I wanted to share something - Someone sent me a private message on here yesterday, and the message basically asked how I can remain so positive all the time when my Mom is dying.
I realize that there is a lot lost in translation, but - my posts on here are to offer a sliver of joy in the moments I cherish with my sweet Momma.
I have deep sadness, and have my private spaces where I let it go — some days (many) I think I’m losing my mind as a caretaker. In fact, I feel like I have lost myself on this journey. Respite is my salvation. I have a massage scheduled here in my home today — whoop!
We all have this mountain we are climbing, and some days feel like we are barely hanging on … I choose to focus on the good. I am not naive, I realize I am going to have to eventually say goodbye to my Mother (a Warrior) from this dreadful disease —- but, I refuse to let anticipatory grief smother the days, weeks, months that I do have left.
Because this post will be in my thread, and many beyond today will read it —- Hang in there!!
Mental Health is important for the caregiver, but also for those we care for —- talk to them as if the disease isn’t present, make them feel included, share your day without requiring a response, offer insight on what is happening in the world …. Love them as you always have, and don’t allow this disease to rob them of some
of the simple things that we as their caregiver can bring.
My posts may be appear to be all smiles and giggles, but it is intended to share the moments I cherish with my Mom that I will never want to forget.
Choosing joy for me tends to burn away the pain.
Being a caregiver is something that no one will ever really understand, unless they have been there. This space that has been created in this forum has become my ROCK for years now —- I appreciate every single one of you — I consider you friends.
Written by
bazooka111
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My thoughts exactly when I cared for my darling husband. Yes there were tears but also lots of wonderful occasions when we could laugh and make very happy memories. It’s now the good times we had together during this awful illness ( and before) that I remember the most. Of course I think of him daily but not with sadness. Life goes on after PSP and for me it’s been good, very good and I know C would have been proud of the way my new life continues after years of caring, making the most of every day.Keep on carrying on bazooka. You are amazing and you’ll have so many happy memories to look back on.
Well said Kim. There is no right or wrong way to manage these challenges. I had similar comments made about always being upbeat by friends some of whom found it “too upsetting” to see and spend time with my husband.
I am so glad I embraced every special moment I could, I now have a wealth of positive memories which 3 years on are beginning to outweigh the awful challenges of these diseases.
Keep making joy and memories to enriches everyone’s lives . I love seeing your posts
Hugs to you little sister (Kim & l discovered we share the same birthday. We of couse have different Mommas) Our mothers both shared many things in common... including PSP. Personally l applaud your efforts. Kim as you share photos of your sweet Warrior Momma... l think of my mom. She did not like her photo taken... so sadly l have very few. If l had the chance to do it over again... l would seek a few pictures when she wasn't looking. Mom's birthday is coming up soon & she will celebrate it in Heaven. I have stayed on this site to help share mom's PSP experiences the best that l can and to stay in contact with my understanding, caring friends. Like many other diseases this is a hard journey and we all cry as our hearts break. That is why I add... Sending Hugs... Granni B
Sometimes l have added silly remarks in hopes of encouraging a smile. Other folks share photos of hummingbirds & flowers which bring Mother Nature into our lives to brighten our spirits. Others share the problems they are having ... in hopes of finding a solution. No one understands the PSP ups & downs better than this group of supportive folks. Sending Hugs to All... Granni B
Absolutely Kim! As our priest said over the weekend, Easter reminds us that life is for living. Whatever your faith, or none, to live life despite the struggles, big and small, has to be the goal.
My thoughts exactly Kim! The one thing that got me through the dark days after Steve left, were these precious moments that we shared during our PSP journey. Have no doubt fellow carers, this journey is just as much about you as your loved one. Please look after yourselves.Sending big hug Kim, and much love
I believe Bazooka 111 that your reflections contain realism, sensitivity and courage. They reach the mind and the heart at the same time.Thank you very much for sharing your privacy.
I can't put into words the emotions I have had reading this post and the replies, thank you bazooka111 for being an inspiration, I hope I manage to keep as positive as you as my caring journey continues.
Bazooka, you have echoed my own thoughts, but expressed them more eloquently. Thank you, over and over again ... your words reinforce and help my determination to find the joy in every moment I can. ❤
Really love ur bazooka ish comments! I was diagnosed 3.5 yrs ago, now 80, still chugging on, telling everyone to Please Stay Positive (PSP), and smile while you still can. I haven't hit the horrible bits of degeneration in this disease yet, and my aim is to die fully alert WITH the disease, but not OF it. We'll see.Carers are angels. Mine is my partner, very caring, very practical, very knowledgeable, and wonderful cook! Neither of us have any fear of death, have been there v close already, and with great faith that we will 'be just fine', with guidance from the great loving 'beingness' just beyond our 5 senses.
Be great if more people could understand that and let go .......
Be happy, be fulfilled ....... and I'll stop chattering on ........ TimbowPSP xx with love.
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