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Support for those who care for elderly parents - drop in as you need, everyone welcome

(1000 Posts)
CMOTDibbler Fri 20-Nov-15 11:39:52

All of us would rather not be here, but we need to be - with the people who really understand.

SorryCantBeArsed Fri 20-Nov-15 17:50:00

I'm in! I'd most definitely rather not be in this situation, I must have been born under a bad sign! Dad has been on a one to one with staff at his care home for the last two days as he has hit two residents. He's hardly eating and feels like a bag of bones, but the smile on his face when he saw me today was worth the two and a bit hour round trip to see him. My poor step mum has Alzheimer's as well and she misses him dreadfully since he went into care back in September and she reeling more and more on me and I'm having to push my step brother to do more for her. Oh and I swear far more than I used to since this lot started

bigTillyMint Fri 20-Nov-15 20:12:27

Found the new thread! Hi Sorry. That sounds very difficult - having 2 parents with dementia.

NMS, that sounds both good and sad. How long has your DM been needing extra support/care?

Well, the appointment went well - she liked the MH nurse who was lovely and said all the right things. She has been upped in dosage for the Galantamine as it seems to be going OK. I'm not sure what this will do, but she does seem more on the ball ATM.

Then the manager of the carers came round - lovely woman. DM told her how some of the carers are "no bloody good" mainly because they are a bit common/thick - she didn't actually say this, but that's what she meant! And she went on about how some of them are huge and some are stick thin. The manager is a larger-lady and DM was always very rotund (v short) until the last 6 months or so! Luckily the manager has a GSOH and we were both laughing to ourselves. I'm not sure if she'll be able to cut down on the number of different ones, but actually I don't think it's that much of an issue ATM.
I would love to find someone like your parents have, CMOT, but no idea where to find them!

thesandwich Fri 20-Nov-15 22:27:29

Hello all! Nms I am so sorry about your mums decline- but as you say those moments of joy are worth it- for you as much as for her. Look after yourself- I know you have other challenges too.
Sorry- it must be so tough dealing with two parents. Dmil became very aggressive with dementia and was transferred to a nhs secure unit which was wonderful. Make sure you look after yourself too.
BTM sounds like you have a good set of careers who will have seen it all before.
CMOT thank you for the new thread!

Helenluvsrob Fri 20-Nov-15 23:34:26

Can I come in?

Need more sleep, sorry about your mum. Don't feel guilty that the point will come that she will need a home. IMHO also better if you can to make the transition before she absolutely has to, so she can settle in whilst she can still visit "the worlds biggest beach hut" and do other things that give life meaning.

Dunno if anyone saw my thread a week ago, but after a horrible 12hrs in a&e and CDU for no decent reason I have a positive admission avoidance plan for dad in place. I feel happier about that.

Having a horrible " orphaned" feeling tonight though. Partly triggered by blooming downtown abbey on iplayer where Mary and Edith vowed to be less vile and more sisterly as they were the joint custodians of their childhood memories, the only ones - I should have dad to share mine with, the lovely baby photos , toddler beach holidays etc , he hasn't a scooby about them sad

I also get irrationally upset when dh chats to his parents. To think I used to get annoyed when mum rang at tea time to say something inane sad

PingPongBat Sat 21-Nov-15 22:44:09

Goodness bTM your DM sounds like mine, when she talked about about her carers in the nursing home. Her opinion was that the male staff must all be doctors, and the female staff couldn't possibly be doctors. She couldn't understand when the male carer called someone else when she asked for a doctor. She commented on their shape too, their accents, their skin colour... She always sounded very surprised when a female consultant came to see her in hospital too - "goodness she's done well" etc hmm It really surprised & saddened me as she wasn't like that when she was younger, I'm sure she wasn't.

Oh Helenluvsrob that's not irrational, it's totally understandable. When MIL comes to stay I find it very hard to even speak to her sometimes. I have no idea how DH feels when my dad is here & his isn't though, I guess it may be similar but he doesn't talk about it. You've had a really tough few weeks, from reading your other threads, don't be hard on yourself flowers

LapsedPacifist Sun 22-Nov-15 15:57:44

Hi everyone, may I join too? We live with DM who has mild vascular dementia. She's been referred to a local day centre for elderly people with dementia and I took her there for the first time last Friday. It seems like a really lovely place with loads of individually-tailored activities and a high staff/client ratio. Bloody good lunches too.

I really hope she's happy to attend on a regular basis. She spends most of her day watching telly or reading and needs more stimulation and interaction with different people. DH and I work mostly from home and have been able to look after her most of the time, but DS is now at Uni and I really get a proper job.

We're going back tomorrow (when it will be a lot busier) for a 1950s themed day. I sell vintage clothes online and have offered to bring in a mannequin and some lovely 1950s dresses to show the clients. Wish me luck!

bigTillyMint Sun 22-Nov-15 16:08:48

Hello to the newcomers - sorry to hear you are finding things tough ATM Helen. And Lapsed, that sounds like a fab place - how did she get referred? DM could really do with somewhere to go to regularly, but doesn't seem keen to try a local "luncheon club" She would love looking at 1950's dresses as she was/is a keen seamstress.

whataboutbob Sun 22-Nov-15 17:14:42

BTM just read your post. I was told by a carer that dad was being driven along a country road by another carer (who is a large woman), and suddenly started giggling. The carer asked him why, and he pointed at some pigs in a field, saying "they look like you!". The 2nd carer (who was relating the story) said the carer in question took it well. You can get away with quite a bit (in Dad's case shoplifting, going to a cafe eating drinking and not paying, getting on trains without a ticket, and now very un PC comments) when you have dementia!

whataboutbob Sun 22-Nov-15 17:16:28

Good luck Lapsed, sounds like the day centre really makes an effort and i hope your DM likes it and gets to go regularly.

bigTillyMint Sun 22-Nov-15 18:22:18

Bobgrin DM hasn't been quite that rude directly to the carers. Yet!

Needmoresleep Mon 23-Nov-15 10:37:12

My mother has a loud voice and one of her few remaining pleasures is for her to sit in a beachside cafe commenting on passers by. Their hair, skin colour or whatever. "Look at those two men kissing" she says commenting on the two men sitting at the table next to us. I let it wash over me. Another goodie was some sort of mortgage/insurance/pansion salesman giving the hard sell to a young couple. I wanted to tell them to run a mile. My mothers says loudly "Look at that young woman. She is agreeing to everything but it is clear she does not understand a word the man is saying." I hope they took note.

Tenants move in next week, so a last visit to the big beach hut. (See previous thread. The flat my parents used to live in has lovely sea views. However the last visit caused my mother to go back in time, meaning she failed to recognise the very sheltered housing she has lived in for 30 months.) This time she spent a happy 90 minutes watching dog walkers, children, sailing boats and even a swimmer, but had no problems going back, even referring to her sheltered housing as "home". She was more alert than she had been in a while. The next tenants should only be in for a year so perhaps I should then leave it empty for a while.

Best wishes to everyone. My mother's Alzheimers is developing slowly and she is in good physical health, so she may have up to another decade. I hope not. At best it is one step forward and two back. There is very little that gives her pleasure and even less to look forwad to. I think she wants to join my dad.

CMOTDibbler Mon 23-Nov-15 10:55:17

Mum went through a stage of saying massively inappropriate things, very loudly. Now she doesn't have the words to say that sort of thing, so I guess thats a blessing.

What is everyone buying the oldies for Christmas? I have an etching for dad (he collects the work of an architectral artist who he actually knew), but am stuck for mum. She never used last years heated furry blanket - I think it being hot confused her. I was looking at murano vases, but dad didn't think she'd pay any attention, so thats out.

Needmoresleep Mon 23-Nov-15 11:13:46

Plants? Orchids seem to do well in my mother's overheated flat, so a nice one will last a year.

A bird table outside a living room window or a bird box in a tree?

Books for toddlers which pop up or make sounds. Or a simple music box?

CMOTDibbler Mon 23-Nov-15 11:45:44

They have a zillion plants in the sitting room already, plus fake orchids. Otherwise that would be great.

I did the toddler book last year, and she loved it. I've just found a Coppellia press the button book, so that may be the solution. Just not sure with how much mum has deteriorated this year if she'll still make sense of it.

Helenluvsrob Mon 23-Nov-15 12:15:59

I've knitted a lap blanket for dad. he'll not remember to use it but It'll be good for the wheelchair when we go out. I'll get him some Pyjamas too of a traditional type with buttons. that isn't ideal as he can't dress himself but the home don't seem to be able to compute that round neck jersey tops are PJ tops and his "day time tops" are rollnecks so they are warmer! I get irrationally annoyed that they can't do that- his scrawny little chicken neck sticking out of a zip fleece looks like he's got no top on !

Supposed to be doing some photos ? canvasses of the grandkids too . Now starting to doubt that, maybe they need to hand them over in person...

If you are stuck CMOT get a cheap jolly primark fleece throw. Even if it just lives on her bed ( as Dad/s does) it makes the place look less institutional and samey. Mum loved her throws in hospital - she was both warm and " a person" as they saw her as the " lady with the reindeer blanket" not " bed 3" or " the renal failure" .

bigTillyMint Mon 23-Nov-15 13:46:50

Re Christmas gifts, DM was upset to have broken (though she blamed it on carers!) her favourite teacup (Botanic garden, Royal Doulton) so I have ordered 2 replacement cup and saucer sets.

I have also done photo calendars for DM and DPIL.

The Dementia nurse made a really positive impact on DM - she was saying to me again today what a lovely woman she wassmile

NMS, how old is your DM? Ten years sounds a long time to be needing a high level of care.

Helenluvsrob Mon 23-Nov-15 13:50:23

CMOTs mum is in sheltered housing at the moment IIRC bigtilly so 10yrs could be a realistic idea- sadly ( sorry CMOT you know what I mean).

My dad is probably the best health he's been for 2yrs physically- with being fed decent amounts by people who prompt him not to forget he's having dinner, walking a biy more, and going out doing stuff ( when he was mobile and Mum was in the chair I couldn't take them both as he'd wander off).

Hmm photo calendars ...

CMOTDibbler Mon 23-Nov-15 14:06:45

NMS's mum is in sheltered care - mine is still at home with my dad (also very frail). My parents are 74 and 79, but in very poor health, I find it hard to imagine dad living another 10 months, let alone 10 years tbh.

They used to love a photo calendar, and I will do new family photos as dad likes to talk about them to visitors. No mugs as they have to have the same ones all the time

Needmoresleep Mon 23-Nov-15 15:38:43

BTM,

Dementia is like that. Her last three years could be spent in a foetal position. Her general health is very good. But she needs reminding over everything, as her short memory has gone.

The specialist said 10 years, three years ago. I can't see any reason why he would be wrong. However no memory means no anticipation, no pleasurable reflection and so on. Its awful. Very sheltered with a 24 hour warden is great. It is far cheaper than a home. But the option is not available everywhere. She could not manage on her own.

bigTillyMint Mon 23-Nov-15 15:44:55

God, it's an awful disease, isn't it?

Helenluvsrob Mon 23-Nov-15 16:02:32

NMS much hugs.Agree about the no exciting anticipation or pleasurable reflection. When you have kids and you build memories with them it's fab, dad enjoys the moment but it's as fleeting as the cake we eat when we are out. He then thinks it's ages since i've seen him last.

I still struggle that he can't remember medium to long past, except for it to trigger a grumble.

And if a hospital tries to tell me my dad is " dehydrated " when he is offered drinks all the time ( and he can reach them and is prompted) they might get a rude retort. He isn't at that stage yet but not eating and drinking is part of the terminal phase of dementia. I will be actively stopping them intervening if I'm allowed as if even the pleasure in eating and drinking has gone then really, what are we keeping him alive for?

Sorry, off on a tangent there!

Needmoresleep Mon 23-Nov-15 17:58:23

Skins off an onion. Layer by layer is lost, till there is only a basic core. Mine is now losing enjoyment of conversation and socialising. She still enjoys food, but drinking was a problem this summer. She will refuse, I assume in part because of an anxiety around needing to go to the loo if she is out of her flat. The carer finally announced some fruit juice as a "new flavour" which my mum should try and which had been bought specially. This worked each time, with a top up as well. However it took someone who knew her and knew how to manipulate her I assume people in hospital would have neither the time nor the knowledge. It will be very sad when her enjoyment of food goes.

whataboutbob Mon 23-Nov-15 18:44:06

Helen my Dad's like that, he enjoys stuff in the moment, then it's all gone. The only positive change I can see is he is no longer in a perpetual state of angry confusion, he just seems to sit back and let things wash over him. He also catnaps. I have recently realised he also dreams a lot. He'll wake up and try and get his bearings and figure out what is happening now and where the dream ends. Last time i was there he woke up, looked at me and said "you're here, it;s not a ..." (looking for the word for dream). This relative contentment comes at the price of diminishing faculties and now incontinence. Yes, it's grim.
On a cheerier note, for Christmas I'll be getting Dad and bro a decent radio, they need some music in their life, ideally it would be jammed on Classic FM.
I'll also buy bro some clothes as he usually likes that.

bigTillyMint Mon 23-Nov-15 18:46:08

NMS that is so sad.

And I agree Helen - what is the point of keeping people alive when there is no more pleasure at all in lifeconfused

I got a letter from DM to say thank you for going up and helping her and she ends it with "Love to the others too - but you the best" and signed it Mum. DD picked up on the fact that she usually signs herself Grandma, so I must be in her good books!

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