Difficulties coping with my mum's dementia

[Kikki21]

Hi everyone
This is my first post in here & I hope I can find some support.
My mum is 87 & has dementia. It has come on very rapidly & causes issues with her short term memory.
She seemed her usual self last Summer & then around September, my husband & I noticed changes & decided that we needed to make enquiries to social services for care support.
We are both self employed, we work from home so we can be flexible but no one can do what we do so any time out sorting issues out for my mum well we can't get that back. We also live about 25 minutes drive away from her.
I made the care referral in October, chased progress in December & finally got care support to start in February. We were getting quite desperate in January as my mum was struggling to feed herself & to wash. We managed to get care for 14.5 hrs a week.
At the moment, she has been getting by on 8 hrs a wee as the agency who social services use are clearing struggling to recruit staff.
It has made our lives easier but now my mum is totally adamant that the care worker has been stealing from her.
We aren't talking things of any value, butter, meat, other food items are apparently being taken!
My mum has also accused a relative of stealing from her regularly again small, insignificant items but you try telling her that she may have misplaced items & my mum will tell you that she isn't a liar & they have been stolen!
She's been vocal about it too, so much so that the relative's husband rang up extremely angry that his wife was being accused. I had to calm him down.
It seems my mum's actions have scared most people away from visiting her. Then there are times when she's saying she doesn't want the care support but she clearly wouldn't manage without their help.
She rang up today just past 9am very upset as she claimed she felt weak as she hadn't eaten last night, this was untrue as the care coordinator herself told me she had helped her warm her food up! She was asking us to call round today. And getting very irate when I said I couldn't.
My husband ended up calling round as he was headed up towards her area of town & all seemed well.
We try & see her twice a week & we also do her food shopping for her. She's constantly saying that we don't have any time for her & as for the fact that we are going on holiday soon, well we are totally awful people to leave her alone.
I have to admit that my stress levels are going through the roof with it all. I'm suffering from insomnia, I don't seem to have time to do anything as there are meetings to attend left, right & centre. When she rings up in the morning & has a go at me all the time, I find it hard to focus on my business.
It all seems to be having a knock on effect on my relationship with my husband as then we are constantly playing catch up & have no work life balance ourselves.
How do you cope with it all? What services can we call on? Any advice appreciated!

 

[Kevinl]

Hi Kikki, welcome to TP
That's a big load to share but, fortunately there's a lot of shoulders on here to spread the load on any you're more than welcome to share it.
It sounds like you're one of the many who didn't find this site earlier and has been fighting the battle alone without too much help and no one to ask other than waiting for appointments with everyone.
You've described your situation quite clearly so my question would be, what do you think is for the best?
I can see in the way you've posted that you're stressed by the situation and there's every reason you should be, so I'd just say sit down and think through the options.
None of us knows what the future holds, so I think you should consider everything and dismiss nothing as a possibility.
My first option (money permitting) would be to see if you could get her to stay in an "hotel" (not a respite care home, if you know what I mean) for the duration of your holiday and tell her she's going on holiday too, see what happens, she might enjoy it and at least you know she'd be safe, If she's accepting care at home at the moment it might be an easier move than you think.
K

 

[Cat27]

Welcome to TP

I think Kevin's idea of the ''hotel'' is a good one.

 

[RedLou]

To start with is there any reason to take her calls in the morning? --If the carers are coming in she is safe, merely ranting - or the dementia is ranting - so it would help you if you can distance it. Get caller display if you haven't got it. Let it go to ansaphone. Don't visit when she insists you do - the dementia is manipulative. Do something nice for yourself every day.

I speak as a self-employed person whose career crumbled thanks to the demands of dementia.

 

[Pear trees]

Unfortunately the accusation of stealing is very common, my mum has accused us all of stealing money and food. She also accuses her of leaving her to starve even with a house full of food, and straight after eating a big dinner. Saying no one visits and phoning regularly are also common. There are many threads on TP about phone calls all day with helpful suggestions.

Could you look at daycare or lunch clubs in your area, and contact Alzheimers to arrange a befriender?
Maybe DVD's, music, simple puzzles to keep her occupied. My mum still loves counting pennies into bags endlessly!
I agree that a 'hotel' over your holiday is good idea, tell her its a treat for her, some pampering etc.

 

[canary]

I remember this stage It seemed to come on so quickly with mum too, although looking back I think there were signs that she had had dementia for a while beforehand, but I didnt connect it till after the dementia was diagnosed.

I think everyone has already said everything that I wanted to ie these are really common symptoms. You dont have to answer the phone (seems horrible, but when it happened 30 times in an hour I turned the phone to silent), try day care and/or a befriending service and a "hotel" while you are on holiday.

Eventually mum started wandering and after a TIA went into a care home where she has thrived and made friends.

 

[Kikki21]

Thank you for all your replies.
We do have caller display at home since we moved house so yes we do employ that tactic at times - she tends to keep on ringing which is incredibly annoying & then she'll start ringing our mobiles. My husband usually cracks first.

I don't know if I can arrange for her to go into a "hotel" at such short notice, we go away in 2 weeks time?!

I don't think she would be very happy about that to be honest. I think as long as she gets the care twice a day Monday to Friday then that will be ok. It's the weekend where she really could do with additional help. Again she is meant to be having an hour & a half of care on a Saturday but this hasn't started as yet

I am chasing the agency about it yet again & the social worker.

She does have a befriender from Age UK who comes & sees her every week but this is only once a week but at least my mum likes her.

Her care package does include a day care visit once a week but there is no way on earth that I can persuade her to go. Not even to try it as she won't.

My mum was brought up in Poland & even though she has lived in the UK for more time than she lived in Poland, she still considers herself Polish & has basically refused to integrate into being British. She can speak & write English but she doesn't really want to integrate & at 87 years of age, then I don't think she will try!

We have now had 5 phone calls from her today. She is near enough hysterical about having plenty of food. She has a freezer full of bread for a start!
We now have to check everything when we are round to ensure that it's not piling up, rotting in her fridge etc.

She's had her early evening care call today but the last phone call we had from my mum just now was her saying that she didn't like the woman, she couldn't tell me why but she didn't like her sorting things out in the kitchen.
The carer going in now is meant to be experienced but doing these calls on a temporary basis while the agency find someone else ( 2 people have already not started)

 

[kitty808]

Hi love...everything you've wrote is everything I've just been through with my mum and nana who lived together.
Unfortunately I've been off work with anxiety and depression with it all.
I found that disagreeing or rationalising with the person doesn't work as it make them distressed. So you either deflect or distract to something else or agree. And keep answers simple not alot of explaining as unfortunately they won't remember.
I'm an only child with no dad so I've struggled on my own and it's hard, hard for anyone.
My mummy has gone into 24 hour care she loves it. ( she hated it at first and me lol ) and its lovely to know she's being cared for. My nanas gone into a nursing home. Its really awful that it will never be the same again. But I can live and sleep a little better too.
Think of their mind as like fairy lights...it was once all twinkly full of memories. And slowly one by one over time those twinkly lights fades and goes out and no matter how we would love it to come back it doesn't
My mummy knows who I am but not my name or any of our past life together....
Xx

 

[Kikki21]

Aww Kitty808 that is lovely & sad at the same time but at least you are getting respite from it!
All we get asked is when are you coming round? Even before we have left, we get asked when are you coming round.
My husband had to call round again today to deliver bread, cheese & ham because she was insisting that she didn't have any.
My mum is now ringing up several times a day, usually when I'm right in the middle of something or other!
This will be our first real test of how she copes without us for a period of time - 12 days.