Farewell, Sweet Prince: Robert went to the... - PSP Association

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Farewell, Sweet Prince

Marilyn_cbd12
Marilyn_cbd12

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

76 Replies
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I am so sorry for your loss, the suffering your husband experienced. This disease is horrendous and cruel.

The photo is lovely xx

Thank you, Northstar. Effective treatments can't come soon enough. I wish that all neurodegeneratives received more attention and more research funding.

Marilyn

Sending big hug and much love

Lots of love

Anne

Marilyn_cbd12
Marilyn_cbd12 in reply to Heady

Feeling the hugs now...

Marilyn

Big hugs

Thanks, fishponds, hugs help. About a year ago, I realized that the daily hugs from him were something I would miss very much.

Marilyn

Sorry to hear. Larry said to me a few months before he died he wished he would get better. I told him I wished he would too.

Yes, Jeff, I remember Larry's last weeks and they were difficult.

Marilyn

Sending gentle hugs... Granni B

Granni B, thanks for the hugs. I do feel very supported right now and it is powerful.

Marilyn

I am so glad you have supportive people. Sending more hugs... Granni B

Marilyn l forgot to say the photo you posted is so lovely. Love surrounds you both! Hugs... Granni B

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."

Marilyn

That is a good question Marilyn. I bet a small percentage of them really do. Hugs... Granni B

The photo is lovely you are amazing 14 years that’s a very long time hugs to you and your family 💞💞xx

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.

Marilyn

Sounds lovely he was a very lucky man to have you 💞

So sorry for the loss of your dear husband and sending love to you and your family.

Dx

Marilyn_cbd12
Marilyn_cbd12 in reply to DenB

Den, your sympathy and kind wishes are appreciated. We all carry a heavy load, don't we?

Marilyn

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.

Much love

Juliet

Marilyn_cbd12
Marilyn_cbd12 in reply to JCRy

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.

Marilyn

I think the honesty we all share with each other is helpful in so many ways. Hugs... Granni B

Marilyn,

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.

Richard x

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.

Marilyn

You really are a wonderful person. And you definitely deserve a rest.

Richard

It’s very heartbreaking!!

I’m so sorry for your loss!!

May He Rest In Peace!!

Marilyn_cbd12
Marilyn_cbd12 in reply to Sam_S

Thank you, Sam. These are heart-breaking conditions, aren't they? I do feel peace now, though, and that is a gift.

Marilyn

Sam_S
Sam_S in reply to Marilyn_cbd12

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 !

Sam

A very moving testimony .... I’m so sorry

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!

Marilyn

That’s so lovely .. my husband was the same ... buddy holly, Eddie Cochran , Mozart, Beethoven ... you name it 🥰

So very sorry for your loss. Hugs and prayers.

Tim

Marilyn_cbd12
Marilyn_cbd12 in reply to daddyt

Tim, thank you. I think that we on this site are all "profiles in courage."

Marilyn

daddyt
daddyt in reply to Marilyn_cbd12

Blessings and may peace be with you on the road ahead. I know how difficult it can be.

Tim x

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.

Marilyn

So sorry for your loss. Sending warm hugs to you.

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

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.

So deeply sorry for your loss. Keep the special, beautiful memories in your heart and mind.

God Bless.

I am so sorry for your loss. Be kind to yourself as the grieving is hard too. Sending lots of love

Sarahxxx

Sorry I mixed messages. Yes, I am being kind to myself and I am seeing how important that is to healing. I appreciate your support.

Marilyn

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.

Marilyn

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

Dear Nanny,

Lots of good counsel in your reply and so much to think about. Thank you for your wise and generous words.

Marilyn

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.

Dear Green,

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.

Marilyn

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

Marilyn_cbd12
Marilyn_cbd12 in reply to Skye04

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.

Marilyn

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!

Marilyn

Praying for you and your family in this difficult time.

Marilyn_cbd12
Marilyn_cbd12 in reply to Y2U4

Thank you. Those prayers are lifting me up.

Marilyn

I’m sorry for your loss. It sounds like you gave him the best final moments and send off he could wish for. Lovely picture X

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.

Marilyn

So very sorry for your loss — surround you with angels of strength and comfort - Kim

Thank you, Kim. The angels arrived shortly after he passed and have been good house guests...

Marilyn

Dear Marilyn,

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.

All the best

Anne G.

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.

Marilyn

Peace and Love to you and your family. Kathy

Marilyn_cbd12
Marilyn_cbd12 in reply to kandk

Your sympathy and reaching out is appreciated. The support is helpful and powerful, for all of us.

Marilyn

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.

Many blessings to you.

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.

Marilyn

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.

Marilyn

I don't think that you have to understand it, just hold that feeling in your heart xxx No wonder you were drawn to that smile X

Sorry to hear.

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.❤️

Brontie,

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.

Marilyn

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 ❤️

May he rest in peace🙏 Big hugs to you and your family

Marilyn_cbd12
Marilyn_cbd12 in reply to Aslin

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

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

No, I have not heard yet. I understand that it can take 3+ months to hear back.

Good luck with your challenges.

Marilyn

I'm sure you will share with us the results. You Take Care

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