My Best Christmas Gift

As we approach the end of this Christmas season and the beginning of a new year, I am feeling grateful for many things. Most of all, I am grateful that Kate is still with me and that we continue to experience “Happy Moments” together. They come and go as she experiences different moods throughout the day, but I come to expect them at some point every day. Christmas Day was like that.

She was still asleep when the caregiver arrived at 11:00. After getting her up and ready for our Christmas buffet at 1:00, she was still quiet. She remained that way for the balance of the day. I call this her “neutral” time because she expresses little emotion.

I have also grown accustomed to very nice evenings with her after the caregiver leaves at 7:00. I wasn’t sure that night would be one of them, but I got in bed with her right after my shower and turned on a YouTube video of “Christmas in Vienna” from 2008. We attended that very concert. That led me to reminisce with Kate, and I extended that to include many other experiences we have had during the Christmas season as well as other special times throughout our marriage.

As I talked, Kate perked up and began to smile. This continued for almost an hour until it was time to call it a day. She never said a word during this time, but her facial expressions conveyed her happiness and her love. Most of the day hadn’t been that special, but it ended beautifully. Her smile, facial expressions, and holding her hand made all the difference. It was a beautiful way to end another Christmas Day together. That was my best Christmas gift.

Two nights later and again last night, we had very similar evenings. I know moments like these may seem trivial, but they mean the world to me at this stage of her Alzheimer’s. They are part of why I say Kate is my greatest source of stress relief.

Something Funny

Among the many things for which I am grateful is the support and encouragement I receive from my family and friends. One of those friends called me Sunday morning.

As noted in an earlier post, I got my first hearing aids about a month ago. Since then, I’ve been learning how to use the app that came with them. So far, things have gone well. One of the things I like is the connection of phone calls to my hearing aids. Generally, it works like a charm, but I encountered a problem with my friend’s call.

When the call came in, I was listening to music. I didn’t think it was too loud, but I couldn’t hear my friend very well. At first, I thought it was because the music was coming from my phone, and the phone couldn’t handle two audio signals simultaneously. Then I realized that the music was really coming through my audio speakers, not my phone.

As my friend began talking, I tried to determine what I could do to hear him better. I opened the hearing aid app on my phone and turned up the volume from 1 (the lowest except for zero) to 15 (the highest). It helped, but it also increased the sound of the moving air coming from our apartment’s heating and cooling system.

I picked up the phone with my left hand and raised the phone to my ear. I could hear him better. I thought my friend’s voice must be coming from the phone and not my hearing aids. Then I tried a second time with my right hand, and I couldn’t hear him any better.

I thought about asking my friend if he would hang up and initiate another call, but I didn’t want to break the flow of the conversation even though I was missing much of what he said.

The noise of the airflow was making it difficult to hear, so I thought of a place where the air wasn’t moving. Ah hah, a closet. I went to the closet in our guest bedroom that is loaded with stuff I didn’t have room for in any other place. That included an old Hoyer lift to get Kate in and out of bed or her wheelchair. I purchased a new one about a year ago and stored the old one.

I walked into the closet and closed the door. I forgot to turn on the light, but I remained in the dark closet with the rest of the “stuff”.

I found that I could hear my friend pretty well, and we continued the conversation which lasted 40 minutes. As we were winding down to say goodbye, I rested both of my forearms on the arm of the lift that is the height of my shoulders. When I did that, my friend’s voice was much louder than at any other time in our call. I looked to my left where the sound was loudest. It was coming from my watch. In other words, I had accidentally answered the phone from my watch; therefore, our entire conversation had been via my watch. I told my friend, and we ended our call with a good laugh. A nice way to start the day.

Sources of Stress in My Life as a Caregiver

I participate in three different support groups for caregivers. In virtually every one of the meetings, people talk about the various things they find stressful.

Most of the conversations in the groups with which I am involved deal with the frustrations caused by their loved one’s behavior. One of the most common is repeating the same questions over and over. Another is the loved ones’ denial of the diagnosis and the refusal to cooperate when the time comes to issues like giving up the keys to the car, needing a walker, or willingness to accept a caregiver. The frequency with which the others are mentioned varies a good bit with the individual situations and the stage of the dementia.

At present, I believe my greatest source of stress relates to Kate’s in-home care. I emphasize “present time” because I depend more heavily on paid help now that Kate requires total care. When caregivers are sick or have other personal issues that prevent them from being on the job, it is stressful for me.

These situations have always occurred periodically since I first engaged paid help six years ago in September 2017. In the beginning, this was a minor issue. For the first three years and two months, the caregivers’ responsibility was simply to be a companion for Kate, and we had help only three days a week for four hours a day. If a caregiver was late or unable to come, it was not a big problem.

Life is very different now. For almost three years, Kate has required Total Care. Without help, I can’t get her dressed, out of bed, and into her wheelchair. I need help more than ever.

That leads me to another problem – getting someone who can come regularly. For the past two-and-a-half years, we have been fortunate to have two different people who were with us for eight hours a day Monday through Friday. One of them was with us for a year and a half. The other left after a year. To cover the weekends, We have had two people who alternate weekends. One of those has been with us two years this month, the other person has been with us for close to a year.

Four weeks ago, our latest Monday through Friday caregiver developed a health issue of her own and had to resign. The agency that provides our caregivers has had trouble finding people who would commit to a full 8-hour shift. As a result, they have divided the day into two shifts of 3-5 hours. Since then, we have had 28 new caregivers. On top of that, one of my regular weekend people called two Saturdays ago to say she couldn’t come. Another new person came to take her place. That makes 29 new people in four weeks.

I am working hard to maintain a cool head, but I have to admit that it has been quite stressful.