Yesterday was the day of my brave mum’s funeral. She had PSP for about 7 years. She was only formally diagnosed 2 years ago, but researching the backward falls and inability to look downwards brought me to this site 3 years before that. I would read, with dread, about the path of this cruel disease and wonder where all you dear people found the strength to deal with it. We discovered, of course, that it’s done day by day, challenge by challenge. The gentle wisdom found on this forum was enormously supportive too.
I freely admit that there were dark times when I resented the demands of personal care, only to feel chastened when I thought of how much she bore without complaint, and how comparatively little she asked of us. She would talk of possible cures, her friends around the world who were keeping an eye out for research updates. Even at the end, robbed of her sight, voice and mobility, unable to so much as raise her head, she listened to romantic audiobooks all day, as if in defiance of her condition. I hope I am able to face life’s challenges as bravely.
We were blessed with an angel of a Parkinson’s nurse, who will forever hold a place in our family’s heart. She referred us to a hospice, who, in turn, applied for fast-track CHC funding on our behalf. It was agreed in less than a week and 2 carers were arranged twice a day. Sadly, Mum died just 3 days later, but I’m grateful I was able to be just her daughter again, even for that short time.
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TheBay
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So sorry for the loss of your brave mum. She sounds like she endured this illness with courage and grace. You aided that with love and support, sending lots of healing hugs your way. xx
I'm so sorry. And I fully understand the bittersweet nature of lamenting the loss, and rejoicing in the release from the tyrannical grip of PSP. Audiobooks were our savior as well. My husband listened to so many, mostly nature writing about Scotland, on his headphones in the last year of his life.
I am so sorry to hear of your loss and I thought that your last sentence was wonderful. I am so glad it happened. It is what we all wish for. Now is the time for happy memories to overflow and hide the sadness of the last few years. Your Mum must have been so very grateful for you. Love AliBee xx
I can really hear the honesty in your post. I’m very sorry for the loss of your mum but I also completely understand your heartfelt message here. May she now be at peace xx
May I ask about the Parkinson nurse please? How does that work, what do they offer, and at what stage can this be initiated?
Take care of yourself. Everything you have done for your mum was tremendous x
Parkinson’s nurses work with the consultant neurologist. Ours was allocated to us without our intervention a little over 2 years ago, Mum’s diagnosis being Parkinsonism at that time. Our nurse became Mum’s treatment coordinator: she oversaw medication and over time arranged referrals to Occupational Therapy, SALT, physiotherapy, the incontinence team, and hospice.
More than her efficiency, though, she was sweet, kind and caring and made Mum smile. We were floundering in the dark before her arrival, with little to no support or advice. I wish her upon you all.
Thank you, my own mum is 7 years into this horrid condition. We have neuro on Monday, so I may discuss then. Thank you again, I appreciate you helping even though you are grieving yourself x
Sorry for the loss of your mum. I like you have many angry moments being carer to my husband who has CBD which hard. Take time to relax over the next few months, to gather yourself you will have some wonderful memories of your mum enjoy them till you adjust in getting back into a normal life yourself. Sending hugs 🤗💜
Thank you for your day by day advice. So sorry about the loss of your Mom. She must have been so proud of you for fighting psp along with her. It is a tough road to take. Wanting to know what is ahead but afraid to know at the same time. Peace and love to you and your family.
Sorry you have lost your Mum-May you find peace in the days ahead and joy in the memories of good times. The care you provided certainly helped your Mum cope with all that this awful disease brings. I relate to the dark days and feelings of resentment-thanks for sharing that , it helps others recognize that we are not alone in all the feelings we have to cope with while caring for our loved one. It is good to be remind also, that the dark days pass and we continue to provide love , care and compassion . Sending a big hug.
Courageous Mum, brave daughter. As much as you miss her, rejoice in her relief and release. And yours. May happy memories of happier times come to comfort you when the time is right. A big hug, Purrlie.
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