Hello… first of all, I want to say thanks to everyone on here who have helped me, whether that is by directly answering my posts or posting something before which I’ve found has helped.
Yesterday, my Nana, my world, passed away.
She declined on 21st October after being told her sister had passed away (unexpectedly to her and to a few of us!) now some people have said we did the wrong thing and I hear that but we know Nana would want to know regardless of what state she was in.
Nana wasn’t living before that day anyway. She was barely even existing. I think it was a good reason for her to cling on to for giving up. She was and always will be so incredibly loved. Not just by us but everyone in the care home. Never seen anything like it, staff were constantly queuing out of the door to say bye to her each night.
We were told she had hours more than days on Thursday last week, she’d gone more days than humanly possible without food or water. Everyone was shocked when they’d come to work on their next shift or wake up the next day to find she was still with us.
She wasn’t alone when she passed. She had a constant rotation of loved ones by her side. She chose to take her last breath at around 04:40 when I had stood up to make room for family to get here but that would have been her plan. We knew she didn’t want to be alone when the time came and she wasn’t, she just didn’t want me to witness it I don’t think.
PSP is the worst condition I’ve ever witnessed. I’ve heard people say that it is worse than cancer and I agree. It destroyed my Nana but it didn’t put her out of her misery. If Nana hadn’t refused food and drink, she’d still be there, barely even existing for goodness knows how long.
I would say I wish you all well but we all know there isn’t anything well about PSP but I do hope it can be peaceful and you’ll all be at peace when that time comes.
I’m broken, I feel lost but my Nana isn’t suffering now. She is a free elf (we called her Nana Dobby)
I’ll love her forever 💔
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ilovedogs7
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Ilovedogs7 I'm so sorry that you've had to say goodbye, she sounds like she was an amazing person who connected with so many people. My Dad has been going through this cruel disease for nearly 8 years now and has just moved into care so I really understand your pain. He's also loved by so many, who will be broken when he goes, and I know that's a privilege that we don't all get.The enormous tsunami of grief you're feeling at her loss will eventually start to lessen, with the waves of pain becoming smaller and further apart. When we feel enormous grief, it's because we had the privilege of feeling enormous love. That's something she will have been very glad she gave you over her life.
As a free elf (I'm re-reading book 7 again now) she will be able to watch you live your life without being in pain herself. You have done a beautiful thing to be with her as a family, even while she passed. I wish you all the best in the days ahead.
Thank you for sharing. I am so sorry you have had to go through this horrific condition with your nana.
My mother is currently suffering and we've been told we are down to weeks. She is so miserable and her extreme anxiety is all consuming. In just the last week or so she has begun incessantly repeating words or phrases over and over, even for hours. Oftentimes the phrases are nonsensical but she also gets really really upset when she thinks I don't understand. She will ask if I understand and I will say yes and repeat exactly what she said and she'll start getting more and more high pitched saying "No! You don't understand!" then she will keep repeating it but getting more and more stressed each time. Last time I was with her, her sentence was "Never with the sugar on Sundays" and before that she had been telling me "Weed out the ready." At first I thought maybe weed out the ready was some sort of old saying--because my mom uses a lot of those, but I even googled it with no results. I feel so helpless to help her and just try to keep being patient and compassionate towards her, and listen to her even though most of the time it doesn't make sense. But I just wish there was more I could do.
Anyway, she isn't eating or drinking much. I keep trying to encourage her to eat or drink and sometimes she will eat a couple of bites in a day, and she will usually drink a little bit of a milkshake and some pedialyte, but then I ask myself if I am just prolonging her misery by encouraging her to eat and drink more. Of course if she showed signs of thirst or hunger, or was able to articulate that, I would give her food and/or drink. But when she is not showing any of that, should I still be encouraging it? I'm not forcing it upon her, just encouraging. But sometimes she tells me she doesn't want something but I will keep asking and maybe bringing the drink to her lips to see if she will drink because half the time she doesn't mean what she says the first time anyway! (She will more often than not give the wrong answer first for anything I ask. "Mom, are you enjoying this show?" "Yes." "Oh good." "No. I don't like this show.") At what point do I stop encouraging the eating and drinking? Or do I just continue like this indefinitely until she actually refuses?
I don't know, I just hate all of this! I am dreading losing her; I love her so much. But at the same time she's already gone, and all that keeping her here is doing is prolonging her suffering. I don't know what the right thing is or the right way to act or respond.
Nana has been unable to sit up, get out of bed and even speak for months now. Until the last couple of weeks, she was only able to communicate by hand squeezes so the communication was only limited to what questions we could ask. The more I sat with her, the more I began to understand her body language and facial expressions.
Nana didn’t want to be force fed or given a peg thing (can’t remember the proper term!) but I communicated by asking her if she was hungry, I then would continue to feed her, this could take a long time to only get 4/5 small spoonfuls because a lot of the time I couldn’t get her to open her mouth.
I did a lot of research and saw there are so many complications with PSP and the jaw so I tried to massage her jaw joint area and that often helped. I’d also keep putting a spoon to her mouth as you said you tried. Another thing I got her to do was ask her to stick her tongue out at me if she wanted more food… the tongue is a strong muscle and it would often be enough to break through her jaw lock, thus giving me the ability to rest the spoon on her tongue to get it back through. This was also an element of fun because i would jokingly act offended that she was sticking her tongue out at me and I’d notice her eyes go crinkly and her face would light up - that was her way of smiling.
Your Mum could have weeks or longer. We were in a home where they’d never had anyone with PSP so we were always told that they don’t know. Nana could have lasted weeks more if she hadn’t given up.
I’m beyond lost and broken that she has gone out of my life but I’m not sad for her because she was barely existing. Nana couldn’t hug or tell us she loved us. That was something she loved doing.
I wish you the best with your lovely Mum. Comb this forum for anything that might help. I spent hours researching this, speaking to people, I even joined webinars. There are a few PSP organisations and profiles on LinkedIn and Instagram. Honestly I feel I could do a research paper I feel like I’ve learnt so much but I also feel PSP and how things go with each individual is down to so many factors, the level of care, the physical health of the individual etc. I can’t be too sure on that but looking at my Nana and reading other people’s accounts on it, that is the conclusion I have come to.
If you need an ear, just direct message me on here or even put a post to this group. This group has been incredible for help and support. If I could give you all a hug, I really would! Xxx
It sounds like your lovely nana did it her way in the end despite this awful disease. I am glad Nana Dobby went peacefully and can be with her sister released from this PSP prison. Sounds like she was very lucky to have you all and would have known that.
I am so sorry for your loss. I agree that PSP is the most awful disease to have to deal with, for the patient and the carer(s).And yes, it is worse than cancer. My husband had bladder cancer in 2018 and he beat it. He wasn't "ill" with it. He carried on doing what he wanted. Then he was diagnosed with Parkinson's, then PSP. I am sure he developed it whilst he was fighting cancer. Looking back I can see tell-tale incidents.
Now he's bed-bound, can't communicate clearly, has lost interest in everything. Yet he understands what is happening to him. He used to be a strong, fit man who always kept busy. It's heartbreaking to see the person he was disappear before my eyes.
I can see no reason why someone would choose to continue existing with this disease. God bless your Nana, she's now free of her prison.
Thank you for sharing your experiences with your Nana and psp. One moment I think so have a symptom figured out and then it changes and I am back to the beginning. I wish you and your family peace and love as you remember your Nana. So glad your Nana is free of psp.
Sorry to hear of your nanas passing, I feel your hurt as this disease also took my mum on 27th October.
Like you mentioned my mum too was just existing not living I felt she was trapped in a body that was no longer functioning.
I still am beating myself up that she passed without me with her😢after being with her up until hours before. I had fallen asleep in her pillow and night staff had come to check on her startled me and suggested I go and get some proper sleep and they wud ting me if there was any change. This was at 12.15 and my last words to them were “ I wouldn’t forgive myself after all this time of being there if I wasn’t at the end”
At 3am my phone rang and I knew before I answered she was gone 😢I went back and sat with her for 3 hours saying sorry I hadn’t been there. She just looked like she was asleep and I know she is now with my dad again who passed in 2020.
It still feels like I just haven’t been in to visit for a couple of days, I’ve thrown myself into making arrangements for her funeral next Tuesday as I’ve found myself having to be an adult now as mum was an only child and family wise there is only myself and my sister left.
I’m trying to focus on the fact she is no longer suffering - PSP is a cruel disease that robbed us of our lovely mum
I honestly believe that your Mum chose to go because you weren’t there. The immediate feeling after someone passes… I’ll never forget it. Your mum was saving you from that. She knew you loved her. That’s enough 💛
Hope the funeral goes as well as a funeral can go. Nana has hers a week on Friday.
PSP is vile. I do wish they’d have it as a storyline on a soap. They cover all kinds, Dementia, Parkinson’s, MND, Cancer…. But never PSP. Think it would raise so much awareness of it if they did!
I fully agree there’s not enough out there for people to know about the condition , the only people I found that were of any help were the people on this forum which I am eternally grateful for and PSPA - I got tired of going over what PSP is even to the medical profession - I got fed up of people saying oh it’s Parkinson’s …no it’s not 😡
Thank you for replying sending love to you and your family
I wish I had the energy to do something, I really do. I am battling 4 chronic conditions as well as grieving for my Nana and also my great aunty who passed just under two weeks before my Nana did (they were sisters)
I think in time, the condition will be more recognised. I’ll be eternally grateful for this group though. Helped me so much!
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How to handle PSP sufferers inner frustration?
Goodbye my dear husband
When will the suffering end😢
