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.

I'm very glad to have found this site.
DM is 87 and until the last year was very independent. Her best friend field and she's gone rapidly downhill, lost so much weight, memory failing and is on her third hospital stay in 9 months. She had carers 4 times a day since January but fell downstairs in the night and lost a lot of skin from her shins. Blood everywhere and we had to get specialised cleaners in...
Anyway, she's been in for 5 weeks, got pneumonia after 2 (despite junior doc telling me she was medically fit yo be discharged when she could hardly even walk to the loo) and has now developed a pulmonary embolism.
I've persuaded her to come and live with me when she eventually gets out but I'm starting to wonder if that us ever going to happen. It's not really what I'd want if I'm totally honest, but what else can I do? Dad had to very in a home for various reasons but I couldn't do that to mum, she's just very frail now. And sitting in a chair all day with no stimulation and very little stimulation fron the hospital staff doesn't help.
Not expecting any answers or magic wands, just relieved to be able yo talk to people who understand.

Not much to say other than old age is wretched. real sympathy. One really hard thing is to work out, after a crisis, what level of care is needed, or what level of independence is possible. If she is able to be discharged she will presumably keep "getting better" to a certain extent. You don't want to then underestimate the future level of independence, but wont know what level she will eventually achieve.

Respite, either at your home or at a specialist home may be a possibility. My mother stayed in rather a plush place on discharge from hospital and made great strides physically. She had not been looking after herself on her own. This then allowed us to decide what next steps were possible. Luckily she has been able to manage very sheltered so we did not have to move her to a home.

Oh KatieKaye that sounds hard. I totally get the feeling of doing something you don't want to do but doing it because you feel you have to. I'm not in the position of having to take in elderly DPs to live with me, I'm not sure how I'd cope with that. In fact I don't think I would, tbh. I think Needmoresleep is right about needing to assess the level of independence your DM can achieve. I wish you luck.

I'm currently struggling to cope with the constant despair shown by my DF, & the constant anxiety DM has about pretty much everything. DM had a procedure to try and reduce her back pain at a private hospital last week. When I asked her yesterday how her back was feeling, she said 'well, um, moderate' and then went on to tell me at great length (45 mins non stop) all about her lack of bowel movements. Much as I love her, I really, really don't want to hear about how many times she's been to the bathroom, what happened in there, what her backside feels like, what gurgling noises are coming and going (really sorry if that's TMI). And by the looks of it my DF has had enough too. She knows he has, which makes her even more anxious about him and his health too. It's a downward spiral.

When I arrive at their house I steel myself & hope against all hope that they have the tiniest bit of a smile, look pleased to see me, have something positive to say - but they don't. DF is either sitting at the kitchen table with his head in his hands, or wandering around looking as if he's about to burst into tears. DM is invariably in bed either because her stomach is hurting or she's anxious about doing too much & making her back ache. Now that the back pain has reduced in one part of her back, she's concentrating on the pain elsewhere, and I mean really concentrating on it. It's emotionally absolutely bloody exhausting for her, and DF.

Underlying all the immediate aches & pains is DM's bone marrow disease that will limit her life expectancy, but we (& the doctors) have no idea how long she has or what quality of life she will have. She needs to make a decision soon on chemotherapy. But she hasn't even read the leaflet about her condition, let alone the leaflet on the chemo to treat it. She's terrified of what it might say. And DF doesn't help by saying things like 'the list of possible side effects (of chemo) is absolutely awful... just awful" within her earshot.

At the moment their life is just rubbish. It seems as if the only things they are doing are in preparation for DM's condition worsening and her eventual death. Wills, probate, financial affairs, paying medical bills, attending appointments, ringing the GP, getting the district nurse out. And it makes me so so sad to see them like this. I want to fix it. But I also want to run away. And I can't do either of those things. It feels so bloody unfair.

To top it all DD has just presented me with a bundle of school letters at 10.30pm along with her lunch box and PE kit which all needs washing for tomorrow . And DS broke his glasses putting them on a few minutes later. Oh joy. Too late for , so time for bed.

Oh PingPong it doesn't get much more sandwich generation than that. Old age can indeed be wretched, but sometimes the monotony of the elderly and their symptom fixation can be very trying. As I type that i know it sounds horrid, but there it is. I think of my grandparents. Gran really quite stoical and basically positive about things till the end despite being housebound for the last year of her life, grandfather more and more depressed, apathetic and downright in existential despair towards the end. It was painful going to visit him and even though I had to fly to France to go and see him, he barely looked at me. Not blaming him at all, what he had to put up with was horrible (parkinson's, cancer et al) but boy it was soul sapping.
re your mother, I can't help thinking that a skillfull GP or palliative care doctor could maybe get a better handle on her symptoms. Palliative care is not just for the dying but also for symptom control. Altho realistically, she might only be able to access a palliative care specialist during a hospital admission.

Thanks bob - you hit the nail on the head - it's soul sapping. Dad has tried to be stoical but has had enough. When SS came to assess them for continuing health care, they didn't ask him any questions at all about how he was getting on which he found very distressing.

Had a good cry last night and a heart to heart with DH this evening. He's been through the mill a bit this year as his father was diagnosed with liver/stomach cancer, but now in remission we think. So glad my parents are no longer in France - mum was airlifted home in August - the cost and disruption must have been immense for you.

Re palliative care - I thought that she was going to get this via MacMillan. Mum's hospital discharge notes said 'referral to MacMillan' within 3 weeks of discharge, but it must be nearly 6 weeks now & I don't think anyone has been to see them. She has regular blood transfusions in the hospital's MacMillan Unit as an out-patient, and has an appt there this week, so I'll remind them to ask about home visits. She hasn't got cancer as such, but the treatment for her condition is transfusions and chemo, and it's common for it to develop into leukaemia.

Yesterday was a busy day. Flu jab, memory test and more. They have changed the format of the memory test. Previously my mother had only been a point or two off normal. Misleading as today she will have not recollection at all of what we did yesterday, and will claim she has not seen me for months. Now if is much lower though her memory is not much worse (yesterday was a good day) and the things she failed on, were things she would have failed on 2 years ago. She remembered a lot more animals this time as well!

Memory tests will also be once every year, not every six months. Again fine given the very slow pace of decline. To be honest now we have the diagnosis, and hence acceptance by all that there is a problem, plus confirmation that she tolerates Aricept, the tests have become pretty pointless. I assume the decline remains gradual unless there is a major event like flu or a fall.

The really big difference is that my mother now has a carer who she likes, and one who takes responsibility. So many would simply dash in and out (and we were paying for more) not checking on hygiene, whether anything was going into the laundry or whether the milk in the fridge was in date. My mother is happier, looks better and I am not having to undertake a 5 hour round trip every week.

So all good for now. It seemed worth celebrating the calm before the next storm.

Pingpong - I'd def push on the visits, and highlight her need for improved pain control. Theres no need for your mum to be in pain, it just needs someone to sort it out and keep trying to get it sorted.

Needmoresleep - I think I've said before that my mum scores as having dementia, but not badly on the MMSE, but appallingly on the MOKKA test. Brilliant that your mum and the carer are getting on.

My dad had a day of trying to work out his terrible breathlessness, this time with a nuclear medicine heart scan to look at his heart muscle. They usually make people walk on a treadmill after the injection, but didn't with him - I guess seeing the state that he gets in just walking across the room was enough!
Mum had their cleaner with her in the morning, then the carer popped in a couple of times to check on her. I'm very happy that dad sorted all that and is accepting she can't be left for long after his last appointment where she panicked that he wasn't there

NMS it's good that your mother has a decent carer now. With Dad we have so far been through 3 agencies (1st one lasted 2 weeks and bailed out, second one were rogues and finally this lot are fairly solid and one in particular is very dedicated and I was touched when she told me she'd taken dad into a local church to play the piano for him). Went to visit Dad on Saturday and it was good to see him less aggressive and agitated.I think his better blood sugar control has made a difference there. Bro showing some positive signs- going to college one day a week, wearing his glasses again and meeting up with old friends.
Ping Pong I agree with CMOT there must be a way of controlling pain and managing constipation (which is of course a side effect of many painkillers).
Maybe ring the GP for a chase up of the macMillan referral? That is a cautionary tale: insist on referrals and contact relevant people BEFORE discharge home from hospital. As we all know a ward will be desperate to discharge a patient, and you are in a more powerful position to insist on services being set up.
CMOT good to hear your Dad is accepting carers. Sometimes you have to take a bit of a step back and let them realise the need for help.

NMS – that’s great news about your mum’s carer and that she looks happier. It’s so much easier to leave them if they are smiling; it certainly helps me to sleep at night if I come away after a ‘happy’ visit. Hope your calm period lasts a for a good while
CMOT – we’re definitely on it re the visits. The battle over pain vs. bowel problems has been going on for years with mum. Their GP is trying her best. A pain specialist was promised by the hospital pharmacist when mum was in hospital, but I don’t think one ever materialised. They had good intentions, but rubbish follow-up. You are so right about the discharge process bob – it was a complete shambles, mum & dad ended up leaving without seeing anyone. In the end Dad lost his temper and just took mum home.
Just spoke to dad who’s taking mum for her blood transfusion tomorrow. He says she’s looking grey, but the last transfusion perked her up a lot so is hopeful about tomorrow. He’s going to leave her in the unit (it takes about 8 hours apparently) and get on with some admin he needs to do. (Including disputing a parking ticket he got at the hospital a few weeks ago!) I’ve urged him to push to get the Macmillan support sorted, either at the hospital or the surgery.
Dad’s also got involved in sorting out problems with the estate of a great aunt who died years ago, some sort of mistake by the bank who took too much money for expenses. Apparently there were 8 beneficiaries, only one is alive, so as the executor of one of the ones who has died he needs to provide information about them and all the paperwork is either in their house in France or was lost by the other executor… I just hope he doesn’t get dragged in too deep, he’s got enough on his plate already!

Oh Jesus PingPong I wouldn't wish French bureaucracy on anyone (even the French) had to go there after grandad died, horrendous.
It just occurred to me- is there a clinical nurse specialist (CNS) for haematology in your mum's hospital. I work in a haematology unit and the CNS is I would think by far the best person to chase up referrals, they take a more holisitic approach than docs, ours does referrals on to other professionals, help with benefits, emotional support etc.

CNS is a great idea bob - thanks, will mention it to Dad later. I hadn't heard of them before.

The great aunt died in the UK, fortunately, but I'm with you about French bureaucracy. Nightmare! I'm hoping that Mum & Dad won't have any French assets when they die, they're intending to sell their house there as they can't see themselves living there again. Very sad, but it's for the best long term.

How is everyone?

Mum seems better today - smiling and drinking a little - which she hasn't done for months and months. She's still unable even to make herself a cup of tea, but seemed full of chat about family and friends, rather than full of woe. And she didn't have to have a blood transfusion after all, as her blood count hadn't deteriorated, which she was very pleased about. Dad as jumpy as ever, but he did have a cheerful smile for me too.

Feeling as if I've been dealt a body blow today. Mum's been told by the haematologist that they don't think she is suitable for chemotherapy. The side effects are debilitating, & it would only extend her life by 3 - 6 months during which time she would spend 5 days travelling to & from hospital for chemo, 2 days at home, then another 2 days to & from hospital, then 20 days later the cycle would start all over again. She hasn't been given a prognosis of how long she will live, or at least I don't think so, but from what I've read she has just months left.

Her blood disorder will develop into leukaemia at some stage, they don't know when. They don't know how long she has to live. They don't know what her quality of life will be, and are putting the wheels in motion for MacMillan to speak to her about palliative care and she's already talking about whether she wants to go into a hospice or stay at home at the end. I'm desperately trying to take it all in.

Ping Pong, I am so sorry to hear this. Very best wishes to you and your parents.

So sorry Pingpong.Must be devastating. Take care.

Hi PingPong sorry to hear this. It must be hard to come to terms with. I know it won't be any real consolation, but having worked in Haematology for a few years, I have sometimes been shocked at the willingness of haematology doctors to give just one more round of chemo to patients who are frail and elderly and whose quality of life is rendered non existent by repeated appointments, side effects etc. Now is the time for quality of life as much as possible. Wishing you strength.

Really sorry to hear this Pingpong. Thinking of you

Thank you everyone.

I saw Mum & Dad again at the weekend, she looked so well, it was really, I don’t know, odd (?). That’s not quite the right word, but it seemed strange to see her looking healthy when she’s actually very ill. It made it all even harder to believe. She’d had a blood transfusion 2 days before, and was looking a better colour as a result, but it may also have been because she made an effort with makeup etc. DS & the DCs came with me and we had a really nice hour or so with them.

I agree totally with you bob about destroying someone’s quality of life with treatment, and I think Mum & Dad do too. The chemo that they would have used sounded awful.

What’s really upsetting at the moment is how Mum keeps saying that she doesn’t want to ‘leave us all behind’. It’s just heart-breaking. I’m trying to work out how to talk about it to my DCs, but I haven’t got there yet. My brothers know, and I think my Mum’s brother and another of my uncles, but that’s about it so far. So many people are asking about her, it’s hard to respond in a neutral way when I know what’s going on. I’ve had a few moments at work where people have been really kind and supportive – which usually reduces me to tears.

What did cheer me a bit is that the council’s re-enablement team have decided to give Dad a £20 per week voucher to pay for respite care (despite not being eligible for any ongoing free care due to their income), which he can bank & save up to have a whole day ‘off’ if he needs it. Mum wants him to go out and ‘have fun’ but he’s reluctant to leave the house, and said ‘what would I do anyway?’.

I'm starting to think about how we can, as a family, make her end of life as happy as possible and full of good experiences. The way her & Dad's faces lights up when any of us visit is a good place to start.

Oh ping pong. Do check out Macmillan or you local hospice for help and support and to make the days as good as they can be.

Thanks. Mum & Dad are seeing the Macmillan Nurses next week at the hospital. I sat with Mum today and discussed her funeral .

PingPong, how are things? I just wanted to send more

Hi NMS. Things much the same. Had a lovely evening with Mum. Dad last weekend for their 56th wedding anniversary. DF cooked, we ate, drank and got very emotional. DM hadn't eaten well for a few days, but Dad said she ate more

Argh, hit post too soon

Mum ate more than she had done for days, and was still up at 10.30pm when we left, looking tired but happy. Haven't seen them again this week.

Mum's been told she needs blood transfusions every fortnight now, so it appears her condition may be deteriorating, but then again it might be fluctuating and could get better, I have no idea. But dad said the letter home from the hospital said it was going to develop into leukaemia. Still no sign of MacMillan - v busy apparently.

Just checking in. My mil died 2 months ago which was a blessed release- bil just got over from nz. In time to see her. Fil is stable- really seemed to enjoy(??) the get together at the funeral.
Dm is not bad- I did have words with her about moaning all the time which has bucked her up(!!!) and we havevhad some nice days since. This has made her count her blessings a bit!
And dd has got uni applications in with offers now so... A bit calmer. I just realise the stress my dh and dd and I have been under.
Sending and to everyone. Look after yourselves.

Hi everyone, just wondered if I can join in the conversation? I've been reading through and have so much sympathy for everyone you all sound really wonderful.

For me it isn't my parents so hope it's still ok for me to post, it's my grandad. He is 92 and lives with my mum and dad. I look after him sometimes too and visit regularly. Today my mum told me he has officially been diagnosed with dementia, he did the memory test thing and scored only 40. I think my mum expected it, we all did, but she is understandably upset and I don't think I handled the conversation that we'll, I wasn't sure what to say to make her feel better about the whole situation. He has a carer and they are going to up her hours as my mum needs the support looking after him as I know many of you will relate to. I think she is particularly upset that on the memory test he didn't remember her late mum at all. Not even her name.

Anyway I'm glad I've read this thread and I know that it's really my mum who is going through this more than me (maybe I should get her to join !) but thought I might get some advice on how to best help my mum and also my grandad. I didn't realise but he has left the house a few times, luckily my uncle who lives next door to my mum and dad helped him back home but I think my mum is worried about him disappearing while she's at work. I just want to be there for my mum (and dad but it's my mums dad and she does the main caring as she works part time etc )