You may recall that in the post, who are you and what have you done with my wife? I spoke about the changes in Harriet’s personality. The expectation, for people who come down with FTD is for mostly negative changes such as, indifference, apathy, rude, insulting, and arrogant behavior. The strange thing is that it is the caregiver who receives the brunt of the negativity. Many caregivers speak of how their loved one will be outgoing, friendly, and fun when around other people but rude, insulting, and sullen towards them. This was my experience in the first few years, before the diagnosis. However, not all the changes have been negative. In the past five or six-months Harriet has undergone another personality change in that she is more loving, compassionate, and sympathetic than at any time in the fifty years I’ve known her.
When Harriet read the paragraph above, she asked, “Was I really that bad?” This misunderstanding occurred because I went from the general description of typical behavior and/or symptoms of FTD to a discussion of Harriet without making it clear that neither she, nor anyone else, has every negative symptom. I’m sure that many of you thought the same thing, that, I was saying that, Harriet was out of control. In the early days, before the diagnosis, Harriet was not consistently rude, insulting, or arrogant. She didn’t call me names or talk about how stupid I was, nothing like that. However, she was like someone who was deeply depressed, in that she was apathetic and indifferent about things that she used to be passionate about. Her attitude towards the ministry changed to indifference, with a touch of hostility. In fact, there were a number of things that she became indifferent toward. Whereas we used to be partners, in the last few years I was left feeling quite alone.
I now know that some of the negative indifference was because of a loss of ability to make dinners and/or parties for a large group. Once she really enjoyed, and was very good at, planning, decorating, cooking, and hosting a dinner for many people. I thought she still enjoyed it but was developing a bad attitude towards the Redeemer Church Council. The truth was that she no longer enjoyed this because she couldn’t figure out where to start planning such an event. Instead of asking her what was going on I assumed a lot of things, which only led to more misunderstandings. This happens to a lot of couples when interests and abilities begin to change or when dementia sets in.
Another thing that leads to misunderstandings is the way I speak. One consistent criticism, during my years as a pastor, was that I spoke too fast. Someone said that I talked like a New Yorker on steroids. Another person asked if I was going from English to tongues, and back to English. My own father has complained, “You talk so damn fast I can’t understand a word you’re saying!!” I tried to train myself to talk slower, I would record my voice, and attempt to make necessary changes. Sadly, the more I got into a presentation the faster I talked. I guess I should have gone to a speech therapist. It is a problem that continues to this day and, in fact, has gotten worse. Added to the speed talking problem is the fact that I am losing my hearing and strangely, instead of speaking louder I speak more quietly. It’s a double negative, I talk fast and low.
Because of these things, when talking to Harriet, I am making every effort to change the way I speak. Her hearing has gotten so bad that she has hearing aids in both ears. Plus, the dementia makes it so she processes things slower than in the past. Therefore, when speaking to Harriet, I am making every attempt to look at her, say her name, and speak slowly, distinctly, and simply. Just so there are no misunderstandings, I don’t speak this way because Harriet is stupid. She may process information slower than in the past, but she does process it. I try to speak this way to minimize any misunderstandings.
Finally, another important step in avoiding misunderstandings, is to assume nothing. In order to be a good care giver, or care partner, I must pay attention to how her day is going. What she did easily yesterday, and may do easily tomorrow, may be extremely difficult today. For example, today we were invited to go to dinner and a high school basket ball game. In the past I would have said yes, because these are both something she enjoys. I’ve learned not to agree to anything without checking out how things are with her. Today she is not doing well, so I let our friends know that we would not be going with them. We have plans to get together with some friends next Saturday for dinner. Fortunately, they understand that, depending on how Harriet is doing, we might have to change the plans. Therefore, I can never say, to Harriet, but you agreed to do such and such or you’ve always liked to go out to dinner. I must be very flexible, taking everything one day at a time.
Misunderstandings are bound to happen, they’re a part of life. However, by paying attention, communicating clearly, and assuming nothing, they can be minimized. As a care giver my job is to help Harriet feel secure, understood and respected. This can only happen when there is clear communications. As you pray ask the Lord to help me do what I need to in order to be a good caregiver; one who can hear what is being said, see what is needed, and support Harriet through this terrible disease.