Hand hold/advice please - mother with dementia

[Arkengarthdale]

Hi all
My mother has Alzheimer's and really cannot cope with living on her own, but refuses point blank to even consider a care home. She gets aggressive, shouty and very upset whenever it is mentioned. She is currently undergoing a care needs assessment with social care who are going in four times a day to see if she is ok and remind her to take her medication but she resents the intrusion and feels she does not need it.

She has recently been moved back to a familiar area at her request (demanded all day every day for eight months) from living near family as she did not settle in the new place. However, she phones me and my siblings 30-40 times a day saying she is isolated and never sees anyone. I live 150 miles away and am currently studying from home following a long period of depression which renders me unable to work. I simply cannot cope with the level of demand from her. My sister cared for her for a year but has herself been signed off sick with stress now that mum has moved away. We have another sibling who does not help and will not be in touch to discuss mum's care, but we all three have equal power of attorney.

How do I cope with the level of demand from mum? She has moved back into familiar environment where she has loads of friends and already after 10 days all her friends are finding her demands excessive. She was taken out for lunch the other day and by the time the friend had got home after dropping mum off, mum had phoned said friend seven times within ten minutes saying she was isolated and never saw anyone and could she (mum) come round.

I am at my wits' end and am supposed to be visiting tomorrow to meet some more professionals to provide more help (but a six-hour return drive and no studying) but simply cannot face it.

At what point can you say enough is enough and insist that she moves into residential care? I can't look after her as I struggle to cope with looking after myself. My sister can't look after her as she has a full-time job and is a single parent and lives in a hamlet with no shop, bus, GP etc.

Sorry, long and boring but just do not know what on earth to do.

Thanks if you got this far, don't know which way to turn.

What a horrible dilemma for you all to deal with. My DF had dementia but my sister and I were lucky as he was happy to do what ever we suggested as well as going into a home when if was obvious he could not be on his own. Have you tried speaking to your local alzheimers support group? You should be able to find people to speak to there who have experience of what you are going through. I have always thought that once someone needs 24/7 care then going into a care home is the only answer and I just hope that if I ever get dementia then I will remember what I have told my children and not make it more difficult for them. My thoughts are with you and your family.

No need to apologise, this is a terrible, but, all too common situation.

My experience is that the LA cannot force her into care until she is a danger to herself or to others. The constant phone calls is also a common feature of this disease and the only answer is a separate phone for yourself and to not answer the other one. You probably know already that answering the phone does not solve anything.

Again, from personal experience, the LA usually step in once a crisis happens. An accident, a fall or getting lost. I am sorry that I dont have any practical advice to give you, I know how awful it is just waiting for the crisis to be reached.

Thank you bilbodog and florentina. It's nice to be told people understand! The 'waiting for the crisis' thing is very real. Mum's friends are insisting I get meals on wheels to go in as mum won't/can't cook for herself but the point is that if I do everything for her, no other care will be provided and people will be unaware of the true extent of her difficulties. And I can't do everthing, because I live so far away. Just because I am too ill to work does not mean that I am free to be an unpaid carer for my poor mum.

I am thinking of getting call barring on her phone, because, as you say, florentina, answering the phone does not solve anything. Her phone bill is absolutely massive because she phones our mobile phones all the time (£100+ per month) but none of us get any benefit, neither her nor the people she is calling.

Thanks

I am always available via pm, if you need to vent or unload. I have been through 4 years of this and can feel you pain.

My sister dealt with my father day to day as she lived closer than me. When dad started going round to her house at 8pm because he thought it was 8 am they soon stopped trying to explain it to him as he couldn't understand and got upset - so would just give him a cup of tea and said they weren't going out that morning and eventually he was happy going home again. He then started going round in the middle of the night which I s when we realised he needed to be somewhere safer. In terms of speaking to people with dementia I think you need to treat them a little like children with their active imaginations and agree and empathise with whatever they are saying because trying to correct them gets you nowhere and they forget quite quickly anyway. All you can do is treat them the best way you can, help as much as you can and see what happens. In terms of meals on wheels I think your mother would be left to heat up her own food which she may not be capable of doing and I have heard of people getting upset and angry and refusing delivery of the meals so it might not help as much as others think. Hang on in there.

Thank you again both, very much appreciated

Lots of good advice here already. My Dad has AD so I understand the situation well. It sounds like your mother is at the very difficult agitated stage where she is retaining enough memory of the way things should be, but can t function normally and so the discrepancy between the 2 causes agitation, which she tries to cope with by contact with others. I remember that phase well, Dad would suddenly turn up unannounced at my home (3 hours travel away) just as I was about to go to work, ring me 20 times a day (I have his BT bills to prove it) board trains nearly compulsively and increasingly get lost. After yet another crisis my brother and i tried to settle him in a home and he all but punched his way out of there. I was at my wits end, and probably clinically depressed. The only solution we found was to get all day carers in. My bro lives with him but couldn 't cope with full time caring.
In my experience at this point you need to protect yourself. Communicate in non confrontational ways, use white lies if necessary. Meet the professionals if possible and leave them in no doubt as to where your limits are. Sadly it's true it takes a crisis for services to step in, and sadly dementia itself seems to bring the crisis along sooner or later. Then eventually this awful agitated phase passes.

Thank you whataboutbob. That sounds so familiar! She did keep trying to get on trains to go 'home' so we've now moved her 'home'. She's just round the corner from where she lived previously and can find her way about quite well, but can't find her way home. Social care are doing everything they say they're going to do, I'm really impressed so far

That's good, get as many people involved as possible,my experience has been over time you will find out which are more helpful/effective, the others will fall by the wayside.
Dad had an OT from the dementia team as his key worker, he was the most helpful of all.

Coming too this late but sending you hugs.

I think you are absolutely right not doing more and more " covering up for her". The crisis will happen. Sooner or later. Meantime look after your own needs too

Have you tried suggesting to her that she goes into a home for a couple of weeks respite? My F refused help but after a minor fall he went into a home to be looked after temporarily and ended up staying because he found that he liked being looked after.