Stage 5 Parkinson's - any tips and thoughts very welcome

[Valleyofthedollymix]

Thanks in advance.

88yo DF has textbook stage 5 Parkinson's - he's in a wheelchair, very bent over, extremely poor mobility. He has a live-in carer and it's getting to the point where he can't be left alone at all. In other words, he has additional carers to cover for the main carer's break as otherwise he's at risk of further falls.

The GP has been reasonably helpful but now that it's what might be termed end-stage, I've got lots of queries and don't know where to turn. Was hoping that marvellous MN could help me get a jump on this.

a) If anyone else has had a parent in this position, how did it progress from here? He's been in a wheelchair for about a month, previously he used a rollator. He can push himself up and get onto the commode but needs help beyond this for all aspects of living. It feels like his mobility is deteriorating rapidly.

b) Which of the Parkinson's charities is best for advice? Parkinson's UK, Parkinson's Foundation etc.

c) Someone has mentioned to me that he should be attended by a specialist Parkinson's nurse. Does anyone know anything about this? Is it referred through GP?

d) He wants to stay at home and I'm keen to support him in this. My brother thinks that it's all becoming untenable. There does come a point, I can see, where the house has so much equipment and carers that it stops being a home and becomes a care home.

e) What does palliative care mean in Parkinson's situation?

Any thoughts very very welcome.

It's a challenging situation for you and your brother. My information is a bit rusty as MIL, who had parkinsons, died about 7 years ago now but, from memory, your DF is likely to get to a point where he's better off in a care facility. For MIL that came when she fell getting off the loo and hit her head on the sink. She went into hospital and then into a care home.

Also, by then, MIL kept forgetting that she couldn't walk andtried to get up out of her wheelchair, which risked further injury. Parkinson's nurses seem to be an area by area thing. MIL's sister lives in London which had these nurses. MIL was in Cheshire, which didn't seem to.

DH found that the Parkinson's society phone line was helpful for him to talk through what was happening with his mum. Putting it bluntly, your dad isn't going to get any better than he is today, and the deterioration keeps getting quicker, so ensure that support is there for you too. Do you have POA in place for your DF?

My DF had Parkinsons and Lewey Body dementia. It was the LB which caused the most trouble and we did eventually find a care home to have him.

I found the tablets he had to take were also an issue as they were all meant to be taken at certain times during the day and he would just take them whenever.

It was a massive relief when we finally found a home for him.

Yes we do have POA for him and my mother. She lives with him but has Alzheimer's so isn't very helpful, putting it politely, as we're having to juggle her changing and increasing care needs simultaneously.

Normally I'm in favour of trying to take action before it becomes an emergency situation. In other words, to move him into a home before something happens to take the choice away. But I don't think he's going to live a long time, given his age and rate of decline, so I'm presently opting for muddling through.

Thank you both so much for sharing your experiences. I think I'm going to use a hospital trip as a possible catalyst for reviewing the arrangements. He went in four times in eight months before we got live-in carers but he's not been in since November, miraculously. And I'll try the Parkinson's Society.

My mil had Parkinson's and she had to go into a care home. DH had his first proper nights sleep in months the week she went into the home. He had been so stressed and was always on alert for a call due to her falling or other issues. Anytime she got a kidney infection it required a hospital stay. What we found was happening was that DH's own health was suffering. Towards the end she had no inclination to even try walking with the Walker. God love her she was just so fed up and miserable. She eventually died from a massive blood clot so it was actually all very sudden and a bit of a shock when it happened. Sorry OP it must be a tough time for you.

Thanks Sparky. Do you mind me asking how old your MIL was? How long was it between going into a care home and her dying?

Sorry I feel so callous for even asking these questions but I'm trying to work out the unknoweable ie how long he might have as that will inform our decisions. DF sounds like he's beyond where your MIL was in that he'd love to use the walker but just physically can't even begin to. He's in constant pain and depressed, having until recently been engaged with his hobbies and the world. It's shit and frankly I don't want him to live like this for years.

It's very tough and is coming right off the back of my adolescent daughter being ill for a couple of years. But I really appreciate these responses.

@Mumsafan Gosh, your comment so mirrors my DF. Again Lewy Body dementia I feel overtook the Parkinson disease. 2.5 years in and DF is in a care home.

To the OP - could only see a foot shuffle and shaky hand, unable to walk now and they are not sure if it is down to the Parkinsons or LB dementia.

My DM had Parkinson's for about 7 years between diagnosis and death. She went down hill rapidly in the last year of her life, to become entirely bedbound.
It was very obvious when she was nearing the end, I would say for the last 3-4 months she lost significant weight, to little more than a skeleton and was entirely bed-bound.
She was able to stay at home with 4 carer visits a day and overnight support from my dad, although it really took a toll on my dad.

I'm sorry you are going through this.

She was late 60s when diagnosed and died aged 75

He was actually only diagnosed in July 2020. But he's pretty much raced through the stages. We joke that for both my parents, it's a fast-moving situation with very slow moving people (gallows humour). I guess being an octogenarian means Parkinson's is a co-morbidity to general age and fraility.

Stumbling, that must have been very sad for your family and I appreciate you sharing it. It's useful (albeit it sad) for me to know as I don't think he's a million miles from the point at which you say it became obvious. He couldn't be at home without a live-in carer and he's shrinking - he's lost nearly a foot in height and a couple of stone in weight. He's only out of bed for about eight hours out of the 24.

Thank you all again, it's really helpful to me and generous of you to share these painful memories.

@Valleyofthedollymix my mil was early or mid sixties when she was diagnosed and about 68 when she needed full time residential care. We had already tried an excellent sheltered housing development for her but her need's became too severe. She also became very very depressed. She was about 73 when she died.

Thanks so much for sharing this information @SparkyBlue. I'm amazed (and horrified tbh) that there were five years between needing full-time residential care and her death. I don't want my father to die, but I really don't want him to go on deteriorating at this rate and living with so much pain and increasing depression.

I think that my father being so old at diagnosis (85) means that it's all incomparable. And every person and every Parkinson's progress is unique. It's one of the things that I'm struggling with. Friends whose parents have been diagnosed with cancers get told it'll be x months/years and it's followed that almost to the day.

Thanks to the advice here I've phoned the Parkinson's Society and they told me that you have to agitate hard to get the sort of monitoring that someone in my father's condition should be getting. So now I'm hassling the GP for his notes and I'm going to then turn my guns on the consultants. I'm a crap carer, that's why we're paying others, but I'm good at polite pushiness.

Again many thanks to you all for helping me with fact finding and tolerating intrusive questions.

I'm in the same situation but my dad is slightly younger (79 with 15+ years of PD).

a) My dad has been using a wheelchair for almost a year and can no longer walk at all. He has carers to get him out of bed and washed in the morning and can just about manage to get into bed in the evening with mum's help. He's incontinent but we're waiting for a specialist nurse to organise a catheter.

b) Parkinson's UK were very helpful when we had a crisis.

c) How long has he had Parkinson's? Guidelines say that your dad should see a consultant every year and a Parkinson's nurse at the 6 month interval between. Having said that my dad hasn't seen his consultant (who has now retired) since Autumn 2019. The local nurse is now trying to deal with all the patients in the area. I'm waiting for her to return my call from yesterday as I need to speak to her about his care going forward.

d) My dad was always adamant that he didn't want to go into a care home. However today he has finally agreed to have a brief period of respite care as my mum is not coping and not well herself.

e) I'm trying not to think about palliative care right now. I think we're at the beginning of the end but I'm not sure how long the process will be. Internet searches seem to think 6-12 months, because I imagine he'll be bedbound soon. Most days he's either in bed or asleep in his chair.

It's really taken it's toll on mum's health over the last year and heart-breaking to watch his decline.

My MIL was diagnosed with Parkinson’s about 8 years ago aged 78, went downhill quite rapidly, diagnosed with LB dementia about 5 years ago, and went into a nursing home 3 years ago. FIL was not capable of caring for her at home and live-in care was not an option. She’s been in the home for 3 years, has lost of lot of weight, is pretty much immobile and doubly incontinent. I don’t think she has any awareness of where she is, though she still responds sometimes to people. She can’t speak, read, knit, etc. FIL visits daily. She spends a lot of time in bed.

I’m going to be very blunt below, and apologise in advance for this.

as i understand it Parkinson’s doesn’t actually kill people. Falls and pneumonia are what elderly sufferers usually die from. She’s no longer mobile, so falls aren’t a concern. She has had several chest infections, but gets given antibiotics and recovers to ‘live’ another day. She currently has Covid: I have no idea if FIL has talked to the nurses / dr about what should be done (or not done) if she gets seriously ill.

i read a description of end-stage Parkinson’s and MIL is clearly there. But it’s not going to kill her in itself. Basically, she could live for years and years in her condition.

she no longer sees any Parkinson’s specialists but the Parkinson’s nurse was useful as a source of info when the diagnosis was first made.

I’m sorry not to be the bearer of better tidings: it’s a really horrible, difficult situation for everyone.

Thank you both for your replies, really appreciate it. The more information the better as far as I'm concerned.

WhatHave he's only been diagnosed three years so progress has been very rapid, I expect because he was 85. When he was diagnosed I read up about it and remember being horrified that most sufferers became non-ambulatory within 10 years. And then I thought, hang on, most people are non-ambulatory, one way or another, at 95.

Choc Yes, what you say tallies with what I've gleaned from the internet, the not dying from Parkinson's but from falls or an infection. My father finds eating very difficult as he's so bent so I imagine he's at risk of aspiration pneumonia. I'm so sorry, your MIL's situation sounds grim and, again with apologies for bluntness, I really wouldn't want that for my father. I can see why pneumonia used to be called the old man's friend. It must be very difficult for you, your DH and your FIL.

I wish I'd spoken to my parents about advanced directives when they were healthy and their 70s.

If he has capacity, he can still make an advance direction - and I'd very strongly recommend doing so. Keep the original yourself and make sure copies are lodged with as many places as possible (GP for certain, local hospitals and ambulance service if they have a system for it - don't know if that was just a local thing for my dad.

Mobility may be the deciding factor about remaining at home/moving to a care home. If he needs hoists etc then a care home will have multiple types - and staff trained to operate them - so he can use what he needs in the moment rather than being stuck with only 1 type.

Food is another - once he begins to have swallowing difficulties, a care home with chef who can prepare a nutritional menu in the right textures, rather than just randomly blending ordinary meals together, will make eating a bit nicer.

Parkinsons nurses don't 'attend' people like a district nurse, or an old fashioned invalid nurse - they're for things like meds reviews, ongoing advice etc. A sort of 'consultant's assistant' for Parkinsons-related things that you might otherwise see a GP for.

Palliative care is unlikely to mean withdrawing any of the parkinsons meds - they are not life-prolonging. Instead it would be about deciding whether or not to treat acute conditions that arise alongside: IV antibiotics for infections, for example

What about cognition? Does your DF still have the capacity to make an informed decision about remaining at home or going into a care home? What does he want? Does he understand the risks/benefits of being at home?
My DM had Parkinson’s Disease but was still very sharp and had no cognition difficulties right up until she died.
She was able to make an informed choice about her end of life care.