I wish I could feel like Christmas is almost here. Every day I think oh wait far off there are presents to wrap and I'm done with school and we haven't baked anything and those kids I love and I, we are all swallowed by this whirlpool of dementia sucking us down. It takes all our time. I miss regular.
Pandemic aside. And our hot tub broke. So the guy had to come.
Yesterday I was all about talking to the doctor because her meds keep her too sleepy and maybe she could walk better and stand better and do more. Then I change no meds and all night she is scratching the wall and restless no matter what meds I give her. Not impossible like before, just awake. What is she scratching for, the texture of the wall? Lately she's been grabbing every doorframe when we pass by, grabbing every chair, gripping for dear life. I was putting her to bed tonight and trying to get her in bed with Emma and I said oh she hates me. And we're all sitting on the bed in a row, me, mom, Emma, and Emma says. She doesn't hate you.
We sit there with what's left of my mom, unraveled but still in her original wrapper. She's right.
I'm telling you, when you are doing everything for someone it is still not enough. I was walking around Blowes with Nathan and thinking why don't they sell stuff that can bring your mom back.
Anyway I did talk to the doctor after making my mom walk from her house all the way to the pool to sit down on the swinging bench, and it was far and then she was hot but not complaining. The doctor said alot of things and we switched around some dosages but mostly I said I don't know if I'm making her do too much but shouldn't she walk? Shouldn't she be awake? Is it the medicine?
He said when a person has no activities they seek out, only the activities you make them do -- he says...we can't rehab a terminal person. We were kind of laughing because I can't stop, a daughter will not stop. Emma and I helped her from the pool to the house, making her walk. She does not know how to stand up, it is too hard. She is bent way over and we're holding either armpit and today she can't walk on her right foot, only on her tippy toe today for some reason. Getting her wrestled onto the regular bathroom toilet might be ending soon. It's too hard for her. I think we did the last shower the other day. Just the logistics of the moving the body in small places is becoming impossible.
Her body is dragging her down. The body she used with zest. Sometimes too loudly, in the bedroom above me. Her body she exercised and danced up until the very last possible very last second. I am still dragging her up and she is saying please. Wait. It is hurting.
I want her to use every last inch of her time, space and earth suit. I don't want her to not get every bit. I was giving her root beer in bed yesterday feeling like I'm fighting off this death monster and I suddenly thought of Dirk, when Nathan was 12, and how we went to see him in hospice, and he was dying of a bad bone marrow transplant, but he was in good spirits, and he said whaddya want Nathan? It was 10 in the morning and they decided on chocolate chip cookies and diet root beer. I got a flash of Dirk's sweet happy face. Dirk is already over there. He's waving her in. Will is there. Her parents are there.
The nurse who was covered in two masks and a clear hockey face shield said she was with a patient the other day who had dementia and diabetes and there were clothes set out on the table and the family said the patient had set them out and said 'they're coming to get me. I'm leaving.' And that night she died. The nurse said well. they came to get her.
How are you doing, the nurse asked. I almost started crying. It's too big to explain. I told her how I visited my mom at her death hotel where she worked as a nurse and how working in a nursing home with a cheerful spirit, on her tiny feet with her little nurse uniform. She showed me how to love people up close, right until the end. She didn't know it, but was showing me the way to care for her, right now. Years later.
My friend told me he was sorry I had to be here at the end, the demise, though he knew I wouldn't want to be any other place. I said it's an honor. Like being the captain of the Titanic. The ship still sunk, but at least I was the captain.
The walking on tippy toe and having Emma under her other arm, and it's almost Christmas, and he said Terminal. I know I am doing too much and I have to listen to her and honor her wishes. I have to stop dragging and let her be peaceful as she can. If she could walk she would. This is the next stage. She swept the other day and made it from the porch to the table and had to sit down. She's done sweeping. She's done straightening. She's done cooking. She's done cleaning. She's still eating. She's still laughing at her dog. She still smiles at us. She still thinks farts are funny. I will try and let her be the best I can but the fighting is so hard to cease. I guess everyone has to make peace with their own battle for life and caring for others that is just raging in there.
Tomorrow I'm gonna try and do some things with the kids that involve enjoying Christmas. I will try and enjoy the horror and the pity, and listen to the Ink Spots which we've been doing at night and feeling like I'm happily inside a Woody Allen movie as I scratch her head to sleep. I will remember the other living, the youngsters here, and all my whole family, all of us alive and our Christmas now.
Blazing Saddles, maybe. Farts ARE funny.
The hot tub got fixed. It felt like forever, the days it was gone. All our bodies are so sore. One whirlpool reversed. It is possible to fix some things.
