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.

FIL who is abroad is a cautionary tale for getting POA sorted as soon as possible. He granted it to his neighbour in Jaunary, who has allegedly been bankrupt 3 times. BIL tells us FIL tells him this is what he wanted. But in the next sentence of the email said that FIL was asking SIL whose house he was in (he was in his flat at the time). Complete shambles. So glad we got my Mother's sorted.

Just to report back on dad's dental saga. We finally got to see a max fax surgeon at his local hospital. It took 10 minutes but Dad eventually opened his mouth and let him have a look in (an image of a lion tamer putting his head in the beast's mouth sprang to mind). We decided that since a general anaesthetic would be necessary to subdue him for any procedure (2 teeth really need to come out) , and that it could be disastrous and leave him completely impaired and unable to stay at home, not to do anything for now. It was good to get right to the bottom of the problem and have the surgeon agree with my view. Dad is eating well and not having any dental infections, just occasional pain.

Good to hear you have made some progress of sorts and your dad can eat etc. perversely when choices and decisions are reduced it makes things simpler. Well done for following through.

I'm glad to hear that your dad cooperated enough for them to make a decision Bob.

After some pretty awful blood in dad urine the other week over several days he's just had an appointment letter through for urology to check it out - the end of July! It seems to have mostly settled after antibiotics but still.

Glad he's been seen and you've had the surgeon's opinion Bob.

CMOT, that is a long time

That really is a long time to wait. I have worked in the NHS for 20 years but I am really realising now that supporting elderly people with their health needs is a long game and that a lot of their problems take time to resolve, or just have to be managed and can't be solved. Thank God for antibiotics. Just been listening to a sobering program on Radio 4, title was something like "the day the antibiotics stop working..."
Lately I've been doing Dad's family tree. When you get back into the 19th century, actually even up till the 1930s, there is such a spread of age at death- from zero all through to 80, and lots of people dying in their 30s, 40s and 50s. Not all weighted at the elderly end of life. The reason must mostly have been infectious diseases.

CMOT - blood in urine should get fast tracked; under 2 week wait usually. Would be worth having it queried.

Do you think listening to the same conversations over again makes a difference. As in I called my Mum yesterday. She talked for half an hour, stories mainly from 50 yrs ago I have heard many times before. I called again today as she left a message saying how long it had been since we spoke, and heard the same stories again. I work on the basis she is lonely, although she lives with my brother, so she isn't alone if that makes sense. But she won't remember I called anyway. So it all just seems pointless. Am I just calling to keep my conscience clear?

Not sure there is an answer, and this makes me sound very self absorbed. It's just so bloody futile.

Thanks Miss Orinoco - I think he isn't on 2week protocol as he's on warfarin so they are blaming that. Though the warfarin clinic say that its not likely and they always get the blame.

TBH, bladder cancer would be the least of his worries.

Hi everyone, hope you don't mind me joining the chat.

I've been on the main Elderly parent board with various queries and mumbles, but have also read this every now and again.

You are all so strong and know your stuff.

So a quick (perhaps not) count of what DH and I are dealing with.

MIL has osteoarthritis and a spinal problem (unsure of name) where here nerve endings don't work well. She was mobile but prone to falls up until last May when she was admitted into hospital after a fall that resulted in a 6 month stay as they found bowel cancer and she was in intensive care. She was also diagnosed with COPD and a heart issue. She has a permanent stoma as vowel removed with cancer and a permanent catheter.

She went home needing carers (2 4x a day) and all she was able to do independently was feed herself. She was being hoisted into bed and chair. She was adamant she was going to improve and she would walk again but always had an excuse as to why she couldn't do her physio or was too poorly. She was calling us practically every day, night and day, to come do things for her, from removing a cardigan, moving her leg an inch, plumping her pillow, picking up her remote she dropped, opening a window, making a cup of tea, etc etc. It has been very tiring.

Every month this year she has had an hospital admittance for a chest infection. She is there now, and this time was diagnosed with terminal liver cancer. She now also has a DNR on her file.

Doctors are optimistic, her cancer is slow spreading and she is more likely to die from problems with her chest or heart. They cannot give us a timescale, just stating it could be tomorrow, could be 5 years from now.

During her stay in hospital, we moved her into what was to be her new home, sheltered accommodation with 24 hour carers should she need them.

Macmillan are involved, and the Macmillan social worker has said that she would be much better off in a nursing home, we agree as we think she should have gone into one when she was ill,last year, but as she is fine mentally she is allowed to make that choice for herself. She has stated she wants to go to new place. SW has said it will cost £800 a week to get her nurses in as she needs turning hourly and two hourly through the night. This is going to panel next week, I am hoping they decline it and she goes to the (very lovely) nursing home right near us.

MIL is notoriously stubborn and as long as she is happy, doesn't mind who she inconveniences.

So, in a bit of a long winded post, that's us. Thanks for reading if you got that far.

Hello Orinoco and Rainicorn and a big wave to the regulars!
You both have a huge amount on-echoing the theme that it never seems to be enough and guilt is hard to avoid-and the difficulty of dealing with strong minded elderlies!
Orinoco-do what you can do and dont feel guilty.You cannot make your mum happy. Tough but sadly true.
Rainicorn-that sounds incredibly difficult- huge sympathy and i hope for you the funding gets declined for carers-sounds so tricky and easy to fail leaving you to pick up.Please look after yourself and your dh.

Lurker but this thread is on my watch list - respect to you all for the loving care you give to your parents.

My DM - just 89 - is struggling with heart failure and end stage kidney failure. Too weak to go on dialysis at the moment, although peritoneal dialysis is the aim, but it will involve an operation, and she certainly couldn't cope with a general at the moment. She was in hospital a couple of weeks ago, but they helped the heart failure a little, and then threw her out as quickly as possible - which we didn't mind because she more comfortable at home - she lives with us in a 'granny flat' type of thing.

GP is golden and visited yesterday to say that she needs to be hospitalised to be stabilised ready for the op, if she want to go that route. Such a hard decision for her - and for us to know how to support her. She is very alert and intelligent, so understands the implications, which in some ways makes it harder.

What makes it particularly hard is that it is exactly this situation which my Dad died from - balancing the needs of the heart and kidneys.

Life seems to be one big guilt sandwich at the moment - not enough time for DM nor DD who needs support at the moment, never mind my own work. In a very selfish way, it's lovely to know I'm not alone.

AJ, knowing that you aren't alone is actually the most wonderful support I can have - being able to come here and just offload a bit when no one I know in RL understands (and worse, no one wants to think about it either) is what keeps me going sometimes.

What do you think your mum wants to do?

Hi aj and welcome. This is the right place to seek support, advice and wisdom- and also whisper( or shout) what about ME without being judged!
We are many- and it is hard. Do what you can for your dm- please put yourself and dd top of your list because they need us so much. How old is your dd? Mine is 17, doing a levels and just needing to know she's top of my list- so many months of being shunted down because of dm/ mil/ pil. Take care and rant away!!

I could cry. SS have agreed to pay for carers at MIL's new place. She has rejected an overnight carer though, which means she will be phoning DH and I if she wants to be moved or end back in hospital with a bedsore. She already had a grade 3 bedsore which is healing nicely, but still needs turned every 2 hours.

She is so so selfish and only thinking of herself here and not the stress it puts DH and I under. And yes I realise how selfish I sound.

Oh rain! I am so sorry- feel free to shout at the moon and do whatever- and you are not selfish at all. Would a health professional - ie her gp or anyone else she respects or is in fear of be able to talk any sense into her? So sorry. Rant away. Sorry not to be more help.

You are not selfish. I read somewhere that a famous author had said in his later years, that when you are elderly you are so acutely aware of your vulnerabilities, it all becomes about self preservation.
Maybe it's not like that for everyone, but i observed it with my grandfather. He had no idea of the strain he put me and other relatives under. It's like the part of the brain that controls empathy was gone. I could burst into tears in front of him and he'd look on calmly.
I think a tough line would be well justified- accept the carers or you'll go to hospital and then straight to a care home. Sorry if that sounds harsh.

Thanks.

Macmillan Social Worker has been working with her. Hospital, SW and outselves have told her she would be better suited in a nursing home where all her needs would be met straight away rather than waiting for a carer or nurse. She is adamant she doesn't wan to go in one,Mathis is based on a visit to one with a friend 30+ years ago which wasn't very nice.

I thought she would get declined for care and they'd say she has to go to one. She seems to think she will have a miraculous recovery, be able to walk again and be independent. It must be awful for her to think otherwise, i get that, but she isn't looking at it realistically. All the health issues she has, she is not a well woman. Her brain seems to be the only thing where nothing (yet) is wrong.

I don't know CMOT, whether she feels she has to try dialysis for us when she really wants to give up, or whether she genuinely wants to have a go for herself. She's of the 'stiff upper lip' brigade too, so it's hard to judge what she really feels - although I know she hates the worry her health is creating for the family.

DD is 21 twenty, and has been involved in a pretty unpleasant relationship, which she is finding it hard to get over (why??? how could anyone love such a bastard!!!). He was very controlling, so she really does need our support at the moment.

Rain - sorry your MIL is being so self-centred. As bob says, it's probably because she's not well and not thinking properly, but that doesn't reduce the strain on you. Maybe time to get tough?

Off to bed now - that last hour with a cup of tea and the paper seems to be the only bit of peace I get these days! Night all.

Just to send sympathies to all.

aj is your mum religious? Is there someone like a vicar or priest who could talk things through with her. My mum's priest is wonderful and has already told be she has "had enough". In her case her body is as strong as an ox, so no difficult decisions yet. However when she starts to fail I hope he will give me advice based on what he considers to be her wishes. On the internet it is alright to acknowledge that you might prefer her to avoid a long twilight. But equally you want it to be her decision. If there is someone she can acknowledge her own feelings to, this person may be able to reassure her that whatever decision has the support of her family.

Your DDs situation sounds horrid. My DD is almost 17 and DS 19, and I am starting to realise that there is no sign off from parenting when the A level results come through. Its just different and sometimes more difficult.

And rain, you are as entitled to decide your priorities just as much as your mother is entitled to make ill-considered decisions. You do not have to pick up the pieces. The only advice which is repeated often, is to take a step back and decide what you are prepared to do. Be very clear with both your mum and SS that this is all and that you are not picking up the pieces if things go wrong. Also stress how much support you are providing and will continue to provide. Then if need be wait for the inevitable crisis.

I think sometimes our parents are demanding because they have so little control left, so seize it when they can. If you can be firm and consistent therre is every chance the storm will pass and your mother will accept a new and sustainable situation. The storm is not much fun though. My mother knew how to push all my emotional/guilt buttons.

Really sorry for those struggling at the moment, difficult situations.

Rainicorn, you and DH going out at night to turn her is not a long term sustainable solution -one or both of you will get to the stage where your health becomes compromised. You do not sound the tiniest bit selfish.

AJ, very difficult for you to all go through this , especially having done so with your Father. A Friend's Mother has just been diagnosed with lung cancer and has made the decision not to have treatment. A difficult decision but I think now the decision is made it does bring some kind of peace. It is reaching the decision though.

Twentyten, hope the A levels go well. Difficult time for many households with teens across the country right now. I have stepped right back with my Mother to focus on DD and GCSE's as she find exams hard. DS and SATs have been unexpectedly challenging thanks to a wobbly tooth and being unable to eat. He nearly fainted today and got sent home.

As a result I have stepped right back with my Mother. I did however on the spur of the moment pop in quickly today as had a quiet work day. She thought I was taking her to the Airport apparently. Now she is in a Dememtia unit things are easier as they are equipped to be able to cope with her. Bit of a shaky start but i am pleased with them now. Finally her legs have healed enough to have the bandages off since she has been there - they had been bad since July. Plus physio had got her from being bed bound with various infections earlier this year to being able to independently go to the toilet which has made a big difference to her feelings of well being.

Don't think it is mentioned on this thread but myself and another poster have both had counselling to help deal with the various issues that have arisen from dealing with this illness. I hope she doesn't mind me saying that she feels it was beneficial, I also feel it was too. If anyone has been thinking about doing it I would recommend it. Don't think it is for everyone but can be very cathartic.

Hello all. Thank you spt for your good wishes- one exam down about 12 to go..... On taxi/ feeding/ watching crap telly Rota and searching for watermelon bonbons/ emergency cartridges etc etc...... You are right to step back - sounds like your mum is in a much better state. Our dd's need us! Sorry about the tooth- that can be awful. And GCSEs stress- so many exams! Relentless. Take care of yourself. I would second counselling too- a space to rage against life and find ways to manage it.

Ha ha, can relate to a fair few in that list - strawberry laces replace watermelon bonbons though! When does she finish? Tooth is now out, it came out this morning but think the lack of food (despite best effotrs) over the last couple of days caught up with him, he's looking much better now .

22nd June! Just had a naughty trip to the wimpy for tea......further pure maths tomorrow- eek!