Or, more accurately, Burt’s last 4 days
Burt’s temperature was 102.1. I gave him some water which he sputtered over, coughing but swallowing it.
I put a cold wet papertowel on his head. It dropped to 99.1. His arms are shaking. His lips are shaking. He opens his eyes and puts his lips on the bottle to drink. His lips tremble. No words or recognition.
I feel I am actively losing him. I apologized to him this morning for every cross word I ever uttered to him. Ever. He may be actively dying. We may need hospice.
Burt had slept all weekend. No food since a few teaspoons on Sat
He opens his eyes but does not complain nor connect. I think this is the end. I wish him an easy passage. He used to love holding hands. He doesn’t squeeze my hand anymore; his aide, our friend, noticed that when she took his hand first.
Hospice was to come this afternoon to evaluate and set up service. His aide was begging Burt to complain or curse her out!
I am prepared but not ready. Or ready but not prepared. Or neither.
I thought I had been losing him little by little as he fell into his own world. Now it feels as if he were truly gone. And that was before he drew his last breath.
Then he was still here, breathing with a faint wheeze or wimper. Not in pain, just air passing laboriously through. I think of him as brave in this last stage. He was often anxious and scared but he always owned those feelings (or in a macho world some would say failings.)
He is showing courage and again I wish him a safe and easy passage.
His difficult breathing has brought my inner spiritualism to the fore. I repeatedly tell him I love him as if each breath were speaking a new truth to me.
I told him I hadn’t had the chance to say goodbye. Tears well as I write that.
Perhaps the truth is that I never wanted or intended to say goodbye. I have given him my apologies for a sharp tongue but I know he knew I had a soft heart.
That heart is breaking now as he slips into a skeletal form from days of fasting. His heart and soul seem absorbed in the process of inhaling and exhaling.
He takes each breath with a fierce concentration like it is all he can think of and can not be distracted.
I will not sit vigil over him but my thoughts will be at his bedside. I will go about doing my usual exercises, at the gym, on the street. I do want to be with him at the end. As his world unwinds, and the immense loss of him tears at me, I want to be able to recall his last moments as minutely as I can recall some of his best.
I honor the full life of this man, the one I love so wholeheartedly. The man I know is the love of my life. And lucky I am at that.
I wrote to those his life had touched: I wanted to let you know. We’re going on hospice this week. Another sharp decline over the weekend. All sleep no eat or drink. He seems comfortable but is not responsive on any level. I am not ready. I am not prepared. I knew it would happen but….
And then on the morning of Tuesday, February 25th, he took his last breath.
The EMTs pronounced at 11:29 a.m. Many long hours later, his wonderful aide and I are still waiting for the last batch of officials to give us the death certificate.
this is our life 
Oh no. As I was reading today’s post I worried that it would be soon, but your last words hit me hard. To say I am so sorry for that he has passed is inadequate.
I am feeling your loss personally because I have been reading you work over the last year, when my husband was diagnosed with LBD. You have become a friend in many ways because of your generosity in letting us see. To be real, I also feel your loss because I expect it will be my loss as well someday. I
have no idea where we are in the journey. But your honesty and beautiful writing have been helping me immensely as we walk down this path.
I thank you and Burt from the bottom of my heart.
There is a hug coming up virtually to you – and Burt — from Falls Church, VA.
Julie Galdo
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Julie, it has been a long hard journey. I did not expect it to end with this post either. Although the signs were there. Thank you for following along.
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Julia, It’s taken me 6 months to answer your lovely note. I think of your “Oh no” often and appreciate your message. Thank you.
Tamara
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Oh Tamara, I have been reading your blogs for a while now as your journey with your Burt was on the same trajectory as my journey with my husband Tom (diagnosed with LBD) in 2019 so it was with such great sadness that I read of Burt’s death. Your words on your Blog were so thoughtful and your care of Burt unwavering. I am younger than you and I am amazed how much love you showed your husband over the long Lewy Body Journey and how you kept him at home for the whole time of his disease. Living in a New York appartment with no doubt all its idosincricies makes me in awe at your fortitude in keeping Burt at home till the end of his journey. Well done and much love to you from another Lewy Body wife. xxx
Patricia Graham
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Patricia, it was my privilege to have Burt in my life and to have the opportunity to share my love with him. It is a punishingly hard journey. Good luck (and love) as you continue yours. Tamara
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Tamara, I’m so sorry to hear about Burt’s passing. He lived a full and meaningful life, connecting with those around him even in his most challenging years. Wishing you comfort as you process this loss. Thinking of you and sending my deepest condolences.
With a heavy heart & prayers, Pasha
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Pasha, Burt loved talking to you on the 17th floor. You are part of a fond memory!
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Tamara, my friend,
Your love for Burt, your beloved husband, ran deep and wide, it was palpable.
Thank you for sharing Burt with us and allowing us to see and know him and his big personality.
You were a quintessential “in sick and in health” devoted wife.
GOD joined you and Burt and Burt experienced the best early, middle and later life because of your love for him.
Indeed, you are a gem 💎of a woman.
It was my pleasure to meet and chat with Burt.
It continues to be my pleasure to know you.
Sending lovely and kind you lots of:
love❤️
light🌞
hugs🥰
Consciously take deep breaths.
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Breathing. Deep.
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“In sickness and in health”
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