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Dementia and Alzheimer's

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Original poster

Can I please have a small moan (everyone's welcome to join me!)

32 replies

user1465335180 · 05/09/2017 19:47

My partner and I live with my 90 year old Mother who has mixed dementia. We had to move in as I'd previously visited 4 days a week but found I had cancer and wouldn't have been able to do this until my treatment finished. I was very lucky and I have the all clear now. My DP is very good and helps a LOT but it's still hard living with Mum and working full time.

We have carers 3 times a day who do her personal care and give her her meals but this seems to have given Mum delusions of grandeur- she spends a lot of time telling us what needs doing in the house and garden- shopping, washing, cleaning, mowing the lawn and hates the word NO.

Is it unreasonable that I get fed up?

OP posts:
endofthelinefinally · 05/09/2017 19:53

One of the very few things about caring for someone with dementia is that you can smile and say yes if course I will do X,Y,Z it is all in hand.
In reality it is a thankless task.
However, IME dealing with SS, NHS and care homes is far, far worse.

endofthelinefinally · 05/09/2017 19:55

Sorry - very few GOOD things.

PeralMePots · 06/09/2017 08:08

It is relentless though isn't it. We know they can't help the constant repeating and the demands. Even so it sucks the very life out of you.

My very demanding step-father began every sentence with "what I need you to do is". Never a please or a thank you and always to be done in this timescale. I think you are both heroes for actually living with her. .

Yes you most definitely are allowed to moan.

Original poster
user1465335180 · 06/09/2017 23:07

Thank you for your replies. End I know the SS are not easy- our previous SS contact went on and on about Mum going into a home but then said they wouldn't cover anything financially after the first 12 weeks as I didn't have LPA and it would take too long to sell the house and pay them back- she said if Mum went into a home I'd have to find one willing to take her "on credit" until the house was sold- you can imagine the level of care she would have received! As soon as I said we'd move in she never called me again and took no further interest.
Peral- I'm absolutely not a hero or some saint who doesn't complain but thank you

OP posts:
ChristmasLightLover · 07/09/2017 19:48
  1. Moan away. In lots of detail. I was not best fussed to find myself changing my dads pull ups today with my head literally under his nuts thinking "PLEASE do not pee on my head". I am laughing at it now but at the time I was unimpressed with all that his frontal lobe dementia is bringing us.
  1. SS are doing our head in already. We love LLAMS - Later Life Adult Memory Services. They are incredible. So good with us and Dad. I know they are stretched but still, they are just so not helpful.
  1. We couldn't have Dad living with us. He is already starting to spit food from his mouth mid eating - a common development - forgetting how to chew - and our boys just could not cope with that. I can't, and our boys are only 9 and 10.
  1. I can't think of what I was going to contribute here. Does anyone else worry they are turning into their parents when they forget things now????
Original poster
user1465335180 · 07/09/2017 20:20

Christmas you are a braver woman than me- I can't bring myself to do "personal care" for Mum- pants changes are NOT my area. Although it's hard to admit it I've never had a great relationship with Mum, my Dad wasn't a great father but we were great friends, we laughed at the same things and Mum always resented that. Now Dad's passed away and Mum needs me but I just can't pretend we're close. I do all the things to make her comfortable and safe but so much of her is gone and she's not like my Mum anymore. Sometimes I find myself looking at her and wondering who the Hell she is

OP posts:
ChristmasLightLover · 10/09/2017 13:01

I hear you User. I've started some other threads in Elderly Parents re money as now my Mum is going to have to move near us and we're in an expensive area - so she's naffed off that her lovely house Up North is worth 170 and her only option here is a 135 retirement flat. It's making everything even worse - I am looking at my Mum wondering if a) she's always been this unable to cope and I've not seen it b) she's just finding it harder as it's all going to shit or c) If I have had rose tinted glasses on for my life. Because she's not who I thought she was - and she's not the one with the dementia. I've always been a Daddy's girl. Always. She gets on better with my Husband than me most of the time.

How's the weekend been? Do you live near her? How is she doing?

ChristmasLightLover · 10/09/2017 13:03

Sorry User!! Forgot it was you who live with her. You are an absolute saint. Sincerely. I have done a week with my Dad and it's been too much. Keep sharing.

Original poster
user1465335180 · 13/09/2017 22:37

Thank you for your responses lovely people. I think it's hard to cope with the fact that dementia takes so much of a person away- Mum's happy to chat but it's all about the weather, doesn't the lawn need cutting etc- nothing of any consequence. Three days ago it was 10 years since my Brother passed away and she didn't have a clue. I don't mention anything emotional to her because she just doesn't react in a normal fashion, it's like living with a toddler, everything is about this second and her. All her carers tell me how lovely she is, such a sweetie but they don't see the other side of her, she's as good as gold for them!

OP posts:
ChristmasLightLover · 14/09/2017 23:44

User - my mum and dad are coming for the weekend tomorrow. Mum is viewing a retirement flat we've found for her with DH. Dad will be with me. Because of just what you wrote - my Dad being much better behaved for the carers, I've got a friend who manages teams of them nearby to keep a uniform to hand. If he messes about with his medication she'll come and 'dispense' it for me - I'll put it out and she'll help him with it and getting changed for bed. She said she'd have it done in 10 mins and me in an hour. I can see her point ;)

I don't know what the topic of conversation will be this weekend. It will be entirely repetitive so I hope to steer it to something the boys can join in with.

I'm so sorry about the anniversary of your Brother's passing. That must have been a very difficult day on so many levels. Thinking of you and hope you have a good weekend, whatever the weather conversations.

notaflyingmonkey · 15/09/2017 20:24

User - my DM also forgot the anniversary of my brother passing recently. I usually let her just talk about whatever she wants, but when she talks about him it is either to criticise him, or to make out he is sainted. Both of which upset me and leave me speechless as I am at a loss to know how to respond.

Original poster
user1465335180 · 16/09/2017 16:37

It's so sad isn't it? My DB was her favourite and for her to have forgotten just seems so wrong. If I mention anyone else who's passed on she just looks at me blankly.I can hear her upstairs talking to herself right now

OP posts:
13bastards · 16/09/2017 18:13

Moan away. You are a hero for living with her in my books

Original poster
user1465335180 · 17/09/2017 13:47

Bless you all for encouraging me to moan! Mum's house was a state so since my DF passed I've been getting everything repaired, replaced and updated and at least now the house is a nicer place to live. My only real worry is that if her dementia gets a lot worse we might have no choice but to put her in a home and we'd have to leave too. We didn't own our previous house but the rent was very modest so we'd find it hard to start again especially since I''m getting pretty close to retirement age.

OP posts:
endofthelinefinally · 17/09/2017 17:42

Oh dear.
Is the house in her name OP?
You should probably be getting legal advice sooner rather than later.
Do you have anywhere to live if she has to go into a home?

shouldwestayorshouldwego · 17/09/2017 18:00

If you are over 60 then they might not count her house in the calculation of assets especially as you had to give up your home to look after her. I would investigate the legal position.

Original poster
user1465335180 · 19/09/2017 18:48

Thanks to you both. I'm not quite 60 yet but it's rushing up on me much sooner than I'd like! You're both right, I should look at this from a proper legal prospective rather than sit around and worry I'll speak to the family solicitor and see where I stand.

Hope you're coping and thanks for listening. I'll let you know how I get on incase it's useful for someone else

OP posts:
Mightybanhammer · 19/09/2017 19:01

Please be careful. I have known several marriages çrack under these circumstances. I presume Mum has no savings to fund care? Is there a property to sell or rent out? Not sure if you have actually moved into her home or she into yours.

Honestly, I would look at some way of funding a care home if you possibly can. They are not all awful by any means.

Mightybanhammer · 19/09/2017 19:03

sorry OP just read your updates. Legal advice immediately. As a pp said, the house may not be wholly taken into account as you have given up yours.

Original poster
user1465335180 · 20/09/2017 15:13

I've got an appointment with solicitor week this Friday so I'll get a chance to discuss my options ( if I have any).

OP posts:
magussisters · 20/09/2017 15:23

Hi OP, YANBU to moan!

If she does move into a care home - under the Care Act, if someone over 60 is going to remain living in the property, it should be disregarded in the financial assessment by social services.

Original poster
user1465335180 · 23/09/2017 12:19

Thanks Magu, I hope you're right. Thought it was worth a few quid to run it by a solicitor and make sure- they keep changing the rules and I want to make sure I've got a caste iron case.

OP posts:
Original poster
user1465335180 · 30/09/2017 18:00

Hello again, just wanted to say that the visit to the solicitor went well. Once I reach 60 they can't take the house into account in terms of care funding so that's a blessing. He was quite shocked by the SS not funding a home previously and didn't charge for the time I was with him so all's good x

OP posts:
NewspaperTaxis · 12/10/2017 17:39

A moan is okay, moan away. I am afraid I'm only chipping in to second what people have to say about social services. Here's a tip: we've been in six or seven care homes and at none of them do you have any contact details for your local Safeguarding team/SS. Why? Do you really want to know?

It's because they're a resource for the care home, not you. If you start raising concerns about your parent's care in a home, concerns repeatedly ignored, the home contacts the Council ie SS and get them to do a number on you. Care homes are in cahoots with the council. That's how it works. SS turn a blind eye to wrongdoing in care homes, and want plausible deniability should anything go wrong.

SS also have virtually no web presence. Google their names - they don't exist. They are ghosts in the machine.

Regards the OP's post, yes, it is on site all the time so it may seem never ending. I guess there has to be a cut off point, and maybe this is her way of feeling on top of things, to boss people around. That said, having her at home is your way of feeling in control, as opposed to the care home situation.

Original poster
user1465335180 · 12/10/2017 19:39

Interesting post Newspaper and yes, I do feel more in control this way, something which hadn't occurred to me. You've obviously had a few run ins with SS yourself and I'm not a fan of them but I think they too are restricted by the laws- the Government doesn't want too big a care budget and the SS have to be the hatchet man.
Reading what you say about the care homes and the SS is a bit disturbing- force everyone to put their elderly in a home and then the home can do as they like-not a pretty thought. I think you've done me a massive favour here, I'm getting a second wind as I type this and if necessary I'll be doing battle to make sure Mum stays right where she should be- right here with her family. Thank you

OP posts: