Hi Heady, Eastern Cedar, and all my dear friends on this site.
I was checking in saw Heady's post on getting together. I have to admit I was envious of all of you being able to do so. I have been busy here in the states. I am happy! Truly. Never thought I would feel right again but one day my life just seemed to make sense. I have recently sold the home I shared with my husband right up until the time he passed. Too many emotional ghosts there. I have allowed friends to stay there to heal from illnesses and it had become a healing space. But it was time to move on. I have a business and am remarrying my first husband next month. We share a home as well as being business partners. My son's neurosurgeon said his brain appears to have never had a tumor and he is finally overcoming the symptoms of his TBI. He is back at his university and has a beautiful, kind young woman who (fingers crossed) will become my daughter-in-law.
I am sad to say though, I had to cut my husband's family out of my life. Their behavior during and worse after his passing from PSP was atrocious. I have forgiven, but not forgotten. Life is too fragile to surround yourself with negative, emotional vampires that that disappear in illness and return with outstretched hands in death.
My advice to those still in the midst of caring for loved ones with PSP (or putting back the puzzle pieces (that once were the parts of a life well-lived), and searching for the missing ones that somehow went astray when life as a caretaker began. Heady is right. Fine isn't what it used to be. It is bittersweet, poignant during the best of times. Cherish every moment with your loved ones and give yourself a pat on the back every day. Yes even on the "bad" days. Don't try to do it all, be it all, all the time. If help is offered accept it in any form it takes. Let go ( emotionally if not physically) of the so-called friends and family members who chastise and undermine your best efforts. Surround yourself with those who truly have your best interests at heart.
You are amazing and you will survive this and come out stronger on the other side!
Hugs & Love
Goldcap/Jayne
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goldcap
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Hi Jayne, I am so pleased you have found a new life after PSP and wish you lots of happiness in 2020. It’s good to hear of your forthcoming remarriage and of your son’s diagnosis. I feel the same about letting go of anyone who is negative in speech or actions. Life is far too short to have to put up with anyone who puts you down or is unhelpful in the way they act. Have a great life Jayne. Anyone who has spent years looking after someone else deserves to be able to make a new, positive, happy life, free from any guilt or regrets. It doesn’t mean we didn’t love those we cared for, or we forget them, to me it means I value life so it’s worth making as much of it as I can, while I can as it passes all to quickly.
Wishing you and your family love, good health, fun and lots of laughter.
"t doesn’t mean we didn’t love those we cared for, or we forget them, to me it means I value life so it’s worth making as much of it as I can, while I can as it passes all to quickly."
Yes Nanna you get it!!! Unfortunatley now more than ever people are starting to get a wake up call to what is really important in their lives. I hope you and yours, are safe, healthy, and not experiencing too much "Cabin Fever". Best of everything to you too!
Hi Jayne It’s so good to hear from you. I’m very pleased you remarried. The ceremony sounds lovely in your art gallery.
I’m surviving the isolation but see a lot of friends and family via Zoom, FaceTime etc. I do miss hugs and physical contact but am so much more fortunate than others as I have a garden that I’m thoroughly enjoying more than I have for years. During my 3 years alone I have been on lots of holidays and never had time to keep the garden as we used to when Colin was alive. Now it is coming back to its former glory and I’m loving it. I have a robin who sits on my hand to take food and I have spent hours sitting still waiting and a few days ago, time sitting still paid off. I have even managed to film it.
My sons are finding it harder work wise, loss of incomes etc but I spoke to my daughter in law tonight and she said her initial feelings have mellowed when she realised how fortunate she is to have running water, a roof over her head, a garden to entertain her 3 children, enough food and enough space to be able to keep away from people not in her family.
I wish you and your husband many more happy years together and once this strange time is over, you get to all the things you want to.
Jayne! How marvelous a surprise to hear from you and how happy I am to know you have come through and more. So much very good news! It brightened my day more than I can tell you. I'm off to sleep - back to work tomorrow - but will be rereading your post again when I wake up. A great note to end and begin the day on. Thanks for reaching out! Love and peace, EC//Sarah
Hey Jayne, what a lovely surprise to wake up to, this morning. I really miss you! You were one of the first people to reach out to me, that I felt, really understood where I was coming from. Jayne, that moment changed my life. From then onwards, I was hooked on this site and we all know what that means to us all! I can never thank you enough.
Ok Bull...t over! You are getting married again, that's fanatic news. I hope you both will be very happy. Your son's news is great as well. My goodness, this post is hard, normally, I am commiserating with folk, it's wonderful to be full of joy about what is happening to you.
My life is moving forward as well. I have a very nice new man in my life. Looks like he is a keeper. We are spending a lot of time travelling, just come back from South Africa, off to Argentina in a few weeks. Thankfully, I am still in contact with Steve's children. They are both very pleased that I have found someone else, which helps. (Well they say they are, which is good enough for me!)
You are right, there is life after PSP. I would like to say, even better, but I think it's more my attitude to life as changed. I no longer worry about trying to make everything perfect, or more importantly being perfect myself. I learnt the extremely hard way, where my strengths and weaknesses actually were, certainly not where I had always presumed. I now live with that in mind. If I can't cope, I say so! Totally new to me and very refreshing. I don't fight battles that I can't win, or more importantly, don't matter. But woe betide anyone that gets in my way, on something that does matter. It's so much fun, to suddenly have power!!! Oh to be 16 again, with the knowledge I now have about myself.
Jayne, you released a monster and for the first time in my life, I actually like myself. The one (& only) good thing to come out of PSP, is finding all the lovely folk on here that has made a huge difference to my life and to Steve's care, during his long battle with this evil disease.
I hope you have a wonderful life with your first husband. We know that you would have learnt from your previous mistakes and be able to make this time around, really happy. You deserve it! Thank you so much for popping in to give us your news. I often think about you and have wondered how you are, now I know!
Sending an extremely large hug and sooooo much love.
Anne, I have been wanting to acknowlege your post for some time. Now sheltering at home I seem to have time enough to catch up. I absolutely LOVE this "new, improved, stronger than ever" Heady that I have always admired. I resonate with everthing you have to say. It was an incredibly difficult journey but we have come through to the other side of strength, understanding, empathy, and yes, dare I say happiness! Our guys are smiling down on us in amazement at the woman we have become. PSP did not squelch the life out of us but left us with a renewed appreciation for actually living not just exisitng. We take in the good and discard the petty, mundane, BS out there. I am glad you have a new man in your live and you are experiencing adventures together. My first husband & I remarried in a small ceremony in our art gallery in early Febuary with family & friends. I thank God we were able to do so before the reality of COVID 19 became out new normal. I hope you & all your loved ones are safe and well! You go Girl!!!!
Oh Jayne, what a wonderful post to see first thing in the morning. Again, you are there for me! Feeling a bit low, this lock down is beginning to get to me now. Thankfully, Bryan is with me, so not quite the hardship others are going through. We are trying to make it fun, having date nights etc., perhaps that's why I'm down, the happy juice flowed too much last night!
It wonderful that you have finally re-married. Many, many congratulations. I hope you both be very happy in your renewed love. Timing was perfect as well. All weddings have been cancelled over here. We got back from Argentina a week before it all started going pear shaped, thank goodness! Probably the last time we will do any serious travelling. Who knows when this will end and what will be left of the world as we know it. Definitely going to take time, getting the economy up back and running normal, if it ever goes back to how we knew it. Must say I am loving the peace and quiet from no noise from cars etc.
Look after yourself Jayne. Stay safe. Most of all, be happy.
Hi Jayne, How lovely you and your husband had your wedding in your art gallery with family and friends to share your special day, especially before lockdown came into effect. Wishing you every happiness for the future.
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Did your PSP patient work with metals?
