Robert went to the Lord Friday, August 7, after a 14 year battle with presumptive corticobasal degeneration. He was 75 years old. He donated his brain to the Mayo Clinic Brain Bank, so we should have some clarity, eventually, as to the cause of his years of decline. I have been conflicted about sharing this news with all of you because I knew that the end of his life was approaching and wanted to tell you that it was peaceful for him and for me but... it wasn't, except at the very end. His degeneration, overall, was painful and humiliating, but I think I was more aware of it than he was at the end, which was really the last four months. The two weeks preceding his death were especially difficult because he wanted to live, in spite of all the suffering, and fought to keep life going. The last week was a torture for him and for all of us because although his body was failing him and he weighed only about 85 pounds, he had the heart of the athlete he was all his life and his heart kept supporting his body and keeping it going even though he struggled to breathe. With the help of Hospice, he passed at home as he and I wished. My daughters and I administered morphine and an anti-anxiety drug to diminish his pain, sat with him, whispered to him our love, swabbed his mouth with moisture, held his hand and played the music that he loved. At the very end, it was beautiful. I was playing an instrumental version of "Send in the Clowns," a song that he played well on the piano, held his hand and whispered to him. As the song was ending, I kissed his hands and then looked up at him, and he had left us.
The funeral was a beautiful Mass at our church, which allows masked and socially distanced congregants and a burial in the adjacent churchyard with military honors. So many tributes to him have poured in from all over the country and they all have been uplifting. As my brother-in-law said, "The condition defeated Robert's body, but it never defeated his spirit." I am so grateful to all of you who have walked this stone-strewn path with me. Thank you.
Marilyn
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Thank you, Northstar. Effective treatments can't come soon enough. I wish that all neurodegeneratives received more attention and more research funding.
Yes, and that trip remains a special memory. He enjoyed it so, but also because the Biltmore Estate was so accommodating of his needs. I wonder whether the businesses which go "the extra mile" when it comes to disabled individuals realize how important it is to the individual and the family who know that they are "making memories."
Thanks, Dance. That photo has become one of my favorites, It is from May, 2019 and is from the last time he was able to travel. We took a road trip to the Biltmore Estate in the mountains of western North Carolina.
What a beautiful photo of the two of you. Your courage and energy radiates from you both. Thank you for sharing your deeply touching and personal story. For those of us in the advanced stages, it is a strength and support.
May the Lord bless you and your family in the coming chapters of your lives.
Juliet, thank you. I wanted to be honest about the circumstances of his last weeks, but don't want to frighten anyone. Our decision to have him stay with me and pass at home is one that I think many of us want to make, but I have to admit that I didn't understand how much strength -- physical and emotional-- it would take to see that decision through. I don't regret it, nor do our daughters, but we did not anticipate just how personally challenging it would be.
You and Robert have been an example to all of us over these past years. No one on this forum has survived with CbD for as long as Robert and no one has had to be a carer of someone with these horrible diseases for as long as you. I wish you peace and happiness for your time ahead.
Thank you, Richard. What helped me is that I truly considered it an honor and a privilege to care for someone I loved and am deeply grateful that I had the health and resources to do it. I think that feeling is shared by many caregivers on this site. I wish I were wildly wealthy and I would fund a major international research and treatment center for neurodegenerative conditions. Right now, I am surprised at how easily I have given in to the opportunity to rest a bit.
Yes, peace is a gift. We all wish for it, whether we are consciously aware of it or not, but it is something that every patient and caregiver rightly deserve. Good for you Marilyn !
Thank you, Sunset. And by the way, Andrew Lloyd Weber's Sunset Boulevard was one of Robert's favorite scores. Our daughter slipped into the obituary a paragraph about his eclectic tastes in music, which, in the space of an hour could range from Sunset Boulevard to Leon Redbone to Cindy Lauper toTchaikovsky. We never knew what was coming next when he was in charge of the compact disc packing for our family road trips!
Prayers and condolences. What a beautiful tribute you wrote along with a picture that radiates the spirit and love of you both. Having recently suffered the loss of my spouse and best friend after some years with PSP, I pray every day for a cure for all these diseases.
Yes, you are also in a special place now, as you look back with memories still fresh of the suffering and look ahead with hope. I had 54 years of friendship and 52 years of marriage to a wonderful man and I am finding strength in that blessing.
Sebuly, thank you. And aren't we fortunate to have each other on this site to share the small joys and large sorrows that accompany these conditions...
Marilyn, it is good to share experiences, both good and bad. My husband was diagnosed with corticobasal syndrome last December. This group has provided information and support and hope. Be good to yourself.
Thank you, mj. I do keep those memories alive and well! Am thinking, too, that I will compile the kind words and tributes that came in from so many people and make a small book of them, to share with family and keep close to me.
So sorry Marilyn for your loss and for the suffering you both experienced along with your daughters. I give thanks that Robert passed away knowing your love for him and to a favourite piece of music. The funeral attendance with military honours and tributes are testament to how he was held in high esteem.
Now it is time to take care of yourself, just one day at a time. Hopefully your daughters live nearby and can give you support during and after this difficult time .
Take care, sending lots of love,
Nanny857xxx
Ps Thanks for sharing your lovely photo and sharing your story. Both of you have been so brave. xx
So sorry for your loss. May you take comfort in being able to care for him at home, something we all desire to do and yet it isn't given to all of us. May you just take time now to recover from being a carer, and do something for you. God bless you for all you given to your dear hubby.
Yes, it was a special gift to be able to take care of him all that time. We all do our best, and sometimes it just isn't possible to care for someone at home. I had learned from this site that sometimes in frustration we lose patience as caregivers and that important knowledge helped me to make his last weeks as comfortable as possible for him. Thank you.
What a beautiful description of 52 years of marriage and what a beautiful smile your husband had...My sister is on this terrible CBD journey..it has only been so far 5 years since diagnosis but her decline since this COVID outbreak is noticeable....Family is everything at a time like this and rallying together and remembering with your daughters will hopefully help you all get through these very 'raw' days..sending hugs....Liz
Liz, yes, and he had that smile until the end of his life. You sound like a very loving sister and I do know that while Robert valued my being at his side, he also delighted in the knowledge of the love of his daughters and their care and concern for him. I wish you and your sister time to share joys and sorrows in days ahead.
May your Robert now rest easy. I am thankful that he was able to spend his last moments with those who loved him best. That’s the very least we can ask for those suffering with these horrible diseases. Please take care of yourself in the days ahead.
Thank you, Cinnylou. As I write I am mindful of those in residential care facilities where the presence of family and friends is very limited, if allowed at all. So much to be grateful for in our family!
Thank you. It still feels so strange that he isn't here, but the peace we feel that he isn't suffering any more is hard to describe; it is just there, like a balm on our wounds and helps to get through each day without him.
My deepest condolences on the loss of your beloved husband. Thank you so much for sharing all the detail of that painful and of course difficult, and yet beautiful passing. What a wonderful accomplishment to be able to look after him at home right up until the moment of his death. I hope that brings you great comfort in the coming years.
14 years is an amazing length of time! I will be very interested to hear when you do get the results back from the mayo clinic as to the certainty of diagnosis. I hope you will share it with us. Meanwhile you must be very very exhausted and depleted now. I hope you have great support around you and will take very good care of yourself.
My heart aches for both of you. Your story brought tears. As a Catholic, I believe he is safe in the Lord's hands. Mother Angelica said that suffering is our ticket to Heaven. He had one of the golden ones. He is looking down on you, and thanking you, running a marathon on the clouds. God Bless You. 14 years is a very long time. You also earned a ticket. Now please rest, knowing you did all you could and that you lived up to your marriage vows. Again, God Bless you!
Boyce, thank you for your encouraging words. The peace I feel about his passing is beyond anything I had hoped for. Several times a day, not surprisingly, I find my myself confronted by the "wrongness" of his not being with me now, but those feelings pass, and the peace is what remains. Today would have been our 52nd wedding anniversary, but I am not sad. I would have been sad to watch him suffer today and feel his presence in a new way.
I am sorry for the loss of someone so important in your life. He tried to fight this horrible disease, but couldn't do it. Now he is in heaven looking down on you with a smile and a thank you for all you did for him.
Jaydee, that is exactly how I feel. If I let myself dwell upon the sadness of his illness -- the unfairness of it all that he couldn't walk, couldn't think, couldn't talk, couldn't eat-- like most of the men his age, it makes me sad, but I don't stay in those moments because they don't take me anywhere except to an embittered past and I stay open to the new peace that does pass understanding and is the strength of each day. Thank you.
I am so sorry to hear that Robert finally lost his battle after putting up such a fight. What a lovely photo with his eyes shining and such a smile. A lovely memory to hold on to. Big hugs to you and your family as you face a completely different new journey. AliBee
Yes, Alibee, that wonderful smile drew me to him at a dance 54 years ago and it is the most salient memory I have of him, even now. I didn't expect the peace that I have felt since he passed, and have a strong sense of his being with me still, in ways that I don't fully understand but don't need to understand. That is the most amazing thing.
This is such sad news I am so sorry for your loss.I hope that you can find clarity as to why your husband had such a rapid decline in the result of the clinic this is such a hideous decease and the fact that it’s Rare doesn’t help I only can hope that in the near future there will be some hope for myself and for others who also have Corticobasal degeneration decease.Thank you for sharing your sad news I truely wish you and your family for some Inner peace in your journey into a very different future take care of you and god bless.❤️
I just read your initial post on this site and I want you to know, as a patient, that my husband lived 14 years after the onset of his symptoms. I remember, as we drove back to our home from the Emory University Neurology Clinic in Atlanta, we joked that it was up to him to "write a new chapter" on CBD and disprove the 6-8 years of lifespan expectation. And he did. He did it with good care, courage and a peaceful, positive attitude. I think that you may have a lot of living to do yet. Thank you for your kind thoughts.
Thank you so much for your response.I too remember how my partner and myself drove home on that day,I new there was something not right you know your own body . Once the shock wore off I decided I was going to beat this hideous decease.I visited a physiotherapist had started exercising went to cancelling my whole world Changed as I threw myself into proving them wrong my journey has made me stronger physically and mentally.During my journey I discovered that my left arm was swinging again and I could was my body better this gave me hope that you can retrain your brain,with positivity and some determination.I will continue on my journey to betting this hideous decease.
I truly wish you well as you travel your way to the day you wake and find the pain has gone and knowing that it’s ok to smile again ❤️
Aslin, you are thoughtful to share your sympathy with me and my family. I am doing reasonably well. It is harder than I imagined it would be, though, and so I just think of each day moving me closer to a time when I can wake without sorrow and live in the peace and joy of memories and confidence in a life that is very different now.
Marilyn, Just read your post. My husband is in year 6 plus a few more months. He is 67 year old He is still very active even though he struggles daily. I feel he has many more years also. There's been times I feel like he has more CBD than PSP symptoms. He has done a advanced brain donation for that reason. Have you heard back yet from the Brain Donation? Take Care
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farewell Sam
Farewell, Rollie
