I hope this message finds you all doing the best you can and finding the slivers of joy in each day. I am walking this healing journey the very best I can; I miss Momma something fierce . Caring for her, by far was the best honor of my life.
For those of you that are newly diagnosed, this forum is the very best place to feel safe and heard. I just don’t know what I would have done without the knowledge, support, friendships and pure kindness that I felt over the past years.
I still check in and will continue to do so.
My mom was diagnosed in May 2017, she moved in with me shortly after diagnosis because she began to fall backwards. Mom lived with me full-time and I cared for her in my home, adding hospice for the last two years for extra help and support. My sweet Momma passed away in early December after she was unable to eat or drink any longer.
If I can be of any help or a listening ear to anyone, do not hesitate to reach out to me. This is a journey that most will never understand. Hang in there and keep embracing the moments of joy the best you can.
Written by
bazooka111
To view profiles and participate in discussions please or .
How really lovely to hear from you and see your Mum's beautiful smile. I agree totally with what you say in your second paragraph. I will mail you privately within the next couple of days as I have something that I think you might find useful as I have just held a bereavement day locally. Big hugs AliBee
So pleased to hear from you again and to hear how you're getting on.
I too agree with the sentiments in your second paragraph. PSPA here in the UK are setting up a network of people like us who can support newly diagnosed patients and those further down their journeys. And, this is something I'm thinking about.
As soon as I saw the title in my emails, I knew it would be you and so nice to hear from you again. It is the strangest feeling to know that the only people that really understand how you feel, without trying, are the strangers on this forum. I too have learnt so much from here, mainly that my feelings, whatever they may be at the time, are normal and I speak to the doctors about it almost every time we communicate. I hope you are doing OK Kim, I think about you often. My Mum is still hanging in there, I don't know how, with another chest infection diagnosed yesterday she truly is a warrior. Thanks to everyone on here that has helped me immensely over the years without even knowing. Let's keep doing what we are doing x
You’re right. 3 years after John died I still have many probably irrational feelings of guilt about things I didn’t do or couldn’t organise. Hindsight is so negative. But this forum illustrates how we’re all trying to make things a bit better, and knowing that others understand exactly what we experience day to day is so important .
I CANNOT think of anyone on this website that did more for her loved one than you! I know I may offend others (but like me I tried my hardest as well) but you were and are an inspiration to us all. Bless you in your grief. God has a crown for you in heaven for all you did.
I haven't posted for awhile but everyone here that replied are my friends in PSP. Never forget that it is something we all totally understand.
We all are with you and each other as the next journey continues (but unfortunately never ends).
Hugs and blessings to everyone here and their loved ones.
Hi Kim, great to know that you are still reading. Sometimes that all you need to get the support you need. I know what you mean about it being an honour and privilege to care for a loved one. That still gets me through a bad moment. I feel proud of what I achieved, whether it was good enough.......
Hope you are using your hard earned skills on yourself now!
Hi Kim, What a nice surprise your message was today-I think of you often and of course your beautiful Mom as well. Your support through the years was always warm and caring for all of us. You innovative activities with Momma were a joy to see, thanks for sharing all the happy moments. I hope you find joy in the memories and peace in the days ahead . HUGS !!!! Pat
I was thinking of you and your lovely Momma a few days ago. Thank you for sharing that smiling photo. This is from a novel I read shortly after my darling husband died last year: "You're no longer where you were, but you're everywhere I am." I stopped saying "I miss you" and began to say "I feel you." Sending big hugs, Purrlie
Hi Kim, Thank you for sharing the beautiful picture of your Mum. Your Mum’s smile and your loving care for her are an inspiration to me as I care for my husband with psp. I still use your idea of a towel or toy to hold for clenched hands. Do you have any advice for locked fingers? Thank you for your willingness to continue sharing your advice and expertise! Love and a hug, Linda
So lovely to see your beautiful momma's smile again. Hope you are staying strong. I understand what you mean in feeling that it was a honor looking after your momma. I feel that too looking after my mum it's what also gets me through the tough times. You had the privilege in caring for your momma. You are an inspiration. It was so lovely to see you checking back in. Lots of love to you. Take care of yourself. 🌷
It is great to hear from you again and to hear that you are on the healing journey. It is getting harder at this end and I will really try to remain inspired by how you managed so well. It is all a bit scary but I guess one challenge at a time.....
Do keep in touch with the forum. We all loved your posts over the years.
Hello, lovely lady!It's been a while since I've visited this group, having lost Ian nearly 2 years ago now, but I have often wondered about how you were doing and remembering always the courage and cheer you and your beloved mum shared with us all. Forgive me for not passing my condolences to you and your family sooner. She was quite a warrior, as are you.
May you have peace in your heart and the assurance that she is laughing and dancing in a better place now. My prayers and good wishes are with you all for lives that would keep her smiling.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Saying hello on behalf of my mum who has PSP and her daughter - primary carer
Hello
Hello from Indiana, USA
HELLO 
