🪳 Cockroach Café Spring 2024 🪳 🪳

@FiveFoxes I think that it's good to know as much as you can and plan for all eventualities, but we never know how things will unfold so there's a need to be flexible. Also to recognise that with frail very elderly people each next solution will last for only a short period of time, before there is another change. So yes to getting in care, for putting in grab rails, for making daily living easier and safer. But think long and hard about long term expensive structural building changes, or disruptive house moves.

Usual typos 😁

Some wise advice on here as usual. When my DSis first realised how much our DM was struggling with mobility she got in a panic about care and how to help DF manage. I told her she didn’t need to plan a year in advance, I looked up some care companies for reassurance, and luckily my parents can afford it. I like that saying and it is true in life - trying not to worry about it, it may never happen and if it does you will find a way. I learned this with DD who was GOSH patient and has immune problems. will never stop worrying but have to try very hard too!

I had a minor breakthrough with DM this week as she agreed she would like a walking frame in the house ‘just in case’. Also DF has organised her an appointment with someone else (one of many) to review her mobility, and she is asking DF to get the wrist ‘watch’ fall alarm. I gave DF the links 4 months ago! I don’t know why he hasn’t followed up, DM fell this week and DF couldn’t help her up 🙁. We are 3 hours away so no help, I think she eventually managed it herself, but she needs that falls alarm asap. I am concerned that DF won’t admit she isn’t going to improve so is refusing to give in to ordering it. I will talk to siblings tomorrow.

DH will visit his DM this weekend, I expect she will be asleep.

And I love “don’t borrow tomorrow’s sorrows” too. 2023 was the year of dread and it was exhausting. I’m not quite ready to be optimistic yet but the rollercoaster is currently a tamer ride.

In case it helps anyone else, in the last 24 hours I’ve learned that reablement care - NHS six week package - can be provided even if you haven’t been in hospital.

It would have been great to know this during the multiple DF crises of 2023 (all of which should really have triggered this).

Completely agree with "don't borrow tomorrow's sorrows". My Mum got her Alzheimer's diagnosis last week. I found it really hard, especially as we have literally just lost my FIL to Alzheimer's so I feel I know the story. I went on a bit of a downer about what the future will be like for my Mum and also for me. There were a lot of "it's not fair!" involved.

I am planning regarding different scenarios (no planning with FIL so everything happened at crisis point). I have a spreadsheet I have made with foreseeable future events and solutions, including care homes etc.

But I am really trying to take each day at a time. FILs illness isn't necessarily a blue print for Mum's. I don't know what's around the corner. Mum is ok for now and I have made helpful amendments for now.

Basically, in the words of the saying, I am trying to have the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

These threads have been a lifeline for so many of us in really dark days. Grab a seat, gin and cake, and feel free to vent/ ask. Someone on here will have something sensible to say or offer more cake.

This was the mindset of my son’s mother in law, in fact the whole family and I am trying very hard to adopt it. I had a sinus infection throughout January and that battered my defences a bit plus a couple of bodyblows from other directions. I’ve used February to try and restart some self care but I have felt so alone and a bit powerless. This morning, having found this community, I feel so much stronger.
Thank you for your support and listening. I hope I can do the same for others.

One of the mantras from the long running cancer support threads( like others here I’m resident there too) is “ Don’t borrow tomorrows sorrows”
Planning for outcomes is sensible, but use whatever you can to stop those spiralling thoughts. Mindfulness, meditation, late night audiobooks, whatever works for you.

I am when push comes to shove but boy can I catastrophise when I don’t know the full story! (Also inherited from DM!)

Me too. My great aunt died in the garden at 88, planting out bedding plants on a lovely day in May.

Until recently I’d been trying to stop DM going upstairs in her house or down to the bottom of her garden because she’s so unsteady that I was terrified she’d fall. However after a chat with the community physio who came out to assess her (after she fell in the front garden and fractured a vertebra). I’ve changed my mind. His approach was that these are very good things for her to be doing - using muscles and keeping her mentally occupied.

@Okitsme you can only do what you can do. And we all understand the fear.🌺🌺. Try and find ways to sustain yourself- we often say on here we don’t know if it’s a marathon or a sprint. Your dm sounds v strong. You’ve inherited that too I expect.

She already is on heart and anti water retention medication, I’m hoping they can be tweaked. The pneumonia- and the cellulitis- had a really detrimental effect. At the time DM took warfarin and wouldn’t admit to needing more antibiotics to treat the infections as it interfered with her INR results, so instead she’s been left with permanent damage.
Did I mention she is very stubborn and sets her own agenda!
Last year she decided she wanted to live to 91 and I found myself saying that I was the one trying to get her there despite her best efforts!

We have an appointment to see her doctor, might be next week or in April we will find out today! Last week she spent 3 days in the garden, loved it, complained that she couldn’t move stones like she used to but spent the time standing weeding rather than walking so she’s having to see the nurse twice this week to have her leg dressed.
The biggest hurdle for me is the appointment on Monday and what the scan shows. I don’t want her to be frightened.
To be honest I’m scared for me as well. I don’t know if I can cope.

(And given the choice, I'd definitely rather keel over in the garden than have my brain slowly desert me.)

I would encourage her to seek help for the heart symptoms, but definitely not stop her gardening - physical activity she enjoys is hugely beneficial for both physical and mental health.

Good morning. I’ve just found this thread and I really need you. I hope you don’t mind, but I am eating far too many big bags of crisps and they are not really helping.
My DM is 87 and has had so many knock backs over the past three years, cancer scare, pneumonia, loss of friends and close relations to cancer, accidents and suicide. She’s gone from walking over a mile everyday to struggling to walk with a stick. She is still fiercely independent- her DM lived with her and my DF for 10 years and she is determined not to impose herself on anyone. I live in the village next to her and am the only one able to be there for her, I see her everyday and FaceTime for at least an hour.
Last year we thought she was having a stroke, they found a tumour. Steroids stopped the symptoms, she saw a consultant and they were a bit mystified as to what was actually wrong, might not be cancerous, just keep going etc.
DM carried on as usual, but developed vascular eczema and cellulitis, during a scan she couldn’t remember her date of birth so I rang her doctor to ask if she could be given another prescription for steroids. The next day she was away with the fairies. She was admitted to hospital, lost all cognitive ability for 48 hours before slowly regaining all of them over 14 days. She was sent home with care support that was stopped after 5 days as she didn’t need them, she continues to be self sufficient, cooks, shops - when I take her and sorts out the 12 tablets she needs to take each day - but asks me to check them.
BUT she is beginning to forget things, her vascular eczema is bad, her heart function is slowing leading to water retention so her legs are currently seeping and and she has poor circulation so her hands and nose go blue in cold weather and if she rushes, we are also seeing the neurologist on Monday with the result of a scan she had in January which was a follow-up to one she had in August that identified changes to the one she had had in April!
She is 87 but she wants two more years, she has always blocked ‘bad’ things and makes up a more positive narrative but she worries. I don’t want her to be scared. My daughter in law has just lost her mother to cancer and my DM was horrified that she knew the diagnosis was terminal. Meanwhile I am having to work out how I deal with things, do I protect her, be proactive and make her get medical help for her heart and stop her gardening or leave things as they are and hope she has a heart attack in the garden before whatever is in her brain has a greater impact?
My DH tries to be supportive, he’s not really and I am juggling him and mum, everyone around me has their own burdens - I’m often asked to help shoulder them- so I have no one to discuss this with, have no life so I eat crisps.
Sorry for the length of this.

Thank you @Juneday . Dad being in hospital is bad for him but actually giving Mum some respite which is good. She had some one from the hospital round yesterday to talk about the care package and then next steps which will include a financial assessment which we've been struggling to get for ages. Sometimes it seems you need something to go wrong like the UTI to then get to the right people who can actually give advice.

My impression of this is that it is incredibly hard to find help, it often seems by luck that we find things.

@chickensandbees late enough now to pour a drink. The UTI issue is both frustrating, MiL was in a ward where they all had them because they were told the nearest loo was broken and catheters were the answer. I hope he gets good and kind Carer’s for the 6 weeks and accepts their help. Other help is out there but you might have to look for it. Sounds like you and your DM need this. Age U.K. and others offer advice and services. 🤞

Welcome to the bad daughters bench @chickensandbees . Feel free to practice shouting “No” into the void.

Thank you @countrygirl99 venting really helps...I'll take you up on the gin & cake later.

@chickensandbees feel free to vent and help yourself to cake/gin/whatever takes your fancy we have a never ending supply.

Hi, I'm new but reading this thread makes me feel I have found my people.

DP has dementia and it is getting more advanced, he also has mobility issues and is in a wheelchair but falls a LOT. He is currently in hospital with delerium caused by a UTI because he refuses to drink much water due to his incontinence. He'll be home in the next couple of weeks and the hospital will put a care package in place for 6 weeks but then I think they'll be left to themselves again.

DM at 83 is his full time carer and he can be beastly to her, doesn't think they need carers and when she has had the odd week of respite care is horrid to her..."she's trying to get rid of him". I know some of this is the dementia but it is also typical of how he views her as just an extension of himself. He also constantly tells me I don't do enough to help them despite me working full time and having two children. He thinks I should be there at the drop of a hat. He once asked me to come over to set the table for them as they had friends coming round. I feel constantly guilty and frustrated and worried and more guilty not just because I don't do enough but also because I don't want to do more. 😩

@Feckedupbundle what a lovely plan, glad you also have such supportive close family to help with the fiddly and necessary paperwork and arrangement. All helps.