a week's respite (self funded) next week just to give us a break, from the reaction of other family members you would think we are evil people for doing this. If my mum thinks my wife and I are so bad then maybe the time has come for a permanent care home? That isn't my mum, it is someone that looks like my mum but when she sees other members of the family (although rare) you wouldn't think there is much wrong with her, and they all treat her like a frail old lady which she relishes, but that isn't the real world.

 

[Grannie G]

There does come a time when enough is enough even with the best will in the world. It`s even worse when your hard work, not only isn`t recognised but is criticised.

We are told not to take it personally but you`d need to be a saint not to be affected.

 

[AlsoConfused]

I agree. You're trying so hard and at such a cost to yourselves but I can't see how all that effort "pays" for anyone.

You can't keep your Mum clean or happy. She's horrible to you and your saintly wife (I wouldn't and couldn't cope with the aggro she's getting). You're perpetually running round trying to stop your Mum's living accommodation becoming insanitary.

I'd say it's now time for a permanent placement in a good home.

If you can, though, first get your brother and the rest of the family to take over your Mum's care while you "attend to a crisis" (whatever it might be). Once he's experienced what it's like to cope with Mum on a day to day business I doubt whether he'll oppose the move to residential care!

 

[Oh Knickers]

Oh, Bless you and your wife,

This sounds challenging on so many levels. If your mum was pleasant the stink of urine would be bad enough. But to have the very personally targeted comments, nasty phone comments, as well as everything else feels totally compassion anhiliating. As for those who are commenting, allow them to share in your life with mum whilst you go away - somewhere - anywhere!

There are a few things to consider.

Is it worth, should you be considering having mum back after your well-earned respite break, removing all carpets and putting vinyl down so it easy to swab down and disinfect?

Maybe it is time for you and your wife to have a real think about is it worth harbouring this malignant presence in your home? Quality of life counts for so much.

I am assuming you are getting Attendance Allowance. If not get that in place ASAP. It is a flag for care should Social Services need to be involved.

It sounds as though the situation with your mum is rapidly accelerating and time for outside help and maybe a move to more suitable accommodation. Frankly, it sounds like a living hell for your and your poor wife.

Thing is, with some people with dementia it can emphasise those traits that have always been there as the social veneers melt away. You are then left with the stark relief of the person - which is not always pleasant - with an added dollop of Dementia nasties thrown in.

You sound as though you are at your wit's end.
Take care.

 

[HarryC]

It is so good to hear other peoples views yes we are close to breaking point, Mum has been with us over eighteen months, eight months in the annex (funded by her) and ten months living in our front room with a chemical toilet and my wife helping mum use the upstairs bath.
My step daughter mucks in when needed, I also have a severely autistic son who lives in supported accommodation whose life, finances and care we have to organise and oversee. Nobody outside our immediate household knows the complexities of that, which we do happily and the love he shows for us is so rewarding.
My wife's parents both died as a result of Dementia and Alzeimers so she is experienced but she has never witnessed the hatred and ungratefulness of my mum's behavior.
It isn't my mum, it is just a double person who looks like mum but where our household is concerned behaves like a selfish spoiled brat.

 

[Slugsta]

Hi Harry,

I really sympathise with your situation and, even more so, with your wife

It is not uncommon for the PWD (person with dementia) to become rude and antagonistic towards the person who gives the most care - but that doesn't make the nastiness any easier for your poor wife to tolerate.

If you want to see other examples of this, the 'Bizarre' thread on this forum gives very eloquent examples.

It does sound as if the time is fast approaching, if not already arrived, for your mum to go into residential care. Then you and your wife can go back to being visiting family rather than carers and, hopefully, your mum will find someone else on whom to vent her spleen!

 

[LadyA]

Harry, some years ago a friend of mine and her husband used to care for her mum, who, with her dementia appeared to be sweetness and light to most people, but was a vindictive spiteful witch with them! My friend was at breaking point- but the rest of the family, all living at a distance, couldn't be convinced there was anything wrong with their mum at all! Until the time came when my friend persuaded her mum to go and visit her other daughter, and stay with her for three weeks! After two days, my friend got a phone call from a stressed sounding sister: "How long has mum been like this?! What are we going to do? Nothing pleases her!"

Maybe you and your wife will have to get something that you wouldn't want to pass on to your mum - Noro Virus, or the flu, say - and tell your brother he's got it for a week. And stick to it!

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