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

[CMOTDibbler]

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

Hello all. Sorry to read the updates SPT and Tilly- it is so hard when there is nothing we can go to fix things.
Tilly- could someone take your Dm out at all? It is so hard to watch. But she could not be at home. I do feel for you.
How are all the sandwiches? I know lots of us have Dc doing exams. Here things are pretty calm on all fronts- dd seems to be feeling ok about her exams and is getting stuck in to revision( at last) but she is in so much better shape than last year. and to you all!

thesandwich, there is no family at all within 150+ miles and I don't think any of her aging friends would feel comfortable taking her out. I think she is just mentally restless - is that a symptom? - but can't actually do much. She used to enjoy painting/colouring/knitting/sewing, etc but she seemed to be saying that she was finding it hard today.
I guess I need to try to speak to the manager and find out what they think, but it is quite tricky to do that whilst I work full-time. Not that I would be attempting to move her as I think it would be the same anywhere.

Glad your DD is calm and doing revision. Mine too is in way better emotional shape than last year, thank God!

As BTM says it really is a long haul. I remember noticing Dad was losing abilities when DS2 was born, that was 9 years ago. It is hard to live with this hanging over us, but we have to make the best of things and our kids are of course so important. I hope all are coping well with exams. DS1 is in year 8, he has tests at the end of the year. He is the less academic DS and needs a little help so I am coaching him in science once a week (I want to increase it to twice a week, let's see if he goes along with it). SPT I hope things continue to be as settled as they can with your mum. BTM it must be hard to hear, but as you say your mum cannot go home. The loss of abilities and independence must be hard for the person , maybe sometimes we forget about that because we think of the impact on us/ the child and it's too sad to think about . :

She sounds similar to how my Mother was BTM. I think mental restlessness is a part of it - maybe a bit like when stressed not having enough focus to read a novel? And there's a level of frustration at their situation and not understanding really why they can't be at home, despite being told time and time again. I think you're right BTM that she would be the same anywhere, we found that.

I'm ok thanks. I do find it hard as there's been a huge deterioration since the end of January when she was still mobile, I had a conversation with her, she could still remember things, feed herself etc. I think my Brother thought it would be the cancer that finishes her off but actually currently end stage dementia seems the biggest issue.

Glad the DD's are doing better. Mine is on a count down to the end of her course and working to get her final projects in. I think she doesn't mind it too much now the end of her course is nearly here. Still getting stomach migraines but coping.

Thanks SugarPlum, that's very reassuring. It's a horrible disease, isn't it?

Glad you are OK and your DD is coping too. Then it will be all change for you!

Hi all. Tilly I realise you are miles away- a friend paid a carer via age uk to take his dad who was in a home with dementia to the pub once a week. I remember the mental restlessness with mil- she could not settle as she developed dementia. Really hard to watch. Take care. It is so hard

Thank you! Maybe I should investigate whether I could find someone to take her out. Not sure whether that would necessarily be the answer though if she doesn't already know them - I think she could be very distrustful and suspicious (dementia nurse said this was how she presented last time) but it might be worth a try.

I've found that though my mother does not have much short term memory there is some emotional memory. so her mood is lifted if she has a chance of scenery. We are lucky in that she lives in a seaside resort so sitting by the beach and watching the world go by lifts her mood a lot. I was also lucky in that I found a cerer who she sees as a friend not as a carer, so is happy to go out with her. The carer sometimes takes her out to the park with her own grandchildren to do things like feed the ducks, providing a certain level of irony as my mother was never interested in her own grandchildren. But hey hoo.

My mother is both better and worse at the moment. On one level the decline continues, on the other she is happier. Part will be that restlessness seems to decline as the dementia progresses. Part may be that she is now on antidepressents. Or it may be down to the fact that her new community dentist discovered she had an absess, which presumably she may had had for ages, and so removed the tooth. Or more probably a combinatin of all three.

Oh gosh, that sounds bad - having an abscess but not being able to tell anyone. But good that she is happier, NMS.

The dementia nurse is due to visit DM in 3 weeks - perhaps she will think she needs AD's if DM tells her that she would like to "just die"? Perhaps that might help

I suggested ADs to both memory clinic nurse and GP on the basis that it was worth a try. DM, not unreasonably, just wanted to die and saw no point in carrying on. It was difficult to get her out of bed in the morning. The idea being that if they did not work and made things worse they could be stopped.

She had a few initial weeks of being very tired but is good now. The absess was a bit of a surprise. I had one once and felt quite ill. So perhaps that is part of the reason why she is feeling better now. I really don't know so will continue with the ADs.

Plus continue with someone taking her out to give her a change of scenery.

Glad it is easier NMS. Not surprised she felt rough with an abscess .

BTM it is hard when they say they want to die, it seems to generally pass though thankfully.

Call this morning from Brother who had taken her to Dermatologist. In the last few days two patches of cancer have broken out on her face so apparently it has now crossed the midline. He touched her legs gently and they feel hot and she winced so they're about to flare again. Dermatologist wants her off the antibiotics she'd been having to keep legs under control and let nature take its course.

He told me he thinks it will be a couple of weeks now. I'm not sure he's right as he hasn't gone through the whole dying thing with anyone before so hasn't seen how protracted it can be for some people but it is clear the is now the final stages with infections setting in.

Sorry to hear this SPT. And sorry to hear your family is going through this again, after your FIL's prolonged death. My mum died v suddenly at 54 which was horrendous, at the time I didn't realise drawn out deaths are so tough too. I'm glad that at least she isn't isolated and has family near her.

SugarPlum, it must be draining for you all. I hope they are able to give her drugs to make her comfortable while you all wait for it to play out.

NMS, I think I will try to speak to the Dementia Nurse before she visits to give her the heads-up and ask what would be best, thanks.

Thank you Bob. That must have been incredibly hard for you with your Mum I'm very fed up of the drawn out thing at the moment I must say and though I obviously don't want her to be gone it is for the best now. I can't quite imagine a time when I won't wake up and immediately grab my phone to look at emails but guess it will come,

May I just vent too?? It's not me who's caring for an elderly relative, but my mum. I'm so worried about her. My nan has many ongoing problems at the moment & currently needs visiting every night & 3 hospital appointments a week, my mum gets up at 5.30 to go to my nans & take the bins out for her. She pops in every morning to bring her the paper etc too.

Now my mum works full time mon-fri 7am - 6pm. She has two young children too who she needs to be around for in the evenings. Believe it or not she has 2 brothers & a sister who are all capable of helping but they don't.

I'm so sick of seeing my mum bursting into tears & looking exhausted. She works so hard & probably has the most difficult job out of the siblings & the longest days & the youngest kids.

How does this get better? as it is I'm covering her job for all these appointments so it's having an impact on mine & my sisters life too.

It just breaks my heart that in tough times they can't all just pull their weight. My mum has reached out to them. Often crying & pleading for help as she's struggling. She sent a kind text to her sister along the lines of....if your able to help with any appointments that would be great. Mum often talks about not seeing you so she would really love you to be around too. So far not a message back.

My mums one of those who would help anyone, but it's taking its toll. She argues with her partner a lot because he gets home at 6.30 & she's straight out the door till 8.30 then it's back home to tidy up.

Does anyone else have these problems with siblings? Obviously she doesn't want to upset anyone as my Nans not getting any better & she would hate for something to happen to nan & there to be a big fall out with siblings.

I'm just so upset for her. It's not fair & its having a huge impact on her own family. It makes me quite cross.

Sorry that I've rambled on. Just really had to get this out there. Feel better about writing it already!

Thanks X

So sorry for your mum Loulou. I am an only child, so no experience of siblings not doing their share, but I know others on here have and I'm sure they will have some good advice. It's not uncommon at all, sadly

Thanks big Tilly. Gosh it must be so hard when there's one of you! How do you manage? Have you got your own family too?

Well, I'm not sure it's any harder than having siblings who don't pull their weight!

Actually, as my DM is 200 miles away, I don't have to do anything on a daily basis. It was very stressful trying to get up there and manage things over the last year when her dementia got diagnosed (v late!) and then she declined so much that she needed to go into a home, but now I know she is safe and looked after, it is much better. And yes I have 2 teens, currently in the exam season!

Loulou, your mother can't alter her siblings behaviour, nor, probably , can she alter her mothers behaviour or needs. What she can do is consider her own needs and her ability to set boundaries. She will be of no use to anyone if she burns out.

I would suggest she goes to her GP and say she is exhausted, stressed and so on. With luck she will be offered counselling which will be an opportunity to gain a bit of perspective. The old saying about if you are in a hole you need to stop digging.

There are no easy solution. I would suggest, aside from seeking a sounding board that allows her to acknowledge how exhausted she is and to seek options, you:

1. offer a defined and regular amount of help.
2. speak to her partner about what day to day help he can give her
3. go through what she does quite ruthlessly. Could a neighbour buy the paper. Could it be delivered etc.
4. Speak to Age Concern or similar, and social services, about what help might be available locally. Attendance Allowance, Carers Allowance, a volunteers visiting scheme, day centres. Spend the money. A cleaner? A pre-booked and dedicated taxi driver to take your nan to places. Your mum cannot do it all. She needs to step back a bit and your nan needs to accept others. Though not easy. The key word is "carer breakdown". They really don't want that.
5. When you have a plan you speak to your uncles and aunts. Will one take charge of the finance. Would another have her over for Sunday lunch. Accpet that they won't do as much as your mum. Explain that your mum ison the verge of being very ill, and see what they will do, and don't expect more.

Brilliant advice from nms. Boundaries are key and changing anyone but yourself is impossible.
Getting help in is key. Good luck.
SPT hope your mum is comfortable. Hi to all.

Horizon this evening well worth watching.

I finally saw that programme on Catch up SugarPlum - it was interesting!

Well, I spoke to a carer about DM and apparently she is eating and drinking fine but is being quite snappish The Dementia Nurse said she will bear it all in mind when she goes in, but her gut-feeling (which is mine also) is that she is not depressed but fed up. And that this is not at all unusual for people in a similar situation.

Loulou, how is your DM getting on? One of my colleagues' husband is in a similar way to DM, but he is at home with her. She is completely overwhelmed ATM

Fed up seems like a logical reaction to be fair, think I would be. I'm worried about this morphine, she was in pain so carers asked for it to be increased. She's on tablets now rather than patches but I don't know the dosage and I read that Thai people react differently to morphine and need lower levels so doctors geared to that, no idea if true.

I'd feel a lot happier if an IV line was an option but it won't be as only given in hospital. I worry about how they'll get it into her if she can't swallow and that we might be not giving her enough to alleviate pain as she can't speak.

Just watched Angela Ripon on dementia, with very mixed feelings. My dad, who never drank or smoked, was physically and mentally active, slept at night, and whose parents lived into their eighties without dementia, has severe Alzheimer's. So while it is all very lovely recommending 'lifestyle changes' to prevent it, mostly it just makes me cross. Likewise the inevitable interview with a sharp as tacks centenarian, holding her up as some sort of example for us lesser beings to follow. None of it is much help for those of us with family who have already gone beyond the point of being recognisably themselves.

And the Splendid woman with early onset dementia using her iPad to show her how to make tea rather presupposes an ability to remember how to use an iPad.

I suppose all discussion/awareness is good, but this all seemed terribly smug to me.

Avenging, I didn't watch it for precisely those reasons. I find the AS ad campaigns with the 'living well with dementia' hard as mum doesn't live well because she can't understand any of it. Ho Hum.

Sugar, there is a pain scale for people with dementia somewhere which helps to establish if someone non verbal is in pain. I can try and find it if you'd like it?

My oldies are doing really well atm (frantically touches wood). A daily visit from the district nurses is working wonders for their general health, and they get a thorough check once a week for sores/ulcers/feet.