Late stage Parkinson’s disease

[gluenotsoup]

Does anyone have any experience of this please?
My father in law has had Parkinson’s for a long time, 10 years or more. Over the last couple of months he has really deteriorated, and is suffering in every way. His movement patterns, speech, continence and all sorts of other things are severely affected. He has lost a huge amount of weight and looks so ill.

He has started to have delusions constantly that family members have been hurt, and all sorts of imaginings. He was admitted to hospital over a week ago, and if anything is worse. He can’t get out of bed, manage personal care, doesn’t always recognise us, and continues to have dreadful delusions. Unfortunately, we’re not getting any answers. Is this what happens typically, or is it something else that hasn’t been picked up? What should we expect next? How to help him best? And- is it likely to be that he’s coming to the end of his life?

It’s heart breaking to see him reduced and suffering, we just don’t know what to expect next.
Any experience shared will be greatly appreciated x

( I put this on the elderly parents section, but no replies so far, so put it here too. Hope it doesn’t cause any upset).

I didn't want to read and run. My lovely dad passed away with Parkinson's a few months ago. It truly is the worst disease, it robs the sufferer of everything. I'm sorry your family is witnessing this cruel disease just as mine did.

If he's in his final stages we found a Macmillan nurse referral really supportive, along with a good Parkinson's nurse.

The disease is so unpredictable that I don't think anyone can tell you when it's the end, everyone is different. Trust his consultant and his nurses.

We also found a mental health assessment useful from a mental health nurse, this was done in the home and he was given patches as my dads hallucinations were caused by Parkinson's meds, I can't remember the name but they worked.

If he's at the point where his swallowing is starting to go we also had a referral to the SALT team in the hospital and this carried on at home.

Sending love x

Also urology can sort a permanent catheter for his urinary problems. We also found a daily laxative helped with the constipation.

There's a forum on Parkinson's UK that seems quite active, we found that the admiral nurses deal with dementia (if he's diagnosed with dementia) and help family members but they may not operate in your area, they didn't in ours but they have a helpline you can phone and talk to someone.

Everytime my dad went in to hospital he would get worse as they didn’t prioritise the medication being given at the right time. We’d have to explain it to the nurse in charge each time and really force the issue. In the end it was agreed he would only be admitted overnight whilst having active treatment. I’m not saying that’s what’s happened but do make sure they are giving it on time everytime. My Dad went through stages and so many ups and downs. It’s a cruel cruel disease. Sorry to anyone going through this.

I am so sorry to read this - my father's Parkinson's progressed in a very similar way. We initially found that one of the drugs was causing the delusions, and he was put back on Benzhexol, which is more old-fashioned but suited him better.

Sadly he then developed dementia as well, which is now more common as people are surviving longer with Parkinson's. There are anti-anxiety drugs which can help with some of the symptoms - my dad was on citalopram, for example.
He was in a similar condition to your father-in-law for 2-3 years, which was heartbreaking, for both him and my mum who cared for him at home. (He was only 65 when he died, having been diagnosed at 55).

In terms of help, the most useful thing was a really good relationship with the district nursing team, who coordinated the medical care. The most difficult thing was trying to get a care package in place when he came out of hospital after a fall, as there was such a long wait for occupational therapy assessments etc (to advise on equipment etc), and I don't suppose that has improved in the 13 years since we lost my dad. Once we got the care package, however, the carers were amazing - they became my mum and my support system as well as caring for my dad. A good number came to his funeral and we stayed in touch with them for years afterwards - we never felt we were able to express properly just how much we appreciated their dedication.

You and your family have my profound sympathy, it is a horrible disease.

Sorry don't have time right now for the reply needed. Just posting so I don't forget, I will reply later.

Thanks so much everyone. He goes have carers but it’s not going to be enough, and it’s very hard to get any referrals, answers or explanation of what’s to come. We really need to get a meeting with whoever to anticipate what’s next and how to help best x

My dad had late stage Parkinson’s. I don’t have anything except to say that getting his medication on time every time made a difference, as did encouraging him to eat with his favourite foods (although the disease seemed to change his tastes and preferences).

My heart goes out to you. It is a very cruel disease.

Thank you 💐
one of the things being investigated was the possibility that he hadn’t been taking them exactly right and not eating or drinking enough, but he’s going worse rather than better with those things being carefully monitored. I can’t help but worry that it’s just progressing rapidly and don’t see what we can do to help. Does anyone know if this is usually toward the end, or could he be like this for a long time? It sounds harsh, but seeing someone suffer is just beyond words to express it, unless you’ve been there to understand.
Thanks to everyone for taking the time to revisit their own experience 💐

As previous posters have said you have to check that he is getting his medication at the time, on time, as this can affect the symptons if not carried out.
My Dsis suffers with this awful condition, and has had to be admitted to hospital on several occasions after falls. My BIL has observered that they are all over the place, time wise, with her doses of medication which have a really detrimental affect. She is now in a care home which has taken the pressure off my poor BIL, and the staff there whilst also busy, are more on top and aware of the residents medication requirements.

My dad was diagnosed with young onset Parkinsons at 46 - he's now 73. He's been in a care home for about a year. He has dementia and is very confused and has hallucinations and delusions. They've been happening for about 5 years and are pretty much all the time now. They are often harmless but sometimes cause him anxiety which is distressing for him and us. He has had the patches etc which helped for a while but are not particularly effective now.

His biggest issue is low blood pressure which causes blackouts and falls. Again medication had helped this in the past but there nothing further they can do. He is pretty much bed bound now because of this which is when it became too much for my mum even with carers and we looked into a home. He is also doubly incontinent.

The gp has said the prognosis is very unclear - he could get a chest infection and pass away quite quickly or he could carry on like this for several years.

It's really hard and I'm sorry not to be more positive. You have my support OP.

My dad was diagnosed with Parkinson's aged 69, he died aged 75. It progressed very aggressively. While taking the medication to schedule is important, deterioration is inevitable. By the end, my dad had lost speech, motion, continence and cognition. He was in a specialist nursing home where he had the best possible care, but it was still dreadful. In the end there was an outbreak of norovirus in the home, which he caught, and he died of aspiration pneumonia. By that time it was the kindest thing that could have happened, he had palliative care only and eventually passed peacefully.

It's an awful disease, you have my every sympathy.

Exactly the same with my dad. Plus he kept getting urine infections which causes delusions so it was rare to find him compos mentis when he was in hospital. He lingered on for 6 months, was so hard, we kept getting calls that this was it, all rushed to the hospital to say our goodbyes then he'd pull through. We had really gone through the wringer by the time he eventually passed.

So sorry to hear this.
My Mum died in May this year aged 88 and her certificate was fraility of old age and Parkinsons.
I 've posted on elderly parents forum a few times in the past concerning her symptoms.
As a pp said some meds can cause delusions and hallucinations but also as the disease progresses it too affects the brain as do urine infections which are very common with this disease.
My Mum was diagnosed about 3 years ago but I suspect it had been present well before that.
Her condition really deteriorated in the last year and she too became doubly incontinent and unable to get out of bed etc.
Be prepared for a long haul.
I had several false alarms when she was rushed to hospital only to be discharged almost immediately.
There is no cure only palliative care.
In her final weeks she was very disoriented and slept most of the day and I was told that this was a sign that her body was shutting down.
She also lost her swallow reflex so the carers just kept her lips moist.
She had no interest in food and drink in her last week.
It is a shitty disease and all you can do is make sure that he is as comfortable as possible.
(((Hugs.)))

😢😢
Again, thank you for putting yourselves through any upset in sharing your personal experiences. It’s so hard, and yes to being in for the long haul in this next stage. He’s just had IV antibiotics so we’re hoping for the best but expecting the worst. He has been private to a fault about his condition, not sharing information or accepting help, so now it’s upon us it’s extra hard as we are virtually going in blind as we have been kept at arms length as he tried to protect us, keep privacy and deny what was happening. All we want really is some answers from the hospital and his doctors as to what to expect, but they haven’t got a crystal ball have they?

Hi, I’m sorry as I know this is an old post but my mum was diagnosed with Parkinson’s in 2020 and I cannot believe how quickly she has gone downhill.

I think I was in denial for a bit as I didn’t think it would progress so quickly, we have had no help post diagnosis apart from her medication prescription and then a 1.5 year follow up consultant appointment. The Parkinson’s nurses wouldn’t see her in person.

She’s lost 3 stone and now has trouble swallowing, it’s just horrible! She is currently fighting a UTI and was dehydrated. I’m

Im trying to decide what to do, it sounds for these comments it’s now at an advanced stage. I don’t know whether to give up work and look after her (I am currently on maternity leave) and spend time with my baby, as I have a high pressures job I don’t like. Plus move her in with me for the shorter term so that she can at least attempt to enjoy life. It’s just all so distressing.

if anyone has any advice please share.

I wish I had some advice to help but sadly going through the same. I think as the other old age conditions start piling on it becomes even harder to manage. I think my mum is in denial. She will always say he's getting worse and doesn't seem to grasp it will never get better. I understand no-one wants to think that way but putting off getting help in place for him now is surely only going to make things worse? They have just got a new parkinsons nurse who they like but again, only so much they can help with.

My mum got my dad stabilised for a long time. He lived comfortably at home with her looking after him. But he could still eat at that point. It gets harder and harder I'm afraid. To the point where you will be absolutely exhausted if you do it all yourself, especially with a new baby. I think at the end stage, it is necessary to have professional help.

@Nappyvalley123 once a Parkinsons patient is in the stage where they are struggling to swallow, it's time to hand over to the professionals. That's end stage territory (my dad lived for 6 months after going into this stage and that's only because he had excellent specialist care). You can't do it alone. You need to go back to the medics, contact Social Services about getting a care package in and not give up your job, your life and your time with your DD - at this stage, looking after yourself and hanging on to the normal is absolutely vital for you. You can fight to get your mum the care she should have. You cannot provide that care yourself.

If you move her in make sure you have a life, she must have care and support coming in but please don’t take this all on yourself and prepare for a bumpy ride. Parkinson’s is a bastard and doesn’t move in a straight line its
downwards and upwards but always in the end on the way down. Post if you ever need to talk or pm.

I think doctors ought to sharpen up
a bit about lifespan expectancy with the most disabling and care-intensive diseases: some families now face 20 years of 24/7 caring duties. Endless false alarms re The End, too.

Per parent. No joke, is it. My advice: keep your job.

OP, I doubt you’re facing this but I would say doctors don’t tell you, and if they do, add five years.

This bit is gross, I warn you, cos PD ain’t pretty, but it’s important for FIL. It’s really important to get his end of life instructions about what he wants. These days you can keep a PD patient alive by inputting a heartbeat and ventilating the lungs; tube feeding etc. To most people this would very much be described as ‘not dead’ - more to the point, it’s certainly deeply frightening and unpleasant for whoever endures it. Sorry. But only EOL directions will stop this happening, if that’s what he wants to avoid. Try and get him to unbutton his reserve and let you have his wishes while he can still speak.

Thanks everyone for getting back to me. It’s very distressing, she has been talking about Switzerland if it gets to limit her quality of life anymore :( I thought this was a little extreme but I might help with research as she wouldn’t want to be just kept alive but bedbound etc. I think there is a television programme about this coming up.

I thought loosing my father suddenly 6 years ago was the worse experience of my life but this disease is clearly worse than anything, even cancer! I can’t believe the lack of support, it’s clearly something that is increasingly effecting more of the population, as the research seems to point to it being rare but quite a lot of people seem to have when I have been speaking to neighbour etc. Our experience has been, yes we diagnose you with Parkinson’s or Parkinsonisms and pop off and do your own research. There should be meetings and a programme about how to manage it, help available and stages.

Goodness knows what the healthcare sector will be like in 30 plus years when I get old!

My mum used to go to a local Parkinsons support group, is there anything like that near you?

My dad lived for years with it. But the last 6 months were frankly horrific. Very very upsetting and traumatic for all concerned.

My mother in law died suddenly of a brain hemorrhage and that although shocking was definitely the way I want to go. She knew nothing of it. It was a shock of course for us but it avoids messy feelings which are involved with long drawn out deaths. You feel guilty all the time that you're not doing enough, but at the same time you have to keep on lining especially when you have children.

My dad asked about Switzerland, but it was far too late. The person has to be well enough to travel, able to give full consent and pass multiple assessments, and be able to take the final pills themselves. It takes months and costs about £40k.

Do not give up work to do the caring yourself. At the stage you describe it's very likely that specialist equipment will soon be needed, so a care home with all that available and staff trained in using it will be able to give much better care than a single untrained relative. And Parkinsonian dementia - with accompanying delusions is common - and much better managed by professionals. It's exhausting, and you cannot be on alert 24 hours a day. Especially with a baby to cope with as well.

For the swallowing, try to get a SALT assessment - they will be able to advise on diet and drink thickeners (again, care homes will have experience with this).

And push for another review with the consultant. I'm afraid a lot of your time is probably going to be spent on chasing referrals and insisting on people doing their jobs.

Sorry, that's a rather grim picture. But it's a grim situation.

If your mum has capacity, and hasn't already made one, talk to her about an Advance Decision. It allows quite detailed If/Then planning for refusing lifesaving medical care. Not just a DNR, which covers things like defibrillation, but whether to have antibiotics for infections etc. Pneumonia is common, and can be a merciful release from the later stages of Parkinsons.

And make sure you keep hold of the original.

Thank you all again for your words of wisdom and certainly for flagging the Advanced Decision approach as I had not heard of it before.

We are involved in the local Parkinson group but the people that go tend to be more mobile than her, probably more shaking symptoms whereas my mum has more of the shuffles and stiffness. They also all have partners so I think mum feels a bit excluded / self conscious to a degree. I was also wondering if the group near where I live would be nicer.