It's 3am and I'm just back from the hospital after my sister was admitted tonight after another fall..this time she has broken her 'good' arm...Her left arm and hand does not work at all and she relied on her right arm and hand to help transfer her from her chair to a wheelchair as she still has some strength in her legs...now her right arm is broken and she needs surgery tomorrow....They have told her husband that she will go to 'rehab' after the surgery as she will need 24 hr. care...When I came home I immediately wanted to come onto this site and 'connect' with others that I know will understand and when I saw the discussion was about 'downturns' I felt the need to write about my sister...and how she still maintains a positive attitude and it breaks my heart (silently)....I should add that when we explained to the nurses that she has CBD they actually admitted they didn't know about the condition...Thank you to everyone on this site that takes time to write about their experiences and offers... advice...hope and empathy ...and for letting me vent tonight!!
Another Downturn for my sister: It's 3am and... - PSP Association
Another Downturn for my sister
So glad your sister is keeping her positive attitude...and also that she has you & hubby for support.
Sounds like you have a teaching opportunity... spreading the word with her nurses about CBD!
Please get some much needed rest now (if you can). Sending Hugs... Granni B
Will certainly take the chance to 'educate' Granni B...thanks!!
Took your advice and took all kinds of PSP/CBD handouts to the rehab center where my sister is now...they actually thanked me for it!! Will keep doing it too!!
That's wonderful Skye! Spreading the word is excellent for everyone, especially you sister.
Sending hugs... Granni B
When she goes to Rehab facility make sure the staff understands what CBD is, chances are they won't know either.
Ron
Will do!!!
Ron I did as you suggested and took info into the rehab centre....they were still referring to the fact that my sister had Parkinson's!!!
Oh your poor sister I hope everything goes well with her surgery tomorrow
You must be so worried and exhausted too .
She is blessed to have such a lovely sister caring for her alongside her husband.
Sending hugs
Lynda x
Thanks so much for your kind words...she got through a five hour surgery to piece her elbow back together..it's going to be tough..risk of infection is high...rehab...but she has a brave spirit...I have always loved and admired my sister but this takes it to a whole new level..I know I would'nt be as brave...
Skye
I am so sorry to hear this. She will certainly need rehab. I know someone who has just had it and she is doing really well. However you will have to educate them about CBD and any limitations your sister may have.
I wish her all good wishes and you too. This must be very hard for you. Take good care.
Marie x
I’m so sorry about your sister and I hope that her surgery goes well today.
Thinking of you,
Hugs from I SewBears
It went as well as possible thanks...It was a very bad break and they 'pieced' the elbow together..It will be a hard road ahead with rehab and when I read about 'setbacks' that CBD and PSP patients have and the hurdles that she will have to overcome scares me...but I always have 'hope' like so many that post here!! A treasured community!!!
Dear Skye,
This will always be the place where you're understood and welcomed whatever your day has brought!
Although the reality is CBD & PSP ARE degenerative, there are still positive steps that can be taken (and no doubt you and BIL are taking them) to delay the downturns, keep some level of functionality, some level of communication flowing, and a confidence that whatever the downturns, the person is loved and respected to the end.
My husband had CBD And we went to physio often. Our therapist said that even as the brain is degenerating, new learnings and new efforts such as physio exercises can build parts of the brain up and strengthening will occur. It doesn’t cure the disease and it doesn’t stop the eventual decline and death, but it may delay it and I believe, make the quality of life better until that end.
When your sister returns from rehab, that will be an important time to work on physio exercises and other strategies (communication etc) to keep building up her capacities once she’s back at home.
Blessings and good luck to you and your family.
XXX. Anne G.
Anne G....I so appreciate your comments..My sister got through a very lengthy and serious surgery today and gave me a smile tonight ... between my hubby ..BIL..and myself and all her caring grandchildren..nieces and nephews we will make whatever time is left ...meaningful for her..She was a 'guidance counsellor' in her day and now we can try and return the favor of 'guiding' her through this difficult time..Thank you..thank you...Anne G
Sorry to hear this. Hopefully rehab will be a positive experience - with a holistic approach - who knows they may come up with new strategies
Love Tippy
Thank you 'tippyleaf' every response here is so meaningful to me...such a sad 'place' to come to at the end of the day when we tell our 'stories' of loved ones dealing with such a terrible disease but such a 'place to land' where people 'truly understand' what emotions you feel as a caregiver..and patients alike that share their stories....Liz
Sorry to hear of your sister's fall but glad that she has come through surgery OK. My Mum broke her humerus badly (falling out of bed in hospital recuperating from a heart attack at the age of 84). It should have been pinned but they didn't think she would survive the anaesthetic, so she had a huge & heavy plaster cast instead and being unable to weight bare on it went to a nursing home for 6 months. At first I didn't think she would get through it, then I thought she would end up staying in a home, she was catherised because the home couldn't respond to her night time needs. Once her arm was mended, the home got Mum walking with a frame again. I think people thought we were a bit mad but Mum wanted to go back to her flat and so we put plenty of care visits in place and got her home, leaving the catheter behind, amazingly Mum retained the ability to control her bladder and she has now been back in her flat for 18+ months, so it was very definitely the right decision for her.
I guess what I am trying to say is, don't be disheartened, it is amazing how people can recover from things, they may not get quite back to where they were but with their determination & help & support from others, you can be surprised at just what can be achieved. Good luck with it all. xxx
Thanks so much for your encouraging message...My sister is a 'fighter' and I know she will tackle this setback with 100% ...She has a loving family around her who will support her...It's so hard to see 'your' big sister being so vulnerable...she was always the one who was looking out for me...I am so happy to be able to return the support now!!
Oh, I feel your pain, and hers. Some days I think we could circle the globe with a line of all the hearts broken by these cruel conditions. No insights here - just empathy and a hug.
Marilyn
Appreciate the empathy and hug so much Marilyn...it means so much!
Dear Skye04
What a pickle!! Looking on the bright side as your sister does at least she is being discharged to rehabilitation - this is a positive step forward. Try to ensure staff are aware of her condition - great info for healthcare professionals on the PSPA website or CurePSP website
Love Tippy
Thanks so much Tippy..I did as you suggest and printed off info..took it into the rehab centre and gave it to a physiotherapist and a nurse..they were very pleased to have information about CBD and admitted they knew very little! Thanks for the tip..tippy!!
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