Responsibility for Elderly Parents? Support thread right here!

[Needmoresleep]

Several of us are on the same journey. Some more difficult than others, some longer than others, but none easy. Feel free to share tears, rants or laughter with others who will understand.

Been lurking for a while, & have just read through the last few months of messages.

Rainicorn – your posts really touched me, as they reminded me of my experiences with my Mum. She had terminal cancer and was moved from a hospital to a NH. Your MIL’s frequent demands & her insistence that she needed you rather than anyone else is so familiar to me. I found it incredibly hard that Mum was so demanding, always asking us to turn her rather than getting the nurses or health care assistants.

I now think the reason she did this was that she was frightened of what was happening to her, and wanted the reassurance that her family were there to help, not strangers, however well-meaning or well qualified they were. I really struggled to walk away at the end of a visit, with her calling out after me – I ended up in tears several times feeling such guilt that I was walking away, but I just couldn’t take it. And then I read the thing you said about using different voices & almost yelped out loud - Mum was an expert on that too…! You’ve had a really tough time lately and I just wanted to say hello, and I know how it feels.

Since my last post my FIL has died too . MIL has since been to visit us for a weekend, & seems just exhausted with grief, DH is doing a great job ringing her every few days to see how she’s doing.

My DF is back at their (I can’t bring myself to say ‘his’) house in France for a while. He is lonely, but has family visiting this month, but I’m wondering how he will cope after that. He’s physically OK, apart from a bad back and neck, not helped by a habit of falling out of bed in the middle of the night… but emotionally I’m not so sure. It's hard to know how to support him emotionally from such a distance. Am currently contenting myself with sending him newsy emails about the DCs and what they are up to. I'd like to go and see him sometime in the holidays, if I can, even if it's just for a few days.

Anyway, hello to everyone , and and s all round for everyone who's struggling with guilt, tiredness and everything else that this life chucks at you

Hello ping pong. Good to see you- sorry that things are still tough for you.

hello everyone and thanks for the virtual flowers and all the other things. Sorry to hear about everyone elses's struggles too. Old age is certainly no picnic for those going through it or those supporting it, as we all know.
Good luck for the memory clinic Tilly. Our experiences sound similar.
They often forget to eat and drink, sometimes because they are not hungry or thirsty. I think it's a mechanical problem with the release of leptin or something.
Someone from the alzheimer's society is coming to see her /me next week, and I have briefed her to tell mum she needs more help. they have given her drugs to delay the memory loss for a bit, but despite the tick charts i have put on her fridge, taking them might be a problem.
My mum's favourite line is 'I'll know when I need help'...... She also wants everyone to speak like 1940s British actors. When I pointed out that the Duchess of Devonshire might not be available for elderly people's care she got quite antsy, but oh boy she's judgmental about accents!
you have to laugh, really. A tough generation who survived wartime, but tough on their children too........
best wishes to you all and sleep tight (sorry I dont know how to do the emoticons)

Gorgeous, I didn't know there are drugs to delay memory loss. What are they and are they available to all dementia sufferers?

PingPong, it sounds like you have had a tough time, and very difficult when they are so far away

Tilly, there are three drugs licensed for use in Alzheimers (not other forms of dementia afaik) - unfortunatly they don't work for, or are tolerated by everyone, and the effect is variable.
My mum just couldn't tolerate any of them, but the memory clinic did try everything.

Hi Tilly,
Yes the drugs are available and in my mum's case they haven't done a brainscan so they can't in fact be totally sure it's alzh. Could be vascular dementia which I in fact suspect. her GP gave her donazepil, which gave her terrible nightmares, and now the psych has given her Rivastigmine. She has been taking it a few days with no side effects so far. It only delays things for a bit.

also, I have a 95 yr old father living abroad. What I recommend for that is a weekly phone call at the same time and day each week. It has worked for me for years (I visit once/twice per year), but the regularity is reassuring for them and stops them phoning randmly trying to catch you.

Thanks - very interesting. The GP thought probably vascular, but we need to wait for a full diagnosis. It's useful to know and could be a carrot to dangle in front of DM...

gorgeous, I agree. I have done that for years, however I now ring much more frequently!

The weekly call sounds like a great idea gorgeousone, I will try that. DF definitely perks up when I ring him, just as he perked up whenever I visited him here after mum died. Things have been tough, yes, but I do feel a bit as if I’m in a sort of respite situation now. Mum & FIL passed away this year which is very sad, and we all miss them very much, but it was incredibly stressful during their last months, particularly with my Mum who spent 6 months in and out of hospital. DF and MIL are in reasonably good health and don’t (at the moment) need physical support, but they do need a shoulder to cry on, a listening ear, and company. So DH & I do what we can, from a distance.

CMOT I’ve just caught up on your guest post, so eloquently expressed. As I read through the thread, I felt such sadness for those going through the living bereavement described by SPT, outrage at the lack of joined up and intelligent care for dementia sufferers and their carers, and huge sympathy for you and the others here and anywhere else who have to cope with dementia in their families.

I was convinced my Mother had Vascular but CT scan shows Alzheimer's too meaning she could take medication. Aricept ddn't agree with her so she went onto Galantamine which has made a big difference - we have always been able to tell when she has stopped taking it as is obvious. Won't last forever but for now it helps.

Georgousone, FIL is 89 and abroad. Sadly he can't hear DH on the phone and makes little sense these days.

SugarPlum, that's interesting - I guess I will have to wait till the full diagnosis comes through. Thanks!

It's interesting the way the medication has been handed to my DM for general memory loss without a brainscan diagnosis.
So sorry for all your losses Ping Pong. Terribly difficult for your father to have lost his wife. And Sugar Plum, it is so hard when they can't hear for phone calls. I think my DF only hears a fraction of what is said to be honest.

DM has Alzheimers, but regularly forgets this and calls me full of anxiety because she thinks she's "going mad", I then get to remind her that she has seen a specialist, had brain scan and that the nurse who comes out to see her is her memory nurse.

Have had a couple of panicky early morning calls when she can't find dad and I have to break it to her that he died 8 years ago, forcing her to begin grieving afresh. I don't even have this year's summer holiday planned, but I'm starting to dread it!

I know I'm waffling, but it's such a relief to have found somewhere to vent to people who will get what I mean.

Thank you all for being brave enough to share your experiences.

well, financial assessment being done friday with control freak brother. SS seem very sympathetic to the fact we are miles away and have agreed that care home is a temporary measure (can't see her ever getting home though unless a massive improvement) they said they can see the hospital is doing her no good at all and think some activity will perk her up a bit, she is very depressed. control freak sends random texts ranting about SIL having to do 'shitty laundry' neither hospital nor ss have said she is incontinent but suppose she could be, still... how hard is it to do a wash, especially as it comes from the hospital in a bag that goes directly into the wash. I did a load when I was last there. last text was 'you sort out her laundry from now on' err from 7 hours away, right ok then... post it to me perhaps? apparently she needs labels ironing in all her stuff too so 'where would I like them sending?' er ok, post all her stuff too? I have replied saying happy to do labels when I am next able to visit which will be when we get a date for her move to the home assuming we can get leave. don't know why he is being such a Knob. I get it must be hard to be first in line of responsibility and would do more if I could so no sense piling on the guilt with irrational texts, he just has no compassion for mum I fear. sorry to rant.

madsman, that's interesting - how did she get a memory nurse allocated? Is that a usual thing? It must be awful for you to have to keep explaining where your DF is. Does she forget again very quickly?

BigTillyMint, where we are, in the north east, we have an older people's mental health team. As they mostly deal with dementia most of the CPN'S are branded as memory nurses.
Last time she forgot about dad she was gutted once she'd been reminded, she realises that it's really upsetting for me. I guess I understand though, they had been married for almost 50 years, so I'm not surprised his death is something she "loses". I suppose one day she'll have lost so much insight I won't be able to explain. She hasn't rung for a while about dad though, she and I chose her favourite photo of him, and picked a frame and I made a label with his dates. This is now on her bedside table.

That was a really good idea mads. It is sad to know that they will spiral more and more out of control with their memory loss.

Maybe I will be able to find out if there is an older people's mental health team when I go up for the Memory Clinic. She is in the North West.

Eccles, difficulties with siblings is a bit of a theme on these threads, welcome to the SSC (Shit Sibling Club). I am on leave from it currently as Brother is now being very good but was fully paid up member before. With name labels I ordered Stikins which worked well.

That is sad Mads. We're having a lot of success with a digital photo frame that my Brother can load up remotely. She's got something coming up next week so he puts little notes on it as reminders as otherwise she forgets when things are then gets angry as doesn't want to show she forgets.

I think BTM that it still isn't very consistent as to what support people get after diagnosis but Memory advisors do seem to be coming in more and more. My Mother had one for a bit, they support family here as well, up until residential care needed.

Hello all
we have a lady coming from the alzheimer's society on Monday, who sounds v helpful on the phone. that is so tragic Madsman about her grieving afresh. Just so sorry for them/ all of us!
On a positive note, I bought a brilliant clock on amazon which says what day it is in huge letters. It is one of the rare things which does what ist says it will do. I have plugged it in and it's changed the DMs life. She now knows it's Sunday and goes to church. it's called an alzheimer's clock and is perfect for the early stages.

gorgeous, could you post a linkie? And anyone who has a link to a really simple radio as DM is unable to operate any new ones.
What is the alzheimers lady coming to do/say? I know nothing!

My Mother has this clock she likes. Also has a Nix wifi digital picture frame and my Brother remotely uploads messages amongst the pictures eg. Your appointment is on Thursday June 18th June at Hogwarts General with Dr Snape at 3.15pm. 5 days to go' and then updates it. It works very well as she thought everything was the next day and got upset.

Also uploads regular pictures of family which helps with something to talk about on phone and she feels involved.

Not sure for radio, sorry.

Maybe this for radio?

SugarPlum, that's really helpful, thanks. The Helpful things website looks good.

www.amazon.co.uk/Dayclox-Digital-Calendar-Clock-i8-1/dp/B00Q36QNFG/ref=sr_1_1?ie=UTF8&qid=1434616857&sr=8-1&keywords=dementia+clocks

this is the clock. The lady came from a referral via the memory clinic to a local 'dementia hub', which offers courses/activities for people with dementia and their carers. My mother is refusing all offers, but the person went over the importance of eating/drinking/getting help when needed etc. She was very supportive and friendly. It's an assessment visit which is not repeated, and is local to her area I think. Facilities differ across UK.
Hope everyone is doing well. I'm off abroad for a bit so incommunicado, but best wishes to all.

Hello all. Hope things are calm and you all have time to be you not just the carer.
Exams nearly over- and I have discovered the secret of how to persuade my dm to do things. I have been wanting her to have a phone by her bed/ even bought her a mobile phone which was never used. I didn't dare suggest an emergency alarm.
Sadly there was a fire in further down her cul de sac caused by an elderly neighbour burning rubbish in a bin which destroyed the neighbours her carport and her neighbours- plus doors and windows. Fortunately no one injured.
So the fire brigade have done house to house visits and installed more alarms and a very nice fireman told dm she should have an alarm which she thought was a great idea
So... I need to employ some hunky firemen to get dm to agree to things...... The physio told her she needed a toyboy.