Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

My mum refuses to sign a Respect form because it says she has Alzheimer's and she is adamant she doesn't and no doctor has ever said so. It was confirmed via a brain scan which she forgot about immediately.

I think some medical professionals become divorced from the reality of outcomes of treatment. They do a quick ward round after surgery and are never seen again. They dont see the reality of physio provision. They dont see the impact of GA, repeated UTIs, delurium. They see that the patient survived the surgery and count it as a success.

I really do think that as a society we should normalise talking about the realities of old age in a balanced and open way. Depictions of old age seem to always be either spritely elderlies living independently and having the time of their lives or poor bed bound people in care homes. My experience is that most people spend years somewhere between these 2 extremes. I think if we discussed this more openly and in more detail we'd find more sensible and dignified solutions to caring for elderly people so that families don't feel forced to sacrifice their own health and wellbeing to try to keep their elderly relatives at home no matter what. I firmly believe that if we had more open discussions about these things quite a lot of us would choose to make and Advance Declaration of our wishes re treatments at an earlier stage, which would prevent many people from being kept alive in circumstances where if we could have been asked we would have liked to be allowed to pass.

Two deaths to contrast - my DAunt who had vascular/ Lewy Body dementia was snatched from the jaws of death with bronchitis in hospital, treated with ABs and oxygen. She was already incontinent, spending a lot of time asleep, and when awake crying out and shouting « Help » a lot, bed bound and miserable. She survived long enough for four more hellish months in a care home before a stomach ulcer burst and she bled to death quite suddenly. My DM was her next of kin and I believe gave the OK to treatment when she had bronchitis. Fool. Those last four months I wouldn’t have wished on anyone. She was 85 when she died.

On the other hand, our neighbour, who had always enjoyed a glass of red and had a glorious life, had a stroke and was in hospital for rehab for some time. He hated it, and eventually fought it enough to be well again and discharged. We saw him one bright November day, back to his old sociable self, just returned from walking the dog on the beach. That night he had a massive heart attack and dropped dead. 82. That’s the way to do it.

Sadly it’s hard to choose. MIL is actively dying at the moment. She’s now sedated and sleeping and it won’t be long. I’m glad she won’t be confused and in pain for much longer.

My DM just had a scan on her liver because she gets intermittent pain in her side and a touch of jaundice (which has now gone away again). The pain is probably diverticulitis. She’s 89 and already has heart failure slowly progressing. I don’t know what they’ll do if they find something. She was complaining about having to go to the appointment on the way there (I driver her). I said she could always choose not to go. She immediately changed tack and said we’re lucky to have the health care we do. I think she a
wants to live forever and it’s driving me nuts. Even though she saw how her sister suffered.

A few weeks before she died the care home phoned to say that they had noticed a lump in MILs breast and what did we want to do. DH had the impression they were relieved when he said nothing. I suspect we all know people who would have been furious if they had suggested doing nothing even though she had advanced heart and kidney failure.

@teaandbigsticks sadly despite all the evidence some people believe they will never become infirm. I was having the conversation with DH at dinner time about having an advanced directive and the idea of no invasive medical treatment post 75. DH said that was fine but he would set his for 85. He is currently doing more visits to my DPs than I am, he knows what extreme old age looks like and yet he still thinks it won’t happen to him. I have said fine but I am not staying at home to prop him up and want to go into a care home as soon as I can no longer look after myself. It’s easier to deny the reality than face it head on.

This is something I’ve had to think about too. I went with the vaccines using the same rationale as your sibling - mum is in a social setting and so (imho) has social obligations to protect the others in her environment. When she was at home and it was a military operation to get her out of the house to the doctors I didn’t bother, as the only people she saw were DB, me and her carers.

Plus, she was always very much in favour of vaccination, being of a generation that saw so many people become ill and suffer life long consequences of diseases that are very rare now - two of her aunts died of TB for example. She thought vaccinations were a marvel of modern medicine and was first in the queue when the first COVID jabs were rolled out. So as LPA holder acting as per her expressed wishes I went with it.

However, a decent bought of pneumonia wouldn’t be the worst way to go, so should she get a chest infection we will not be accepting antibiotics.

I do wonder if we're wise to accept/encourage vaccines for our elderly relatives who are in care homes, on the grounds that we're therefore protecting the other residents.

Let's consider this: the other residents are there because (on the whole) 90% of them have dementia and the other 10% have very high nursing needs, making them fully dependent on others.

Wouldn't these people therefore be relieved to get flu or Covid and die anyway?
The staff are all vaxxed themselves so don't need to be considered.

My DF (nursing home) had the jabs, he still has capacity and so we don't have to make that decision for him yet. But in his case, he has never had covid, never had flu as far as I know and despite being fully dependent has no dementia and actually does have a pretty good quality of life. As it seems do some of the others in his home. But he was in hospital for 12 weeks last year with a spinal injury and has expressed the wish not to go back unless it is an "easy fix" so for example he went back for a couple of days recently for some bleeding issues as he's on thinners, had to come off them and is then at high risk of stroke so can only come off them in hospital and he was ok about that.

Interestingly, not all the staff in DM's home are vaxxed (though they could choose to be) and I don't feel able to judge the whether other residents would choose to die from covid. But I would choose not to vaccinate DM anyway.

My advanced directive is in my GP notes. I worry though that it’s not in my hospital notes - some areas have a much better connection between the two sets than we do here. I’ve written once to the hospital about this but no response - better try again. I’m
sad they haven’t bitten my hand off tbh. The risk is all the early lifesaving decisions made in A&E before GP contact is made.

Hi everyone? Can I join? Im an only child & dad had me later in life so I have had “elderly parents” since I was 36 - I’m knackered 😆 Dad passed away from dementia 3 years ago & now I have mum who has several serious medical issues - she has been blue lighted into hospital twice in the last year (previously it was 8 ambulances in 18 months - terrible times)

I have got her a blue badge, all the benefits etc - that was hard work too

Her health can spiral down so fast - she has a “normal cold at noon” in an ambulance by 7pm as she has COPD & lungs stop working

I’m wondering how many more times her poor body can bounce back & how many more times I can deal with her almost dying - I jump at every phone call, assume the worst & then we have another Lazarus moment - utterly exhausting

Welcome @Senttotestus( ha ha I initially misread your user name and thought it was senttojesus ) to the club nobody wants to be in. That sounds tough. What age is your DM, is she at home or in a care home ?

That made me laugh too! I’m here to convert you all!

Mum is 80 & has a lovely apartment with great neighbours - I hope she can stay there forever - I just need to find a way forward that doesn't leave me feeling like a complete looney . In fairness I don’t think you should be able to think your parent is about to die multiple times without it taking its toll

Welcome @Senttotestus to the club no one wants to be in.

My DF is the same age with end stage COPD so I understand the endless hospital admissions and the toll they take on you. Just having a place to talk about how it impacts on you without judgement helps.

This week I am fed up with healthcare providers creating extra work for me by their incompetence and their completely unreasonable expectations.

District Nurse saw my DF for his pressure sore the other day and the judgement pissed me right off. She called me and I was in the middle of my counselling appointment so I ignored the call, then she called the landline and DH answered. I told him to say I was busy and to call back in half an hour and she got annoyed with him because I dared to not answer the phone and be busy. I could have been working for all she knows. I mean how dare I have a life that doesn't revolve around DF?

That was after judgment from the doctors and care agency/carers about DF's medication overuse/errors and decline in breathing, none of which is my fault given that the GP/hospital/respiratory team ignored what I was telling them about my concerns at multiple appointments before his hospital admission and then the hospital messed up the medication on discharge.

DF chose to not go and seek medical help when I wanted to take him and cancelled the ambulance I called, so his breathing got worse and the pressure sore is likely because he refused personal care from staff in the hospital and then keeps sliding down when sitting so has created shear on his skin. He also refused a pressure cushion offered by other healthcare professionals until very recently when I purchased one for him. He apparently has capacity to make the choices, so why do they not talk to him about it then?

But apparently it will all be okay because DB will pay for me to go on a spa day (that I don't have time for) instead of actually coming and helping in person to take some of the burden off...there are no words.

Nice to (virtually) meet you @Senttotestus . My DF also had COPD- you have my sympathy, it's an awful disease. I think towards the end my DF was constantly uncomfortable and tired and didn't really know what he wanted. He said he wanted to feel better but would also turn away carers and refuse things that might have eased his symptoms.

@Choconuttolata Know it all brothers are a delight aren't they! My B (definitely not 'D' B!) currently has DM saying with him, as she refuses to step foot in her own home unaccompanied as she believes there are people there who will harm her. Which sounds very kind and I will be entirely honest, is not something I will commit to. However, although she is in his home he will not take any responsibility for her healthcare or really anything that would involve having to get her out of the house or any planning. His house is not suitable for her (neither is mine, which is part of the reason I won't move her in with me)- she doesn't have a bedroom and can't shower etc there. So on top of organising and taking her to all her (many, many) medical appointments and dealing with all her finances and household admin I now have to travel over at least once a week to take her to her own home for a shower, do her washing and collect clean clothes etc for the next week. Since she is not (currently) paranoid or hallucinating when in his home he is adamant that she is absolutely fine and refuses to allow me to organise an updated needs assessment for his home. Neither of them will discuss plans for more sustainable care/living arrangements as 'it's all fine for now'. From the take-away containers and cigarette ends in her bin I think he's probably been disappearing to DM's house for a break from his own family and leaving her with his DP.

@teaandbigsticks there is really nothing you can do is there except watch the car crash coming up ahead when B's wife decides she is not babysitting your DM anymore and gets fed up with him not being there for her and the kids. All you can do is stand firm on your own boundaries. Something I am working hard on getting better at doing!

It's very interesting to read about many people's views of their own health future. I'm planning to set up an advanced directive myself after watching my DF die in his early 70s very slowly with a lot of interventions. He never complained or expressed any wish to die more quickly, but I don't want what he had for myself. I worry though that my DH might have the ability to overrule it if I am unable to state my own opinion. DH is very much the sort to treat and hope for full recovery until actual death (and then quietly blame the doctors for not doing enough).

I had a diabetic ketoacidosis about 18 months ago (it was unexpected as I have type 2 that is pretty well controlled). I was in the ICU for four days and it was deeply, deeply unpleasant and once I got out recovery took me months. I was only 57 then and I'm glad that I was treated and didn't die, but if the same thing were to happen to me in my 70s then I think there is a strong possibility that I would never fully recover but the doctors would still keep treating because that's what they're trained to do. That's the exact sort of thing that I would want the advanced directive to cover, but I'm pretty sure that once I was unconscious DH would call an ambulance and it would all spiral out of my control and nobody would think to consider my advanced directive until I was already at the rehab stage.

That Times article was very interesting, but I already have a lot of medication and I'm not even 60 yet and I don't think I would just stop taking it, most of it is to control my type 2 diabetes so it's not like I would drop dead quickly. I would continue to live but just feel really shit, go blind and have necrotic toes (delightful). My DF was on dialysis and I think I would probably refuse that once I'm over 70 if it was needed as it's miserable to have and I think decline and death would be reasonably quick.

This point of view is very hard to talk about in real life as people get very freaked out, and I worry that if I ever mention it to a medical person that I will end up with a psychiatric review because it sounds sort of suicidal, although I'm really not at all suicidal just want to live well and enjoy life until it's no fun anymore.

I wondered if I could join? being driven round the bend by elderly parents who just seem to assume everyone is going to do everything for them. No professional help needed here is their rallying cry.

God I’ve just found this thread. I’m going through a nightmare with Mum, she was admitted to hospital on 28 Dec and is still in.

Due to osteoporosis the base of her spine has collapsed and has affected her nerves. She’s been on meds for osteoporosis for 20 years so god know how bad she would’ve been without it.

If she gets home it will be with an enhanced care package as she’s double incontinent.

I live 400 miles away which just complicates everything.

Welcome to all the new customers. Make yourselves at home, help yourselves to cake/tea/gin as needed.

Spent the afternoon with DM. She was asleep for practially all of it. Woke to drink some tea which had to be fed to her. Other than that she slept.

Had a chat with the nurse on duty. His view is that DM's dementia has advanced in the last few days. DM is now on palliative care. There is now going to be a discussion on when DM should move to end of life care. I'm not sure what the difference will be.

DM's GP is being useless. They took blood for tests but it seems these have got lost in the system. It happens but no initiative by the GP to repeat the tests.

Do you think the tests are worth repeating @GnomeDePlume?

In my experience palliative care is the last 12 months of life and end of life the last hours but may be worth asking what they mean by it.. if it makes a difference.

It is really hard to believe my mum can continue much longer in the state she was in on Saturday - no recognition, accepted a drop of juice on a spoon but I’m not sure she swallowed it, hands curled into fists - and yet somehow she does. She was constipated as well, so looks like she is actually in pain, which is thankfully rare.

Welcome to all… @Barney16 that sounds too familiar - welcome to the Bad Daughters room where we say unacceptable things like ‘how is that going to work then, considering you haven’t done X since 2005 and the last time Dad did it he ended up in A&E?’

Welcome to all newbies. Sounds like we need more space in the bad daughters room. Seeing as the good daughters room is never used should we just knock down the wall. Deliveries of cake/suitable beverages have been increased to daily so no need to worry about running out.
Chez Countrygirl we will enter our 12th year of elderly parent angst with no end in sight so can vouch it's a marathon not a sprint. Tips from experience

1. always have a glass of non alcoholic beer/gin/whatever around 6pm. Then evening phone calls that aren't real emergencies can be batted away with I've had a beer G&T, no need to mention the lack of alcohol, but real emergencies can still be attended.
2. don't be afraid of saying no so you can have time and space for yourself and your own family. This especially applies to relatives (especially brothers) who are keen with instructions but less keen on action.
3. outsource whatever you can and concentrate on being family. I've got a brother who thinks I should be available 24/7/365 at the drop off a hat, do all the cleaning and gardening, appointments, that mum shouldn't need to pay for anything because I'm "on the spot" and I should be doing it. I live an hour away and according to him all my decisions are wrong anyway. He moved from 10 minutes walk away to 5 hours away a few months after dad died knowing mum has Alzheimer's, but that's his right apparently. I've blocked him. He doesn't think sitting with mum reminiscing about dad, taking her on outings etc as doing anything.

Happy Monday everyone!
Dearest Sister went to visit DER on Saturday so I got to go swimming and crunch through the to-do list. DER called me last night wanting to be collected and taken to a hotel. He doesn't want to wash and the carers insist he must. He wants to go to A&E and keeps asking the carers to call an ambulance, and they keep telling him no. He has appointments for all his ailments, but disregards the advice. He is fixated on getting out of the care home.
I'm trying to think up distractions but I have to go to work. Dressing up smart today to cheer everyone up, best face forward.