Kate has tried hard to maintain her independence. The easy part was shedding some of the responsibilities that she didn’t like so much. That involved many of the daily household chores, especially meal-planning and cooking. She quickly accepted my playing a greater role with those. The one chore she held on to the longest was washing clothes. As it was with our meals, she never announced that she was retiring from washing, she just stopped doing it. That was about three years ago when I added that to my own responsibilities.
With those aspects of her daily life out of the way, she only had to be in charge of her more personal things. The major item on that list was her clothes. Until recently, she didn’t want me to play any part in telling her what to wear or suggesting or picking out her clothes. Now she occasionally asks me to pick out something for her to wear. That happened this morning. She had started getting dressed in our bedroom and needed a top to go with the pants she wore yesterday and left on the chair beside our bed. She said, “I don’t have a top.” Thinking that she was indirectly asking for my help, I said, “Would you like me to get something for you?” She said, “Please.” She frequently asks me to get her something to wear to bed. In these situations it seems like she just doesn’t want to have to fool with finding the right thing.
Over the past year or so, she started asking my permission to work outside. Since she rarely works outside anymore, I don’t hear that much these days. I have come to interpret her asking permission as a sign of her not being sure what she should do. That is particularly true now. She doesn’t ask permission. She asks, “What now?” “What can I do?” “Should I take my iPad?” “Should I take my cup?” “Should I get ready for bed?” “Is time to go to bed?” One of the surprising ones is that sometimes she asks if she can use her iPad in places like a doctor’s office.
She is going through a transition with respect to dressing herself. She almost always does that without any help at all. It is becoming increasingly difficult for her to get her clothes on without putting them on inside-out or backwards. Since I am not usually in the room when she is dressing, I have usually noticed the problem after the fact. In several cases recently, I’ve observed her taking a long time to look at the front and the back of her clothes in order to prevent putting them on the wrong way. It can be painful to watch. I know that the time is approaching when I will need to help her dress on a regular basis. On a number of occasions she has asked for help putting on one of her tops and a night gown. She’s cute when she does this. In a very childlike way, she says, “Help.”
Beyond needing more help with routine daily tasks, she is almost totally dependent on me to help her with her memory problems. I can’t be sure, but it appears that she never remembers where she is (the city or place we are in). Even when I tell her, she can’t remember for any length of time. She often asks where we are within moments of my having given her the answer before. The same is true for names of people, places, and things. The other day she tapped on her right knee and asked, “What is this?” Yesterday she pointed to her elbow and asked the same question. She is rapidly losing all the connections between things and their names.
Her dependency has extended to include just about all information that she needs or wants to know. She neither reads nor watches television sufficiently to learn much of what is going on around her and in the world at large. She does catch snatches of sound bites either on the radio when we are in the car or on television when I am watching the news. She often says, “You going to have to explain this to me later.” Of course, neither of us remembers “later.”
I haven’t mentioned her dependency on me for transportation. She has accepted that, but she still recognizes that means a significant restriction on her ability to go where she wants when she wants.
Apart from all these things, she is dependent on me to keep her prescriptions up-to-date, get them out for her to take, plan all our daily activities, keep her iPad charged, make sure she has her iPad and cup when we go to Panera or Barnes & Noble, schedule all entertainment, massages, facials, and travel, buy her clothes, wash her clothes and take care of virtually everything else that needs to be done.
Given all these things, it may seem surprising that there are some situations in which she asserts her independence. One of those is when she refuses my hand walking up or down steps or curbs. Another one is when she is working on her puzzles on her iPad. When I see her struggling, I sometimes ask if she would like my help. Sometimes she does, but she usually doesn’t. I guess there are so many things for which she needs help that she wants to hold on to those she can handle. I don’t blame her. I would do the same if I were in her position.
Yesterday I read an article by someone I follow on Twitter. It addressed the importance of approaching dementia with a positive outlook. I retweeted and said that Kate and I have done just that. Even with her growing dependence on me, both of us have maintained a positive outlook about our present situation. We still enjoy each other as well as being active. That said, I do have moments when I feel more stress as we approach the latter stages of her illness. That happens most often in the middle of the night. I begin to think of the future. Then I have difficulty going back to sleep. This hasn’t yet become a significant problem. It is annoying, however, and it makes me more concerned about what lies ahead.
