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Dementia and Alzheimer's

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Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

474 replies

CMOTDibbler · 02/01/2014 16:13

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

OP posts:
whataboutbob · 29/04/2014 14:10

Hi Everyone- so sorry to hear about the bag snatching Citrus, sometimes it feels as if life is throwing everything horrid at us in one go. Take it slowly, and ask for help whenever you can.
CMOT- hope your Dad is feeling better.
Crafty- it must suck having 2 siblings with those attitudes. Do you have a POA- maybe it's worth grasping that nettle. If one of the sisters has been trying to financially abuse your mother, then there must be a way of excluding her. You could speak to the citizen's advice bureau or the Office of the Public Guardian.
Visited Dad yesterday, took him to the local Age Uk's dementia day centre, I was hopeful he might get involved and be able to attend regularly. But unfortunately he was most restless and at the end had a verbal outburst against the lady who runs it. She basically said they had anxious ladies there and it wouldn't be fair on them. Then off to Boots to order some new specs for him as he's broken 2 pairs in the last week. When he realised they weren't just going to hand a new pair over, but were looking for his records, checking the computer etc etc, he sat there shouting "shit shit shit shit shit". Then home by bus (with him kicking off because the driver was waiting 10 min at the station),by then I was in a state of adrenaline soaked fear and apprehension. Pleading with him not to kick off makes no difference whatsoever, and staying calm (as I nearly always do) doesn't stop it either.
I have accepted that as soon as his home carers feel they can t cope, we will have to find a residential home for him. Likely to be one that takes people with challenging behaviour, i dread to think what such a place is like. It's sad, but I really feel i have done my best to support him this long.

WynkenBlynkenandNod · 29/04/2014 17:34

Oh Bob, I am sorry Sad You have done amazingly well to keep going this long. Do the Carers seem to still be coping ?

I'm off to look at new home on Friday, the Specialist Dememtia one in same Charitable Trust we've been looking at. They have space so if Brother and I both like it, she can move pretty quickly.

No solutions for FIL. What on earth do you do if they won't come back to UK? That's a lie actually - he's said he will come back if SIL looks after him but she is in no position to.

CMOTDibbler · 29/04/2014 18:19

Bob, challenging behavior units can be better than you might think tbh. The language would be rather more florid, and less small, hurlable objects, but well staffed normally.
It might be worth exploring what there is so that when it comes to it you have some places in mind.

Wynken, I hope you like the new home and that your brother behaves.

The carer says mum and dad aren't coping and that mum smells. Not sure what to do as I can't make dad buy in care or more cleaning.

OP posts:
whataboutbob · 29/04/2014 20:09

Thanks guys. Sorry to hear about FIL wynken. He obviously needs more help, at least in the UK the situation would. Be. More manageable . Having been responsible for my grandad who had PD, I knew I could. Not look after him, eventually he got so weak he could not stand up when he fell.
CMOT sorry to her bout your mum. It must be upsetting for someone to tell you she smells. I remember you mentioned dad does not likeeee spending money . Do they get home visits from HCPs eg DNs. Maybe if a professional mentioned it he might be more flexible?

WynkenBlynkenandNod · 29/04/2014 20:18

Thanks Bob. More of the fall story has emerged. It was outside a coffee shop on a raised up bit a couple of feet tall with no railings. He's really lucky not to have done serious damage. CMOT's comment has made me think back. A couple of places I looked at could cope with challenging behaviouspr from memory and actually weren't what you would think and the staff were lovely.

CMOT, I agree with Bob. If you can get a HCP to say it (our SW wasn't backwards in coming forwards about the house smelling it must be said) then he may just listen.

CMOTDibbler · 29/04/2014 20:27

No, they don't get visits from DNs etc, and as they are self funding no one can tell them to do anything which is frustrating. I guess mum isn't changing her clothes, and dad just isn't paying attention to making her.

OP posts:
WynkenBlynkenandNod · 29/04/2014 20:40

Really hard to know what to suggest. Any chance of a word with their GP and say the Carer has expressed concern and could they send someone round for an 'over 70's check' or something and as part of that talk about care arrangements ?

CMOTDibbler · 29/04/2014 20:45

Think the only solution is for me to have a Talk with dad about it. There just doesn't seem to be anyone in the community who does that sort of thing - their GP is less than helpful about care

OP posts:
whataboutbob · 29/04/2014 21:15

CMOT that doesn t sound right t me. DN s should not be dependent on means but on need- it s health care. If your mum ( or dad) have health needs and are struggling to meet them, then a DN should get involved. In many places you can also refer directly to SW but I understand that might not go down well with your dad.

CMOTDibbler · 29/04/2014 21:32

The DNs will only deal with very specific issues, and only the one the GP has asked them to deal with. No care involvement at all - when mum was discharged after back surgery and was totally disorientated and dad begged for help they wouldn't help, or even tell him who to contact.

They have been seen by SW, but again, they won't do anything, just tell them to get their own carer.

OP posts:
wyrd · 29/04/2014 21:59

Wynken-so sorry to hear about your mum and FIL sounds like the fall could have been much worse. I feel for you after so much heartache already.

Bob- how do you cope with that situation I would feel lost. I hope you can find a good place when the time comes. you have done so well.

CMOT-such a difficult situation it's so frustrating when no one will help all you can do is try.

You all strike me as strong people with a lot of knowledge who cope with everything that's thrown at you so take heart you are doing all you can.

whataboutbob · 30/04/2014 11:00

That just doesn't sound good cmot, and I'm not trying to be a pain and stating stuff you know already, you know the situation best. When people who clearly have independence issues are discharged from hospital, hospitals have a legal duty to make sure it is a safe discharge. re- enablement teams need to get involved if there are concerns about people being safe in the home environment. One of the wards I work on has a discharge nurse who will oversee all details and make sure a care package is finalised before the person goes home. But I know that's not available everywhere.

CMOTDibbler · 30/04/2014 11:08

I think in the past I was too trusting that dad and the staff were able to sort things. And now I know that dad is so desperate for her to be home that he just agrees to things, and that the staff don't look at them together. So now I speak to the staff, tell them that they need to speak to me before discharge, and I don't accept it unless theres a solid plan. But they will promise this and still try to discharge on a Friday afternoon with no care in place etc. The hospitals mum and dad go to don't seem to have any discharge co-ordination and the orthopaedic hospital was awful.

I'm just so tired of this rollercoaster of their health

OP posts:
whataboutbob · 30/04/2014 19:37

Yes it really is so draining. One day we won t have to do it anymore and it seems awful to say it but I am sure it ll be a relief.

WynkenBlynkenandNod · 01/05/2014 17:40

Yes agree. dH said exactly the same the other day.

Needmoresleep · 02/05/2014 09:29

Poor CMOT, and others. So many heartbreaking stories.

I have been more or less absent for a while, partly because things have been pretty stable. However though my mother's memory scores are holding up, I can see her slowly losing skills. Hopefully she can stay where she is (in very sheltered accommodation) for a while, but I have have made a mental note to spend a day or two in the summer looking at dementia care, so I am prepared when the next crisis comes. If only she would accept help from carers.

(I finally became exasperated by conversations where she would agree that it was important to wash, and then when I booked the extra care time, simply refuse, so ran the bath when I was down. She claims not to like showers, but then could not get out of the bath. Tip for anyone who finds them self in this position is to drain water, dry person and bath, and then stick the bathmat in the bath under the person...hey presto. Its a shower next time.)

The thing that is getting to me is the lack of appreciation and feedback. Having gone through a stage where she was genuinely happy, presumably relief that she was freed of the worry and loneliness that she had when on her own, she has now started complaining to me and just about everyone else, that she is bored. I can't solve this. Old age is ghastly. I can make her life comfortable but not interesting. Not if she did not nurture an interest in Grandchildren, gardening or other things years ago that she could have kept up now.

Part of the problem is that she is not really sure who I am. She managed to complain to the lady from the memory clinic that her children never visited, and I was in the room. I think I am simply this rather bossy person who shows up with admin stuff, or to take her for a medical appointment, and who "interferes". She also claims, to whoever might listen, that I am taking financial advantage. There was a lovely visit where she was pretty lucid and thanked me for being there, but since then it has been grim. Her worst characteristics, the ones that use to bug me as a child, have come to the fore, as she loses the ability to maintain social niceties or exhibit empathy. At the same time the Attorney requirement to manage her assets actively and well, is a real millstone. She (and I appreciate we are very lucky here) does not need to earn more, and I don't want my life dominated by the admin associated with managing her affairs.

We have bought a flat near her which should make things easier to both keep an eye on her care and on her rental properties, and save my back from the toll cause by 5 hour round trips. Part of the idea was that it would then enable me to visit her socially and to take her out, without the burden of tasks and chores and the need to rush back to London. Now I find that I don't really want to see her. Or maybe there is not enough of her left.

Sorry this is long. And very much first world problems compared with what others are facing. But draining all the same.

whataboutbob · 02/05/2014 18:43

NMS- it does sound really hard and not a first world problem. You have poured so much energy into ensuring your mother's safety and comfort, and gone into many battles. And yet it appears there is no affection coming from her, let alone recognition and gratitude. You probably get a better deal from your teenagers! Seriously though, caring for demented parents has got to be one of the toughest caring gigs. I cope by telling myself I have a responsibility and have to carry it out to the best of my abilities, and where i cannot care for my father and ensure his safety full time, i need to ensure there are others in place to do so. I think i have switched off that part of my heart that sees him as my dad. I suspect that's how people did it in the past when the old ones moved in- the adult kids knew it would be grim, but they had to do it because it was a responsibility to be faced up to.
Don't be hard on yourself if you want to cut down on the visits. I am in the process of trying to cut down to once a fortnight, and predictably i am getting slightly distressed calls from his carers. I'm going to try and ride it out.

WynkenBlynkenandNod · 04/05/2014 17:57

Hope you are all getting a break and enjoying the sunshine .

NMS that doesn't sound like a First World Problem and sounds hard. It is incredibly frustrating when they won't accept the Carers - self sabotage but they can't see it. It bloody sucks when it is claimed that you are taking financial advantage when you're working your backside off to try and make things work.

The lack of gratitude feels so unjust. We've temporarily turned a corner on that bit I know it will be back. We're in the situation where if there's good news my Brother suggests I ring as he knows what she's like with me. Bob saying she's switched off a part of her heart resonated with me. DH asked me the other day if I see her as my Mother and I had to really think about it before saying not really.

The hunt for somewhere different to move her continues. Friday I went to Bristol but to our great surprise, neither Brother or I liked that place at all. Remembered a place not too far from here that someone mentioned at one point and looked at that today and really liked it.

Two floors for 'assisted living' and then the top for advanced dementia. Felt like a hotel and a world apart from where she is . They have 'studios' of differing size so it wouldn't be too far removed from her current flat size . Near the Beach on a road so much more to see then where she is where the sight of trees and no people is getting to her as she is a 'curtain twitcher ' as Brother put it the other day.

I really liked it so next stage is for Brother to come down and look then show her. If everyone in agreement Brother has said he'll be down shortly again to move her. He's finally had some acknowledgement re Health LPA that went in start of Feb, will be done middle of June apparently. The other was a fair bit quicker.

FIL situation not resolved.

CitrusSun · 05/05/2014 21:09

Sorry I'm not doing much in the way of supporting others, am in a bit of a fog at the moment trying to adjust to caring for Dad with Alzheimers, every day is like groundhog day with the repetition, the constant questions because Dad can't retain any information in his memory, I don't know where to start asking for support and what that support would look like, he wouldn't want strangers coming in, he wouldn't be able to understand how much this is taking out of me and I don't know how to get a break. The house is so hot as he feels the cold badly and the TV is so loud. I walk to the local shops every now and then but am never really just able to be me for any length of time. Who cares for the carer? Buggered if I know. Thanks for being there, folks.

Needmoresleep · 05/05/2014 21:28

Poor Citrus.

Order "the Selfish Pig's Guide to Caring" by Hugh Marriott from Amazon now...really great at trying to sort out your emotions.

Then phone social services and ask them to send you every bit of information they have on options, eg day care centres, memory cafes, University of the third age etc that are out there. Ditto with the memory clinic if he comes under one. Local carers Assn, Alzheimers Assn, Library, GPs, church if he/you belongs etc.

You have taken on a huge load. I certainly could not do it. Ask for help early before it gets too much. Plan some me time. Is your dad getting Attendance Allowance, have you applied for carers allowance. Do so. Use the money to have someone be with him whilst you do an evening class, join the ramblers assn or whatever, plus a taxi account.

Look after yourself.

(Whilst on Amazon you might get Oliver James "Contented Dementia". I found it a flawed book. I am not as patient enough to follow the programme. However I did find a few useful ideas which helped me understand where my mother was coming from, and a few techniques to deal with them.)

CMOTDibbler · 05/05/2014 21:31

Citrus, a good place to start would be a Dementia Cafe where you and your dad can go together and you get to meet other carers and find out what is available locally. There might be day centres so you get a break, and at some you can get hair cuts, foot care, baths etc.
Mum has an AgeUK volunteer who comes every other week and takes her out to the garden centre - mum has no idea who she is, but seems to enjoy the change.
Could your dad afford a few hours of a private carer a week? I know it would be a stranger at first, but it would be good to have a bit of backup. The one my parents use is independant, and seems very flexible.

Went to see my parents today, and my brother was also there. He didn't engage with mum at all, or do anything of use. Mum very thin again, and doing a lot of funny movements with her hands and mouth. Ho hum.

OP posts:
WynkenBlynkenandNod · 06/05/2014 10:02

CItrus you are entitled to a Carer's assessment which is supposed to see what your needs are to be able to look after your Dad effectively. This is arranged through SS. This must be a huge adjustment for you and it is vital as the others say to look after yourself. I second the Selfish Pig book.

Glad your Brother turned up CMOT but shame he still hasn't managed to actually be useful. Will he agree to do anything at all if you ask ? (not that you should need to).

Needmoresleep · 06/05/2014 10:32

Also ask about respite breaks. If you were able to line something up, even for September it would give you something to look forward to and a chance for you to get away and re-find yourself and your perspective.

Options are:

  1. A relative living too far away to provide daily support but who might be willing to take over for a week or two to give you a break.
  2. Paying. The local delux care home would do this, and my mother would not know that she was not in a hotel. It costs an arm and a leg, but this is the time to spend money if there is money there.
  3. Negotiate something with SS as part of your carer's assessment. I don't know what might be available but you are saving them loads of money, so it should be in their interest to support you.

On the repeated questions, I finally wrote my mum a briefing note, which answered her key questions following her move to sheltered housing. The "why am I here", "can I afford it", "what has happened to my home" etc. All with answers designed to reassure her. Apparently she read it over and over again. I assume it was important to her to understand where she was and why. Now she is in a routine the number of questions has fallen considerably.

whataboutbob · 09/05/2014 15:02

Oh my God. It's so moving and good to remember that the person suffering has their own perspective, as we hard pressed daughters get overwhelmed by trying to cope with everything.