Dementia..any coping strategies gratefully received.

[Springsnake]

It’s the same conversation every day ,I’m never there less than 2 hours ,some days 4 hours she Cry’s when I leave and says she wants to live in my house .
for the last 20 years she hasn’t been the slightest bit interested in me or her grandchildren seriously,no visiting ,not interested
,dh is getting mightily pissed off at being left at home with the kids every day for hours at a time,I’m struggling to keep smiling at every visit ,because her life has changed ,I understand she’s missing her old life ,she’s so confused I explain the situation,how she ended up in the care home ,time after time after time ,often more than once in the same visit.
I can feel my mental health slipping ,I feel like I’ve gone down the rabbit hole when I’m with her ,
I’ve 2 children with SN ,so life was already very challenging before she moved near me .

Re not knowing whether you’ve been or not, even before she was bad enough to need a care home, I once arrived at my mother’s just as my brother was getting in his car to leave.

Just to check, I asked her whether she’d seen him lately. (He lived closer and visited more often.).
‘No, not for weeks, he never comes near.’

And I know she honestly believed it.

Might add that although she wasn’t contented at the (lovely) care home for quite a while, she hadn’t been happy at home, either - so often anxious or fretting about things she couldn’t even name, or else about things that were entirely out of her own head - e.g. neighbours had stolen something.

It’s a horrible disease, and unless someone is one of the few who seem happy in that condition - there was an old lady at the CH who happily told me just about every time I went that her mum and dad and gran and granddad were coming soon and they were all going to the seaside together - you have to accept that you’re never going to be able to make everything right for them again.

Because whatever/how much you do, it’s so unlikely that it’s ever going to be enough.

No ,no one has explained anything to me ,it’s a complicated situation,we have not been in each other’s lives for 20 years ,then this happened,and I had to take over .she lived at one end of the country ,me at the other .she was in hospital for weeks while I tried to sort out what to do from the opposite end of the country,it’s been very stressful

I do agree I can’t keep doing hours every day in the rest home ,I’ve not even seen her care plan ,so I don’t know how they are dealing with her distress and wandering ..
She’s not got a doctor dentist or options yet ,the home say it’s £20 an hour to accompany her to appointments,there so much to pay for

The other thing to consider is depression. I am a mental health nurse, lots of people with dementia have undiagnosed depression and their distress is greatly improved by antidepressants. As it's not always easy to diagnose in dementia we often give a trial of 6 weeks of antidepressants to see if it changes someone's mood. Speak to the GP or her memory team.

The care home should be registering her with a local GP immediately. I would also ask for a referral to the local memory team .

The care home told me I had to do it ,and I had to take her to appointments,I’m dreading it ,as I had her in my car for a short while and she was pulling at the seatbelt get distressed .
I will ask for a meeting with her care team ,and go armed with a list of questions that all of you on this thread have helped see I need to ask

Do you have the Older Adult Community Mental Health Team involved? Your mum is suffering from anxiety and depression on top of dementia and the CMHT can do a lot to improve her quality of life. For example, they could send in an occupational therapist to advise the staff of much more appropriate ways of supporting her when distressed, how to keep her feeling busy and engaged in activities etc and also give you advise on how to cope. I don't mean to be critical at all, but it sounds like you are trying to use the wrong strategies because it's all you know when there are lots of approaches that might work better.

Please don't start reducing your visits without doing the intervention above or nothing will improve, she will still suffer unnecessarily as the staff clearly need more training and she needs help.

You don't need a memory team, all we do is diagnose dementia. It's the CMHT you need.

I am assuming the care home she is in is registered for dementia care? It definitely sounds like she has high levels of anxiety/ depression which can be reduced with various interventions.

What memory teams do varies from area to area. In my area anything dementia related goes to the memory team, either to diagnosis or home treatment. Find out what the process is in your area.

I think it's also worth remembering that someone with dementia doesn't always mean exactly what they say. My mum talked endless about leaving her care home but eventually I realised it was just her way her saying she wanted to go back to her old life where she wasn't suffering from dementia.
Definitely agree short visits every 2-3 days work best for all. I found there is a stage within dementia when my mum became accepting and more contented.
Wandering is part of dementia and is part of the disorientation, my mum was always busy wandering around trying to wash her clothes, even when there was a regular laundry service.
Take care of yourself as it can be a long journey. Your mum would want you to put your family first.

I am concerned the care home are.telling you you need to take her to appointments. Doctors, dentists, opticians, orthodontist all.come into homes. I think you need to meet with the care home manager. Oh and cut down visits. We visited DGM daily which was unnecessary. Visit aunt 2 x weekly and homes been closed.for.norovirus so didn't see her for 3.weeks. She had no idea.

My mum has dementia and has been in a care home since October. I want to reassure you that I only visit once a week now. She doesn't remember my visits but I get the chance to check up on her. We have the same conversations every week. If she talks about going home I say "when you are stronger and the doctor says you can" She seems ok with that.

I don't get involved with appointments. District nurse, doctors, opticians and even a dentist do home visits. The care home should have taken care of registering her with the local GP and it is normal for 5hem to do hone visits to people in residential care. I think you should arrange a meeting with the manager to ensure this is all done. It's what your mum is paying for. Then try and step back and take care of yourself.

I have also noticed that her agitation has decreased over the last month. She has settled into a routine. She has major inertia and does very little now. She actually told me she is happy just watching tv, sleeping and "the lovely nurses come and have a chat with me and bring me food"

If you have been out of her life for years it sounds more complicated but also like you don’t need to be there so much to reassure her, as your presence isn’t her normal. In fact seeing you newly might be confusing. It’s worth bearing in mind too that care and NHS services will do anything to make you take responsibility because they are so overburdened. As far as I know, you are not legally responsible for her and you are entitled, however hard, to say No, I can’t do that.

There is no way you should be taking her to appointments, the care home should have a GP who does regular visits or visits the residents as needed. Some even have opticians etc who visit the residents. Is the home registered for dementia? Is she paying fully for her own care or is the local authority paying as well (this depends on a financial assessment) you need to ask for a meeting, ask to see her care plan (which should actually be visible and available)

We are paying £1200 a week for this care home
Every member of staff when I have been ,have been polite ,professional ,kind .im in at all times of the day ,they don’t see me coming and going ,I’m just about every day .never have I seen a cross word ,or anything
Yet mum tells me they are shouting at her ,being rough when washing her ,walking in and out of her room slamming around .shouting at her to get in to bed.
Today in front of me she told the care leader ,his staff were rude and horrible to her ,and they shout at her .
I was so embarrassed
Then when he went ,she told me it was the other elderly ladies that were shouting at her
So I said mum ,you’ve just had a real go at the care leader telling him his staff are awful and shouting ,now you are telling me it’s the other ladies .
She said ,oh well the staff are horrible too ,they shout all the time .
I said,I’m in every day ,I’ve never heard a cross word ,or a raised voice they are all kind and caring
She said no they shout all the time when your not here .
Then she started saying she wants to live with me ,and don’t leave me .it is exhausting

And everyone saying I don’t need to take her to the doctors are correct
The care home has enrolled her with a doctor and booked her in to be seen this week ..excellent service ,I have to wait a month for an appointment 😀

The care leader seems to have endless amounts of patience with her ,he can’t do enough to help ,he comes in with his note book and writes everything down ,I’m permanently apologetic on her behalf ,

The staff will be used to that though. It's all part of dementia. I'd try not to take it seriously and just tell her you will have a word with someone about it. I find that thinking it's the dementia talking and not the person helps me to deal with it.

A friend said this really helped her understand and cope with her close relative who had Alzheimers.

www.contenteddementiatrust.org/what-is-the-specal-method/

Then there were angry accusations that siblings and I had only put her there because we were after her money - a sick joke when you considered the care home fees! But she had absolutely no insight into her condition - as far as she was concerned there was nothing wrong with her - had no idea that she could no longer even make herself a cup of tea.

This ^ - describes my MIL to a T.

We've found that since MIL moved into a nursing home, the staff make a lot of decisions that DH used to have to make, which helps (a bit).

DH is an only child and MIL is a widow, so I know exactly how exhausting it can all be - there are still a lot of things to sort out!

OP I beg you to educate yourself on dementia so you can properly advocate for your mother with the mental health team. She is suffering more than she needs to be.

My heart goes out to you.

OP, re the accusations about staff, my mother went through a phase of telling me every time I went that ‘They kill people here!’

It was so difficult trying to reassure her - it was a lovely care home. She wandered a lot at night, and what I suspect is that on one such wandering she saw a newly deceased resident being taken away.

I dare say your mother has seen another resident kicking off or hitting out - it will happen in the best of care homes, if dementia is involved.

People with dementia often muddle up something they’ve seen on TV, or have dreamed, with real life. My mother was once convinced that she and her cleaning lady had taken my father’s dead body to a graveyard many miles away, and just dumped it. (!) It was a dream, muddled up with something on TV the night before. She was terribly distressed for 48 hours and nothing I or the cleaning lady said could convince her.

However, knowing what I learned later re dementia, I should have just said, yes, I knew, but it was all right, it had been seen to, he’d been properly buried now. (in fact he’d been cremated, but these things don’t matter a toss when you’re trying to avoid distress by going along with their reality.).

Another time she became convinced that a sister she’d never got on with very well, had ‘stolen’ their mother’s house. It went on for ages and a signed and sealed statement from the Lord Chancellor wouldn’t have convinced her - he’d only have been ‘in league with’ the aunt and me! So eventually I just started saying (over and over, she never remembered) ‘Dear me, that’s awful, I had no idea, I’ll get on to the police/a solicitor first thing tomorrow.’

In other words, please don’t ever worry about being economical with the truth, if it’s going to avoid distress or anxiety. Say whatever will keep her happy for the moment. In dementia-carers’ circles they’re called ‘love lies.’
Over the years I became amazingly adept at these!
All the best.