Hello, to everyone! It has been 8 monthes since I lost my beautiful mother to psp. A lot has changed in my world without her to say the least. The real reason I am writing today is because I have came to the conclusion that I have been traumatized by this disease. I lost my dad suddenly in 2009..... such a shock!, he was my everything and I was his baby girl lol although I was. 42 lol. It was the saddest time of my life!, although I miss him, my heart did heal, had nothing but great, wonderful memories ! I was fortunate to have 2 of the BEST parents in the world! September 2018 I lost my wonderful momma to psp after just 4 years since the first symptom of slurred speech. I told my poor sweet momma to go, be with daddy...be with Jesus....because I could not stand to see what this disease had done to her!, I told her what an amazing mother , nana,friend,and lady she was, I was soo proud and thankful that she was my momma, I loved her soo much!! I’m a tough girl ask anyone! Lol. I can do just about anything, and can work like a mule lol not much scares me! But I tell you what...... but now.... when I think of her, I just get this anxious, sickening, overwhelming feeling, I truly feel traumatized! My mom had the disease but I was the victim.... what a devistating disease this is! I feel for everyone that has known psp ! It is pure evil ! Nobody deserves to go through this !
Alli
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Reidallison
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You were traumatized by something you could not control. It took a loved one from you - you are allowed to be angry and disappointed with how Life victimized you. Have a hairy canary for you! Throw something. Then ~ Get plenty of sleep, Exercise, Drink lots of water and Breathe . Take all the time you need to redefine how you are going live with your parents as they are and how you will go on and live your wonderful life. They will always be part of your life. Anger will always be around, too. Keep your visits with it short and you'll be OK💪🏼💐 (in your own time)
I have just read your post and my heart breaks for you. I lost my husband 18 months ago after his PSP diagnosis of 4 years.
We lay in bed the night we had been told and he thanked me (this was very unusual) for going to the appointment with him. I feel as though I was there when he was handed his death sentence.
What you are going through is probably what many of us on this forum have/are experiencing. Please don't beat yourself up it's a hard thing to deal with. Sadly no matter what anyone tells or says to you won't appear to make any difference.
Take care of yourself as you go through this time, I know how tough it is and I am no where near to feeling more at ease with losing Les.
Baileyboo has nailed it, Alli, all the words in the world, however meaningful they are written, will not ease the devastation you are feeling at the moment. My husband, the best husband, dad and grandad died 8 months ago from PSP and I, too, am walking that often seemingly endless road looking for the answer of where do I go from here. I do believe though that grief and joy can co-exist but it does take effort on our part to embrace the good that is still to be had. Your wonderful parents gave you life and would want you to live it; don't let PSP win again by taking the joy of life from you - speak to a professional if you have to because for some that can be really helpful. Do hope that soon you may see some light at the end of the tunnel. Best wishes, Hils.x
What can I say? Except I understand every word you have written. I always have felt two people have PSP, the sufferer has the disease, but the Carer suffers the symptoms and has to put up with aftermath.
My husband died nearly 2,1/2 years ago now. I had a lot of counselling during his illness, to cope with the anger and frustration that I couldn't do anything to help. I was diagnosed with PTSD, as I kept reacting to crashes and bangs! Still do, I don't suppose that will ever stop. Recently I have had to go on antidepressants and I also attended a course for low mood. Feel a lot better now. I suggest you go and see your doctor to discuss your feelings and perhaps a counsellor to help with the anger. Like you say, you are traumatised by what has happened to you, PSP is an evil disease, we all need professional help us with this journey.
I react to crashes and bangs too. I named it Mom-dar. I’ve got my Mom-dar on 24/7. I’m in the “anticipatory grief stage” right now. Just waiting for the rug to be pulled out from under me.
I also started on an antidepressant recently. My mood seems to be more mellow and well balanced. It’s helping me be a better caregiver and I need all of the help that I can get.
Dear Reidallison,
You feel the way you feel and there’s nothing wrong with that. Your parents will be alive in your heart forever. Please continue to let us know how you’re getting on. You’re not alone and we’re here for you.
I’m sitting outside on my patio right now watching a beautiful hummingbird dance in front of me. It’s the little things that make life precious. I hope picturing this image in your mind brings a smile to your face.
I too can relate to everything you write. I lost my dad in December 2017 and now feel completely withdrawn, don't want to go out, don't socialise, have lost interest in pretty much everything, and struggling to work. My two rescue dogs are my therapy, they get me outside daily at least. Now looking after my withdrawn and depressed mum who has several health challenges of her own. Hard to stay positive sometimes, but hanging in there! It's such a challenge to get over watching a loved one suffer like they do with PSP.
Thank you all for your word and compassion!! I am so sorry that everyone on this sight has gone through, is going through or will go through the same devastation!! Like you’ve said there really aren’t any words to take away the pain. I pray for you all also. I know in my mind I need to move on and try to enjoy the rest of my life, for that too will pass soon enough, but my heart is soo heavy it drags me down! I will go on as lots of you have, and try to make the best of it as my mom would want, but wow..... I need her!!! Lots of love to all of you strong wonderful people... and I thank you for your compassion , understanding and love!!
My dad was diagnosed summer 2019 after a bad fall from the top stairs and then we were told about psp. My mum is his full time carer but gets so frustrated looking after him 24/7. My siblings and I who all have kids under 12 go as often as we can to visit and help but its not the same. We hate seeing him like how he is.
He don't hardly talk to us kids or grandkids, coughs/chokes extremely which worries us all, can't walk unaided to name a few.
We get annoyed with my mum because she thinks hes doing things on purpose because she still can't accept his disease and all the symptoms. She believes he will get better by praying to god and gives him herbal remedies.
Its just horrible to see him deteriorate infront of us and nothing we can hardly do.
Hes worked so hard all his life to give us 5 children the best starts in life but we can't now help him.
He had to retire from work at 61 because he weren't himself as nobody knew what was going on with him then.
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