The second new shiny 2019 thread ...

I send love and and etc to those above still coping.

I had a long phone convo last night with dear friend who lives a long way away. her mum is 86, currently in hospital with dementia and falls, plus various infections. her dad is 91 and has parkinsons, and is mum's carer. Hospital 'want to get her home before Easter' - yes of course they do! but there is fuck all in place, it makes me despair because DB and I were in the same place 8-6 months ago. There seems to be no joined up thinking whatsoever. told friend she has to get onto adult social care and refuse discharge before adequate care at home in place. friend has 2 adopted teens, oldest is autistic, her parents are 150 miles away. No one with any idea of sense would imagine a pre-Easter discharge doing nothing but falling apart, and possibly catastrophically.

Our complaint about mum's care continues to malinger: trust suggested we go to a meeting; DB quite rightly said not until they have answered our complaints in writing. Also requested information about patients/relatives advocates - nothing forthcoming but we are now dealing with PALS so I would imagine it would be them? anyway chucked ball back into their court, and I guess we can keep doing that despite them pointing out that there is a time limitation - only, they lost mum's records (allegedly) so as long as we keep kicking the ball back to them in good enough time until we get answers I think they dont' have a leg to stand on.

cockroach to all.

The trouble he didn't have many hobbies before he retired, only golf which he's not able to play. There's a chair yoga group local to them. Maybe i could suggest that.

No siblings or local family...they have a key safe and dad has an alarm cord since he got out of hospital and mum does manage to pop to the shops and she's having counselling once a week, but nothing really sociable.

I can understand your Dad not wanting to see people further along with Parkinson's...is there anything less specific to his illness he'd be able to manage?

Thanks MintyCedric They're reluctant to accept outside help though do manage to get to a lunch group once a week. My mum tends to go shopping once or twice a week and is happier leaving him now they have care alarms and a keysafe but she's in her early 80s herself and is not as mobile as she used to be.

I think dad is not keen on going to the Parkinson's support group in case he meets people who are further along the road than he is. He spent years working hard so that he could have a comfortable retirement and now can't he enjoy it and do the travelling they'd hoped for.

I know exactly how you feel about muddling through. It's hard isn't it. Do you have siblings to share the burden? Mine lives abroad so is no help but speaks to them weekly.

Jace I hope the meeting goes well. It does sound as though keeping your Dad where he is would be the most sensible option, and least stressful for all concerned.

Would there be scope for your mum to go to the same place should the need arise?

What I'm sending you a virtual ((hug)) as I know exactly how you feel. My dad doesn't sleep brilliantly, but even regardless of that doesn't really engage during the day and will often take himself up to his room and sleep all afternoon.

Mum is anxious about leaving him for any length of time so feels trapped, frustrated and lonely. All the local befriending services cost money which they wouldn't want to spend and probably wouldn't feel comfortable using. They've struggled a bit to get their heads around carers.

I'm hoping we can muddle through until the summer holidays and then I'll try to get her out at least once a week to some kind of group at the local community centre. with a bit of luck if I start her off she'll keep going once I get back to work.

Does your mum have anyone helping her out at all? I've been thinking if it comes to the crunch of seeing if we can get respite care a couple of afternoons a week so mum can either get out without worrying, or someone could take Dad out so she can relax at home.

He's sleeping 5 or 6 hours in the day due to the disturbed nights plus his down spells are getting longer. Unfortunately there's no funding in his health authority for a dopamine pump and they refused to refer him on to the neighbouring HA (mine) who were happy to take him on.

We have just put LPAs into place so i will go with him to the next consultant appointment and see what they suggest. Will try and up my visits too.

I think my last posts were more to do with mum who's had 2 falls (breaks) in the last couple of years and coping with my dad whilst she was in hospital.

What I don't know the back story

how long does he sleep for?

Jace good care homes - you mean you'd like to keep him where he is? I totally see why. i would hope none of the professionals would stand in your way.

Hi, I've posted a couple of times on elderly parents but dipping back in as this evening I've had 40 minutes of listening to my mum ranting down the phone. She seems to have finally reached the end of her tether.

The trouble is my dad (who has Parkinson's) sleeps so badly at night that he falls asleep in his chair during the day. So it's led to them barely leaving the house, which leads to mum being frustrated and lashing out against people.

So tomorrow when I have a mountain of work to do, i shall go to see if there's anything else i can do to give her a break and try to persuade them to go to their local support group. I really do hate this disease and what it's done to my dad

DF rehab review is on Wednesday
Rehab team are working towards final aim of getting him home after stroke in October
I’m on fence with this one as not sure how DM with dementia (still in own home) will cope with him
I’m worried about them becoming isolated and have mixed feelings about if the social care package will work
DF SW wants to call a best interest meeting which has confused me as we have LPOA and do involve him where possible and are acting in his best interests! Just not sure what they will be
Quick summary rehab team say he should go home from nursing home
SW says won’t meet funding criteria as care package he would need would be too high (2 carers x 4 a day for 1.5 hours) so should stay in nursing home
Family not sure which is best and need to consider DM
Current nursing home lovely with affordable top ups n I’m worried if we try to move him home and it doesn’t work out we won’t be able to get him back there as vacancies rarely come up there

Hi spinn - my mum is on her own and I’ve been raising concerns with her GP for over a year now. She moved from having memory issues to making up stories- I’m told it’s called “confabulation”. The individual really believes the story is true, and it’s a way of filling the gaps in their memory.

She got increasingly bad, and I kept raising concerns with her GP, but it all came to a head when she fell and broke her ankle.

At this point adult social services became involved, and they have been fantastic through the whole sorry story. I wish I’d got in touch with them earlier.

We’re still in a complete mess, not helped by the fact me and my Dsis both live over 5 hours away from DM. I take my metaphorical hat off to those of you on here that do the day to day stuff all the time.

So (in short!) if you don’t get anywhere with the GP I’d think about speaking to adult social services. But that’s just based on my limited experience

Hi Spinn I phoned my DM's GP surgery and asked them the best way to raise her memory issues. They arranged for her GP to call me, and I went through my concerns with her - I could see that she was struggling, but knew she would be in denial. GP arranged an appointment for us both to go in for a health check up, and did the initial memory test as part of that. She failed that, and was then referred to hospital for a more in depth test. To be honest, I'm not sure that having a diagnosis of dementia made any difference, other than to put a name to it in her case. She still denies she has anything more than an aging memory, lives on her own and has no idea what day/month/year it is, but then she doesn't really need to.

spinn I didnt want to leave you unanswered, but that's what I kind of have to do because I have to go to bed! be assured, someone will read and have good advice for what sounds like a really tough situation - catch up tomorrow but in the meantime or gin, or wine or....

Hi, I'm new on this thread but have periodically lurked whilst in denial also but things have come more and more prominent so we need to start reviewing the plans in place for my parents.

Both parents at late 70's and are showing signs of dementia but are both in denial in different ways. My father has stoically accepted his challenges and slowed down and changed what he does to match what he can do and that's chugging along ok. My mother however is trying to keep her old life going and is sinking and I could really do with some suggestions -

She will tell us her memory isn't good so we are starting to broach things with her but she is also fiercely independent and won't stop.

Last week she had an accident which she should have gone to hospital for straight away but left it and went to the drs the following morning who sent her up to the hospital. A few months ago my dad was having chest pain and she refused to call an ambulance and offered some paracetamol because she didn't want to waste their time (luckily my sibling popped in and called them as it was a heart attack).

I'm going over this week and plan to have a frank conversation about medical care but would love it if anyone has any suggestion for ideas which would help here?
Can I contact her gp and flag a concern? The fact she went to the gp about it and is going again this week to ask a question about the injury would back up our concerns but I don't know if they would even listen to our concerns (I know they can't give info out but can they take it in?)

So glad you have had a lovely day yolo🍷🍷🌺
Yes minty you cannot shoulder it all.... try carers uk/ carers association- even sitters for your df, support for your mum etc- please make your job to facilitate support. Or it will break you.
cockroach all

minty you cannot do it all. Even 'just' being the emotional support is too much - we need to start planning how you can divorce yourself a little bit so that you can have some space to refresh yourself. I am too pissed to say anything sensible now, but someone else will xx

I like the mathematical precision nota! they will probably root, in our local(ish) park they've made a beautiful little tepee type thing out of bare willow twigs. DD1 very kindly bought me home a bundle of some sort of red willow twiggy things from uni at xmas, they've sat in the porch til now sprouting away so I'm going to stick them somewhere in the field and see if they do. god knows what they are!

to whoever it was upthread who mentioned 'puncturing the balloon' - I feel you.

We've had a lovely day, DD2 was 20 today, DD1 came home from uni this am so we had a pub lunch and then fuelled by several glasses of I cleared out the shed which has not been touched apart from to dump stuff in for about 10 years. Feeling the ache now!

Yolo as promised, a deadly dull photo of willow sticks.

any one of us can spin the plates for just so long, but when one goes they folllow pretty quickly it seems to me... it took 5 short months for literally everything to go tits up with mum, until June 5 last year I would have thought it was all fine(ish). Look after yourself my friends...

It's the constant spinning of plates, isn't it?

I've dropped loads of plates recently. My health, both physical and mental, my work, relationships, etc, have all been suffering as a consequence. A friend said to me that if I was to go down I would pull everyone else down with me, so I am trying hard not to be responsible for everyone's everything.

Went to DMs this morning and she moaned for the hour she was there. I kept thinking, can I try 'look there's a squirrel', but I think I have been stoney faced so long in the face of her negativity that there are no squirrels to be seen. She knows I silently judge her (she really is bloody horrible about anyone that she comes into contact with, and has been for years), and hates me for it. She thinks I am stuck up because I don't join in slagging everyone off. It is always my goal to get there and back on a Sunday morning so that the visit doesn't totally suck the life out of the weekend.

God that was depressing!

Tbf it's not just the parents, it's the single parenting and working full time and running a house on my own with no support, and all the practical and financial implications that go with these things.

I know there are loads of people in a similar boat and I'm luckier than many. It just all feels a bit shit at the moment.

please look at carers/ cleaners anyone who can pick up some of the burden.

The thing is, most of it is just general ad hoc social and emotional support that they need. Dad is in a horrible place mentally, and mum is having to do everything and getting nothing in return. He literally eats and sleeps, struggles with speech when he's tired, half the time when he's watching TV he's actually away with fairies and he frequently talks about killing himself.

Mum is actually very capable and a bit of a control freak but she tends to be highly strung at the best of times, and she's currently overwhelmed with everything, although when I sit down and break it down with her it's never as bad as it seems.

She's also terrified of spending money as she's worried that Dad will die and she'll be left without his pension income and struggle financially.

The overwhelm is making it almost impossible for her to make any decisions but she won't let anyone else take over.

I guess I just need to accept that all I can do is my best and let whatever happens, happen.

I've been trying not to get in the habit of regular visits since I moved out, as we've gone that route before and the tantrums when I couldn't make it were epic, but I think I'm going to have to rethink that.

At least if there are regular times I'm seeing them, mum knows when she's getting support/company and I can hopefully just crack on and do my thing outside of those times without worrying or feeling guilty so much.

I don't think you can take that on as well as everything else.

I don't think I have a choice, it's just a case of managing the situation as best I can. I'm finally beginning to make peace with the fact that my life will be at least partially on hold now until the inevitable eventually happens.

after I posted this, I was thinking it over

sandwich yes, it is a bit like a happy bubble being punctured

but actually I think my parents got better over the years, now mum seems to be reverting back to when it was worse. Perhaps it's swings and roundabouts depending on moods.

I'll be honest, I was particularly annoyed yesterday because I was looking forward to today - mum's got some nice friends coming round for lunch - and she started moaning about she wished she'd not organised it. This was among other moans. I like it when mum's friends come by at the weekend so I can see them. it seems weird and rude to be slagging off people who are meant to be your friends.

then again, even the Dowager Countess said "I have plenty of friends I don't like".

Cedric when you say "how will we make this work" when you return to FT, I'm not sure what you mean? Do you just mean company for your folks? I don't think you can take that on as well as everything else.

dint I do hope things improve for your dad- he sounds so lovely.
yolo that charity work is a massive achievement. Respect!
rosa I know what you mean. Like being punctured. That’s when I try and consciously apply the metaphorical Teflon to my shoulders to try and protect myself.
cedric you have so much going on- reach out to get whatever help or other people involved- please look at carers/ cleaners anyone who can pick up some of the burden.
Do what only you can do. And protect yourself. 🌺🌺

yolo it honestly sounds like you couldn't have done more for your mum, and you've got your own family to prioritise now, so I hope you are able to detach from your brother a bit.

I've had mum having a bit of a meltdown today. Hadn't planned to see them but she asked me to drop something in for Dad. Was met with lunch and then a lengthy character assassination about how I'm not seeing them often/for long enough since I'm on school holidays at the moment.

Fortunately I've now realised this is how she reacts when she's stressed/overwhelmed so after giving her a bit of a mouthful back (pointing out that I've been round there/seen her 4/5 days this week and phone on average 2-3x day - didn't see her one day and we were on the phone 5x), gave her a hug and sat down and had a chat with her. My Dad tried to stand up for me and pointed out all the stuff I've done for them this week, bless him.

Have put plans in place for the next few days for me to do/help with a few admin jobs, and we'll take Dad out for his birthday next week. Spoke to her this evening and she's still quite low but hopefully a good night's sleep will help.

God knows how we're going to make this work when I go back to my usual full time hours in a couple of weeks. They have few friends locally and those that are still around are a fair bit younger and either still working or tied up with grandkids.

A couple of her neighbours have been really good and a couple more are quite friendly a d actively asking after dad.

Starting to wonder if it's worth me reaching out to them as mum seems reluctant to ask anybody other than me for help/support.