Cockroach cafe 🪳 Summer 2023 🪳

Sorry, hugs to you if wanted xx

@EmmaEmerald my dad doesn’t know me now, it’s hard

Re the incontinence, I’m not criticising the staff. Many/most are doing a hard job that doesn’t pay well in homes that are under resourced and under staffed. To prevent the incontinence, I have to take my MiL to the toilet every 2 hours. Now, in a care home with 50 residents, that’d be all the staff do to stay on top of it. Hence, the use of pads is understandable. Just, no easy solution. Getting old is bad enough. Dementia is so crap.

MissMarplesniece "It exhausted me - I don't feel I ever recover, I just keep on getting a bit more exhausted everytime"

Exactly. My now ex was surprised when I said I regretted spending so much time at dad's bedside when he was dying. That's not a criticism of dad. It's just it took so much out of me and some days he was confused and didn't realise I was there. Outside of intensive care, the nurses liked me being around because I could feed him and that was a job off their list. That bit I'm glad I did, because it's important to me that he felt looked after by a loved one, though the nurses were great.

But by the time he was off food, I think a daily visit wasn't necessary and took an awful lot out of me. I haven't actually read The Body Keeps The Score, but I imagine it's like that.

Also I couldn't have known it would take so long. We said our goodbyes about ten weeks before he died, poor soul.

With mum, decline could go on for years so I have to set different boundaries.

We are lucky that we do love each other and we do hold hands in hospital, (as cuddling is frowned upon, bringing germs into the bed etc). we had a nice cuddle on the sofa today before going to the optician, so the love is still there.

Perhaps I will appreciate mummy cuddles again when I've recovered more. I do realise I am lucky to have them. She'd certainly never tell me off for needing to be elsewhere. I am sorry your mum does that.

DM has been in hospital a couple of times over the last year or so and I've gone to see her everyday - usually for 3 or 4 hours at a time. It exhausted me - I don't feel I ever recover, I just keep on getting a bit more exhausted everytime. Once I was an hour late and she was most unpleasant in the way she spoke to me. Another time I didn't go at usual time because I was waiting for important phone call and she phoned me to say I was "the worst child in Christendom" among other things. I laugh now but at the time I was quite upset.

I was in hospital at a time when no visitors were allowed because of covid. Tbh it was bliss - such peace and quiet. I could do with another week of it, lol.

Yes, I used to visit a neighbour who forgot who I was but just liked a visit, so I visited.

Mere good point re keeping an eye, shows how poorly my brain is working.

I guess I think of visits as being nearly daily as that's what I did with mum the first time she was in respite.

When I was looking at homes for dad, - the hospital hadn't yet admitted he was dying so .i had to look - I just assumed I'd visit daily. Obviously after this breakdown I'd think again.

every time my folks have been in hospital I've been there daily. When dad was in intensive care, I was allowed in any time, so I'd go to work, eat a sandwich en route after and just sit by the bed till about 11. Dunno how I did it.

with mum, I had a lot of flexibility with work so could manage the more limited visiting hours.

when you look back on all the tiring hours involved, it's pretty shocking for all of us I expect?

My mother didn't know who I was for the last year of her life but she was always pleased to see me and that was good enough. MIL doesn't know who I am and usually can't wait for me to leave. I still visit because there have been a couple of times where action needed to be taken and it could be months until she has another visitor through the door. It's hard getting a conversation started because as far as she's concerned I am a stranger and some weeks I last five minutes before she's done with me. As a result I've dropped visiting to every other week. It is a shame because mum lost her language and MIL still has it but doesn't want to talk to me.

This week she was chatty and thanked me for coming and if it was like that all the time I would be fine with going every week. On my next visit I'm taking tissues, a battery for her clock and a particular fizzy pop, none of which she'd be having if I didn't go in.

@EmmaEmerald I think Mum recognises me as someone she knows but doesn't always realise I'm her daughter.
I visit to support my Dad who visits twice a week and to make sure all is as well as it can be.

To all those enduring the duty, you have my sympathies
I think the truth about relationships with elderly parents are a taboo subject IRL.

My mum hasn't been the same since dad died. I don't blame her for that at all, it's just been terribly hard work. Since her stroke in November, even more so, and she's now had a brain MRI scan, I await the results with interest.

Today she said she might be ready for a mobile phone contract, she's on PAYG and I've only been asking her to get one for about 10 years now? I did say to her "this is why I get cross - you wait till now, when I'm in crisis, to want a job done that I could have easily done before".

She hasn't got the care agency on direct debit because I think she hopes to get rid of them. So no visits from me for another couple of weeks is probably a good thing.

Posters whose parents have Alzheimers or dementia, do they recognise you? I don't think I'd visit someone who didn't recognise me. That's not a kind thing to say either but my view is that life is so hard, I don't see a reason to make it harder.

Re the continence situations, I think these organisations are doing their best. My father used to say that no one really knew what to do in many care situations. From what I can see, the doctors and carers also suffer because they get criticised whatever. I felt we saw a lot of cases of people being under-medicated in mum's care home, but I'm friends with a GP and she confirmed what I suspected - they get criticised for giving too many meds and accused of turning patients into "zombies".

My godaughter's grandfather was one such case. I kept my mouth shut because it wasn't my business but his family moved him three times because they felt he was over medicated. I didn't think so at all, our conversations were okay considering the situation(at this point I was still a regular visitor because I basically grew up with his son and he liked me visiting).

After the third move, they managed to get doctors to agree to reduce meds, then he attacked a member of staff.

Then he got moved to a more intense clinical environment and they were upset all over again by the meds he was given - but the staff have to be kept safe too. I never saw him again after that. They were furious because that place set a limit in his visitors, but after he actually attacked someone...

Sorry, that was long. I really think what carers do is amazing.

@EmmaEmerald I too understand what you mean. My Mum is in a care home and has late stage Alzheimers. I find visiting very hard as she doesn't speak and I feel that I lost my Mum many months ago.

I feel the same @Juneday . My DM wears me down. I do care about her but there is no joy in being with her - it's out of duty and because I think its unfair to leave my sister to "soak it all up" that I do it. I feel like such a cold hearted person saying that but it's how I feel.

@DrBlackbird i think it is very hard and the incontinence issue is one that I found so upsetting when I saw this in hospital where with enough staff and nearer loos there would have been less catheters etc. I does feel that once the timing etc becomes the issue the answer becomes ‘pads’ as the home calls them. With MiL if she calls out for the loo they always take her, but I think it has become a cry for attention with her now as she says it every visit within 10 mins of us arriving and she used to do this when I took food to get flat too. I hope that the caters are quick and help your mother, I am sure they will.

@EmmaEmerald i admire your honesty… not missing her Company as she is not the same. It made me think about the different phases the relationships with parents, particularly mothers, go through - the adoring toddler, the needy infant, rebellious teenager, independent adult. How that relationship changes and how well we continue to enjoy each others company is complex. Of course I don’t have that with MiL, and I will be honest, I have always found her Company quite draining. She is very quick to talk about all the bad things in the world and her life. She is very chippy, a complete worrier, anti social… but thankfully a sense of humour which DH can still get out of her on a good visit. When she lived with us for a few months many years ago and I found her fussy and demanding but also seemed to want to upset my marriage and make me feel like some downtrodden little women rather ( I had owned my own home and had a good job, I chose marriage not because I couldn’t live without a man though), She kept saying ‘I feel so sorry for you’ because DH works long hours…. I have a good life - I didn’t need or want her sympathy. She had a really tough life - I sometimes think she resented that I didn’t, but tried to make me think I did.

We can’t visit 2 weekends this month because of my family commitments and visits. I am relieved.

Yes, this.

tbh I remember my parents telling me to put them in a home but they weren't talking about such an "early" stage.

I went to see mum today. It was an impulse decision so I ended up going with her to the optician.

having had some time away, I can see how much she wants to keep some independence. I can also see that she really misses my company. This is awkward as I don't miss hers - I feel like my real mum vanished ages ago.

she has got a private carer from one of my suggested agencies, coming twice a day.

I do still look exhausted and vacant after the breakdown and I think she can see that.

I just went today because I felt like it but that's it really, I might not go for another fortnight.

MIL is much like a newly toilet trained toddler in that she can indicate she needs the toilet but it's right now no time to wait. But she needs manoeuvring on to the loo from her wheelchair so it's very rarely in time.

@DrBlackbird That must be an awful feeling, if you think she could continue using the toilet with the right kind of supervision and access to facilities.

MIL was assessed as not being incontinent when she first arrived at the home, as in spite of frequent accidents she could often still tell she needed the toilet, but not early enough to always get there on time, or with the coordination necessary to make it a straightforward unaided operation. She's permanently in adult incontinence pants, and frequently doesn't even notice she's going any more. But this seems to be due to the dementia rather than acceptance of the pants. If she becomes aware of it, she wants them changed, now if not five minutes ago.

@IthinkIsawahairbrushbackthere It's very hard when the frail become even frailer and that you can see it every visit. If she is actually suffering you should speak up to the staff. But if she is 'fading' it is so difficult to watch but at least at the care home you are not on duty 24/7 as you were when she was in the garden. Sending a hand hold,

It’s been a while but clocking back in again. MiL coped with multiple carers but now seemingly can’t be ever left alone because of toileting. DH looking at homes. What tiny bit of memory will completely go as it’s her house where she’s lived 50+ years that tethers her. Plus, I’ve no faith that home care staff will have the time to keep her continent. It’ll just be adult nappies. So sad.

thanks @EmmaEmerald yes it does feel like being stuck. Hate it.

Hugs to everyone. Watching relentless decline is just awful.

@IthinkIsawahairbrushbackthere I am sorry that just feels wrong, if lift engineers can’t make this a priority, sorry to hear about it.

I used to work in a garden centre with lots of elderly customers and their families and many of the customers starting to struggle. I miss their mad their determination and kindness and chatty personalities. Some really lovely people from a generation who lived through tough times….

MiL today cried when we arrived, distracted her a little and then said to DH ‘please kidnap me.’ 🥲. The moments of awareness are most upsetting. She remembers going to hospital on Friday but can’t remember eldest son visiting last week, which feels worse.🙁

Last ambulance call pre -stairlift, mum was taken in a medi vac chair down our narrow stairs

I'm sorry, it sounds horrendous.

If someone dies upstairs the undertaker would do what they'd do if someone dies upstairs in a normal house. They have a chair similar to a medi-vac chair (like the ones kept in stairwells in public buildings in case of having to evacuate someone who used a wheelchair if there's a fire and you can't use the lift) and would bring them down in that.

So sorry @IthinkIsawahairbrushbackthere 🌺🌺

hairbrush I can only offer hugs.