After taking a train straight down almost all the way through the entire country, I sit by the bedside of my mother on this mothers’ day. Many people wonder how much sense it makes to spend a full week of precious vacation time with one’s mother in the last throws of Alzheimer’s disease. But I don’t care. I only care for my mother. I know nothing about the disease other than what I have observed on my annual visits. I am very glad that the angry phase is over, and the scared one. And I am a little sad that she almost exclusively sleeps now, but I don’t blame her, of course. In fact most occupants of the beautiful oldage home here seem to spend a lot of time either waiting or sleeping. Every year I spend eight or ten hours a day, for a week or two, hanging out here. Every year some inhabitants have disappeared, new ones have taken their place. It is an interesting dance, one worth observing.
My mother’s face keeps changing. Due to previously undetected dental infections, and apparently some spasms that come with the illness, all her teeth had to be pulled. This has significantly changed her face. And since she spends most of her time now with her eyes turned to the ceiling, or sleeping in her wheelchair, her mouth has become a hole. I had never thought of it that way, but that is what it is.
Even a year ago, there was more presence. I would tell her stories all day, which she may or may not have understood, but she heard them. Her eyes would move slightly at some words. Or I would take her in the wheelchair all over the place, and she seemed to delight in simple things like grocery store shelves, or children in a playground: a raising of eyebrows, a sparkle in her eye, leftovers of a smile. This year, even those small signs are absent. It is a very interesting exercise for me: to be completely unable to help or comfort in any way. At times she moans, and her face tells me that she is in pain, but I don’t know where or how I could help. I gently massage different parts of her body, closely observing her face to see if anything might help, but usually nothing seems to alleviate her suffering. So many ways of suffering. I speak and sing to her, I take her for walks and feed her, and I touch her a lot. But really, the only thing left to do is being genuine and unafraid, simply present.
Thank You D for this beautiful post. I am glad you have this time with your mother. Life is a mystery, and as you say – ‘to be present’ with her is a strange gift. I only had a week with my mom after her stroke. I don’t know how much of what i knew as the everyday person was there, and after resisting for a few days I finally realised that knowing was unimportant – a distraction really.
I’m sure the other residents of the home are happy for your grace and beauty and the love you bring.
Thank you, Mary-Colin.
“knowing is not important” is a really great way to put it!
D.
Dear Dorothee,
I just read your notes about your last visit with you poor mother who has Alzheimer’s and want to tell you what a good daughter you are, so loving and courageous. You are there for her now, as she was there, I’m sure, for you when you were growing up. I can tell that you really care for her. The thing with people like your Mom, as I understand it, is that they have feelings that are as real to them as are our own feelings to us. And, after all, what are more important than feelings? I’m quite certain your Mom felt assured and comforted by your presence with her. I can tell you that what you are doing for your Mom is making you a better person, a stronger and more complete person.
My very warmest best wishes to you,
Richard
Thanks, Richard.
I appreciate your kind words. Yesterday, she was very present for a couple of hours, which -I must admit- a treat.
Dorothée
Hi D Thank you for sending me your blog entry about your last visit to your mother. Ones thoughts are ‘ one day I may be in that bed’. Which should be a constant thought to remind us to live as presently as possible. It’s such a short journey. Your mother is gradually drifting from her body and I hope the final stage is quiet and gentle.
Hello my sweet D…
Your words…their imagery…very moving. My mother is just a few steps behind your mom. My brother was visting yesterday for Mother’s Day. He asked: “Who am I?” She said: “Don’t ask me that.”
She knows that she loves us, that we are important to her….she just doesn’t know our names….A small thing in the big scheme of it.
sending you my love, Mary
Thanks a lot, Mary, so sweet.
I am so sorry to hear that you are going though a similar thing with your mom!
Yes, for sure: ‘who am I’ … most of the time, I don’t know the answer, myself! So why bother asking a person who is having a hard time figuring out where up and down is. So I agree: remembering a name really is such a small thing.
Much love!
Dorothée