🪳 🪳 🪳 Cockroach Café Late Summer 2024

Wishing strength to @ArabellaFishwife (and her DH and SIL) and @MysterOfwomanY as I have much solidarity with the uncertainty, long journeys, sleep deprivation and haemorrhaging of money involved in hospitals admissions.

It’s also a good reminder that while DF is in a nursing home, the bills will still need to be paid if he goes into hospital. I am having to be medium chill with him at the moment but really want to shout ‘listen to the nurses and cooperate with them looking after you, or you will end up back in hospital and we won’t have time to visit you there!’

DF is protesting being ‘imprisoned’ and unable to live his fantasy life where he will magically be physically able to landscape his garden and do diy (but let’s be clear he only ever pottered and bought the materials when he did have his health).

I wish I knew the words to say that made him feel he had permission to be at leisure and allow himself to be looked after and less of a worry.

@ArabellaFishwife
Even when they're safe (sometimes anyway!) in hospital, and you're cutting everything down to the strictly necessary, 4-6h two to three times a week is the equivalent of a part-time job. Or training for a marathon. And more expensive, when you tot up the fuel costs and the money you spend grabbing "meals" from the hospital café...

FIL has been in hospital for a fortnight now. They seem to be finding new things wrong with him all the time. There isn't much right with him, tbh, but they continue doggedly to ensure he stays alive. Actually he's been in different hospitals for two months now, with a very expensive break in a nursing home which of course he has to continue to pay for.
Christ, that sounds horrible. It really is, for him, poor bugger. It's not great for the family either, with SIL anxiously being at his bedside and doing her actual paid job fuck alone knows when, and DH doing five hour round trips twice weekly on top of his job, constantly on the alert for the This Is It call, and spending his downtime sorting FIL's admin and clearing his house so that his money doesn't run out to pay for the unoccupied room in the nursing home.

Commiserations for all with parents in hospital. It is exhausting. DF was admitted yesterday afternoon, he finally got a recliner chair in A&E at 7am and a bed this afternoon. I was there all night last night and have only had 2 hours sleep since Sunday night. DH is with him currently and a doctor finally came around half an hour ago and explained what the plan is.

The lack of communication is always part of the problem I find, you can't plan your own life without knowing what is happening.

Oh dear. There are people in every profession who shouldn't be there...

@PermanentTemporary yes I don’t like to criticise nurses as they work very hard but this one was not great. The Webster pack was in the top drawer of the bedside table but she didn’t think to look there before calling me. She also breezily said it’s lucky mum is switched on because she was getting her up for a shower and mum reminded her that her dressings needed to stay dry?! She has bandages across her face, one arm thickly bandaged and a big wound covering on her leg. What nurse would look at her and think yep she needs a shower!

Then when we got back to the care home the nurse had written Palexia as the prescribed pain relief but the pharmacy had dispensed endone as that’s what the doctor had prescribed. Care home obviously can’t give her endone with no paperwork so I had to call the hospital to get the discharge form reissued. Oh and she was ready to let Mum walk out the door with a cannula still in her hand until I pointed it out. I was embarrassed at the hospital as mum was very loudly talking about how hopeless the nurses were (she’s deaf and shouts) but she wasn’t wrong!

@Remaker that sounds like a very inexperienced nurse. What person living in a nursing home has their daughter doing their medication FGS?? Tbh I can't imagine a nursing home that would even allow that, what would their liability be if we got the meds wrong?

Both parents in hospitals now: one in A&E, one in community hospital preparing to go home (but I suspect not if care isn't in place, which they have refused to set up despite constant reminders and information being given to them). As a family we are all burned out and today's emergency trip was the last straw, I lost it in the doctors room and on the drive to A&E. I love them both dearly but I'm so done.

I've got another blooming cough, but hopefully I'll fight it off.
It does mean I'm at home on the sofa now instead of still driving back from Redacted General.
Because I just picked up clean clothes from her house, whacked on a facemask, dropped the clothes off and picked up the dirty ones, had a quick chat from a distance and vamoosed before (I hope) sharing whatever this is. Still took four hours.

@I8toys that is the brutal reality isn’t it - I might actually quote this to DF - he’s not even the only elderly parent that needs us and his grandchildren need their parents too.

I know that it took my sister saying 'NO you will ruin your life and mum wouldn't want that' to me to stop me moving towards living with my mum after her stroke. (I don't of course know if it would actually have happened). It takes a lot of protective factors to stop this sort of thing, and one of those for me is that I knew she was right - my mum would have told me to go home to my husband/son right away. We may bristle sometimes at the cultural norm to women that 'your partner and children should be your priority' but it does sometimes at least prevent you being forced into making your parents your priority. God forbid we should prioritise ourselves...

I remember someone posting this on the elderly forum - no clue who it was and apologies for paraphrasing but it really stuck with me

“The other mantra I found helpful was something a priest once said to me: that everyone in these situations has ‘equal rights’ . Your DM deserves care and consideration, but not more than your children, your husband , even yourself. Of course, you may choose to sacrifice your own share, but you don’t really have the right to sacrifice the needs of the other people in your life."

Looking at it from outside, it looks totally insane. Her children must barely know her. So sad.

I think the situation must have crept up on her. When I was living near her years ago now she was going to her mums a few times a week but living in her own home with her DH. At that point she was struggling to combine the trips to the mum with primary school drop off and pick up. That's more than ten years ago now.

This is nuts. I don't understand why people feel they have to sacrifice their lives like this. And its not just their lives its their husbands and childrens as well. What are the motivations behind it? I don't get it at all. I know we love our parents but this is extreme.

I've had a really depressing Christmas card from a friend. She's only seen her DH and teenagers for a few days once a month this year because she's staying with her 90+ yo mother! Who has carers but refuses to go into a home.

She is working age, but hasn't been able to work for years because of this mother, has missed out on her children growing up and will barely have built up any pension for her own retirement.

I cannot understand what happens to people when they get old. MIL would be quite happy to ruin DH's life and the only thing that would satisfy her was if he sat on the sofa next to her all day acting as a surrogate husband.

We have had so many boundary setting conversations with her that it's getting tiresome. Sometimes if she gets too demanding I'll visit her instead of DH and ruin her day.

Welcome @Remaker I think some nurses know what you’re dealing with and even if they don’t, there is certainly no judgment here. I hope you’ve been able to hold some of your boundaries.

Yep, sounds like you’re a perfect fit @Remaker. Welcome to the thread none of us want to be on but is a safe haven for rants.

Hello I’ve stumbled upon this thread and it sounds like a place I fit in!

I live in Australia and have a DM89 who now lives in a care home and two useless brothers, one of whom is DMs favourite child. He stops in for half an hour to have a cup of tea and scroll on his phone and she raves about how wonderful he is to take time away from his busy job. Meanwhile I am left to do everything else!

She’s currently in hospital to have some skin cancers removed and they’ve just called me to say she’s not brought her medication with her. She’s as sharp as a tack, no dementia. She packed the medication in the bag herself and I showed her where I put it right by her bed last night before I left the hospital. But this morning when they asked her about the medication she denied all knowledge and said oh you’ll have to ask my daughter, where’s my daughter, I don’t know about medication she handles everything. No I don’t handle her medication, the care home does and she’s got a bloody great Webster pack right next to her head so I’m not sure why she (and the nurse) couldn’t find it. It’s a ploy to get me in there at the crack of dawn instead of 10am when I said I would come. And I’m not falling for it even if the nurse thinks I’m a selfish cow.

@anagram32 what an awful stressful situation for you.

where do this entitled, manipulative generation of parents come from. I can’t imagine wanting to make my children’s lives so stress laden and care orientated.

sending 💐

@northender I feel your pain. So much identification. Am also an only child with a 95 year old mother living alone in her own home 150 miles away in a very isolated location who is deemed by her GP to have 'capacity' even though she forgets significant events. Refuses to activate either PoA which I've had for years and refuses any care package even though social services think she needs it. I had a heart attack on 1st October and although I'm doing well with on going cardiac rehab group, I feel I have had no time to emotionally recover because of ongoing situation with my mother.

Some of you may remember me posting on an early thread about my horrendously difficult mother who has end stage heart failure. Always been spiteful but has entered a new phase of vileness/stubborness now. On oxygen 24/7. Had her third fall two weeks ago in bathroom and split her head open. Called 3 sets of neighbours at 2.30 am, one couple got up, came round, cleared all the blood up and the wife went to A&E with Mum for 5 hours. Discharged with 5 stitches in her head. As you can imagine, her neighbours are getting extremely irritated about being treated as unpaid carers when they know she declines all official care packages offered. Despite me pleading with social services, her GP and heart nurses, nothing can be forced on her that she doesn't agree to.

Can't be bothered with visitors staying - even me - as she likes to sleep all day and not be bothered about food/having to be sociable.The sight of it makes her feel sick and she is under 7 stone now. Neighbour told me I'd be horrified if I saw her (last time was in August). I know it will be her last Christmas so partner and I agreed to go up for a few hours next weekend (a 7 hr drive there and back). The nearer it gets the more am dreading it, especially as have awful tendonitis in one knee and long car journey will make it worse. Haven't spoken to her for a week as just so angry with her for refusing to make any compromises, for the stress it puts on me and for being such a selfish bitch. Suspect I will back out but she will then spend her last Christmas alone. Have done so much to try and help her in the last few years. But with choices come consequences and she has never put anyone before herself :(

@northender Attendance Allowance if you haven’t already applied would sound useful so it could fund extra help. If that is your parents would accept it. People always say POA is essential but I have it and yet found it no use for a difficult mother. She has capacity but won’t accept any external help, which is needed, so it falls to us. She utterly refuses to engage with her GP, have a cleaner, have food delivered so we continue muddling along.

Carers allowance - this has been suggested to us but it is a pittance and requires ‘you’ to be around for 35 hours a week as I understand. Please do not do that.

A useful tool is - https://outofthefog.website

Keep us updated. As for the unsuitable property - lets hope those of us on these threads take heed and make sensible choices as we also age. Not that any of us are particularly young. We are definitely in an age of elderly parents demanding more than is possible from busy people who have not had the luxury of retirement at a sensible age, as our parents did. I tire of the posters who tell us what a privilege it is to have our parents still alive. they clearly do not have ‘our’ parents.

Great you have poa in place. Also worth looking into attendance allowance and carers allowance to help with any care costs.

My dd died earlier this year after 3 pretty intense years leaving dm 85yrs who is difficult. Caring is exhausting. I wish I’d given more thought to me. You sound to have been through a lot already. Maybe boundary time daily when you’re not there to do admin thinking time & start looking at local wider support. Eg volunteer driver schemes, dementia clubs.

Try and do extra things self care for you and let thoughts/ feelings out somewhere/ somehow. 💐

Hi. I posted once on the spring thread but think i probably could do with visiting the Cockroach cafe more frequently...
My mum & dad are 85 and 79 and have never had a happy relationship.
Dad started a cognitive decline around 3 years ago I'd say and I suspect some sort of dementia, he ticks most of the FTD boxes. He has had several dramatic falls and hence lots of different medical intervention over the past couple of years, but on the whole masks his problems well. While he was in hospital after a fall and a small sub dural bleed he had a full OT assessment (ACE III) and only scored 73. They put it down to his fall so he hasn't had a re-test. He has now been referred for memory assessment but goodness knows how long that will take. Meanwhile he is very stubborn and unapproachable about it.
Mum has had a few short term memory issues which I always felt were typical age-related stuff and she has had a few falls. But now she is really worrying me as there are big things that she has no recollection of from the past couple of years. She is physically very thin now too.

I am an only child so everything falls to me. All POAs are in place but not acted on yet. They live in a rural, isolated location and own their (unsuitable) house and the house next door, but it's very complicated legally so they will not be able to sell quickly. I work 4 days a week and just find so much time and emotional energy is taken up with trying to support them.
I had ovarian cancer 2 years ago and feel I haven't really had the chance to recover fully emotionally/mentally from that partly because of their deterioration since then. There is more I could write, but that will do for now. Well done and thanks to anyone who has read this far!

@I8toys I believe this is what we are dealing with, but struggling to get diagnosed.

It has been rapid and definitely the ‘steps’ in decline are what we are seeing. Also the anger, a lot.