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Elderly parents

Responsibility for Elderly Parents? Support thread right here!

997 replies

Needmoresleep · 01/09/2014 09:08

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.

OP posts:
bambinibop · 08/12/2014 21:40

Thanks everyone

Needmoresleep · 10/12/2014 10:07

Bambini, Please join.

My children are teenagers, but have been very supportive to me and this has meant a lot. I was so proud of my son when he patiently tried to teach my mother how to use a cash point machine. And of my daughter when she suggested she had lunch with my mother on her own.

Dementia is a slow bereavement and also difficult to manage. My mother at various times has thought I was her mother or sister.

Advice:

  1. Get your mother The Selfish Pig's Guide to Caring by Hugh Marriot. It enables a carer to understand that some of the emotions they will face. You might also try Oliver James "Contented Dementia". I found it flawed but liked the idea of not arguing and trying to put yourself in the other person's world, thereby reducing stress for everyone. I also liked the idea of tipping point. Decided in advance the point at which you wont be able to cope any longer, and the reassurance that a good care home with regular visiting can be the happiest and least stressful place.
  1. Its possibly too late to ensure a POA is in place, but do apply for Attendance Allowance, and possibly a Carer's Allowance.
  1. Help your mother as much as you can. One of the more depressing things for me was the idea that my mother might be ill for another decade and then I might be starting to experience health issues. Getting help in place and then making time for yourself is very important.
OP posts:
CMOTDibbler · 10/12/2014 11:13

Hi Bambini, I went through dementia with my grandmother (who died in 2003) and now with my mum.

I agree that although Contented Dementia isn't all good, there are some really good concepts in there. The tipping point is particularly important to consider.

Attendance allowance and the council tax reduction make a big difference, and will pay for more care help. Is there a local day centre that your grandad could go to when your mum is at work? They often also have access to chiropody/hairdressers and even physio assessment. The one near my parents has an accessible bath so those who can't get in the bath at home can enjoy one without their home carers.

MrsMiniver · 10/12/2014 12:04

Its so wonderful to have found this wonderful supportive thread, I am not alone :) Im no spring chicken myself (57) and a single mum to DD nearly 15. My dad (87) was diagnosed with myeloma (bone marrow cancer) 6 weeks ago and has a very poor prognosis. Hes currently in hospital but weve been told he can be discharged home soon (probably to die). Mum is 83 and has a heart condition and possibly kidney problems but is a real trooper and still active. She collapsed last week though and spent the night in EAU so were keeping a close eye on her too. I live over an hour away which makes things very difficult. I have two brothers and although one of them actually lives with my parents and the other is only a 15 minute drive away, the support they offer my parents isnt great. Having dad home will be a relief but Im concerned about mum coping and the support that shed get (am speaking to all the relevant parties about this at the moment).

Am just about keeping sane but am feeling pulled in all directions and having to put my own life on hold ATM. I can see where this is going and it aint pretty. Pingpong, your posts have resonated with me, esp as your mum seems to be suffering with a similar condition to my dad. Needmoresleep, thank you so much for starting this thread.

bambinibop · 10/12/2014 15:15

Thanks needmoresleep and CMOT for your replies, I will certainly have a look at the book suggestions and pass them onto my mum as well. Interesting point about trying to put yourself into their world - the last few years leading up to this official diagnosis my grandad has been getting more and more confused and my mum tends to correct him and this can lead to a lot of frustration on both sides, I suppose now he's getting much worse she may stop this approach and just agree...I never know myself what you're supposed to do!

My mum has always known I'm here to help if she needs a break and when my parents go on holidays or to see my brother I always used to stay at their house and look after him. I'd cook for him, make drinks and chat with him etc. However now, I have a young baby and my mum doesn't want to ask me to stay anymore as she thinks I'm too busy (I would help if asked and have still offered) so she has said they probably won't go away next year. I don't want her to feel like she can't have a holiday. I suppose she will at some stage have to look at getting in more care for him. He has a carer 3 days a week at the moment but they are going to increase this soon.

My concern is she will try to do this all herself and get no break. She has only just told me how bad it's got and it's been like his for a while. She doesn't want me to worry I don't think.

I don't think my grandad would be persuaded to go to a day centre, he is quite anti social and always has been. He has a good carer who he trusts and she can sometimes persuade him to go out to the cafe with her but that's about it. Mum brings him over to me usually once a week so he can see my daughter (he loves seeing her!).

Needmoresleep · 10/12/2014 16:28

Yes there seem to be a few techniques, like not asking direct questions which require a thought out response. So don't ask whether he would prefer tea or coffee but make a statement. I'm putting the kettle on etc. Oliver James advocates avoiding stress as stress/anger and other emotions will make the confusion worse. So don't correct him if he mistakes you for someone else. I know my mother becomes very upset if, as a formerly very bright person, she is picked up on simple mistakes. My mother is not so bad, but if she gets worse, I can see me following his rather manipulative approach. Perhaps suggesting we are on the way to the golf club rather than being honest and saying we are going to the GP. Trying to put myself in my mother's shoes has really helped. So we go out for a coffee, not lunch. Lunch would involve going to a toilet, and she might get lost, not be able to work the locks/flush etc. She likes the beach as she enjoys just watching babies and dogs.

Its odd though. She was quite depressed during the summer. She now goes out three times a week, and though she does not remember the trips her mood has lifted as if she does not feel as trapped at home as she once did.

MrsMiniver, it sounds like a nightmare. I cant offer any advice, other than to say there is a real satisfaction to be gained from knowing you did the right thing. Have you looked at the Macmillan website. There was quite a lot of advice. Even small things like getting a disabled parking permit, so you/someone can park near the exit at the hospital, can help. You can also get an emergency form of Attendance Allowance, which might help bump up, say, overnight care.

I dont know what it is about brothers. Is there any chance of allocating specific tasks, on the assumption that its not that they are unwilling to do things but that they simply can't figure out what might be done.

OP posts:
MinceSpy · 10/12/2014 16:38

Is it okay to share some positive news? I steeled myself to have the 'please will you consider getting Lasting Power of Attorney dear parents?' conversation recently. There were a few tears but with the help of my Dsis we got there. LPAs now being sorted, hope we never need them but mum and dad now feeling more secure.

twentyten · 10/12/2014 16:44

Great advice and support here. Certainly I find the not disagreeing works well and also short trips with limited choices much easier. My mum 89 loves being able to visit a lovely farm shop but finds supermarkets really stressful. Old habits- like talking to butchers- come back.
I second giving brother specific tasks- I have 3 all pretty useless in one way or another!
I really emphasise looking after yourselves- keeping something in the tank and also looking after dc. This is a long haul. BrewBrew To all

PingPongBat · 10/12/2014 17:40

Hi bambinibop Brew - welcome. I don’t have experience of dealing with dementia but as you can see there are plenty on here who do, you are in good company.

And MrsMiniver – I’m so sorry to hear about your dad Flowers. My mum’s condition hasn’t developed into cancer yet but it will at some point. So we have no idea how long she has. IME, brothers just need nudging into action when it comes to elderly parents. They may well be wondering about how to deal with everything and co-ordinating carers etc. Can you home in on their skills / strong points and getting them to do specific tasks which need doing? As the only daughter I’m the one who provides emotional support and time, to both mum & dad, whereas my brothers tend to drop in and out of the picture a bit. I know just how you feel about being pulled in all directions – make sure you take time for you and resist the urge to do ‘just one more thing’, give yourself small breaks if you can.

I have some more positive news as I took mum shopping today!! It sounds like such a simple thing, but we’ve spent a lot of time building up her courage to do it. We hired a wheelchair from the Red Cross, dad & I made lots of encouraging noises, we took our time getting organised, and finally made it to the local garden centre for a browse and a cuppa. Came out with 4 bags of shopping! It was just lovely. I feel quite emotional about having managed to get her out – I don’t think she’s been out to the shops for over 6 months, and she really enjoyed it Grin

twentyten · 10/12/2014 17:50

Great news ping pong! That must have meant so much yo your mum. These times are special. We bought a wheelchair from s charity shop for 20 quid which meant we could get mum out when she was really unwell. Invaluable. Well done.

bambinibop · 10/12/2014 18:13

Lovely positive stories amongst the difficulties
mrsminiver sorry I didn't spot your post just after mine, look after yourself

SometimesSlummy · 11/12/2014 17:48

Hello bambinibop I am also here due to worries about DH's Gran. It is wonderful that you are able to be so supportive for him & your Mum and I hope you can get some help for her sorted. Dementia is so cruel, my Nan had it and my mum would come home in tears as she didn't know my mum was her daughter as she was "too old" and my Nan thought she was only about 25.
pingpong and mrsminiver sending support - my DF is only 66 but has had his bladder &'prostate removed due to cancer and now they have found myeloma too. He is having Padrionate infusions (I think that is how you spell it) and currently it is not getting worse but they have found it in the lymph nodes and in the words of the consultant that is unusual and they don't know what it means. My DPs were very fit but my mother is rather fragile mentally with all of this as she lost both her parents last year and my Dad hates being an 'invalid'(his words). I am glad I have found this thread although sad so many of use are struggling with this and our own children, partners & jobs too.

Needmoresleep · 12/12/2014 11:04

Welcome MrsMiniver, MinceSpy and SometimesSlummy.

This must be one of the saddest threads on MN, yet it is great to feel that support out there and the chance to share some good times.

Recent posts describing how aggressive people with early dementia can be, have helped me realise how far I have come. Eighteen months ago it was awful, with my mum regularly screaming abuse at me. Some of the fight has left her and I have got a lot better at being matter of fact and not engaging in discussion/argument. I am glad I have stayed the course. At the moment its a bit "the calm before the storm" where she is still lucid in the moment and we have been able to have some nice outings. I now know her far better than I did, and indeed our relationship is probably better than it ever was. I don't know how long this will last before she loses so much capacity that semi-independent living becomes impossible and the dementia home becomes inevitable. She does not want it, nor do I. In the meantime I know to treasure the good times.

Much sympathy to those going through bad times. It is so difficult.

OP posts:
MrsMiniver · 12/12/2014 11:14

Thank you for the brother advice everyone, will try and use it! My heart goes out to you all, Sometimes, am so sorry about your dad, he's been through so much. Myeloma is treatable and can go into remission for a long time but isn't curable but I'm sure you know that. My dad seems to have rallied a little and has responded to treatment but mum's heart condition not good and very worried about her too. I just feel like I'm not doing enough and should be there 24/7 but two visits a week and several phone calls a day and managing the hospital etc is all I can manage. I have to keep reminding myself that I live 50 miles away, have a daughter and a job and that I'm doing my best. PPB how lovely that you managed to take your mum out, a little joy amidst the stress and difficulties x

MrsMiniver · 12/12/2014 11:21

Thank you NMS. Maybe with time some acceptance of these difficult situations can come and the ground on which we're walking can feel firmer again. I've become a lot more philosophical through this but am determined that I can still find some joy in things. That's the challenge we all face.

bambinibop · 12/12/2014 15:57

Hi everyone hope you're all doing okay. My mum brought my grandad over to me for lunch today. She managed to get him to the barbers on the way (he often refuses to go but there was the promise of seeing my daughter afterwards!) so he looked very smart. His barber is lovely and has been doing his hair for about 20 years, he trims his beard for him too as he can't do this anymore. He looks much better with a clean shave and tidy hair! Anyway we had a very pleasant afternoon, he absolutely adores my baby daughter and she adores him, she strokes his face and climbs on his lap, a can see how nice it is for my mum as well to see him happy as he is usually quite grumpy!

They have gone now as he gets very uncomfortable on my sofa Sad

What's everyone doing for Christmas? I know it must be quite a hard time as well. We are having family to us including my grandad but mum will take him home early and then she'll come back as he will be quite overwhelmed by it all and will want some time to himself.

SometimesSlummy · 12/12/2014 20:43

Thank you MrsM, I am glad to hear your Dad has rallied a bit and hope your Mum is OK.
I am taking strength from all of your philosophical approach and trying to take the same stance!
Bambini that is so lovely about your grandfather and daughter. DH's nan adores our little one too and I think she really benefits from that uncomplicated relationship :)

PingPongBat · 12/12/2014 21:42

bambini - that sounds like a lovely afternoon – definitely a time to treasure and remember. It’s so important to hold on to that when things are harder, as they inevitably are a lot of the time. But it’s also so hard when all the difficulties are piling up in front of you!

We have PILs for Christmas week… (Shock but they are travelling 200+ miles to see us so we can’t really just have them for the day). FIL had an op cancelled today after 2 days in a hospital 50 miles from home. His oncologist & surgeon (based in different hospitals) can’t seem to agree on what needs doing – whatever happened to co-ordinated care? Hmm). He has liver / stomach cancer (in remission), and a stent in his liver which doesn’t seem to be working properly.

At the moment the plan is to see my parents on Christmas morning, then back to ours for lunch, but ideally I’d like them to come here as they’d be on their own & it may well be Mum’s last Christmas. The only way I might be able to convince them is to have a bed downstairs in case Mum needs to lie down. I’m working on that & am hopeful she will come. It will give Dad a break too.

twentyten · 12/12/2014 22:01

Good luck ping pong- sounds like a good plan. Make sure there is some time just for you too. Treasuring special moments matters.

Allfurcoatandnoknickers · 14/12/2014 18:04

No idea what to do and just wanted a sound off....my mum is 89 and lives fiercely independently. She's virtually immobile with arthritis and somehow gets around with the aid of a frame, chairlift and has four x care visits a day. She's fallen x 8 times in 7 days and as I type is on the floor at home being helped up by her alarm response. She's been told by physios OTs doctors everyone that she's at high risk of falls but refuses point blank to go into care or respite. She wants to stay at home. I am trying everything in my power to acknowledge this, but am increasingly despairing how she puts herself at risk, closing curtains, making drinks etc jobs she can ask the carers to do....
I'm struggling and feeling very stressed my job is very stressful at this time of year, I have a teenager and preteen, an OH that works away a lot, and a sister that is also been pushed to the limit by mum's inability to recognise how we are feeling. We have tried the calm approach, the tearful approach, the p'd off approach, we've got no more cards left to play. Has anyone had similar experiences? I'm sure you must have but I just don't know what to do anymore. We have a POfA but mum still has capacity so she is deemed as having made an unwise decision, so we must sit back and wait for a calamity to happen.

PingPongBat · 14/12/2014 23:43

I’m so sorry this is happening allfur – it is such a stressful situation. Do you have anyone outside the family who can try and persuade her to at least try respite? GP? Neighbour / local friend? If she still has capacity and is refusing to move, then there’s not a lot you can do. But if you’ve found out a bit about where she could go once she accepts that she needs to move, at least you will understand the process & will be able to help it happen as quickly and smoothly as possible. It’s so hard to step back & wait for a crisis, but you’re right - sometimes that’s what needs to happen.

My Mum was ill for months & months before she & my dad accepted that they needed to get her home (from France where they were living) back to their place in the UK. We thought at one point that we were going to lose Mum before we finally persuaded them. It was the only way she could get the co-ordinated treatment she needs for her multiple conditions, be near to her children, grandchildren & the rest of her & dad’s family. 3 months on, & they have told us they can see it was the only sensible decision to make, and are grateful for the hard line we (me + 2 brothers) took with them.

Allfurcoatandnoknickers · 15/12/2014 07:24

Thanks. Sadly we have tried everyone, even her neighbour who is a counsellor and incredibly patient. An OT once said to her that if she didn't accept help she would lose the independence she had. Her answer was to stick her tongue out, so you see what we are up against. It really is like having a toddler, but even my kids wouldn't have been so rude!

CMOTDibbler · 15/12/2014 21:15

Allfurcoat, I'm afraid waiting for a calamity is all you can do. Which is awful, but she's choosing not to listen to anyone. Sometimes by accepting the things like that, it takes the stress out of it a bit.

My parents have been pootling along again, though they are now eating at the pub 4 times a week (one meal between them, except on OAP day, and one meal in 5 is free Smile). Then on Thursday, mums only remaining friend phoned dad to say she couldn't cope with her coming round anymore and then on Sunday mum couldn't get out of the bath and dad has hurt himself in the hour and a half struggle to get her out.

I've had my now traditional little cry about christmas, but found a nice heated furry blanket for mum.

Needmoresleep · 15/12/2014 23:16

Poor CMOT. Getting elderly people out of bath when they get stuck technique:

Drain water and dry them. Then put a bath mat under them and try to hoist them up. If that fails (but worked for me) call emergency services. Then fit a hoist or shower.

I agree though. Sometimes you can only wait for the crisis. I have some sympathy for those who refuse to accept old age, but their choice and not for you then to try to make it work.

Would my mother have been better off falling at home and dying, or, as she did, falling in the street and then facing a decade in the twilight world of dementia. Honestly I don't know.

OP posts:
CMOTDibbler · 16/12/2014 13:15

I think thats what dad did - he had to actually stand in the bath to get hold of her as she couldn't understand what to do. He's called their local council dept that do handrails etc and they will be coming out to sort a bath seat or similar as an urgent job. They have a downstairs shower, but mum won't use it as 'it hurts her head'.

I've told dad to call an ambulance next time, but he worries that if he calls too much they won't come any more.

And now, dad must have knocked his leg doing all this, and 6" of it has broken out into a weeping mess. The nurse has done a 4 layer bandage with antibiotic creams to his whole leg, and will redress on Monday. He's been told to rest, but is fretting about the shopping - which of course I can do online, or their carer will do, but its something he's in control of

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