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Elderly parents
Original poster

End stage Parkinsons nightmare

252 replies

Ilikeyoursleeves · 28/07/2023 18:35

Hi, not sure what I’m looking for from my post but I don’t know where else to express just how relentless and awful things are just now.

My dad has had Parkinson’s for what seems like forever, I actually can’t remember him being healthy now. He fell a year and a half ago and ended up having to go into a care home. My mum died several years ago after 12 years of dementia so my life has been relentless with looking after ill parents.

I had to clear out my dads house (on my own as my siblings are utterly useless) to sell once he went into the care home and that’s a whole other emotional story. He’s been sitting in his room now for 17 months, doesn’t like interacting with anyone, has never even sat in the garden or left the home in that whole time (I have tried). He has no existence or quality of life. He now cannot walk at all, he can’t get up without the assistance of two carers, he can’t get to the toilet himself, he has to wear incontinence pads, he is so depressed that he has said he no longer wants to be here.

He has recently taken a nose dive in that he is barely eating, not drinking much, having swallowing difficulties, and when I saw him this week he couldn’t even speak. As in he was just whispering. His voice would come and go but he said this was the PD now affecting his voice. He has lost lots of weight, is like a bag of bones withered and slumped in a chair. He has no life, is so tired and it’s just so awful to watch him slowly and so horribly going through this.

I am finding myself googling ‘how long is end stage Parkinsons’ all the time and as bad as it sounds, I hope every day that I get a phone call to say he’s died. But instead I get calls to say how much they are trying to make sure he gets more calories, how they are giving him antibiotics to treat infections etc, how they are basically prolonging his utter hell and torture. I actually want him to die so this hell ends for him but that sounds utterly wrong and taboo to say so I don’t say it.

His Dr is planning on calling me to discuss things as I asked the care home if his recent downturn is now palliative care territory but they wouldn’t say. I’m his POA but he’s still of very sound mind so makes all his own decisions. I feel I need to have an honest and frank conversation with him about his medical help and does he want to keep going. I’m not sure how much I can say to his Dr when he still has capacity. I know he’s in hell though and I want this to end for him, and for me.

If anyone has been in this position it would be great to hear from you. Thanks if you got this far.

😢

OP posts:
NewspaperTaxis · 09/09/2023 17:58

It was good of them to call you. It almost goes a bit against the grain of this thread - with which I have much sympathy, though it runs counter to what we went through with our Mum who had Parkinson's in Surrey - but I'd naturally advise only the happiest and most generous thoughts and feelings about your father and his condition now.

thesandwich · 09/09/2023 19:03

@Ilikeyoursleeves sending 🌺🌺

MerelyPlaying · 09/09/2023 19:22

@megmums I’m sorry to hear of your loss; you can grieve properly now.

@Ilikeyoursleeves that sounds like a significant change. I don’t think you should feel any pressure to go and see your dad, though. You’ve done all you could and no doubt said your goodbyes.

It’s hard to hear these stories - almost exactly 20 years since my dad died and nothing seems to have changed.

Original poster
Ilikeyoursleeves · 09/09/2023 19:32

@MerelyPlaying I said my goodbyes and thank you's over two weeks ago now. All the visits after that was just me rambling about my day while he lay there largely unresponsive.

I'm staying at home tonight and snuggling on the sofa with my kids and husband. My dads care home is an hours drive away and I don't want to sit and watch and wait for him to die, especially as it may even take days with laboured breathing.

It all feels very surreal as the ending comes closer. I've been desperately wanting his suffering to end but it's all so surreal when it actually appears. Not sure what the right word is actually.

OP posts:
Original poster
Ilikeyoursleeves · 10/09/2023 09:10

My dad has died 😢

The care home called me at 5pm yesterday (Saturday) to say that his breathing had suddenly changed. I totally thought that was The Call and I could barely speak on the phone, my legs turned to jelly and I couldn’t stop sobbing. Weirdly enough a neighbour was in who’d came round with flowers and chocolates for me, she is a palliative care nurse, she hugged me tight and told me it wouldn’t be long now.

After watching him slowly die over the last few weeks, I didn’t want to sit and watch him take his last breaths so I stayed home and watched a film with my family to take my mind off it. He’s had no awareness all week either.

At 1130pm they then called to say his breathing was a lot worse and did I want a call during the night. They then called at 1240am to say that was him gone. They said he was very peaceful and one of the carers was with him at the end.

Although I’ve been expecting this and wanted it all to end, it still hits really hard. I was totally sobbing when I got the call, my whole body shook and I couldn’t stop sobbing. I’ve had a rubbish sleep and now a day of phone calls beckons.

Thank you so much for everyone who’s supported me on this thread, it’s kept me sane over the past few months and I really hope it’s helped others too. Please keep it going if it helps and I’m thinking of and sending love to all those who are going through this really shitty process too x

OP posts:
OhOneOhTwoOhThree · 10/09/2023 09:14

I’m so sorry for your loss @Ilikeyoursleeves.

HelpNeededBeforeIHaveABreakdown · 10/09/2023 09:14

So sorry for your loss x

gluenotsoup · 10/09/2023 09:28

Ah, I’m so sorry. 💐

MmedeGouge · 10/09/2023 10:08

Just hold on to the fact that you did your best in an impossible situation.
I hope you find some peace now.

Horsemad · 10/09/2023 10:26

😞 Sorry for your loss @Ilikeyoursleeves

delphi13 · 10/09/2023 10:30

Much love to you. He is finally not suffering any more.
I wish you all the strength to get through the next bit on this road. xxx

watcherintherye · 10/09/2023 10:42

I totally understand your hopes for a phone call to say your dad's died. There is no shame in wishing an end to someone's suffering, especially if they have expressed the same. When the call came for us, my main feeling was one of relief. As a family, we had some closure and could move on. We'd actually been grieving for years.

I think this is what some people don’t understand, when they express shock or distaste that anyone can wish death for a loved one. The sense of loss and grieving, both for yourself and for the person, is an ongoing thing for so many people, sometimes for years. No wonder death feels like a blessed relief. People should be able to express this, without feeling guilty.

MerelyPlaying · 10/09/2023 13:14

I'm sorry for your loss @Ilikeyoursleeves but also glad for you and your dad that his suffering is over. Now you can begin to grieve for your loss and recall your dad as he used to be. In time, you'll be able to forget these last weeks.

A lot of people find preparing for a funeral and recalling someone's life for the eulogy quite therapeutic - it brings back the memories of the person in happy times.

Wishing peace to you and all your family.

girlwhowearsglasses · 10/09/2023 14:07

So sorry for your loss

thesandwich · 10/09/2023 14:10

I’m so sorry for your loss. 🌺🌺

baffledcoconut · 10/09/2023 16:58

I’m really sorry for your loss and the journey that got you there. Take time to grieve and be gentle to yourself. It’s a hell of a time and a lot to process. Talk, cry, laugh and take your time.

I hope you get some rest and that it is healing xx

Valleyofthedollymix · 10/09/2023 18:08

@megmums and @Ilikeyoursleeves - we're all in the same strange boat. My Dad also died on Thursday morning of Parkinson's.

I feel relieved. Relieved that it was the way he wanted it to be at home, relieved that he's no longer living in such a terrible diminished and painful state, and relieved for myself that this awful weight of uncertainty has been lifted.

I'm sure the sadness will come and with it the celebration of his life, but at the moment relief and numbness is winning out.

dearanon · 10/09/2023 18:10

So sorry op

nevynevster · 10/09/2023 19:29

DNACPR is not always discussed with patients. Good practice is that it is. But a medical professional may decide in an emergency for example that CPR is not appropriate because there is no prospect for survival. CPR is a very hard thing and oftentimes does not work and or cause fractures, 2 of 10 people survive CPR in hospital I think. It does not mean that other life saving or prolonging treatment will not be used. It literally just means that the CPR won't be used.
So a DNACPR that may be put in place by the Dr regardless.

twistyizzy · 11/09/2023 09:40

@Ilikeyoursleeves so sorry for your loss

Davros · 11/09/2023 11:45

@Ilikeyoursleeves so sorry for your loss and what you've been through 💐

I've been putting off catching up with this thread because I dread what the future has in store for us. As I said upthread, DH has Parkinson's and he is only 65. He has deteriorated recently and life with him is quite dull. He can't do much, I often can't hear what he's saying and I'm constantly standing up for myself or I fear I will be subsumed into his needs. I have several health conditions myself and I've already been a carer for DS who has severe autism. Because of DH's age and how long he might live, I fear we will be severely affected financially. We had years of money worries and finally got back on our feet three years ago and now it will all go on care

Horsemad · 11/09/2023 14:21

@Davros

A couple of things re finances:

Do you have POA set up? If not, please get it organised. My Mum wouldn't/didn't & now has lost capacity & it's a very complicated and expensive process to gain Deputyship to access her finances to pay for her nursing home.

Do you own your house? How is it owned?
I believe Tenants in Common can be advantageous, as it splits the ownership into shares & you & your husband can Will your shares as you wish; this means whichever one of you dies first, the house doesn't pass to the survivor and therefore the whole house value cannot be considered for fees should care fees need to be paid later on, if/when the survivor needs care.

Apparently if one of you goes into care & the spouse remains living in the house, the house won't be taken into consideration when a financial assessment needs to be done (this would be if the person in care's savings are below or fall to the threshold level - threshold level depends on where in UK you live).

You may already be aware of the above but if not, I hope it helps.

Davros · 11/09/2023 14:24

Thanks @Horsemad

I do have POA, got it done sharpish earlier this year. We also changed our home ownership to "in common" recently while doing our wills

Horsemad · 11/09/2023 14:31

@Davros it's great you are organised. Having the POA will save a lot of stress. 👍

Davros · 11/09/2023 14:35

It was a bit by stealth. We sold our lovely family home of 25 years, hence sorting out the finances, but it also made sense to update our wills and POA is an obvious add on. But I actually wanted it done quickly as I can see DH deteriorating mentally, in terms of memory and thinking things are different to reality. It is a mutual POA and DD is an Attorney, but I expect to be using it for DH sooner than for me 🤞