Alzheimer's education

This week has been another session of continuing education. It seems the more you learn, the more you realize how much more you need to learn.

Because of friends on Facebook, I have learned a lot about adult continence underwear. I got a link to a different brand, which is wider, has “wings” to unfold for better absorption on the sides, and has tapes on the sides so they can be removed and replaced.

Also, I found out that there is a technique for “prepping” the underwear to address the problems I have been having. I was directed to a video on YouTube on the steps to be taken before putting the diaper on the person.

When they come in the package, they are folded in a way that puts a deep crease across the bottom between the legs, right where you don’t want a crease. So the first thing when you remove them from the package is to stretch them front to back to remove that crosswise crease. Then, with the diaper held from front to back, fold it lengthwise and crease it that way to make a trough down the middle. Then when you put it on, it is less likely to leak out of one leg or the other.

Earlier in the week Carolyn had a bruise on her left cheek that had us baffled for a while. She also had a small abrasion on her left elbow and the old wound, which had almost healed on her left knee, was scuffed open again. I was sure her eye was going to look black soon, but it didn’t happen. 

After considering several possible scenarios, we settled on falling out of bed at night, and brushing against the steel angle iron frame of the bed. No major damage occurred because the bed was very low to the floor, and the floor was padded with tumbling mats.

When I put her to bed that night, I slid her over, almost against the wall to make it harder to roll out of bed. She no longer sleeps only on her back. We regularly find her laying on her side now, so we don’t have to elevate her feet to avoid pressure sores. I also pulled the mattress over the side slightly to make sure she could not hit metal if she did roll out onto the mats.

Also, the next day Guardian Hospice presented us with a special mattress cover with foam blocks on both sides to inhibit rolling over the edge. They are not a restraint, I guess, because they do not restrain her, they just push back a little if she rolls over to them. So far so good, and her wounds are healing up nicely.

She is still adjusting to the new drug schedule, with some days still sleepy, and some days awake and wired. She spent all day Thursday awake and talking, restless and relentless. I almost wished we hadn’t changed her drugs. Almost, but not really! I like having her back, even if it does entail a lot more work for me. I must have “patrolled the perimeter” with her in the wheelchair at least a dozen times. She was not happy for long just “guarding the front gate.”

Today, Friday, she was asleep when I got to her room about 9:00 AM and the CNA told me they couldn’t get her awake for breakfast, even though they transferred her to her wheelchair and put her at the table. She was too asleep to feed herself, and too asleep to chew and swallow when they tried to feed her. So they put her back in bed.

I tried opening the shades to let the sunshine in, pulling the covers back to cool her off a bit, and I turned up the music on the radio. I forgot to say that when I got there, the Guardian hospice nurses were sitting on the couch discussing what to do. They were scheduled to give her a shower and change her clothes, but they could not get her awake, either.

They had already called their boss nurse, and she said she would come out and check for herself. I told them I would be staying with her and watching to see if she woke up. I promised that if she woke up and they were still on the premises, I’d give them a call. 

She was still sleeping when the boss arrived. She watched and listened to the breathing, took some vitals readings, and decided because of the mild apnea she was hearing that we would put a little oxygen to her through a cannula from a concentrator. Her saturation level was in the high nineties immediately.

Our daughter Darlene called to let me know she was coming to see her mother, so I told her she was still sleeping, but might wake up. 

At about 4:00 PM I noticed it was quiet over where Carolyn was, so I went  to see. She was looking at me through open eyes. I exclaimed, “You’re awake!” and she smiled at me. What a great feeling!

I got her up and into the wheelchair and took her to the bathroom to clean her up and change her. As I held her with one arm in front of the toilet, and lowered her trousers with the other hand, the diaper slid down too. Must have weighed about ten pounds - wettest one I’ve ever changed. But no leaks! That diaper prep actually works.

Darlene came in as I was finishing dressing Carolyn, and we took her out to the front lobby for just a few minutes, until time for dinner. Having missed both breakfast and lunch, she was hungry. She ate a large serving of egg salad, spooned up about half of the broccoli/cheese soup, and ate all of the fruit cup for dessert.

After dinner we returned to the front lobby, where people gather after dinner to talk and socialize. She began to make repetitious sounds over and over, making no sense at all, with one arm shaking with tremors. After a few minutes the tremors stopped and she started talking using real words in broken phrases that made no sense, either. It was obvious that she was talking to people that we could not see. All I could do was hold her hands and tell her we were with her and it was going to be all right.

Loss of memory is only a small part of the neurological devastation of Alzheimer’s. 

At one point she broke into fearful sobs, and all I could do was hug her close and tell her it’s OK. The tears running down my cheeks belie my words, but I no longer worry too much about absolute truth. I am more concerned with consoling her and trying to make this awful disease as easy as possible.

I kept thinking about the graffiti found on the wall of a gas chamber at a Nazi death camp - “If I see God, he will have to ask my forgiveness.”