Wednesday, August 8, 2018

Looking Through the Cloud of Dementia to Find My Sweetheart

I haven't talked about the financial aspect of Jim's care in quite a while. Regular readers might remember that with the help of an Elder Law firm I was able to legally preserve some of my assets. I believe the government allows this so that spouses are not left impoverished. It took many months for a final decision from the government, but I received word recently that the application was approved. It still is expensive; my responsibility is $45,000/year. Medicaid picks up the balance. Private pay would have been $144,000/year. This amount would whittle down any retirement savings pretty quickly.

As I've mentioned before, Jim is incontinent. But as with other skills robbed by dementia, it usually is not an all or nothing; quite often it is intermittent with varying degrees of loss. He is completely incontinent of bowel. When he urinates, sometimes it is in his pull-up, sometimes in a wastebasket or sink, and recently it has been on his bed, his floor, on the door, in another person's room, closet etc. He knows that he has to go, but he has lost the ability to figure out where to relieve himself.

If I happen to be near him and sense what is about to happen, I can quickly grab a urinal, hold it for him and he willingly uses it. But obviously this covers only the portion of the day that I am there. His favorite New Balance sneakers were taking a beating. They were getting wet in the process, and I just couldn't keep up with keeping him in clean, dry sneakers.

Amazon to the rescue! I found these water shoes and ordered a pair. They're intended to be worn on the beach and/or in the water. They are light weight and easy to keep clean. I now have two pair. When one pair gets soiled, I hose it down in the shower; they dry pretty quickly. Problem solved!

I struggle with loneliness at times. Usually it occurs in the evening when I am home alone. I miss him so much. I miss the old Jim. The Jim of many years ago. The guy who made me laugh every day. The guy I could count on to know when I needed a little extra TLC or support. The thoughtful guy who turned every birthday and anniversary into a special celebration. Spoiled me rotten with thoughtful gifts, travels to new adventures, and snuggled close with an affection that left me knowing how lucky I was to have him in my life.

When life gave us one of those "little surprises" that we didn't count on, we could lean into each other for support, knowing that we would always be there for each other. God I miss him!

Dr. M. reminds me that it's OK to have and express these feelings. I can be hard on myself, thinking that I should be stronger and not give in to these feelings. But she reminds me that the feelings are real, and that it's OK, and I have a safe haven with her to express these feelings and work my way through. So that is what I do. I'm so grateful to have her in my life. As she says I "don't have to go through this journey alone". That is so comforting.

I also try hard to focus on the fact that I still have Jim. And I look hard every day to still find in him the essence of who he is. And indeed, it is still there.

This morning when I arrived, he was in his room, sitting on the edge of his bed, pretty much in a daze. He didn't have much of a response at all when I saw him. I discovered that he had not eaten breakfast (not willing to come to the table). I quickly found some fresh fruit, donuts, and lots of apple juice (they keep a great supply of beverages and snacks that are always available). He ate, and then drank a lot. I've noticed that he needs some encouragement to drink. He's obviously thirsty, because when I hand him the glass he chugs it right down. But yet he is losing the wherewithal to reach for the glass of beverage without a reminder. He drank 32 ounces of apple juice!

After, I helped him shower, shave, clean clothes and teeth brushed. He seemed to come around and was more responsive to my interactions.

I look for his beautiful brown eyes lighting up with recognition. I look for that beautiful smile he has when he looks at me. And I wait for that tender touch when he reaches for my hand or when he kisses me. That's when it all feels right again.

I've written before how he has very little speech. But yet there is still some comprehension. Hard to say how much, but he understands best if there are fewer distractions and not too much information at once.

Last weekend we were sitting in the open courtyard on a beautiful summer's morning. (The memory care unit is built around the courtyard.) We were pretty much by ourselves, so it was pretty quiet. I started talking about some memories of things we had done in the past. It was heartwarming to see his face light up with recognition when I talked about something he clearly remembered.

Jim has always had a fascination with airplanes. He actually took flying lessons when he was quite young, before we knew each other. We used to enjoy going to air shows together. I brought up the "Blue Devils" US military jet pilots. He immediately corrected me and said quietly "Blue Angels". Wow. Kind of blew me away.

Lisa, my hairdresser, has been coming every 4 weeks to cut Jim's hair. She gives him the best haircut ever, and he just loves her. When she came last week, as soon as Jim saw her his eyes lit up and he had the sweetest smile for her. Hugs were exchanged, and I thought about how lucky I am that Jim has all these caring, loving people in his life.

He has the same kind of reaction for Corrina, one of the activity leaders for the memory care unit. They adore each other. The unit is blessed with good hearted souls, willing to give of themselves for the most vulnerable among us. So very, very grateful.

Corrina brought in her dog the other day. Jim has always loved dogs! I have the sweetest picture of Jim and Corrina's dog snuggling close. So sweet! Once again, to see that spark in his eye, his whole body responding as he was bonding with man's best friend.

I recently read some of my older posts, back when things were so difficult for me and Jim. I'm reminded that the support I received from all of you really helped to see me through some very difficult times. I appreciate each one of you ❤️. Thanks for stopping by.