My sister has passed: My sister who we... - PSP Association

PSP Association

9,959 members•11,768 posts

My sister has passed

My sister who we believe was in her 8th year with CBD has finally passed. My sister died January 12th after a long and painful struggle from this horrible disease. She lived in England, and I live in the USA but despite Covid I went to see my sister, thank goodness in November. My sister was in a nursing home and caught Covid we think from one of the staff despite rigorous testing every day. Covid and CBD combined were too much for her frail body. She was really suffering and so of course probably a blessing, but I am not there yet. When I went to see her in November, I was shocked at how she had deteriorated so fast it seemed like. My sister couldn't talk other than one word which was so hard to hear. Her head was always slanted down towards her neck and all of her limbs were slowly curling up. We had to feed her, move her to get her comfortable and get water to her and lots of other care issues. Her wonderful husband went every day to the nursing home and did a lot of her care due to them being so short staffed. I could see in her eyes she was done suffering but of course nothing we could do about that except do everything in our power to make her comfortable. The bizarre thing is her cause of death will probably be Covid even although it was CBD that racked her body. We haven't received the death certificate yet so not sure how CBD will be listed.

I want to thank everyone on this site. Back when my sister was starting to go downhill her husband and I were really struggling to get help from the NHS. I didn't know what the next steps needed to be living in the USA and the community gave me so much info which got my sister the very best care she needed. One she had a team of NHS professionals things moved quickly so I want to thank them all of course and the CBD community. The advice I received through the community was so wonderful, Rest in peace my lovely funny witty sister. I will miss you forever.

Written by

Scionaw65

To view profiles and participate in discussions please or .

Read more about...

11 Replies

•

carehope3 years ago

Dear Scionaw65 ,

I just happened to be online writing to my friend in GB (who I met on this site ) , when your post appeared. I was very saddened to hear of your sister's passing. Sending sympathy and understanding to you and your family. I can very much relate as my sister has been ill with PSP since 2013 and is nearing the end of her suffering. It's been a great help to have the 'community' on this site as a valuable resource and support . We don't have anything like this supportive and informative site here in the US . I am so glad that you were able to make the trip to GB in November to be with your sister. I'm sure that your visit meant everything to her also.

Stay well ! Sending lots of love and sympathy your way ,

Elise , in NY