Cockroach Cafe 🪳Autumn 2022 🪳

@EmmaAgain22 i think I understand - there is the crisis short term issues, then the realisation of long term needs.
not knowing at first if it’s a sprint or potentially a marathon. Or an obstacle race. But whatever it is really important to look after yourself- especially if you’re looking at a longer term situation. They always tell you on airplanes to put your own oxygen mask on first…….

I thought it was pretty normal?

what I mean is, I was at mum's on 5th Nov, stayed over. She fell in early hours of 6th. Cue 18 hours at A&E etc.

then she was admitted, then went to care home, so I've been at hospital or care home every day till she came back on Weds 23rd, then at hers. I live 2 hours away, door to door, on public transport. So it was easier for me to just stay here. I know people who do it as a daily commute!

I thought living at mum's to care for her would be okay but I thought she was dying or going to need actual care. Mini Strokes, concussion, whatever the array of things is from the latest fall...now it's good that she is bouncing back but if she is okay then I should go home as soon as my sis gets here.

i'm probably not giving a good explanation as I'm finding it confusing. We put her in respite care to save me from having to deal with her while she was doing the early part of recovery.

Hello @EmmaAgain22 yes dm is alone quite a bit, but is able to read the paper, watch tv etc. she was widowed at 60 so used to her own company.
not having a day on your own since 5th nov is awful- illegal if you were employed!
can you get private care/ companions in to give you a break? What you are doing isn’t sustainable.
your health and well being are really important to be of any help to anyone else.

Glad you are rebuilding.

does this mean your mum is alone at home for a fair chunk of the day?

I'm afraid I've already burst into tears this morning. I just realised, I haven't had a day on my own since 5th November.

mum is much better. I will be interested to see what my sis thinks about it all as she is on duty tomorrow and Monday.

it's so much emotional upheaval to go from "is she dying" to "oh I can go home now" and it's happened so many times.

re being spoiled, no, my parents were never spoiled. I can't really compare mum and dad because I think dad would have been awful if he had made it to old age. Mum isn't awful at all. I'm certainly not cut out for family life though.

My mum was the least demanding and loveliest of all parents, though her absolute inability to state her own needs directly could be difficult - we were supposed to guess, and to guess right. What is hard now is knowing that her life is one she specifically did not want to live. But she didn't give us the legal tools to make her wishes happen and all we can do now is our best, which is still awful.

You have to look after yourself. MIL doesn't have capacity to be consistent in her demands, but her DC try to comply with them all the same. Maybe once a week she will be excessively grateful for what they do for her, half killing themselves in the process, but the rest of the time she'll rant about how shit her children are for not giving up their livelihoods to look after her full time. To be fair to her, this is the dementia talking, and she would never have expected or accepted that kind of help when she was in her right mind. But she was a very controlling individual, and that's the parent they're responding to. It's really hard.

@thesandwich "you are absolutely right the elderly is often impossible to satisfy" I wonder if those of us on here who find our elderlies difficult have aged P's who have always been used to being spoilt/getting their own way through life & now they continue to expect the same . Even though what they expect now is above and beyond.

@EmmaAgain22 thank you, I’m ok- finished active treatment in the summer so rebuilding and getting stronger.
dm still lives at home with carers 4 times a day plus cleaner/ gardener etc and I do shopping / admin. Her carers are v good.
and you are absolutely right the elderly is often impossible to satisfy.

thesandwich thank you. Sorry to hear you are ill. Is your mum in a care home?

MissMarple Oh dear, I want to give you a big hug - not that it would be of use.

In case it helps, I flatly refuse to go away with mum. I used to go away with both mum and dad for a maximum of a long weekend, when they were both well. After dad died, some family stuff came up in another part of the country and sis and I told mum straight that we didn't feel able to take her on a train. I have a couple of old injuries so my sister would be far too pressured.

She doesn't mind being away with me because I know my limits. But mum has crazy ideas of her own abilities so we just say no. Would you consider being blunt and just saying that?

Also, the bags of grapes - mum wouldn't ask for that but I'd just say no. It's never too late to set boundaries. I tend to think, we can have one miserable person, or two. The elderly parent is not usually satisfied with any sacrifice so might as well just have one miserable person!

mum's been home from the care home two days and I ran out of spoons after doing her breakfast this morning. I have to make that weird decision, which uses more spoons....but her recovery is up and down so she may not need a carer.

Much sympathy to all here especially@EmmaAgain22 and @MissMarplesNiece who seem really in the thick of it all.
completely understand the dilemmas about thinking this could be only for a few days/ weeks/ months they haven’t got long etc…. My dm still going at 97 so 15 plus years of increasing care……. And it’s only me getting the big C that has created a bit of a shift… certainly in my mind.
Boundaries- get as much help in whether they like it or not.
@MissMarplesNiece does your dm have attendance allowance? Can you find someone else to take her out? You deserve happiness as much as your dm and you risk ruining your health. Are there any local lunch clubs/ groups? Check with the local authority website/ age uk/ carers groups etc.

My mum would not be content being housebound. She gets very stroppy or cries if there is a time I say I don't want to go out. For example last week I had my own hospital appointment so never got to my sister's until 4pm. She wanted to go shopping & when I said it was a bit late & the traffic was now heavy, she had a strop & accused me of sitting around till it was too late to go.

@MissMarplesNiece I feel every word you posted. My mum always said that she could never be a carer. She could never have cared for an elderly relative in the way my aunt cared for my grandparents/great aunt. Yet she never saw herself as needing care. The things she asked me to do (can you reach into my knickers and stick that pad in for me please?) were just "what any daughter would do for a mum"!

Covid meant I didn't have to take her out for lunch every Saturday. I was happy to give up going out myself (my husband was the only one who left home through lockdown) because it meant I didn't have to get her to the toilet, dressed, into the wheel chair and out and the same again when we got home .

Mum could never understand why I was exhausted after a day out! Of course she had far more energy when she was my age! She wasn't caring for a large family or an elderly mother!

That sounds exhausting, @MissMarplesNiece. Do you honestly think that your mother benefits from attending these appointments? If they're not massively adding to her quality of life, then time to ditch them. And from personal experience, the GP and nursing team will come out to housebound patients if they are pushed to which also helps. Most elderly are perfectly content being housebound as it is familiar and safe - so you can take that pressure off yourself. Find something that you both enjoy - a puzzle, a crossword, audio book to listen to together. It's about quality time, simple pleasures and enjoying each others company. I sat for 2 hours last night trying to do the Times crossword with Dad - we both ended up in fits of laughter saying "well surely you know one of the answers".

I feel very sad about it. I never envisaged that at 62 I would be in a poor state of health myself and being parent to my mother. She asked me while we were at the hospital if I'd like to go away with her on a short holiday for a rest. I wanted to burst I to tears. It would be no rest.

I take her out twice a week, just so she's not housebound. But it's a struggle for me. If anyone knows about "spoons" it takes me my days allocation plus most of next days as well. I'm just recovered physically, mentally, emotionally & it's time for the next round. I mean, how do you say "I can't do this so often" without upsetting her?

Sorry, I'm just feeling tired & sad tonight.

MissMarple that sounds difficult. If you say no, is it a case of getting hospital help or hiring help?

I was a bit stunned when mum was discharged from hospital, wheeled out by a nurse who seemed to have someone supervising her (?) and that lady didn't offer to take a single bag. Even if her job is to observe the senior nurse pushing the chair, couldn't she have taken a bag? I think she could because when we were at the ground floor, she suddenly offered. Bizarre.

Badger "As we age, our bodies pack up. It's not rocket science."

amen! So relieved that mum finally got referred to Geriatric medicine. The consultant who saw her had a proper holistic view of her problems and completely accepted there are certain things that don't warraht further investigation because she's not in a fit state for treatment.

Borntobeamum my mum occasionally makes those comments and I burst into tears (privately) once. I never wanted to be a parent.

after just three days, I'm thinking mum needs a carer but she is recovering so she won't accept that. If I lived nearer, it would be different but I can't just pop by when there's a problem.

Ironically, the fact she is recovering is causing issues - I can't just do the care stuff and pop her in bed.

my sister was saying, the worst of all this is the uncertainty - not knowing if they'll be around another 10 years or another 10 minutes.

Saying No is something I can’t seem to say ☹️
I feel my mum now has such a poor quality of life that I am far too accommodating.

She’s my Mum, or I’m her mum as she keeps telling me and a mum should look after her child. I’m 60 and she’s 90.

I took great pleasure in ringing central booking and telling them that Dad was too frail for any more hospital appointments. In hindsight, we should have stopped them years before because it knocked the stuffing out of Dad, and it didn't really acheive much other than a Doctor or Nurse shaking their head and saying "you're getting older/frailer/weaker and your body is packing up" or they'd prescribe yet another medication that came with 50 side effects. The NHS needs to draw a line under the endless clinic appointments for the elderly, it would save a bloody fortune. As we age, our bodies pack up. It's not rocket science.

I've not long come back from taking my mum to a hospital eye appointment. I tried to make it as easy as possible - we got a lift to the hospital door, minimum walk to clinic area, picked up from outside afterwards.

But I'm exhausted: from waiting room to consulting room she clung on my arm, needed assisting into & out of every chair, into & out of car. And I felt like a donkey - carrying my bag, her 2 bags, then a bag with 2 cartons of grapes from fruit stall in entrance to hospital, her clinging on my arm. I don't know how long I can go on with it. I'm not getting younger.

What have you done in these circumstances. Have you come to a point when you say "no" ?

@Mum5net so sorry for the loss of your mum Xxx

Mum5net "DM will be smiling. I never imagined this type of ending."

that's good. I didn't like dad's chapel of rest being located at a busy junction but he'd have hated a quiet road!

there's a certain feeling of being "out of the woods" when someone passes on after a lot of suffering, I expect you might have a bit of that now.

mum has mostly been asleep today. I suspect that's the ongoing effect of concussion? Don't know if anyone has experience. I'm inclined to think rest is the best thing for her.

Thank you to all for your condolences.
I made a request to undertakers that DM be kept in the hospital morgue until after the weekend as it will have staff there round the clock. DM was a party girl and would prefer to be with alive people. Our lovely funeral organiser then announced that was where she used to work and that would be no trouble at all...
Here's the little note I got tonight...
"I have spoken with the girls at the mortuary today and can reassure you that your DM will be getting the full VIP treatment from them until next Monday - and then of course she'll receive it from us, too."
DM will be smiling. I never imagined this type of ending.

Sorry for your loss @Mum5net, what a lovely post though. Such a blessing for her to have gone quickly.