Oh, friends, I am so sad this morning. I had been trying to get in touch with Andrea, whose husband, Bruce, died of PSP just last year. She had stopped replying to my messages. She had mentioned in the spring she was having heart troubles, so I was worried, but had gotten caught up in my own concerns and had let our correspondence lapse. I finally decided to try to find her online, and this morning I found her obituary. She died in June, just 57. We had often spoken of getting together and doing some hiking someday. We had fantasized about a US gathering of the friends we made on this site.
So in honor of Andrea, whose humor and spirit got me through so much, I'm asking all of you carers, please, to try to take care of yourselves. It's hard to find the time, and energy, I know, but don't put your own health always last.
Love and peace to all here.
Sarah/Easterncedar
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easterncedar
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I’m so sad to read this. Thank you for sharing. I’ve just recently made an effort to get back outside for a daily walk - for the very readon you mention.
I agree carers often ignore their own health when looking after their loved ones
You must be very shocked and deeply saddened to have discovered that your supportive friend has died.. it is such a shame that you never met .
Sending love and hugs to you
Lynda 💕
Sad to hear. Care giving is a grind to do.
Had a friend who lives around the corner from us had a stroke taking care of his husband after the husband had his second quadruple by pass. His husband died in recovery. My friend is about recovered from his stroke. I now know why he had the stroke.
OMG! That is heartbreaking to read Sarah. I just don't know what to say. Us oldens went through so much together with Andrea. I was only reading some old posts from her last night and wondered how she was. Thank you for letting us know.
To any new carer reading this, please take note. Andrea, like you and everyone else on this site put Bruce first, second and last. Never was there any thought for herself. She had very little help, yet somehow she managed. Obviously now, at the cost to her own health. We all do/have done this. Bruce was lucky, Andrea's health lasted long enough for him to be cared for, in the way, she wanted. Your loved one might not be so fortunate. Then what? Who cares for them then???
Please, Please, as Sarah as stated, in memory of one wonderful lady, make sure your health is the top of your priority. Without it, your loved one WILL suffer.
Sarah, I grieve with you. She was a true friend to us all and will be sadly missed. If you manage to get in touch with her family, please pass on my condolences. Andrea got me through some pretty bad times, with her humour and love.
Heady, I too am an "olden", and this sad news about Andrea, shared by Sarah, shocked me as well. She was a sister and she was there for me, and all of us. It is surreal, sad, and stressful, the first year after letting go of a loved one. Who is the carer when they are not taking care of anyone? And Broken Heart Syndrome is very prevalent. New and ongoing caregivers take note. If you do not learn to nurture yourself you never will. I look back and (though I have not regretted being my husband's primary caregiver), I often have thoughts of what was I thinking trying to be all and do it all for him? Why did I not insist on help from his family members? Why did I not secure hired help sooner or for longer periods of time? It's all a blur of angry outbursts, falls, ER visits, long days that slipped into sleepless nights...clueless & kind staff in rehabs and during extended hospital stays when I did not know if I would be bringing him home or leaving alone.
There were good days; shared moments so heart-wrenching in their simplicity. A smile, sharing laughs at the ridiculousness of the situation, loving family gatherings, overly adventurous outings (on my part) that left us both exhausted, but oh so happy! There were days when I wanted to walk away, and sad lonely nights spent sipping my solitary glass of wine and feeling sorry for myself. That's when I reached out to the old timers, and eventually shared stories and advice, with the newcomers on this site. All of you kept me sane and kept me going for endless hours, days and nights that turned into weeks, months, and one more year of his life. And mine.
My husband passed away two years ago in October. My life is very different now. I try to tell other people what it was really like but they just seem confused that sometimes I actually miss my old life! I try to explain my life had real meaning then, my days had a definite purpose. Now I am always looking for a purpose, and trying to create meaning in my life. Not an easy feat. But I actually have time and energy now. Honestly, it feels weird. Still.
I am learning to take care of myself (cliche as that sounds. I do look at life differently. Trying to find joy in small moments, to be grateful for the blessings in my life, (yes, even on days I do not want to get out of bed in the morning:). Sleep still feels like the biggest blessing these days, right under being alive! When I have my glass of red tonight, I will definitely not be feeling sorry for myself. I am going to remember you Andrea, and feel lucky to have known you.
Love & Blessings to all of you. Please love and take care of yourselves.
Oh Jayne how lovely, wonderful and absolutely amazing to hear from you. I haven't seen you post for such a long time. I have missed you dear friend. You were the first to ever respond to me, we shared so many dark nights alone but on the ether, with our private glasses of wine.
You still have that gift to put into words, what I am feeling and in a way that everyone wil understand and relate to. I am glad that life is starting to treat you well and you are slowly recovering from the traumas of caring. It isn't until it's all over, that you realise the strain, both mentally and physically, caring for a loved one takes out of you. Not that I would have it any other way, but yes Iike you, I do regret not shouting out a lot earlier, that I needed help. Steve's life would have been a lot better if I had. But both our men, knew that we loved them, they died in our arms. What more could a person ask for? So we didn't do tooooo badly!
I stand with you, saluting Andrea and everyone else that got us through dark times and I especially raise a glass to you, dear Jayne.
Thank you for those words. Thank you too for helping me when I was new on here. Stumbling about and wondering what to do! Everyone on here is just wonderful. Truly you are! I think there would me many more of us gone without the care everyone shows for each other! I am so very sad about Andrea. I try to think she is with Bruce now and that is what she wanted poor love.
Oh I really needed to read this. I have been neglecting myself lately and I feel terrible. I struggle to let someone else take care of dad. I worry the entire time I am gone. I am going to start my new year by taking time to take care of MYSELF as well as my father.
Hi, start today, not in the new year! Every minute you are under unnecessary stress, it's one minute closer to your Dad, having to be looked after by someone else, full time. It's not just accepting help, learn to take that deep breath before dealing with what ever crisis PSP has thrown at you this moment in time. Quit worrying about others taking care of your Dad, if you are in a state, they are going to be far better than you! Sorry if this sounds a little harsh, but if you are your father's main carer, then you really need to take care of yourself first.
Today is my birthday, two years ago today, I was told that Steve was at the end. The next three days were the best that we went through, as far as Steve's case was concerned. I DID let other people take over. I once again became his wife, that has been very precious to me over this period. Please, please make time to let your Dad be your father and you be his child again. He doesn't care if someone else does the caring, as long as you are around, telling him you love him. That's all we ever want really.
Thanks, Jean. I'm actually doing pretty well, most of the time. It helps that my wonderful mother, nearly 92, has just moved in with me. She keeps me on an even keel!
Thank you for both the announcement and the photo. I like how she looked.
In her shares, AVB would often quote biblical scripture....it was comforting. She was so young, 57. When my son died and I wrote of my pain, she wrote back and told me (paraphrasing) that no matter what I did or didn't do PSP would have it's way. Looking back, I see how wise that statement was. It does take "time" to realize that.
I prefer to think that Andrea died of a broken heart rather than the toll on her heart condition from being a caretaker. Bless her and bless Bruce.
Thank you Sarah for sharing this sad news. Andrea supported and guided me as she did with others and always had the perfect biblical verses to uplift us. I'm sorry you never got to meet up.
Sad to hear ... all the best to the care givers since they need to take care of themselves in order to take care of others - a lot of us tend to forget that at times
I am having a hard time putting into words how this makes me feel.
Alone is the best word I can come up with. After our loved one whom we have been caregivers for passes,we are so alone. Yes,we may have children or siblings who love us and check on us,but it’s not the same as having that one constant companion.
Andrea did not have a lot of time to experience that aloneness.She seemed so vibrant and alive (only 57) it is hard to believe.❤️
Thanks for relaying this sad news to us Sarah, she was a brave and resilient lady and I second all that Heady said on her post. Andrea was no age and should have had a length of quality time after caring for Bruce with little outside help. Life can seem so infair especially after going through so much heartache, you just don't know what's around the corner.
Look after yourselves all of you dedicated carers, you deserve a little downtime and pampering along this arduous journey.
No sunshine in my soul this morning Sarah. This is such sad news, I know many on this site were delighted in the conversations we exchanged with Andrea... many brought a smile to my face. So deeply saddened, this has been a difficult week for the larger PSP community with a number of loved ones earning their wings. So to all you caregivers - please take care of yourselves.
Such sad news Sarah. Thank you for posting. It reminds us of how short life can be. You may have seen Heady’s photo of a get together 4 of us from this site joined in this week. You spoke about getting together with some of your US internet friends, perhaps now is the time to try to do it. As I say to my sons, if you have the time and the finances, do it now (whatever you want) don’t wait, it may be too late by then.
Thanks, Bev. Sometimes I find the site very hard to visit, but I keep coming back for the community that got me through it with at least some measure of sanity left. I miss you guys. Love, s
It's strange isn't it. How a Bunch of strangers, who you have never met, can keep you on the straight line. I would never have believed it, if it hadn't happened to me. Now I can put faces to names it makes it so much harder to leave. I want to run as far as possible from PSP, yet I can't leave my family, who I love so much. Sorry guys, you are going to have to put up with me, lurking in the corner and occassionally popping out to put my pennies worth in.
I am feeling so bad about Andrea. Wish I could sit on your sofa with a glass of wine and a box of tissues right now! I really feel so bad for Andrea. I hope and pray that she didn't suffer.
Saw your photo. You looked like you were enjoying yourself?
Sarah, I am so very sad to hear this news. Andrea kept in touch with me too. I just thought she had decided not to come onto the site as maybe she was feeling she couldn't cope with it all. I should have known better? She was always so kind and generous with her time. May she rest in peace with Bruce. She told me many times that 's where she wanted to be. Maybe God has granted her wish?
So sorry to hear about your lost friendship. Taking care of ones self is easier said than done. I don’t think we always realize how much we are stretched with our stamina. I am getting less and less sleep and do not have much time to keep up with my good support on here. Nancyxx
The lack of sleep is a killer. I wish I had found a way to get some, myself, when I needed it most. I could have made my guy happier than I did if I hadn't been so exhausted and on edge. I should have slept in my car at work more!
Oh, Nancy, although I don't know how you can do it, my wish for you is that you find a way to prioritize getting some sleep. When you can say you don't have time for the support here, I know you are hurting! Is there no one who can spell you for the space of a naptime?
You need sleep more than you can imagine. You also need support. The Iovely people on here will provide it! Make that 5 or10 minutes yours for support! The people on here are pure gold and will get you through the worst times and offer their support always. We all need it!
Isn't it too sad? Forgive the presumption, please, my friend, but you are one, Kevin, who needs to take care. I'm pretty sure of that. I'm always heartened when I see you've posted or replied here. Hang on. Peace, ec
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