End stage symptoms

[Jodi999]

Started typing this many times but never posted it. I always like to make sense of things which is just impossible with this disease. My mother in law was diagnosed with psp in May 2021 but had symptoms at least 2-3 years prior so I suppose she's had it for about 4-5 years now, that we're certain of. Incontinent, can't walk or get up independently (does that mean she's bed ridden?), can hardly speak and chokes on food frequently. She's lost a lot of weight, about 25kg.

Does the weight loss signify end/late stage? It's listed as a symptom for end stage on some websites. Besides reduced food/water intake, what symptoms are we to look out for to identify nearing the end?

[NannaB]

Everyone is different Jodi. My husband couldn’t walk, sit up on his own or stand for the last 2 years of his life but wasn’t bed ridden until the last 3 weeks as we went out at least 3 times a week. I had a hoist, electric wheelchair & mobility vehicle & he had a PEG. I’d ask him if he wanted to go out & he would slightly raise his thumb. I’d then list where we could go, then repeat it so he could put his thumb up when I said the place he wanted. It wasn’t easy & I sometimes hoped he’d indicate he wanted to stay at home but he never did. Because he had the PEG he put on weight & needed no medication. As he couldn’t raise his head, I’d take photos of what I could see and show him. He loved me to pick flowers for him to smell. As I said, everyone is different, those who need caring for and those doing the caring. Some get chest infections they don’t recover from or aspirational pneumonia. My husband died peacefully at home without any medication 10 days after he stopped taking food or water (his decision which the GP & I honoured). I hope, when the time comes, your mum’s parting is equally peaceful.

XxxX

[Kayelless in reply to NannaB]

I’ve got some input from the patient’s view.

It’s great to see that you took time to get out of the house for as long as you were able.

My 34yr daughter and I live in Florida. I live on my own with minimal help.

My symptoms are coming hot and heavy now, but I didn’t know how much they’d progressed until this week as we’ve gone on “the last trip” to New York City!

I have found that my fingers don’t grip well and I can’t put on my socks and boots plus my memory for what we’re going to do each day are all shot but we’re having a wonderful time.

We knew we’d have fun or it would be a disaster, but luckily it’s great. I rented a scooter to get around and I’m sure I’ve scared more than a few pedestrians while I learned to drive the darn thing in Times Square.

It’s scary. And it’s showed me how bad my symptoms are. But I’m not sitting in my recliner and that’s a blessing.

Me at the top of the World Trade Center

[daddyt in reply to Kayelless]

Good for you!

Hugs,

Tim

[Ovation1 in reply to daddyt]

well done you xx

[MARKJ9]

I am not a doctor. I can only tell you from my experience with my dad's passing from PSP. He had severe weight loss leading to the last few weeks of his life. He had incontinence and very poor bowel movement. He was choking on food a lot. That resulted in aspirational pneumonia. The choking on food and weight loss made us fear the worst. He was coherent till the pneumonia. But, was sleeping most of the day. Though he was able to recognize his children and our mother, his short term memory was very poor.

I will agree with you that the choking and loss of weight are symptoms of the disease progressing towards the end stage. But, it is hard to tell if your mother in law has days or weeks left. I hope she has no pain and is at peace. I hope she is surrounded by love. Wishing you strength.

[Cianodude]

the thing I have noticed with this disease and CBD is my mum was diagnosed in 2017. Since 2019 she lost her full speech or any sounds her legs and hands are totally frozen and closed and bent. She is “paralysed “ from the neck down since then and stiff so cannot bend her elbows or knees. Totally incontinent she can only move here eyes her food is liquidised and can only drink thickened drinks and she has gone from a size 20 to a size 8 having lost so much weight. I recently went to a conference in Ireland which was all about psp and CBD with neurologists physio. Palliative care nurse etc. and I met other families and there wasn’t one person that was like my mum??? So I think everyone is different. That’s not much help to you I know but we are going through it differently I had palliative care nurses call and examined mums heart lungs kidney function etc and they said she was healthier in those areas than she was!???❤️

[AliBee1]

Dear Jodi

As Nanna B says everyone is different and there's no set pattern. The best advice that you will have is from the PSPA association. They have a helpline too if you are in the UK. It is truly devastating to watch a loved one deteriorate in front of your eyes when there is nothing you can do to prevent it so my love and thoughts are with you. The other thing is to get the Palliative Care Team involved to support you and your Mum. In the Uk I was told that it was only for those with less thatn a year to live but later found out that they can become involved with anyone who has a life ending progressive condition. They were wonderful. I am so glad that you had the courage to post. People on here will be a great support for you. Love and hug AliBee

[Troubleandstrife]

"My husband died peacefully at home without any medication 10 days after he stopped taking food or water (his decision which the GP & I honoured). " I am quoting Nanna B, above because this was also our story at the end. I also want to echo the sentiment that everyone is different. My husband also had a PEG tube and was choking frequently from reflux. As it turns out I was feeding him too much, since everyone, including the misguided dieticians was focusing too much on staving off the inevitable weight loss. I have terrible regret about how I may have been causing him discomfort by stuffing him with that liquid nutrition his body obviously could not handle. That said, we finally landed in Hospice, a godsend (thank you Florence Nightingale). My husband went in for temporary "respite care." They immediately recognized the need to take a palliative/comfort care approach and my husband's last four months of life, two of them totally bedridden (which quickly led to bedsores), were relatively peaceful and, honestly, special in that we stayed in the present and made the most of a devastating situation. He made it home in time for Christmas last year and died at home. I urge you, if you haven't already, to connect with a hospice and to not be afraid that its "too soon," because what we all need to focus on is the comfort and life quality of our loved ones, not our very real desire to keep them forever in their bodies as we know them. Hospice helped us secure funding for carers, as well as making connections with palliative nurses, Rennie Grove and Marie Curie, and every possible form of support. They saved my life/sanity because this disease is brutal on the caregivers as well as the cared for. I hope this helps, I am rambling. I wish you luck. No one deserves this.

[daddyt]

As already stated Jodi, everyone patient is different. But if so, be sure to get the right help - palliative/hospice, so that you can be the family she has with her during this difficult time.

Tim x

[Jodi999]

The support on here is so amazing, thank you all for sharing your stories. I understand it's impossible to know where we're at. We'll just have to take it one day at a time.

I've asked the gp about palliative care before but they ignored it, her gp is very hard to reach which is why it took so long to diagnose her in the first place. I'm still a bit confused what it entails exactly cause she does receive care 4 times a day, the neurologist has said that's the max they could do for her. I just assumed that that was it

[AlliD]

as others have said, everyone is different.

My husband and I were told he was in the final stages of PSP in March and although he was bedbound he didn’t understand the full implication. It’s 1 December tomorrow and he’s still with me. He’s chosen to be cared for at home and we have amazing carers come in four times a day. He has good and bad days and can’t do anything for himself but his consultant says he’s clearly made of stronger stuff than he initially thought.