Caring for elderly parents? Drop in for support, hand holding and whatever you need

[thesandwich]

Continuing the long running threads for anyone juggling elderlies and everything else. Loads of wisdom, support and the odd laugh...
How are you all doing?
How is everyone coping with the extra teens with exam challenges?

Hello. I've just realised that I've spent 16 years dealing with my ILs health problems & we're getting to crisis point. First MIL had leukaemia, so she lived with us throughout her treatment whilst I was pregnant & had my new born baby. We all survived(!) but MIL retired at 55 and had on going health issues as a result of the radiotherapy & chemo. 8 years ago this week FIL had a massive heart attack & because MIL couldn't help him, he suffered a brain injury which affected his mobility, motor skills & memory. MIL effectively became his carer.

We started to notice more & more issues with her memory, personality & mobility. All memory clinic appointments were treated with scorn & their GP showed an appalling lack of interest in them. FIL now has chronic leukaemia and has retreated into his shell. He rarely leaves the house, but seems contented in his own little bubble with his cat.

MIL had two hip replacements, didn't do the physio, has severe incontinence and constant falls. She has had hospital stays after mini strokes & falls, but no follow up. After repeated call outs to pick her up, SS have become involved in the last 3 weeks. They have always been sent away in the past, but finally got MIL into a physio & respite unit in a care home 10 days ago when we were on holiday. They've decided she's has memory issues as well as being immobile. She's spending all day lying on her bed as her legs keep giving way & it's taking 3 staff to pick her up.

We had mixed messages implying she was being sent home. Today we've established that the care home can't cope with her & SS have queried why nobody has been dealing with her complex needs or developing a care plan. They sent someone to do a home assessment, as MIL is adamant she is going home. SS think she needs carers twice a day, but FIL has said they can manage without as they have a cleaner once a week! Nobody is assessing him alongside MIL. Their needs are too complex for sheltered accommodation & MIL thinks care homes are the modern day equivalent of the workhouse and is rude to any care professionals who suggest they need help. SS say they are both in complete denial of the seriousness of the situation.

We are the closest of their kids, but have a stretch of water between us. Moving them to the mainland is not an option. Friend's & family locally are finding them increasingly difficult to visit and are gradually abandoning them. We have a meeting with SS on Wednesday. We were so hopeful that respite & physio would help & were told she would be cared for for up to 2 months. Now she seems to be on the verge of being sent home yet again in a worse physical condition than when she went in.

Sorry for the long rant, but they won't/ can't help themselves, all help offered is rejected, the GP's support & interest is non- existent & SS don't know what to do with them & can't get involved if MIL & FIL won't let them cross the threshold. Money is not an issue. They won't even apply for blue badges despite both only being able to leave the house in wheel chairs, so they won't claim any benefits which may confirm that they are disabled. We are at the end of our tether, it's affecting their sons' health, both mentally & physically. However, I do feel better for writing all this down!

Hi sticker that sounds really tough. If I was in that situation I would refuse to take responsibility for her discharge from hospital, and ask to be present at the multi disciplinary meeting where they discuss her needs post hospital, and raise the fact that her health and her husbands need to be taken into account. Effectively you have to be their advocate, which may involve contradicting what they say about their abilities. In my experience with my mum, they various agencies are overworked enough that if they get someone saying they are fine, it is tempting to take that at face value. But if someone else if there to say, well, that's not actually the case, then it changes things.

The boys are honest with all the agencies involved, now they've finally shown some interest in the ILs, but the ILs don't tell us who they are refusing to let over the threshold & don't think they need to give permission to anyone to speak to us (as there's nothing wrong with them, in their opinion). They are both very intelligent with professional backgrounds. They either intimidate care workers or treat SS/medical staff with such disdain that they want as little to do with them as possible. This has backfired, as the SW finally assigned to MIL is treating this as a sure sign of issues, luckily for us!

Last time she discharged herself from hospital and FIL had to use his buzzer within an hour to get her up off the floor again! They have nobody locally, as Mill's brother died suddenly a few weeks ago. In theory we can be there within a couple of hours in an emergency, but they rarely tell us if there is an emergency. She refused respite 3 weeks ago and only accepted the place two weeks ago because one of the boys had paid a surprise visit at the same time as SS turned up, so they were allowed in. It's only when you step back you see how bad things are, but there's no joined up care.

I think parents refusing to engage with the statutory agencies - or denying that they might need assistance, even when it's quite obvious that they do - adds hugely to the difficulty and frustration. It's interesting too to hear how variable GPs can be. My mother's GP has changed and the new one doesn't seem to grasp what's going on and has nothing useful to suggest. The previous one would, I think, have offered far better support.

Just spent an hour with my SW chum ( different local authority, but elderly care specialist). Now an
Med with a list of questions & info necessary to help them join the dots. Feeling much more positive (until the boys come home tomorrow!)

Who are the boys? That sounds tough. My DM doesn't really engage with the services. She's uncooperative, which is problematic because it's DF who is ill. My Dsis thinks the hospice will get fed up with them and stop supporting them.

Difficult though the situation is, at least their isolation makes it clear to the services that they need support. If you lived nearer, they might try and leave it with you.

Sorry, 2 of their 3 sons including my DH, collectively known as the boys despite being middle aged. My head is too full of finding power of attorney paperwork, attendance allowance forms and so on today to cope with DH, DBIL1, DBIL2 etc. My last post was gibberish as I was using my mobile with auto corrected "armed" to "an Med".

My SW chum says they must state that they are utterly dependent upon the alarm service to pick MIL up off the floor 3 or 4 times a day, that if they propose a carer to come in first thing and in the evening that we must ask what happens when she needs the loo during the day, that because they have refused to have ramps fitted neither of them can leave the house without it taking 20 minutes to get down 2 steps with support from 2 people and so on.

Thank goodness for SW chums!

Yes indeed! It's always so helpful to know the key words that will trigger the right response from the various agencies.

Stickerrocks, I empathise. I have been quiet recently, partly because I assume people are bored with me hanging around, but also because I am making the most of a relative plateau (DM in the right setting, good carer, relative truce with sibling, and ILs still independent) after what I realise is almost a decade of first my father and then my mother being ill.

I'm tired. The dementia means that much of my mother has gone, and to be honest she always preferred DB anyway. I face perhaps another ten years of slow and ever more complicated decline, and long round trips. Then more of round trips in the other direction supporting DH. Plus lots of time spent managing my mother's assets/affairs.

Its shit isn't it.

Best wishes to everyone

At least things are calm, need More Sleep! I think we underestimate how tired we become after years of stress. I feel like I haven't fully got back to myself after a few stressful years, and can't imagine how I ever kept up with myself.

Nms you are never boring! You always have a lot of wisdom and experience to share! calmish here too...
hope everyone else is doing ok- mrs? More? CMOT?

Has anybody got any experience of the NHS Continuing Healthcare funding process? I have an initial meeting for DDad on Monday.

Stick so sorry. My father has passed away now. Through bereavement counselling I've been able to articulate so much frustration about being shut out of permissions, discussions, information, decisions, everything ... yet still being regarded as being responsible.

I would make detailed, tailored, costed care arrangements only for them to be cancelled the next day.

Penfold have you read this thread?
www.mumsnet.com/Talk/elderly_parents/1342129-Has-anyone-been-successful-in-obtaining-NHS-funded-continuing-care-for-their-elderly-parent Might help

Right, she's coming home next week with carers at least twice a day. We discovered they had used their buzzer 17 times in July, so I'm surprised the response team still want to know. She argued about not being able to dictate when she will be got in & out of bed, but was told she had to get on with it.

Meanwhile DH had to deal with it by himself as DBIL2 was in A&E 100 miles away with his partner who has suspected meningitis.

Can anyone recommend a good company for a waterproof covered chair which can raise her to a standing position & sit her down again?

stick can you ask OT to go to her house to do a needs assessment? They supplied my mum with quite a few mobility aids as well as waterproof pressure cushion and mattress.

Sorry haven't posted in a while,just been plodding on and my heart goes out to everyone with all their different challenges. Usually I am quite strong but looking for a wee hand hold today,my dad has parkinsons and after falling and breaking his hip in march this year needs constant care.My mum who is his carer and cannot walk the length of herself due to various conditions had been told she needs to go into hospital with her crohn's for a stay. Had to hand in a line to work just to give me some breathing space,which have never had to do and that worries me as well .I need to spread my time between home (kids)my dad's (worried sick about him there)and hospital. Have arranged for carers to go in 4 times a day for him for meals etc as I cannot be there all the time and the guilt is horrendous. Just so worried about my mum and dad (who still falls) and the future sorry rambling a bit .

Hi foxy I feel your pain. Does your work have a policy on carers leave? Many places do, and worth looking into. Does your dad have an alert alarm in case of falls? FWIW, don't feel guilty, we do what we can do. I think my husband and kids are really suffering most at the moment as I have so little time for them, but I am really aware that I am putting my own needs last and that in itself in placing me at risk of illness.

Have some of these .

And more from me too, foxy and a ::supportive hand squeeze:: We all do what we can, and this thread often reminds me that it's impossible to do everything and we need to take care of ourselves, too.

thesandwich thank you

Thank you so much for your lovely messages and all back to you ,sometimes you feel so lonely and people just don't get it the total feeling of overwhelmness (is that a word haha)worry ,despair and guilt but on this thread we are all just the same trying to get by.At the end of the day we are just human and can only do so much. Well taking my mum in today praying with all my heart nothing sinister.

Thinking of you foxy

That's a start, stick!
Foxy

So my mum has pneumonia
My parents stay in independent living but with a warden who advised to contact social services about the possibility of my dad going into rest bite.Apparently when he came out from hospital after his broken hip he should have been assigned one?I feel so guilty but I honestly never knew .The guilt just now is horrendous and my poor wee dad bless him ,but is so hard work and in his own bubble. So meeting with the social tomorrow to assess him ,but my mum honestly can't go back to being his carer she is too ill.Oh well keep plodding on ,thoughts to all doing the same .