My wife of 45 years passed away on Wednesday at the age of 67 having spent 18 months in a nursing home. She was diagnosed with PSP in September 2015 having previously been diagnosed with Parkinsons Plus in October 2014. Her symptoms had commenced in late 2013.
Now at peace: My wife of 45 years passed... - PSP Association
Now at peace
So sad CarerKen. It’s very hard losing a loved one after so many years together. I hope you find some comfort knowing your wife is now free and in your own time, find there is life after PSP.
My thoughts and prayers are with you at this very difficult time.
XxxX
Hi, I am so sorry. I know YOU will miss her...lots.
My son died of PSP at home, May 4, 2017..... after a PEG installed because of his 2nd bout of aspiration pneumonia (put him in the hospital for 7-8 days). After 6 weeks, he decided enough was enough and asked to NOT be fed. He had barely turned 55 years old. He died unable to dress himself, feed himself or get up from a chair without assistance. For all intents and purposes he was blind, his eyes also VERY sensitive to light, his speech totally unintelligible. He had lost control of his bodily functions. For two years he was in constant pain unable to move his neck. I know you know the story.
My son's first symptoms appeared on March 14, 2014 (or close to it)...DOUBLE VISION, SLURRED SPEECH, DEEP FATIGUE. Took 9 months to dx (after a million tests..that I am grateful) as Parkinson's, Jan 2015. Another two years, 2017, to reach dx of PSP.
My son did well until the PSP DX came in, along with progression of worsening symptoms. I was his caretaker. He wanted to remain home. He owned his own home and me mine. He had never married (married to his free lance bass playing). I hired a caretaker to stay with him Feb 2017 to May 4, 2017, visiting with him several times each day. I stayed with him on weekends.
At the beginning of his death I was sad and had misgivings with his decision to not be FED. Looking back I am glad he took care of himself instead of what others may have wanted.
I attended two separate GRIEF GROUPS (secular and Christian). They helped me a great deal....along with confronting the decisions I had made and the "why". I feel spring awakening in me...and the "grief attacks" come much more infrequently (replaced by a quiet sadness. Which to me are much more bearable).
Keeping you, and all of us, who has lost a loved one to PSP.
Margarita, Los Angeles, CA, U
I am so sorry to hear that. 45 years is a long time. It is hard I know.
I hope you have plenty of support.
Love and condolences from Jean xxx
Ken, my heart goes out to you in your time of grief. Please take time to care for yourself as you did for your wife. I am pretty sure you know that is what she would want for you. Sending you gentel hugs of support... Granni B
You have my deepest condolences. Your wife is at peace now so try to remember all the joyous times you had over 45 years together.
Ron
Death leaves a heartache no one can heal, love leaves a memory no one can steal.💔
May your heart heal in time .
Deidre
Ken,
Deepest condolences. 45 years together. Thinking of you as you must be reeling from the loss.
A very sad and difficult time for you after so many years together. I hope you have plenty of love and support to help through your grief so that you are eventually able to look back on the good times together.
Love Kate xxx
Sad news CarerKen, 45 years together, a real testament to the love that you had for each other. There are no words that I can say that will make you feel any better right now, it's just another pretty tough journey we embark on when we lose the love of our lives. My husband lost the battle with PSP last October, we'd been married for 46 years, so there's now a part of the jigsaw that is lost and will never complete the picture. You will get good days and bad days and somewhere in between creeps in a new normality, just like we had to adjust to the new normality that PSP brought into our lives. I have found life very surreal these past few months but I can still smile and enjoy the everyday humour that life holds; I suppose I am just going with the flow, just drifting along to where each day takes me, feeling there is a huge part of me missing but still able to look forward. I have a 2- year old granddaughter so she is definitely a new chapter in my life. Somehow, in the whirlwind of mixed emotions we do find the strength to carry on in ways that work for us; very early days for you but I hope that you will find that strength and have support from family and friends to do that. Very best wishes, HilsandR
So very sorry for your loss.
I’m very glad your beloved wife is now at peace
Sending hugs,
Betty
So sorry to hear of your loss but at least she is now free of this terrible disease. My husband was diagnosed at the same time but he had it I know as early as 2012 so again similar. You must have such a lot of happy memories that you can draw upon xx Pauline
As an other Ken who is a carer. You are very much in our thoughts and prayers. Love Ken and Doreen.
Thinking of you at this sad sad time.
So sorry to hear this. May your wife rest in peace, finally free from this evil disease.
Now it's time to look after yourself. It will take all your hard learnt caring skills, time and courage.
Sending big hug and much love
Lots of love
Anne
I am thinking of you and sending you hugs. It’s so hard losing a loved one and my heart goes out to you, just remember to take care of yourself over the coming weeks as it gets tough.
Love Sarahxx
My thoughts are with you. This is such a sad time but the only consolation is that the suffering is over. Unfortunately ours continues. God bless you.
Cuttercat
Hi CarerKen, I'm sorry to hear that.
Currently my mother inlaw is in the hospital right now, she also has PSP, her symptoms started on 2014, was diagnosed for Parkinson on 2016 and the later PSP, we are just waiting for her to finally rest there, she was rushed to the hospital last Friday because her stomach swelled, she was not able to deficated for 4 days and on friday havent had urinated for the whole day, lab result says that her kidney failed, and her intestine has a whole that made her stomach swell because of the infections, doctor said she needs to be operated but chances are 50-50, she is so weak, her potassium dropped and she is in so much pain.. she herself said few weeks ago that she is already tired, we understand her, even if it hurts us, but we cant be selfish, and we dont to prolong her agony. She has pain reliever for now to ease her pain and for her to sleep.
Your wife is in peace now and suffers no more.
My heart goes out to you. You have 45 years of memories to help you get through this sad time. I wish you well.
Pat
Hi CarerKen, so sorry for your loss. Praying you find strength for the days ahead. Lots of love Nanny857xx
Dear CarerKen,
I'm very sorry to hear of your huge loss. 45 years! You can't imagine a life without her - you probably don't remember a time she wasn't part of your life. As others have said it is a release for her, but cruel for you. I hope you have good supportive people close by, and I wish you grace, insight and healing as you move through the grief.
XX. Anne G.
God bless you Ken so sorry for your sad news please take care we’re all here for you hugs
Dear CarerKen,
I am so sorry for the loss of your beloved wife. I am still haunted by the death of my sister last summer of PSP. It hurts a lot, I know. Give yourself time. And trust that she is at peace and no longer hurting. May you find comfort, love, and support from ones close to you. May God hold you close.
--Mary (PagesofWords)
So sorry for your loss 🙏🏻
I'm so sorry for your loss. My husband of almost 36 years has PSP, diagnosed almost 2 years ago after a diagnosis of PD in 2016. It is a horrible, horrible disease. May you find peace and comfort in the knowledge that her suffering is over. Look to your family and friends for love and support in the coming days.
Teresa