Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Phone call from CH, she needs more pads taking in so will sort that. They are having trouble getting her to wash herself and her hair and were wondering the same had happened at home. Answer to that a resounding yes to extent I told SW to reduce the care package by the 15 mi s she had put it up for showering as it wasn't happening.

Her hair is all greasy and horrible but she's refusing to wash it. 2 weeks ago she said she'd go to the hairdresser when she came in but has refused. I did say I'd take her to her usual one but the feeling was I wouldn't get her back.

Doesn't sound as if the Galantamine has made much difference at the moment though her memory hasn't deteriorated any more. She is still going up and eating in the house, talking to people if they talk to her but not more than that by the sound of it. One big plus is that her mobility has vastly improved since she went in which is excellent news. If sent home I will go downhill again. Also she hasn't had any of her turns and has been there for a month now .

CMOT. Your brother could potentially stop the POA going through. Any chance of you speaking to him and saying:

1. Much easier for it to be help by one person. Care decisions may need to be made on the spot and admin is bad enough if it is just you going through it all, let alone if you had to clear with someone else.
2. He needs to be much more involved in the day to day stuff if he is going to be able to help ensure best decisions are made on behalf of your parents. The next year is going to be busy.
3. He could usefully be alternate.
4. A POA has a lot of obligations and potentially can be convicted of criminal offences. If he is in anyway concerned about 'the money' he would have have lots of scope for redress.

The big thing is that you have worked so hard to get your dad to this point. It has been about trust. It is your dads decision. It is vital it goes through now otherwise it could end up an expensive disaster with both of you having to find the money to support your parents until access to their finance can be obtained. Or you could have Social Services overseeing the sale of their home. Is he prepared to provide such up front finance?

In the meantime is it worth talking to your dad about setting up a joint account in his and your name or allowing you a third party mandate on his accounts. This can provide a useful stop gap as you wait for the POA to go through. Simple forms which can be picked up from the bank.

I think he won't block it - he seemed to think it was enough to ask dad to 'put him on it'. I did say to dad that it was entirely up to him, but dad doesn't trust my brother, esp with money.
No way does he have money to put money up front (in fact normally he contacts my parents to try and get money).

Great idea on the joint account - I know dad has money in his own name (they both had a savings account in their separate names in case there was ever an issue with probate, but he's closed mums), so maybe we could be joint on that.

My great aunt who is 92 has now asked me if I'd be her executor as dads not well enough to travel etc. Bit weird as I've only met her 3 times due to some very peculiar family things on that side. I couldn't say no though - theres no other relatives apart from dad and my aunt, and she hasn't seen my aunt for 40 years and none of my generation.

That's a good idea with the joint account. Your Brother doesn't sound clued up enough to realise how it works CMOT which could be a blessing. I'm executor for my Mum's will but will be declining the position when the time comes and getting a solicitor to handle it given how things have been between brother and I.

Mum's paperwork seems fairly under control, did her Sorn today (anyone notice the conspicuous absence of my co-Attorney ?!) Went over and had a bit of a goat the garage. The guys my brother got to shift stuff out of th spare room just lobbed it in and it was a bit of a state. It still is bit I've filled a few bin bags and identified a few bits for Freecycle. I then sorted out the conservatory which looks loads better.

My Brother chased up SW for date of meeting, the situation has now changed again. As Mum doesn't have capacity the citizen advocate won't represent her either so she isn't having an advocate. The SW has Ben getting support from the Mental Health Act Team and one of them will be there, she's been trying to reach them today and a new date I'll be given by end of week.

So the panel will be chaired by independent SW. There will be Mum's SW, Psychiatrist, Memory Nurse, OT, member of the Mental Health Act Team and someone from the CH. They are a good bunch of people and I trust them. I'm still a bit unclear as to whether I'm required but we'll see.

Wynken- just a small thing. Have you thought of using a dry shampoo on your mum. My gran used them all the time as she was coquette but hated bending over to wash her hair. Klorane makes a really good one. You just spray on, wait 2-4 minutes and brush through. I used it when i had eye surgery and couldn't risk water in my eyes.

Bob that is inspired and definitely worth a go, thank you. With the beauty of technology and Amazon prime a bottle is enroute to the CH and I have emailed to explain. What on earth did we do without things like that !

Amazon Prime is one of my key coping strategies! I found a two dial microwave for my parents today on there, they'll get it tomorrow. Same with incontinence pads last week, crutches, urinals and much more.
The microwave was urgent as mums routine includes bedtime horlicks. And not being able to heat the mug up as normal wasn't going to stop her - so dad has been presented with a mug of cold milk with horlicks stirred into it for the last few days.

I hope your mum likes the dry shampoo - it can work really well ime. You've reminded me that I need to sort something about mum and dads hair arrangements as they both look very tatty. Not helped by mum wearing size 18 clothes when she's a size 8. I'm waiting to see if she puts on some weight with no insulin and no restrictions on sugar etc before I enter the lions den of new clothes.

Good work on the garage and conservatory too

How are you doing Bob?

Just being on this thread and having so much less to say, despite my mum having similar issues, has made me realise how much weight my sister carries. Hope you are all coping this week.

Spoke to mum last night, she's still convinced the neighbours are talking about her. Will call on them next time I'm down.

Talking of internet sourced gadgets has anyone had any success with day and date clocks? www.wharton.co.uk/analogue-clocks/analog-calendar-clocks.htm I've got something similar to these for my mum, which is really useful when she remembers to look at it.

Mum has a digital clock with the day and date but it's not as clear as those ones.

Hope everyone is doing ok at the moment and getting sme semblance of a break. It all kicked off with FIL yesterday, SIL flipped a bit as she is the one doing everything at the moment and thought at one point he was going to die. DH and I found some respite but he was responding to the antibiotics by then and SIL says she able to cope. Apparently it might be his prostate that is partly causing this, he is very thin and very frail and can't walk very far at all.

DH emailed his two brothers to say he doesn't think he should go home to Spain. The eldest emailed back to say he agrees his Dad needs a lot of care but they can't force him t stay. Once DH up and functioning this morning I'm going to suggest he emails back and says he gets that but they can all put to him that they think now is the time for sheltered housing and. Get the GP to talk to him about his future care needs. Friends wrote a letter expressing their concern and FIL leans heavily on a neighbour who has been saying he is dehydrated and sounds like she has had enough of dealing with him. Never straight forward any of this is it.

Not what you needed at all atm Wynken. Sounds like the bils are in a bit of denial about stepping up and being firm with your fil.
Hope today is a bit better

Thanks CMOT. SIL going on about how her DH is being helpful, taking time off etc and that FIL's neighbour goes on about how DH and BILs should go out, just for a weekend.

I've emailed back firmly to point out DH has tried on many occasions to get out there but every time we end up in a crisis. Last year's attempt was DS's suspected Perthes. Also, DH has two chronic health conditions, was made redundant two years and has his hours cut again now. That house prices are much higher now than when the rest of them were our age (massive age gap) and we have a big mortgage to support that we have a highly stressful situation right now with my Mum amd two school age children who have been affected by this. The others all have grown up children, one about to have a baby. Pointed out that quite firmly and frankly we need support right now and I'm worried DH will have another breakdown.

Then said we will do what we can to support FIL's independence within the limit of DH's health. That there are new technologies available now eg Telehealth, though not sure if in Spain. That DH just wants a realistic conversation about FIL's care needs in the future and it have an emergency plan in place.

Thing is we went through this when MIL had cancer. DH got out there once to find she was surviving on two meal replacements of 140 calories each day. It was all a disaster and unsurprisingly she didn't make it. The whole family did a good impression of headless chickens and when the time came to make a decision to withdraw nutrition, everyone looked at poor DH to make the call.

Sorry, yet another Wynken rant. Please tell me one day things won't be like this.....

Have a Wynken. Wish I could deliver it personally with a hug and a sticky cake.
Your dhs family sounds like my dhs - he has two brothers who are close in age, had their children relatively young. DH is 7 years younger than the second brother and we had ds relatively late, so theres a big age gap. But when it comes to anything practical, its always dh that has to organise or deal with things.

I'm trying to tell myself that as we deal with elderly parents while we have small children, that means that we will retire without having that hanging over us. I hope.

Thanks CMOT I might go and buy a sticky cake, I have PMT which is making this all feel worse than it is.

I'm taking consolation in the fact that if I actually survive until retirement, it might be more peaceful !!

My mother in law has dementia and really there's no point to the care. She doesn't want strangers in her flat and is in denial. Very stressful for her only son. The whole system is a money making vehicle for outsourced care.

Hello every one again !..... Not been on for a while (but reading and trying to catch up!) due to lots of things .

Went away a few weeks ago due to a family tradition of ds being 9 and going to Ireland to see where Grandad was brought up.

The last 2 times I went it was just me ,dad and
relevant ds ....this time we went all of us for "last time"......dad,mum.me 3 ds's.

It did not go well ...for some reason ...taking dad out of his "comfort" zone made me realize how different he was to 3 years ago when we started these trips. ....He was not the same dad .

Little things that could go un noticed at home suddenly become big and problemic when routines are changed.

He was not comfortable at all and just kept wanting to go back to the hotel (in Wheelchair so was relying on us )

Went to a lovely pub doing Irish music and dancing ..and kept saying when is it over ? (fab night btw !!)

DS1 (12) was fab with him...if you all remember he is meant to use his catheter(pp!! )...but still then wanted to go to toilets ...ds had to wheel him into mens (urinals) as alot of places did not have disabled toilets....

I am sure dad was frustrated that his GS had to do this ...but if he had done his "thing" before we left thre hotel it would not have been needed !

If he was reminded to do it by mum ....she would get short thrift !!

Obsessed about money and kept wanting to take money out of machines ....when I explained we had enough and did not need more ...ie saving him a bit plus charges he went mental and told me not to tell him what to do with his money (he had 300euros in his wallet !! think even mum and I would have struggled to do that in a day !! )

Took him out as well a few weeks ago for mums birthday ..all he wanted to do was go home !

Well it has all taken it's toll on mum now as she was in hospital yesterday with an Angina attack.....I am not saying it is dad's fault ...as she does have Angina.....but she is not coping with his change in personallity and getting stressed about it .

And I think she has finally realized she could never go on a little holiday with dad again(They used to go fab places ...Venezualia, Bali, Goa .....and the "near ones..." Austria!)

The weird thing is ...MY REACTION to it all ......I am drained (dead inside)
I cant get through to mum that this is how things are/might be and she cant change him.....she thinks if I have a word with him he will be the man she knew a few years ago

S i suppose my rant to day is not about the parent with AD ...but the wife ?

I am going to Spain on Wednesdaay with the boys ....yes just us! for a week ....but I have this heavy heart/feeling and cant even pack .

(Boys at their dads at mo ...so 3 less to deal with !!)

Have I got harden/used to all the drama now ...or is something wrong with me

Afew years ago when mum was taken in I rushed around and packed her a bag with all her nice bits in .....Yesterday I gave her a t-shirt ,trousers ...and NO bra !!!.....Or is it now I am so use to it I know what they need/dont need ...I am a bit blaise about it all .

Sorry for coming on with no help for any one ...but you do have my "silent" support...and just telling you of my feelings amd woes...but I have no one else to tell ...

I am the ROCK of the family with no one to turn to ....they all turn to me .....I thinnk I am going to start erodding soon !!!

"erodding " !!! eroding

Bizzey, sounds like a very stressfull trip to me.

Do your parents have an Alzheimers Society family support worker? The one that my parents have has been fabulous, and its her that dad has listened to that theres no point getting angry with her, that it won't be better, that you just have to shrug things off. He's so much more relaxed now. He didn't listen to me about it.

You do get very relaxed about hospital admissions - between them, my parents have had so many I'm much more 'I'll ring and find out' rather than rushing in.

Have a lovely week off. Turn your phone off!

CMOT Thank you ...I cant believe that when the phone went yesterday at 8.00 am ..my first thought was ....oh god which one's in hospital now .. (well known fact... I am not an early riser naturally and NO ONE would ring me for a chat a that time in the hols !!)

I think I am going to focus on my break with the kids and get stronger and come back and sort out what I have to do.

Yes we do have a support lady who I will get back in touch with for help ..

When we were given her everything was still new/raw...and stuff and I did not know what we were going to need ......now I do !!

I don't think that's a weird reaction to have Bizzey, just your body and mind saying 'enough'. And your rant yesterday might be about your Mum but Dementia is a whole family disease . I read the Natinal Dementia strategy and it makes the point that carers are often older, not in the best of health themselves with higher rates of depression, a pretty shitty situation all round.

There is a limit to how much one person can stand. You have a job and children and are coping on your own. Not surprised you feel like you're eroding. Think your holiday is very well timed. Go and chill out as best you can. Then when you come back it's time to get things put in place to take the pressure off you. Hope you have a lovely time and enjoy a bit of the local

Hello everyone just checking back in. We went away for a short break last week 4 away in Scotland which went well. 11 messages on the answer phone on my return. All but one from dad ( when are you coming to visit me?). Invited him to come on my day off from work, he turned up a day earlier, was instructed by DH to wait for me,but didn t and let himself out after deciding to go back home. 2 hours later it s the now increasingly familiar telephone call from the transport police, he was found confused at totally the wrong train station for his return home. In a nutshell his dementia is getting worse. I contacted the psychogeriatrician's 3 weeks ago to ask for an appointment to discuss dad. Was told they d get in touchHeard nothing, rang again, they said they didn t know who I'd spoken to but it wasn't the right medical secretary. Then told me to wait again and someone would send me an appointment. So I'm waiting. I know dad s living conditions are getting unsustainable but I just dread the idea of discussing let alone arranging for him to go into residential care.
Bizzey it s no wonder you feel so weary. I have this expression " when you have a parent with dementia you have to be bomb proof". To put up with the cock ups ( and deal with them) the difficult behaviour/ moods, the social embarrassment, the relentless erosion of the person by the disease, etc etc. it really is a whole family disease Wynken. I told a few colleagues how things really are with my dad and brother. They just went quiet. You could kind of hear the pennies dropping when they realised how much of my life is encroached upon.
About holidays, dad keeps asking to go abroad, but as some may recall, when I took him to Spain last year, he was petrified on the plane and on the way back refused to board and we had to come back overland by coach. I was a wreck by the time we pulled in to London. He also was more confused when there, and I had to keep an eye on him all the time, toddler style, lest he should get lost. Even going to the seaside a couple of weeks ago (20 mims bus ride from his home) was stressful as he got cross with most things- too many people, how dare the fish and chips people make us wait (7 mins) for our food, where are the kids, tell them to come here right now, I want to go home NOW. So I just listen when he tells me he wants to go to Spain,Portugal and have no intention of arranging anything.
Anyway, all my best wishes to all. We are doing what we can in the face of an extremely difficult set of circumstances. Be kind to yourselves. And bizzey enjoy YOUR holiday you deserve it. Dementia would like us to be there 24/7 for our parents, but we can't.

Glad you had a good break Bob. Though sorry about what happened when you got back. Maybe the way forward with your Dad's living arrangements is to look at it as a series of steps. You made the first one by ringing for the appointment. You've done all you can do for now apart from maybe jot down some notes to refer to, so sit back and don't think about it for now.

You won't be the first or last the professionals will have seen gong through this, they will have advise on what to do. Actually maybe one other thing you could do whilst you wait for the appointment is to ring the Alzheimer's society to see if someone could support you ? I think it depends on what your local branch is like. Apologies if you've done this, I think though someone to support you would be really helpful right now. Does your Dad have a Memory support worker type person ?

We're off for a short break tomorrow. Can't say how much I'm looking forward to spending time the four of us away from here.

Thank you for your kind words of support.....Wyken...hope you have a good break as well!

Hello everyone - glad some of you are getting away for a bit. It really does help.

I had 12 days away with the DC & it was bliss. We didn't do much, except splash in the pool & the sea. We unwound, relaxed, chatted and had fun. It was so lovely.

Back to reality again now though. Poor Dad not good at all. He is set up in a downstairs room, with a hospital bed. All sorts of bother with catheters and infections rumbling around. His brain is absolutely trashed. I don't know whether it is more bleeds, the repeated illnesses, galloping alzheimers or what - but there is very little of poor old Dad left. We have upped the carers hugely, even though Mum is laying an egg about the cost. She tried to cut back but ended up in such a state herself, that it didn't take much encouragement to re-instate them.

I'm fairly sure that the next infection he gets will be his last. It is awful to say or even think this, but in some ways I hope it will be as watching him now is quite awful. I'm quite sure if he were his younger self & could talk about how he is now, he wouldn't want to live like this either. It is taking such a toll on Mum too, that I don't know how much longer she can sustain this either.

Anyhow, please get away if you can - you won't realise how much you needed to until you actually get away. Yes, it will all still be here when you get back - but the break will fill up your reserves a bit again.

How is everyone?
We had a lovely week away last week, which was utterly relaxing (apart from the bit when our friends left us with their dd while they 'popped' out, and came back 5 1/2 hours later).
I felt bad when I came back as mum has been really bad again, and dad apparently blew his top at her and told her he'd put her in a home with no books if she didn't start eating. And then stomped out - or as much as one can on a mobility scooter!

PostBellum - theres not much I can say, apart from I know exactly where you are coming from.

I'm pleased people got away and had a lovely time but so sorry to what you've come back to. CMOT you absolutely musn't feel bad about having a break.

We've finally had a date for Mum's case conference but not till 17th. She now isn't having an advocate as she doesn't have capacity but a member is the SS Mental Health Act Team has been supporting SW and will be there as will both my Brother and I. With various assorted professionals and us there will be 10 people.

SW went to see Mum to explain delay and expected to find her very cross. She was out on her patio talking to another residents family when she arrived. Remembered who she was and seemed fine. Said it was my fault she was there. SW said it wasn't and that it was SW's fault but doubt that sank in. When SW left Mum went up to main house with her to drop into the living room, so is socialising and said she seemed fine. Apparently Brother and Mum are saying if decision is she has to stay in a home she will be moving.

Care Home rang re Meds and advised they had spoken to Brother who had actually had a proper conversation with them finally about how Mum was doing rather than ringing and asking to speak to Mum. Think he was complaining they always dealt with me (as I was only one ringing them), that they aren't there to be in the middle of a dispute between the pair of us but to look after Mum. Also told him I had backed of as requested but rang weekly to speak to them and check on her progress.

Also that when she had come to be assessed she said she had wanted to go there and that was whilst I was out of the room. The told him about hair washing problems and he seems to have spoken to her and she finally had hair seen to when the hair dresser came in. Also she had said she would go on the trip to garden centre and cafe tha afternoon. She sounds hugely better than when she went in. Still doesn't want to see me and probably won't if she stays but I am dealing with that. Actually not dealing with her and my Brother has resulted in my nails growing for pretty much the first time in my life which is interesting.