So many emotions. We’ve completed the re-entry to hospice. My daughter flew in and has managed all of the details, given so much loving care to both of us. I had to make her go home to her husband, her two year old son, and her consuming career. Now a dear friend is with me. It’s early hours, still dark. I’m so tired.
Larry’s been sleeping or half-sleeping most of the day, some hours in bed, many hours in his wheelchair. He’s drinking a lot, eating almost nothing. He seems calm, only in pain when we move him, and can respond with head nods or finger raises.
Thursday night he had a horrible breathing/gasping/gurgling episode so we were up for hours, then I was up for a few more hours, unable to sleep. Somehow, my anger at hospice started to work its way from the forefront into the background and I felt acceptance seeped into me.
In those dark hours I started to feel part of the web of life, and death. To accept him gradually, slowly leaving his body, over years, now over weeks, days, and hours. I held his hand, I meditated with him. I tried to say the Lord’s Prayer but my muddled brain couldn’t remember the order, so I sang it to him instead – the song a memory from my high school choir years.
The process we’re going through felt bigger than both of us. I felt peaceful, surrounded by the love of our “community of caring” – all the family and friends, old and new, that were supporting us in their hearts and their actions. People reaching out by text, phone, cards, or comments on this blog, people showing up at our door with food. A neighbor I don’t know all that well came over with a list of all the days and times this week she could sit with Larry if I wanted to get out.
My hand made wedding ring broke this week. Such irony. It was so tight I had to have it cut off. That felt like a horrible symbolism, seeing the tool cut my rings in half and I cried. But this wonderful local jeweler fixed it overnight and they are back on my finger, looking all shined up and beautiful.
Many people with Multiple System Atrophy die sudden deaths, their breathing just stops. I used to think that would be a blessing but now I’m not so sure. If things continue as they are, this will be a gentle death for him, and yet not sudden – we get to say “I love you,” many times over.
And of course, he many rally for awhile and we’ll go through this process again. And perhaps again. Multiple System Atrophy is such a cruel disease!!!!!
His needs have increased so much in just this week. He’s thirsty. He reaches for the cup or tries to roll his wheelchair toward where it sits on the counter. But he can’t drink alone and needs to be given sips of water. Sometimes he can sip through a straw. Sometimes he needs the cup held to his lips. He needs his position changed in his wheelchair. He needs his wound bandages changed. He’s thirsty and wants sips of orange juice. He needs medicine. He wants something but can’t tell us. He’s thirsty. He’s thirsty.
One day a symptom gets better. Another day, there’s a new symptom. Where are we on this journey? No one knows. There is no knowing. There is no control. Only his needs.
At times I feel such love and such sadness. When someone arrives that hasn’t seen him recently, I see his decline with their new eyes, and am almost stunned by it and want to cry. Other times, I’m angry at him for being so needy. Can’t I just eat my own dinner, instead of giving him sip after sip of water? I’m tired! But he keeps reaching for the cup.
So many emotions. And then there’s a moment in the day where I see the faint glimmer of a smile, the tiny mischief in his eyes as something absurd happens.
I love you, Larry.