End of life concerns : So we have been... - PSP Association

PSP Association

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End of life concerns

Stephanielayell82 profile image

So we have been informed that the lady I've taken care of for the past 6 years has entered the final stages of PSP. I knew it was approaching. She has experienced significant weight loss, extreme tiredness, anxiety, hard emotional changes. But she is eager to keep pushing forward and living. Has anyone experienced end of life with this disease? Was wondering how bad does it get?

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Stephanielayell82 profile image
Stephanielayell82
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17 Replies
plieepal profile image
plieepal

Hello Stephanie,

So sorry to hear what you and the patient is going through, unfortunately, according to doctors and caregivers, 6 years seems to be the average from onset to the end.

My mom is currently experiencing a lot of the symptoms that you described and I wonder the same thing, constantly asking whether it’s the beginning of the end or not, and how bad and fast it will be. Just to give you an idea though, mom’s strength is weakening by the day, she’s now in bed most of the time, only getting up after dinner (7 pm) to use bathroom, have her feet massaged, then heading back to bed.

Her mind is still there, just completely not verbal, and yes or no questions could be confusing for her, we go back and forth a lot and like you said, extreme anxiety and frustration set in due to that. She is very emotional as well, smallest discomfort could result in her crying for long hours, and she laughs over things that seems weird to others.

We are on thickened puréed diet, she eats okay, but slowly losing more weight despite proper nutrition intake. She opted to not have a feeding tube, not sure if this has been discussed or not in your situation, from what I learned, with a feeding tube the person might have longer but it all depends on the life quality they want.

All in all, the doctor said she is definitely in advance stage but I’m not sure if that is equivalent to end of life.

Stephanielayell82 profile image
Stephanielayell82 in reply to plieepal

Thank you for your input. I'm so sorry for mother is battling this wicked disease!!! Yes the say final stage or end of life has the same meaning because her doctors use different terms I've always asked for clarification. She took her weight lost turn in late December thur January almost 50 pounds. So we had a MRI to see what the brain and spine status is it revealed the brain tissue is deterating quickly. Which was explained to me today that up the chances of strokes, more dementia and mood swings with her character changes. Apparently all PSP patients go through this degenerative deterioration of the brain that's what the disease does over time. Everyone progresses differently so hard to learn about this rare disease. We have looked into feeding tube but she is prone to infection and they get infected pretty easy. It's also uncomfortable and can cause pain so I don't want to add to her disabilities she already faces. Feeding tube can give little relief once you look at the big picture. There is a cup called drink ez that holds the fluid to help with liquid intake. We use syringe or turkey baster to help get food in her she has the horrible leaning to her left. She has been in powerchair for almost 2 year now. It kills.ke to watch the suffering she is going through.

MRSYafffle profile image
MRSYafffle in reply to plieepal

Sending lots of love.

Stephanielayell82 profile image
Stephanielayell82 in reply to MRSYafffle

Thank you!!

Hi Stephanielayell82!

By internal chat I am sending our information and experiences about!

A big hug,

Luis

AJK2001 profile image
AJK2001

So sorry to hear about the lady you care for, but sounds like she is very lucky to have you. My Mum was never defeated by PSP, she always wanted to make the most of life and wanted to get better, which in itself was heartbreaking but the end when it came was very calm and peaceful. She had refused a PEG and her swallow gradually got worse and she found eating very tiring. Eventually the swallow stopped completely and she became dehydrated. She died peacefully in her own bed being looked after by some wonderful carers, myself and husband, which is how she wanted it. She struggled with new people, places and routines so we were very glad she didn't get admitted to hospital which she would have found scary and distressing and the end outcome would have been the same. I can only hope your lady has a similar peaceful passing. Wishing you courage for the coming weeks. xxx

Stephanielayell82 profile image
Stephanielayell82 in reply to AJK2001

Thank you. I've told her several times she deserves peace. I believe it's very important too. Yes I will keep her home where she wants to be.

AnneandChris profile image
AnneandChris

Hello there

My husband died at the end of December 2019. He had a couple of really nasty chest infections in November which he overcame but by the middle of December he had taken to his bed and stopped eating. He had a driver fitted just over a week before he died. The end was very peaceful, he just slipped away.

It is difficult to predict how long the end of life stage will be. My Mother fought for several months (not with PSP), she just didn't want to go. PSP however is a different beast as it reduces the capacity of the patient.

From diagnosis, which took less than a year, to his death my husband's journey was 4.5 years.

Keep on keeping on, we are here for you.

Anne

Stephanielayell82 profile image
Stephanielayell82 in reply to AnneandChris

Thank you. I'm so blessed to have found this group to join. I felt so alone as many people have no clue what PSP is.

MRSYafffle profile image
MRSYafffle

So sorry to hear this I am learning all the time about this condition . I initially thought you would be bed bound in the final stages so I am a bit concerned as you have described what my mum is going through. Sending lots of love your way xx

Stephanielayell82 profile image
Stephanielayell82 in reply to MRSYafffle

Thank you. My love one should probably be in the bed. I think she only gets up because it's been her routine for so long to get up each day. But as her bones are starting to be more visible it worries me we could be doing more harm then good by getting her up. So I'm sure she is not too far off from being able to get out of bed. Her spine is so weak that she is falling forward more then ever.

MRSYafffle profile image
MRSYafffle in reply to Stephanielayell82

Aw god bless her, I hate this illness.

daddyt profile image
daddyt

I am not at that stage, but I keep on keeping on. I'm certain there are others on the forum who have gone through the last leg of the journey and are willing to share their experience.

Tim x

Stephanielayell82 profile image
Stephanielayell82 in reply to daddyt

I'm truly sorry you have to battle this wicked disease. Keep on going is the only fight you have against it. Best of luck to you!!

daddyt profile image
daddyt in reply to Stephanielayell82

Thank you for your support. I'll keep on keeping on... until I can't.

Tim x

doglington profile image
doglington

When my husband was diagnosed my dread was the awful death I feared. In fact he died at home, all the family there. It was painless as he gently drifted off. Please ask me anything you would like to know. Good luck. Jean x

MRSYafffle profile image
MRSYafffle in reply to doglington

Thank you for sharing, that's nice to know. So sorry for your loss xx

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