The best of times—the worst of times. That phrase has never meant more to me than this Christmas season. The family has been together here in Durant, except for my son Wes and his family, and he is making plans to be here soon. I have received a bunch of support from many of Carolyn’s relatives who live in Durant and surrounding areas. I never have to feel alone here, even though I am losing my lover each and every day.
Our daughter Darlene and granddaughter Melissa and husband Rob drove up from Texas to visit for the holiday. Melissa and Rob stayed in a nearby motel (hey, they’re newlyweds, after all) and Darlene stayed in the room with her mother.
The worst came on Christmas Eve morning when I opened the door after arriving at Carolyn’s room, and immediately smelled the odor. Darlene was still sleeping, at least until I came in and woke Carolyn up. She was a mess, to put it mildly. Her clothing was soiled, and the sheets on the bed were soiled all the way through to the mattress cover.
I led Carolyn in to the bathroom to clean her up. She objected a little bit until I told her I loved her and wanted to help, and I wouldn’t tell anybody. Darlene got up and stripped the bed, found clean sheets and made the bed up while I was cleaning up Carolyn in the shower. It wasn’t too much trouble—it gets easier with practice— and the only trouble was that the trash can had been emptied but the plastic liner had not been replaced.
There was a short moment of indecision as I held a really stinky diaper in one hand and the trash basket in the other. I put the diaper in the can and came back later and washed the trash basket in the shower after finding a plastic liner for it. I put the diaper in a plastic shopping bag, tied it off, and carried it to the dumpster out back.
I found a pretty red pajama set and dressed her in soft and fuzzy pajamas for Christmas. I brushed her hair and exclaimed how much better she looked all fixed up, and she smiled a little, I think.
The rest of the day became very busy, as she needed to visit the restroom often, probably as a result of too much candy and sweets. She also became very restless, so I spent a lot of time walking her around the building, or rolling her around in the wheelchair when she looked too wobbly.
In the evening I got her to lay down in bed, and Rob invited us out for dinner at Jalapeño’s Restaurant for a big Mexican dinner. When we got back to the room, I was surprised to find Carolyn still in bed snoring, so I sneaked back out and went home to my room at Joe Wright’s house.
I had a terrible night. My legs kept cramping, probably from all the extra walking I did with Carolyn. When she got tired, I got to push her in the wheelchair. I was just miserable. My whole body ached and itched. I got up and took a hot shower about midnight, but still couldn’t sleep, so I fired up my Mac and searched for information on Alzheimer’s.
The Alzheimer’s Association had an article on the Seven Stages of Alzheimer’s, so I read it to see what I could learn about Carolyn’s condition. I was surprised to find she is in the last and final stage.
Most of the time she is completely incontinent. Guardian hospice has been providing us with adult diapers, which work well most of the time.
She is having more and more trouble swallowing. If she has meat of any kind—chicken, beef or shrimp—it ends up being packed into her mouth and we have to spend several minutes raking it out with a toothbrush.
I have been feeding her yogurt, which she seems to be able to swallow better than hard food. I bought her some Ensure today, but she did not like the flavor of Dark Chocolate, so I will have to try some other flavors, I guess.
She was talking mostly gibberish, but since I have been giving her a little wine in the afternoon, she is using real words, even though they are not always in a sensible sentence. Tonight she surprised me by talking about her “environment.” I asked her what she meant, and she repeated it! Before the dementia came on, she played a mean game of Scrabble!
She also now knows me by name, and she recognized her daughter Darlene. She could do neither a month ago, before the afternoon wine.
I think the falling down is part of the progression, also. They mention how many women fall and break their hips, which leads to a rapid decline and death. She has not broken any bones yet, but the inexplicable falls are coming more often, and we can’t seem to find a cause or cure. I think maybe her neurological networks are blinking out now and then, and either her breathing or heart stops. She passes out, crashes into the floor, and then the heart or lungs restart, with only a low oxygen saturation level to show what happened.
I also read an article on a change in protocol for listing causes of death on death certificates. Many Alzheimer’s patients deaths are being listing as pneumonia, which is true but incomplete when the root cause is Alzheimer’s. If all those who had Alzheimer’s when they died had that listed as the cause of death, the horrendous numbers would be even worse than we know.
I don’t know how many days or weeks she has left, but it seems as if it could be getting close. Then again, she has been unbelievably tough and resilient all her life, and she might surprise us all.
We just continue to keep her comfortable, and give her all the hugs and reassurance we can.
Losing her is hard, but loving her is the easy part.
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