Who are you, and what have you done with my wife?

Diagnosing dementia can be difficult because some symptoms can apply to several different types of this disease.  Two big symptoms, for Frontotemporal Dementia, are personality change and loss of talents and abilities. Harriet has been diagnosed with FTD but not the subgroup. If you’re diagnosed with Behavioral Variant FTD then the literature speaks of Apathy, indifference, combined with anger, rage, insulting, and rude behavior. I don’t know if rudeness is something that will eventually arrive but the personality change, we have seen is the exact opposite. What we have seen so far, is that she is more patient, kind, loving, and quicker to complement and speak well of someone.

I have seen the apathy and indifference at times when a similar situation, in the past, would have caused a lot of frustration and anger.  After fifty years you pretty much know what it is that will set your partner off. Something happens, or I forget to do something, and my expectation is for a negative response; instead of that Harriet says, “Oh well, no big deal,” or, “It doesn’t really matter.” For the first few years, of the disease, she demonstrated more apathy and indifference towards people and events. Something would happen, and people would be upset. She wasn’t upset and would occasionally say something along the lines of, “Well, I don’t care about that anyway,” and change the subject. Strangely, she has changed and has become very concerned about other people.

Around the first of the year, Harriet said, “You know that I have never made a New Years resolution. Well, this isn’t one either, but I’ve been thinking about people who serve others, like wait staff, janitors, flight attendants, people in jobs like that, how most people either complain about them, or ignore them. I’ve decided that from now on, if I see someone doing a good job, I’m going to complement them. If a waitress does a great job, I will complement her, and you will give her an extra-large tip.” In September and October,we traveled 8,100 miles in our motor home, all through the western United States, and I saw her carry this idea out, (she has been doing it all year, but we don’t eat out as often as you do when you’re on vacation.) If she forgot to speak to a waiter she would go back in the restaurant and find the person. Once she got the idea to complement the person to the restaurant manager. People were so pleased to be singled out for praise. One woman had tears in her eyes as she told Harriet about what a crappy day she had been having and what a blessing her words were. (I imagine the extra-large tip made Harriet’s complements ring even more true.)

Harriet enjoys a good story, gossip, or discussion about someone’s eccentricities as much as the next person. However, on Thanksgiving Day she told everyone that she was not going to participate in negative discussions about people any longer. She said that she wanted to be more like, (my cousin’s husband,) Fred Allen who not only wouldn’t speak badly about another person, he would stop others from doing so in his presence. Then she quoted the old proverb, “If you can’t say something nice about a person, don’t say anything at all.” It’s going to be real quiet around our house. Joking! Really,just joking.

Another change is, Harriet has become more and more artistic; making glass jewelry, Christmas wreaths, and knitting scarves, washcloths, etc. In the book, An Unintended Journey, author Janet Yegoda Shagam writes that progressive non-fluent aphasia, Frontotemporal Dementia causes a, “Deterioration of language function, [with an,] occasional increase in artistic and musical expression.” Table 2.3, Page 45. We’ve seen an increase in artistic expression, and even bought a kiln to fire the glass jewelry. But FTD gives with one hand and takes away with the other. Although Harriet made very beautiful jewelry, and really enjoyed doing it, she has now lost all memory of how to use the kiln.  Our plan is for me to learn how to use the kiln. That way she can still make jewelry and I will fire it.

If you have read the previous postings, you know already of the loss of talents and abilities that Harriet has suffered. It’s a list that grows longer and longer. Just a few of the losses are: forgetting names, (She remembered the hostess from the Bill Knapp’s in Sylvania, FIVE years later when we saw her again in Tampa.) can not spell simple words, (Another strength) can’t organize events, can’t remember how to use her laptop, some days can’t think how to use the phone, sometimes forgets how to cook certain dishes, forgets what we’re talking about in mid-sentence,  trouble remembering words and what the word means, and this is only a partial list.

 As this disease progresses,we will see more and more of the things that make Harriet who she is, disappear. There will continue to be personality changes. Other than change, we don’t know what to expect. The sweet, patient, kind, complementing, woman she is today might become the rude, obnoxious, angry, insulting, indifferent person I’ve read about in so much literature. Then again, if I were losing all of my talents and abilities, if I found it increasingly difficult to communicate, if all of my freedoms were being taken away, I too might become angry, rude,insulting, indifferent and apathetic.

Please pray, that the Lord will bless Harriet with continued patience, love, compassion, and peace. Please also pray for me, that the Lord will empower me to deal with whatever changes we face, in my new role as Caregiver

3 thoughts on “Who are you, and what have you done with my wife?

  1. I have always struggled with being tired, it’s worse now. I have to struggle to communicate, coming up with the right word or hanging on to the thread in a conversation is difficult and I find it even more exhausting.


  2. Harriet, I love to talk to myself, so I can come visit with you, and if you don’t remember even half of what I said, it’s okay. I won’t have said anything worth remembering anyway.


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