Dementia Diary

When you care for someone with dementia, you must be their mind, their will, their compass. You must mediate the world to them and them to the world. It is wearisome, mentally and physically and spiritually. You need the Holy Spirit so badly.

The Alzheimer's Association of Denver has regular events for mentally distressed souls. The first one I went to did not suit Becky. I write about it in Walking through Twilight. But even systematic pessimists try again...sometimes. It was "musical theater." I had no idea what that meant. It meant two chirpy ladies getting people to laugh, move, and do silly things. Most everyone joined in and perhaps forgot about their plights. I kept looking at Becky. She enjoyed singing a few songs from musicals at first, but when participation started, she went mostly blank, but partly annoyed. I was annoyed, too--but not blank. I was sad. We walked left after half an hour. I said several things that made Becky laugh. She did not laugh at the event, neither was she really disgusted--something she used to be quite good at. Becky had and has (to some extent) a refined and unique taste for life. That hindered her from enjoying many things, but it also allowed for the appreciation

We may be near a turning point from misery unto new misery. I am investigating memory care facilities near our home. The better ones don't take Medicare, which I may need within a few years, given the vertiginous costs involved. The more quickly Becky moves toward needing more help than we can provide, the more I realize that her most meaningful times are with me, her husband of 33 years. We have a long and deep history, from which I can call upon for laughs and comments. Of course, not all of it is there for Becky. I can also dip into the deep well of sardonic humor we have amassed. But that would mostly disappear if Becky has to leave. She may have kind care, but no one can reach into her memory and illicit humor the way I can. And she is not going to rest in anyone else's arms, either. These are my troubles, my worried mind.

Those of us who love dogs have experienced being with a dog who wants something, but cannot express it in our terms. Sunny sometimes looks at me intently, but he doesn't need food, doesn't need to go outside. I don't know what he needs because he cannot tell me in a precise way. I have to guess or give up. Tonight, Becky and I were relaxing, and Sunny was relaxing next to us. Then he got up and sat down in front of us with those imploring eyes, punctuating his presen ce with little squeaks of longing and sadness. I said to Becky, "Sunny wants something, but he cannot tell us." Then I knew what Becky was thinking. She could not put it into words, but I said, "You feel the same, don't you?" She said "Yes" and then puffed a sad laugh. To which I replied, "I am sorry..."

Becky and I are followers of Christ. She cannot remember not believing in the Gospel. I became a Christian in June of 1976 when I was nineteen years old. Attending religious ceremonies is difficult for Becky. She will sit quietly and stand when others stand. Unless the music is an old hymn or gospel song from the 1970's of 1980's, she will not sing or even hum along. Communion is difficult since it requires some coordination, especially if you have to drink from a thimble. Today we took communion from a communion station, so it was more confusing for her. I gave her the bread and said, "This is the body of Christ broken for you." I took the juice and said, "This is the blood of Christ shed for you." I am not sure how much that helped, but in that moment, I because a priest for Becky. I said to Becky what is said to me every week in my Anglican Church. Becky cannot go there because the music is too loud for her. We have Becky's weekend helper (we jus

"What is primary, progressive aphasia?" asked our new weekend caregiver, who has done memory care for five years. How many times have I had to answer that question when describing Becky's cruel condition. For short, it is PPA. I have had a neurologist not know what that stands for. You will find out if you read this blog. It is a rare form of dementia that strikes the frontal lobes of the brain first, then marches on to ravage the rest of the brain. Becky was diagnosed in March of 2014, although the symptoms were noticeable earlier. It took years to get the proper diagnosis. Why should I--someone who has written many books and who has a web page--start another blog? I write to save my life, to strain for some perspective in the midst of mind decay. Perhaps what I write will touch some of you who care for those with PPA or for those other forms of dementia. In a few months, my book, Walking Through Twilight: A Wife's Illness, a Philosopher's Lament , will be