My lovely mother is still here. I think. She is now totally paralysed - can't move a muscle even to smile or show she recognises any of us. No speech, and the only sign she is 'present' is when her pupils go from pinpoints to dilated. Which only happens now for a few minutes a few times in a day. Last week I was so relieved as she stopped eating and drinking the liquidised food by clamping her lips together. My sisters and I were getting ready to rush over when, overnight, she started eating and drinking again. I have the feeling that she doesn't want to upset my father by calling it quits. So I have told her several times since that she can decide whether to carry on or not (or whether to reject food and drink) and that we will support and love her always if she decides that enough is enough. I am trying to get my father to stop making encouraging remarks about eating etc as she really needs to let go now, eight years in to this heartbreaking CBD. Has anyone else gone through a similarly terrible time of stop-start eating and drinking? If so I would love to hear from you! With love to you all through the hard times! Mary
Stopping and starting eating and drinking - PSP Association
Stopping and starting eating and drinking
Going through it now. It's very hard to stop encouraging eating, as offering food is how we, as a species, show affection. Don't worry. It won't go on forever. Love and peace, ec
Thank you, here's hoping we all find some peace soon. Mary
I'm not ready for that peace, and I sympathize with your father. I am fighting for more time with my sweetheart. It will never be enough.
I know my dad feels the same as you. When our loved ones can no longer speak it is hard to know what they want. I have different ideas from you both, but my approach is born from love, too. Such hard times! All the v best to you and thank you for your reply.
It is hard to let go of life, on both sides, as carer and cared for. What I once, in my strength, thought intolerable now seems worth preserving. And my sweetheart has held onto a life he would never have thought acceptable before that became his reality.
It will be over too soon for me, and what comes after is forever.
I feel for you all, and hope for peace for you and your parents. Love, ec
My husband has been like that for a very long . So many times I have started to prepare myself .
Then he switches back on a again.
. Such a complex illness . What's the saying it's not over till the fat lady sings ,
Very often when the time does come it can be shock. Unexpected even if advanced
I am giddy today, because my lovely man, after two nights of decent sleep, had a very good day, and even chewed real food for the first time in 10 days. Tomorrow his daughters are coming from Seattle and St. Paul, bringing the newest granddaughter, AND our beloved sister-in-law, whom we have not seen since before her ordeal in Iran, is going to be here, too! There will be hugs and tears and dancing for joy.
And my sweetheart, who was given up for nearly dead on Tuesday, is coming home from hospice tomorrow. I have been beside myself all day.
I really am not ready to say goodbye to him.
It has been a wild swing of the pendulum, and I know it will swing back, but for now I can be happy, and I will be.
Happy Easter, everyone.
Love, ec
Hey EC,
Charles has done the same. Rallied again. He obviously wants to live awhile longer. But like you, this wild swing of the pendulum makes me feel afraid, angry and guilty.
But Easter is the time for all good things and many blessings, may you both have some extra time like we are and enjoy.
Cuttercat
I think you meant unlike me, Cuttercat, but I have felt afraid and guilty, too. I am sorry you are going through such a hard time. I have the fabulous support of our local VA staff, and that has saved us over and over. I wish everyone could have this level of care. They are all so kind and loving.
Hang on. Love, ec
Happy Easter!
Good for you. Enjoy this time. Sounds like he's got some good strength going now to enjoy the visiting.
Thanks, Lucy. He really kept it together through all the happy chaos, but has been asleep nearly nonstop all day, after the beloved company left. I'm glad.
Hi Mary, unfortunately others have been through this. It must be very hard. With Steve, his swallowing went completely, therefore we didn't have this roller coaster ride.
My thoughts are with you, your Mum must be a very strong and determined woman. She will go, when she is ready. You are right to give her permission.
Sending big hug and much love
Lots of love
Anne
Thank you Anne. Your support much appreciated. M
Dear Anne, please see my note above. I know you will be happy for me, and understand. Love to you, especially. Ec
Arms around you, holding you very tight.
Hope you have a lovely day with your family, especially your sweetheart, he obviously wants to fully enjoy the day as well. Steve's latest grandson was born on Monday. Thankfully, for his daughters sake, he did get to feel the baby move, just before he went.
Know that I am holding your hand every step of the way.
Lots of love
Anne
Thanks, Anne. I love you dearly, although we have never met. Yet. Let's do that someday. Love, ec
Hello
yes that's exactly what mum did. sometimes ate a lot and sometimes not at all. it's hard to try and work out the "why". sometimes I would go crazy trying to work out if she was trying to tell me something. but that would have just driven me crazy. it's so difficult. hang in there.
My dad has said he won't have a peg put in when he can no longer eat or drink. I may have to honour that wish one day, I feel so sad that his future is so bleak. My thoughts are with you.x
Hello Mary, I am so sorry to hear of your lovely mums suffering. It is so hard. My Mum died in February after a long struggle with PSP, well it may have been CBD or a mix of both, it was never fully diagnosed. We think it began in 2007/8. She lost her speech and use of her legs about 4 years ago. Last year she started to struggle swallowing. She stopped eating about 10 days before she died. She ate very small amounts and then it went very intermittent, with just a spoonful here and there, and then finally she stopped. It seemed to be very natural and she passed away very peacefully with all her family with her. Sending you and your family all my love and strength at this difficult time.
I am reassured to know it can be peaceful. I am hoping so, as we are getting nearer to that now. Thanks for sharing that. Love, ec
So sorry to hear this. My mom is in the same space.
Eating problems 
Eating
Eating concerns
