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.

@GnomeDePlume @catofglory regarding admission to A and E and protocols we got to a point where our DF had an appointment with his Consultant and I went with him, he was taken by transport from his nursing facility. The consultant could see there was nothing else that could be done and suggested to me he would discharge DF as he didn’t want him ‘ending up on a hospital corridor’. I explained this to DF who whilst perhaps confused I always try and assume he understands and that we have his best interests at heart. Transport is cold, the hospital a distance away and there is nothing to be done for his illness that would improve his life.

I also wrote a formal email to the nursing home stating as a family we didn’t want a hospital admission. There was one but that followed a fall and ethical protocol meant they had to check for a fracture.

Any invasive interventions we have specifically asked do not happen.

@Worriedreparents Unfortunately that type of paranoia is very common with dementia. I saw it in my friend's mother who thought she was stealing things and money, it's usually directed at the person they see most often. There is nothing you can really do about it, other than accept it as a stage of the dementia. But there are techniques you can use which may help in the moment, like not contradicting her and showing her the things you've bought for her, and trying to divert her attention onto something else. My friend's mother did quieten down on that subject when she moved to a care home.

@BlueLegume I am with you all the way. I didn't ever have to do all that fortunately - the care home rightly sent my mother to A&E after falls (she broke bones on a couple of occasions) but she never went to hospital for 'illness'. The occasion with the ambulance I mentioned earlier was because she 'had a turn', and the paramedic rang me and said she had either had a TIA or full stroke but that even if they found out which they couldn't do anything as her dementia was too advanced and she was too frail. She would either survive it or she wouldn't, and should be made comfortable at the care home. She already had a DNaR, and he rang the GP and requested the end of life pack. I was in complete agreement.

Sadly she did survive and was back to her baseline within a week or two, and lived another two miserable years.

(Re the thread name, I had my own guess at what it meant and it doesn't bother me, I don't really notice it.)

DF ended up bed blocking for a fortnight once he was fit for discharge after his fall because it was impossible for him to go home, so they had to find him a discharge placement home, fortunately they were able to find one which was accessible (by public transport) for mum. Then once he'd had all his assessments we got him moved to one in walking distance of their house because we wanted to make her life easier and hoped her anxiety would ease off. But she just finds other things to be anxious about and has practically moved in herself, she isn't happy at home without him. On bad days with the anxiety she is extremely hard work and she latches onto us in turn. But won't see a GP for help.

DM seems to have stabilised a bit. There was a suggestion that there would be a bit of a honeymoon period when she stopped most of her medication so I dont know if we are in that.

Keeping DM out of hospital means trying to stop her from injuring herself by attempting to get out of bed unaided. This is easier said than done when she gets into a toddler 'my do it' frame of mind. I did suggest to DB that DM does this to him because it provokes a reaction from him.

Hello, hope it's ok to delurk and join.
Sorry to you all (us) that we need a thread like this.
My situation is slightly different in that I'm the youngest of 5 with much older siblings. My parents are long gone..
My situation is my BIL was diagnosed with Parkinsons over 10 years ago. About 18 months ago he fell down the stairs. He was hospitalised for months and then eventually moved to a care home. He can't walk, can't really speak and is peg fed. It's a terrible situation.
I'm struggling under the weight of trying to support my sister through this and her expectations. My other sisters are late 70s/early 80s and to help but the emotional and practical support she wants from me and I'm drained with the daily calls.
Sorry didn't want to write an essay just need a place to vent as I feel like such a bad person when I don't do something she wants..

Hello, I've been lurking for a while, but I think it's time to step into the cafe. Parents are both 80 and have been in amazing help up until 12 months ago. We're currently on a Parkinson's diagnosis pathway to mum, and she seems to be showing increasing symptoms. Dad is showing evidence of some cognitive decline and needs a pair of new knees. I'm 90 miles away and an only child. We have LPAs in place but not active at the moment. Looking forward to the solidarity of shared experiences and perhaps some tips and advice.

Hello @staringatthesun hope you find some support here. Lots of very kind people with vast experience. I’m a few years down the line from you. My DF has Parkinson’s with Lewey Body Dementia.

What I would suggest is a gentle conversation about what they see the future looking like. Is the house suited to their needs? Are they open to carers coming in? Will they resist the idea of moving to a nursing facility? Unfortunately without a conversation now you end up having to make decisions in times of high emotion or crisis.

Welcome all newcomers to the 🪳 cafe 👋

I have been a bit quiet on here because I am struggling with a relapse of my chronic condition plus the general demands of being the family carer for everyone. I am seeing the GP today and have restarted counselling through work.

I keep trying to delegate especially for DF's care, but this week have still had to spend a lot of time sorting out medication issues and fielding calls about medical appointments. In the next two weeks I worked out on five of my days off I have appointments for DF. I also have appointments for DC to fit in too. DF also phones everyday trying to create reasons for us to visit if we say we aren't coming that day.

DF is also pushing ahead with trying to sell his house to move to a bungalow nearer us, but isn't able to complete the steps that requires alone. A move would make things easier for me and my family in the longer term, but in the short term it is loads more work for me and a lot more stress I don't need. Part of me thinks though that we will do all of this work and then he will go downhill and end up in a care home soon anyway.

DH is being supportive, but is also struggling as Christmas hit hard this year, being the first since his DB died. He is also tired because he is going every night to put DF into bed as he refuses to go with the carers.

Part of me thinks I should just book a family holiday abroad and go, turning my phone off. Then my DB would have to deal with it all or DF go into respite care.

@Choconuttolata listen to that part

I’m not a frequent reader nor poster so just catching up on the name topic - I think the name is great, I think it does a really good job of necessary gate keeping as it only recently occurred to me that I ‘qualify’ for membership, coinciding with becoming REALLY FED UP and starting to detach. When of course it’s been years of caring in ever increasing amounts.

(and whispers - envy of those who’s parents have a short sharp illness and die quickly)

This is all said semi tongue in cheek, but of course you lot will get it.

@Choconuttolata It sounds like you and your DH could really do with a break. What do you think would happen if you told your DF and DB that you are (not thinking about/might etc, are) going to be out of the country for 2 weeks and the options are either DF tries a respite care facility whilst you are away or DB can take care of him. You'd need to tell them it's their choice but you need a decision by (date) if they want you to help organise respite care, otherwise you assume DB is happy to deal with anything whilst you are away.
I know it's probably far easier said than done, but I know from my own experience that sometimes it's necessary to step away for your own sanity.

Welcome to all the new posters. It’s a long road but there’s good support here. This thread has been such a help not only in terms of practical advice but in that’s it’s a safe place to vent.

@Choconuttolata please book that holiday. Your situation sounds intolerable and sometimes we have to step away and force the crisis for changes to happen. If your DF was of sound mind and body, I am sure he wouldn’t have wanted you to sacrifice your wellbeing for his care. If that’s not true and he probably would have expected it, then you doubly deserve the break.

My friend has two DBs but naturally she was doing the lions share of the care of her elderly DPs. She went away on a prearranged 6 week European trip with her family ( she doesn’t fly so it takes a long time to get everywhere) came back and her DB had persuaded them to go into a home which was the best result all round for everyone.

Thanks @BlueLegume, they are tough coverstions to have aren't they, but you are right, it's time to have them. We had a 7 year respite really, after nursing lovely MiL through dementia, until she needed residential care. It's been quite inspiring and a bit humbling reading through how much some of you are having to deal with.

@Greigey I thought I was the only one secretly, shamefully jealous of those with DPs who died peacefully in their sleep or after a short illness. It’s so horrible as obviously I am not proud of myself and of course none of us choose how we die. Mind you my DPs get to choose how they live and my burden would be significantly reduced if they would both agree to go into a care facility.

Its so sad as it’s really tarnished my feelings about them. I know to a degree they can’t help it and they aren’t unusual in wanting to stay at home and refusing most care unless its free or it’s too late to make much of a difference, but by jove I find it hard.

@rookiemere I agree it's not unusual for elderly people to want to stay in their own home and not want help other than from friends and family. But having seen the reality of what this means for friends, and now having to negotiate this with my own DM, I am frustrated that this seems to be accepted as the ideal and it seems almost taboo to discuss the impact on the unpaid carers.

I absolutely do not want my DC to miss out on their own lives and make themselves ill attempting to care for me if/when I am not able to manage on my own. I would love them to visit me wherever I end up, and keep in touch with stories of the lives they are living but I hate the thought of them being under the stress that I am under and feeling that they can't properly live their own lives until I am gone. If that means I need to spend my final years in a care facility, or a small home with visiting carers, then I'm happy with that. I don't think it's talked about often enough.
One small positive from all of this is that it's led DH and I to have a sensible discussion with lovely MIL and our own DC about what would happen if/when any of us needs significant help. MIL's instant response was along the lines of 'I worked all my life for this house and I won't sell it to pay for a home/carers'. It's actually been good to be able to discuss this now, whilst she's still absolutely fit and well. Like most of us, I don't think she has ever really thought about the reality of what being cared for by family would involve and all the things she enjoyed doing in her 50s/60s that we would not be able to do if we were also having to act as her carers. Nor had she considered the positives for her of us NOT being the ones caring for her; we would have energy and time to do the nice things with her and spend proper quality time with her rather than just doing necessities and feeling we were always in a rush. She is very sensible and is glad we've discussed it properly but it's easy to see why people can't move past 'I want to stay in my own home no matter what' when they are already at crisis point and emotions are high.

I've already suggested a couple of care homes to my DC. More along a this is the sort of place, rather than put me here as outside space has always been very important to me.

Checking in to the new thread, thank you @GnomeDePlume.

@Greigey you really aren’t alone and this is a safe space. I think I can almost pinpoint when I want to pop along to the vet and be put out of my misery so my DH, DC or siblings do not feel obligated to do what we’ve had to for our parents. It does change your relationship irreparably (and is worse when that relationship wasn’t great in the first place!).

I am loving some of the more positive stories (not sure they can be called ‘success’ stories but having the necessary conversations and getting those who need help to accept it/move to where they can get it).

Book the holiday @Choconuttolata and switch your phone off so it can’t be spoiled with pleas for help/promising yourself for 5 more appointments when you’re back.

"Dead Parent Envy".

Someone included this phrase in a post on this Board two or three years ago, and it stuck out to me then, and has stuck with me since. My DF, now in his mid 90s, started showing the first signs of dementia almost 12 years ago now, diagnosed about 7 years ago, and has been in a nursing home for 3 years - immobile, doubly incontinent, unable to speak or express himself in any way other than groaning or crying out, and biting his own hand and the hands of others who try to soothe him. It is the most indescribably miserable of existences, and there is no sign of it coming to an end. He was briefly on end-of-life care over a year ago, and has plateaued since. DM has POA, and he gets his flu and covid vaccines, and antibiotics every time he shows any signs of infection.

Every time DM puts on a sad face and tells me about another resident, or indeed any elderly person, who has died, my response is "Hurray!" They've escaped!

And what makes it even more difficult for me is that my work frequently brings me into contact with the bereaved and dying, as well as individuals who've been diagnosed with serious, and terminal illnesses. I express sympathy and concern, am supportive and caring, but inside, I find myself thinking, "An aggressive cancer? A truly horrible, but mercifully short illness? That is wonderful!" (Edited to add - these are people in their late 70s into their 90s. It's obviously different is it's a young person)

That's awful, isn't it? To think that way.

But then, who wants to linger in pain and distress? We all would rather die at a respectably old age, still mentally and physically healthy, still ourselves.

I have a friend who's always surprised, in a "it shouldn't be this way" kind of a way when he hears of someone who died suddenly. "I saw him/her just the other day, and they were fine. Just back from holiday/climbing a mountain etc." He can't understand it when I say, "That's great!" (It's obviously sad and a shock for those left behind, I'm not taking away from that). My point being that if you don't get to die when still living well, what's the alternative? Would he only find death acceptable if it's preceded by a period of frailty and poor health? And why does he think that's somehow better or more acceptable?

Sorry - I've gone on a bit. This seems to be constantly on my mind.

@Seeingadistance my friendship group have always been very active - horse riding, skiing, sailing/kayaking etc. There are frequent comments that the best way to go is breaking your neck falling off/hitting a tree or rock etc. and we are mostly 60s and 70s now. My absolute horror would be my MILs fate. She had a catastrophic stroke aged 76 that left her paralysed and non-verbal for eight and a half years before she died. Over 10% of her life. If hate for my DC to witness that.

@MyFavouritePlace what a terrible situation for you, your DS and BIL. I have no advice. My suggestion would be that if you have all the support you can get in place for your BIL, and your DS his carer, it is ok to not take every call or only take them during certain times. It is so draining being constantly on high alert. Likewise when you take calls trying to not feel that you will be able to solve every issue. Sometimes offering the ear is all you can do. You all have my utmost sympathy - I am sure you are a great sister and support but some situations can not be sorted.

@Seeingadistance that’s remarkably helpful thank you, it makes me feel less of a freak.

Its hateful as when I send the inevitable message or sympathy card to friends whose DPs have passed ( I am the age for it to be a regular occurrence) I actually feel jealous of them and particularly when I know there has been dementia it feels slightly wrong to go with the whole “sorry for your loss” when the reality much more nuanced.

My DPs are still at home, but I have mourned the passing of my actual parents over the past 9 months, they are physically still there but their minds really aren’t any more apart from brief flashes from time to time.

My uncle died of a heart attack on a hill on holiday aged 86, DM seemed to find this shocking and horrible but DF and I both agreed ( he was still able to have proper conversations at this point) that it was a good way to go.

@sitoff It is really is awful. Draining and then the guilt sets in. Terrible cycle.
I'm sure it's the same for most of us. Whatever we do is never enough.
Thank you for your kind words, they mean a lot and some great advice which I need to take xx

@Seeingadistance That makes a lot of sense.

My DM and one of her relatives were both diagnosed with a similar form of cancer a few years ago (both in their 70s). DM's was caught quite early and although it took 18mths of surgery and unpleasant treatments she got the all clear. Her relative didn't get any symptoms until or diagnosis until it was too late for any real treatment and he died very quickly afterwards. At the time, I felt DM was very fortunate but seeing the way things are heading for her now it has crossed my mind that maybe a quicker, reasonably dignified end a few years ago might have been preferable to what she is probably facing now. Which feels like a horrible thing to be thinking.

I also know that at some point I am likely to be involved in discussions about what treatments DM should/should not be given. I know that my brother will push for her to be given all possible treatments for physical illness, on the basis that when she was seriously ill previously she wanted any available treatments. However, I don't think she would have said the same if she'd foreseen years of fear and confusion.