PSP has taken my sister: My Sister never... - PSP Association

PSP Association

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PSP has taken my sister

Outrigger profile image
19 Replies

My Sister never gave up. She went to exercise room everyday and was always out of bed in the activities room. Playing checkers and the nurses, aids and even her roommate liked her. She kept her sense of humor even thought she could not talk much she could laugh. I was lucky enough to see her a few weeks ago. She lived in Rhode Island and I live in San Diego. We (my other sister-who lives in Michigan met me there for the week) took her out everyday and kept her as long as we were allowed. Until we had to bring her back for bed. I think she had a good time we facetimed with the rest of the family. She got to laugh and enjoy herself. We fattened her up to 86 pounds from 83 but after we left she lost the weight again. She went for a check up with a new doctor a neurologist. He took her off the meds and said they weren't doing her any good. Then she couldn't eat or swallow so the demise happened within the week. It was the choking and not being able to swallow that did her in.

Her daughter was by her side. We were there by phone to say our goodbyes.

It is allows tough at the end when you can't do anything but watch.

Nov. 22, 2021 was her last day on earth. She got this disease when she was about 63 she started to slur a bit. We thought she had a stroke. Misdiagnosed with Parkinson's at first then later it was PSP.

Thank you for this site. I was always hoping for a miracle that they would figure out what causes this disease. Or how to help the chocking. God Bless you all and thank you for the information you passed along.

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Outrigger profile image
Outrigger
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19 Replies
Trixi01 profile image
Trixi01

Love & understanding from SE London, England at this sad time for your family.

It sounds as if your sister was a fighter until the very end. I’m so glad you were able to have fun, quality time with her and she knew how much she was loved.

My Dad is in his last weeks of this awful disease 🥲.

T xx

Tippyleaf profile image
Tippyleaf

So sorry for you loss. Good to have those special memories of your lovely week together Love Tippy

A big hug.Luis

Rubikcuber profile image
Rubikcuber

So sorry for your loss. But happy that you got to spend that time with her - precious memories. Xx

AJK2001 profile image
AJK2001

Thinking of you and your family xxx

Runner333 profile image
Runner333

Sending you peace and love during this difficult time. Sounds like you made happy memories together. All the best to you and your family.

Motts profile image
Motts

Sending gentle hugs... Granni B

daddyt profile image
daddyt

So very sorry for your loss. Hugs and prayers.

Tim

ConcernedEx profile image
ConcernedEx

Good morning. Prayers from LI, New York for you and your family. It’s heart breaking on so many levels to lose anyone special to this awful disease. Take heart in knowing that you were there and made your sister laugh when she needed you. I’m sorry that you have joined many who have experienced seeing loved ones lost to PSP.

You are not alone- write on this site and express yourself fully in the coming days, months. As much as we all knew the end was near- we all prayed for a miracle. God has brought your sister home to him- so know she is safe now from any pain or limitations.

Troubleandstrife profile image
Troubleandstrife

I'm sorry. It is heartwarming to know you and your other sister were able to spend this time with your sister. My husband has PSP and though he is British, we have been living in the U.S. until a few months ago when I brought my husband back to the UK specifically so he could be with his sister, his last remaining close family. I don't regret making the trip but now we are navigating higher needs, end of life care and as his primary caretaker, I am bewildered about what the future has in store for us. He is 66 and has been having symptoms for about 5 years now. Thank you for sharing your sister's story with us.

Spin30 profile image
Spin30

Hugs and peace to you and your family. Sally

Auntbuzzy profile image
Auntbuzzy

That visit you were able to make with her and your other sister had to have been the best medicine for her. I also have two sisters and it is exactly what we would have done. I don’t know any words of wisdom to help ease your pain, but know you did the very best for her. Prayers for your comfort.

Railfan profile image
Railfan

I am so sorry. She was truly a PSP Warrior.

Purrlie profile image
Purrlie

Thinking of you and your family at this sad and tender time. Big hugs, Purrlie

Sebuly14 profile image
Sebuly14

It is good that you have the good memories of time spent together. Sending warm hugs to you and your family.

ncgardener799 profile image
ncgardener799

So sorry for your loss. May you find peace in the days to follow and joy in the memories of good times and the love you shared. HUGS!!

AliBee1 profile image
AliBee1

God bless to you and your family. How wonderful that you had that week with her. What special memories to hold. Big hug AliBee xx

Fairygirl13 profile image
Fairygirl13

Thinking of you, so sorry for your loss. Sending love and hugs to you and your family xx

Scarfey62 profile image
Scarfey62

Thinking of you and your family. It’s good to make memorable times that mean so much. My father has PSP and I see the huge difference every week. Take care god blessxxx

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