Cockroach Cafe 🪳Autumn 2022 🪳

Oh @EmmaEmerald sending a hug.

Mere thank you for saying that. I'm so used to just chugging alomg.

funnel yes, always good when a doctor who knows the patient can help out.

Badger glad you found the counsellor helpful.

again, crosses over to other territory...mum is already asking about my birthday. I know it's because she's trying to picture a little spring outing in the winter gloom.

so I pondered...and I remember my 40th in Las Vegas....and I think....what happened to my life?! And I just want to cry.

it's not all due to elderly parents of course. (I didn't feel anything like my age before lockdown).

Offering a hug/nod/fist-bump of your choosing in solidarity for everyone managing their mental health as well as their elderlies.

I spoke to my mum's GP this morning - I hadn't grasped just how much a difference it makes to talk to a doctor that actually knows mum, has done for a while and thus knew her when she was well. And the first question she asked me was how I was doing. I could have turned into a bubbly snot monster right there just for having the question asked! Anyway, she's doing a home visit to mum later this week, and I think she's going to be a great ally/resource. Fingers crossed I get to go home this evening for a couple of days.

I'd consider myself a really strong person usually, but my MH is shot to pieces at the moment. I'm eating badly and have put over a stone in which isn't helping me either, not sleeping, have a permanent knot of anxiety in my chest and feel really run down. I've started a weekly counselling session via the hospice as they recommended it and it's helped me no end to understand that what I'm feeling is perfectly normal and OK for me to be feeling. I cried non stop for 50 minutes, but she actually gave me a huge smile as I left and said she worries far more about the ones who can't cry...!! I feel as if crying is all I do, I'm surprised I'm not attached to a drip to counteract the tears.

Mere yes, I am convinced it's a real illness. I think it gets abused now but I have been in treatment for decades. Therefore I can't answer the flu/sprained ankle question because I just don't know.

I am having a particularly low spell atm which doesn't help.

thanks for replying, I know it's very trivial given what others are dealing with.

@EmmaEmerald yes, I have a "mum bag" that I keep in the car for things I need for every visit, and if I need them at home I get them out of the car then put them back in the boot. I've got a shopping list in google docs that I use every time I go grocery shopping to prompt me to check her cupboards for the items that are important to her - and DB and I also keep food in her freezer for us (mostly frozen pizzas, difficult trying to eat healthily in this situation isn't it? I also keep a bottle of multivitamins here too because of that).

Thanks all, you are very kind. We've not had to deal with dementia before in our family - we've had olds get delirious with UTIs, that's it. Just trying to get my head around it. Consultant said apart from vascular changes, her other test results were all "unexciting" with heart, lungs, kidneys, liver, blood results including sugar etc all bang on what you'd expect for a woman of her age. So she's healthy in body - does it sound horrible to say that's not good with a dementia diagnosis? DB and I were discussing quality vs length of life this afternoon. I'm lucky that he is involved and supportive and we are aligned.

@PermanentTemporary Speaking to the Gp tomorrow seems best but rather than focusing on the LBD as the headline I'd focus on the fact that she has already deteriorated past what the care package put in place allowed for and that you're filling the gap but will have to leave soon.
Bingo, thanks, that's a good point and I will lead with the carer's concerns.

Does it seem as if a nursing home might work better now?
Yes, and DB and I have this as our aim. There are two within a couple of miles of my house that are care/nursing/dementia so would be ideal from a location perspective, rather than the 100 miles distance I have at the moment. DB would have the same distance to drive as he does now. I'd rather get her settled before her cognitive deterioration gets really bad. Just one person to convince, and that's mum. Having GP and other professionals on board will make convincing her easier.

Tbh if she was better in hospital why not let the carer make the call? Because mum hated it there - I did ring 111 instead to get advice (sorry to drip feed but my post was getting long) so did acknowledge their concerns, and having spoken to the senior carer in charge, she understands my point and I theirs. They are great.

@thesandwich @seanbeanmarryme at discharge she was indeed bright and chatty and walking with a stick - I walked her out myself and took her home in my car. They got her back to the best she's capable of, and then assessed her needs on that. What we were all missing was the impact of her underlying diagnosis.

@Badger1970 I'm glad to hear your dad has been more settled for a couple of days. I had a heartbreaking conversation with mum this afternoon when she "came back" for a while, and I asked her how she was, and she said she was frightened, and when I held her hand and asked her what she was frightened about, she said dying, and she thought that was what was happening to her (with all the carers and out of hours doc visits). Ironically that did open up the topic for me to say I didn't think she was dying just yet, but that the doctors seemed to think she had a form of dementia, which she was quite calm about. For a while she's been saying things like "I can't do the telly remote again because of my dementia", as a shorthand for cognitive issues. It actually calmed her down to be validated I think, and I talked again about the residential care homes near me, and how nice it would be to be able to pop in and see her every day. I'll keep plugging away.

To add
in terms of being prepared, I realise you can't be prepared for everything but I now know not to go to my folks house without certain items, as I can't just pop home and pick stuff up.

I know mum will always run out of cash because she refuses to keep much in the house so I always have some when I visit. I always have food in her freezer and cupboards for me in case I get stuck there - she eats like a bird and there's often barely a crumb in the house.

Etc. Basically all the boring stuff needs to be in place, I find.

over the years I have cancelled three sets of theatre tickets for parental emergency ...if I go (which is rare now) it's either last minute or I check my sister is contactable.

Badger "I'm realising that caring for your elderly parents is just literally lurching from one bloody crisis to the next, and never let your guard down thinking it's OK........"

Yes. It's easier to expect and be prepared for crises.

@funnelfan changing from one environment from another often means a rapid downhill decline (my Dad did it last week when moving from the hospice into the care home). He's been so much more settled this weekend, and has almost been Dad again in patches. And with dementia, it's even more unsettling I'd imagine.

I'm realising that caring for your elderly parents is just literally lurching from one bloody crisis to the next, and never let your guard down thinking it's OK........

@funnelfan if possible I'd check the information the discharge team were using. I was being told by the hospital discharge team that my Mum was mobile and able to go to the toilet on her own, but the ward staff confirmed she needed help to stand from a chair and 2 staff to get her to the toilet. The staff on the ward were brilliant but it was clear that the discharge team wanted her out ASAP even if it meant sending her to somewhere unsuitable for her needs.

@funnelfan so sorry to read this… would it be worth contacting the assessment unit who discharged her? I recall something about hospitals being measured on readmittance after discharge…. To say this is effectively an unsafe discharge? Not sure what the time element is- days/ week.
We also understand the pressure here… 🌺🌺

funnel "I'm shuffling back awkwardly hoping you can all overlook my dramatic "I can't cope" flounce a few days ago..."

please think nothing of it. I've been months without looking or posting.

I am sorry to hear of the situation. I think the focus should be getting her into respite care to get you a breathing space to decide what happens next.

I don't know about dementia but one thing struck me right away. Was she better in hospital because of the bright light? Our brains work differently in bright light, so I wondered what the home lighting was like.

I have SAD to some extent, and really notice lighting differences in every place - home, shops, public transport, offices, everything. I think the brain relies on light for a level of cognitive function.

I really hope you can get something sorted soon.

Oh goodness funnel! (Sorry not ignoring other posts but yours feels most urgent.)

Speaking to the Gp tomorrow seems best but rather than focusing on the LBD as the headline I'd focus on the fact that she has already deteriorated past what the care package put in place allowed for and that you're filling the gap but will have to leave soon.

Does it seem as if a nursing home might work better now? But yes do mention the LBD as part of the issue.

Tbh if she was better in hospital why not let the carer make the call?

@funnelfan have a hug. Lewy body dementia is a barstard disease. Work colleagues dad had it and he had to go into a home very quickly due to his hallucinations.

I'm shuffling back awkwardly hoping you can all overlook my dramatic "I can't cope" flounce a few days ago...

Not sure if this is a sanity check request or a hand hold: basically, after a couple of weeks in an assessment centre, DM returned to cognitively as good as she gets (cracking jokes, making conversation) and she was returned home with a 4x care assessment package last week. However, within 48 hours she returned to the state she was before going into hospital - poor cognitively and physically.

Carer saw the dramatic drop in condition and wanted to call an ambulance, I declined on the basis this was not new and was not a life-threatening situation, and generally she has bad and not so bad days and would improve in a day or so.

I'm calling her GP tomorrow morning, but in preparation I went through all the discharge paperwork from the hospital in detail to note one of the doctors thought mum may have Lewy Body Disease - which I looked up. It explains a lot, and she ticks virtually every box on the NHS list of symptoms. I'm rather cross that no-one thought to mention this to us, save one short line in the midst of sheafs of paper, and prepare us for what to expect. So my plan for tomorrow morning is:

• Speak to GP and ask for medical support for this diagnosis, and a realistic discussion on her outlook given the recent rate of decline
• Ask GP to ask for an urgent repeat social/OT assessment to see her as she is at home and not in hospital when they've brushed her up. Carers said this had to come from the GP and not through them as we've not been through the care at home assessment yet. In hospital she managed fine getting out of bed and could walk with her stick and was allowed to get up and move around unsupervised. At home she's basically bed bound and needs assistance to move around.

I'm stuck here at the moment - the carer agency said as they can't execute visits safely with one carer then either I stay to help them or they call an ambulance and say she's unsafe on her own. Not keen on another cycle of hospitalisation if we end up here again unless its our only option to get the help she needs. Plus pressure on NHS, it's a social care not medical care issue etc etc.

Feeling very down today and burst into tears on the phone to mum
sometimes the elderly parent stuff is just the last straw

does that make sense to anyone? I would have managed to just get through the day but talking to her - she immediately started talking about a task I haven't managed to do yet, while repeating "no urgency" and I just got really upset.

I have reminded her that I'm years into suffering A&D but I think there's no shaking the illusion some people have - that as long as you look like you're okay, you must be okay.

sorry, I realise this crosses over into mental health territory.

I agree with @EmmaEmerald be careful about making suggestions. One of my brothers lives 5 hours away and is very free with telling those of us closer (but still an hour away) what we should be doing.

*once a week or fortnight, that should say!

Nevth "I desperately don't want to be the person who left all responsibilities to the people in my home country."

Only advice I can give is, don't feel guilty. You're far away enough for it not to be your problem, so why feel guilty?

Another thing may be worth saying - don't question the decisions of those doing the daily practical stuff, or make helpful "suggestions". My sister is around for mum about once or twice a week, and even then I get annoyed with the "Oh I've had a good idea, why don't you do xyz". Like I haven't already thought of it, being the main one in charge.

likewise, if you aren't moving back and won't have to deal with your dad, why worry about it.

we all have good and bad luck in life. Don't spend ages thinking about the burdens of others, it doesn't help them or you.

Hi all, a longtime lurker here who has been trying to glean some advice on how to deal with the likely rather imminent decline of my dad (who is a very difficult man indeed). I can't tell you enough how valuable it has been to read your experiences.

So sorry if this is not directly applicable as I know a lot of you have very significant care responsibilities. However, my mum is a lot younger than my dad, and my grandmother on her side is still alive and in her mid 90s. She's lived alone, no signs of dementia (and gone on many dates with younger men!) until a health scare in November. I've been slightly blindsided by her fast decline, as naively I expected my dad to be first in line. She's now in a respite home, has multiple heart issues, and also appears to have some sudden cognitive decline (telling everyone she wants to die, including on Christmas Day when my parents, cousins, relatives, etc were there, and holding on to them begging them not to leave).

I'm an only child, and to make matters more complicated, I left my northern European country for London 15 years ago (my family is still in the European country). I consider the UK home. I then moved to a country literally on the other side of the world two years ago. I am now - at best - three flights and a three hour drive away from my grandmother. I desperately don't want to be the person who left all responsibilities to the people in my home country.

I'm friendly but not particularly emotionally close to my mum. I've tried to use the advice given on this board to my mum over the phone. But it's incredibly hard going and my mum just says 'it is what it is'.

Sorry - I guess I'm not asking for practical advice as such, but more if there is anything I can do from an emotional perspective while being so far away. I expect this situation will be similar, but worse (as I have no intention on returning to the country I was born in), when my dad eventually starts to get more infirm.

Thanks all for listening - I was very close to my grandma (closer than my mum), so this all feels heartbreaking.

@Vcal2017 hearing you loud and clear. 'Care' is a doing word and by God it does us in.

my mum has been in a care home for about six weeks. It was a really difficult decision to make but in the end even with a care package at home up to 20 hours out of 24 it was too much for one person to manage and it was the constant worry and stress of it all.

Now she is in a home the stress and worry is much reduced
We do feel guilty about putting her in there as she always said she didnt want to go into one
But sadly the fact of the matter is she has alzheimers and vascular dementia which over the last 18 months has got worse and worse to the point it was no longer safe for her to be at home
in reality she probably should have gone in sooner
She has now list her mobility so they are using hoists and her speech and understanding is rapidly foung sadly. If she was still at home I feel she would have been bed bound just sont have hoists etc at home
It's a really difficult decision and I don't envy anyone having to make it. Dementia is truly awful all dignity is lost