Dave’s Journal 7/20/19

I haven’t been journaling much because Harriet has been on a very long plateau where nothing has really changed. Once the disease starts progressing again it might be three steps forward and two steps back; that is, Harriet might have episodes where things seem bad and then recover from that. However, the recovery will never take her back to where she started. The other possibility is one that I see a lot of, in the different support groups, where the decline would be like taking the elevator down to the basement; a steady downward motion with no recovery at all. Of course, sometimes a person will decline quite a bit and then stop at another plateau. Only time will tell how quickly, or the way, FTD will take her life.

I had taken consolation in a report that I read, when we first started this journey. It said that there were three stages: beginning, intermediate, and final. The article said that people would be in stage one for 50% of the illness and stages two and three for 25% each. When I read that report, Harriet had already been struggling with the effects of FTD for about six years and was still in stage one. However, watching and listening to people seems to indicate that this formula seldom works out so nicely. I have a friend whose husband was in stage one for around six or seven years, went into stage two for a couple of months and into stage three and died within six months. It seems to me, though I am not an expert by any means, that FTD progresses how it does for each person, and it is very difficult to figure out where your loved one is in the process.

On June 8 & 9th we were in Toronto, Canada, for our Son’s wedding. Following the reception Harriet and our granddaughter Tabby, were walking back into our Hotel and somehow, Harriet lost her footing and fell. She has been in massive pain since the fall but, because of the opioid crisis, the doctor has her on Tylenol for the pain. Because of the pain, she isn’t moving around very much, and I think this is having a bad effect on her mind. Either the FTD is progressing or the lack of exercise is causing a temporary mental slow down.

She has become clumsier lately, there is about a one-inch difference between the hallway floor and the great room, she has stubbed her toes on that place two or three times in the past week. One toe looks broken, very purple and swollen. You might say, anyone could do that. True, but she never has before, and we’ve lived here for three years. She has also injured her good knee but doesn’t know what happened. She stood up and heard a pop from the back of her knee.

A couple of days ago I was putting up handrails in Dad’s shower, she called and needed me to come home right away. Somehow, she had slipped out of the recliner and was on the floor needing help to get up. I wasn’t sure how we were going to get her off the floor. She has had a knee replacement and isn’t supposed to kneel on it. She had just injured her good knee and had a lot of pain in it. Usually she would roll onto her knees and crawl over to a chair and pull herself up. This time I got a ramp that our dog uses to get into the camper. After I knocked Harriet’s glass of water onto the floor, right where she was sitting, and stepped on her toes a couple of times, I got the ramp in place and she scóoted up it and into the recliner.

Lately she cannot think about how to do things that she used to do without giving it a thought. Last week she was standing in the kitchen with a puzzled look on her face. “What’s wrong?” I asked her. She thought for a moment and then asked, “Do you remember how to make oatmeal?” I was going to make a joke about googling DIY Oatmeal but thought better of it. Last night she turned on the television and asked a question at the same time. The television was on so loud that I couldn’t hear her question. I said, “Mute the television, I can’t hear you.” She looked at the remote for a few seconds and then handed it to me. I pushed the mute button and she asked, with real awe in her voice, “How did you do that?” I showed her the mute button and said, “Just push this button.” The thing is, she watches television every day and has the remote by her chair. Every evening, during, Wheel of Fortune and Jeopardy, she mutes one commercial after another.

Harriet used to take a shower almost every day. It’s gotten to where she takes a shower once, possibly twice, a week.  She would always make sure her hair looked great even if she wasn’t going anywhere. Now, she will take care of her hair only when she is going to go out in public. This lack of concern over personal hygiene, is fairly common among people with FTD. The thing is, I don’t know if it’s because of FTD, or because of the pain of just moving around, that has caused these changes. Next week we’re going back to the doctor to get a referral to a pain clinic. Hopefully, once the pain is dealt with, she will return to normal with everything else.

Harriet’s High School class celebrated their 50th anniversary with a dinner and dance at the local Golf Course. We had one of her best friends, from High School, spend the weekend with us. Harriet did really well with the guest and the party; she was a very gracious host and moved around at the reunion, speaking with old friends. She really had a great time. Since the celebration, she has been sleeping a lot during the day. This is nothing new and is expected. Anytime she does something one day, she will need 2-3 days to recover. FTD is exhausting for those struggling with it.

Finally, last night she was complaining about being so “foggy headed,” and having vision problems. She asked, “Do you think the dementia is getting worse?” It does seem like things are going downhill, but only time will tell. I will update you in about a week.

Please continue to pray for us and be assured that we are praying for you.

2 thoughts on “Dave’s Journal 7/20/19

  1. I am sorry she is having pain. This is not right she has to suffer. I pray she will get relief soon. My husband suffers with severe pain every day. He did hard physical labor so his body is a wreck. This severe pain was going on 3-4 years before he started having FTD symptoms. He worked until he couldn’t walk. Drs would not give him anything for pain even tho images showed damage in his back, feet, hips, neck and hands. They say it’s just a little arthritis. He had lost insurance and we paid out of pocket as long as we could to get him
    better with injection and physical therapy. He finally got a hip replacement 3.5 years ago. I believe the pain triggered his FTD. It was pure suffering. Pain so bad he would vomit, diarrhea, not sleeping, couldn’t get round without a rollator walker. He still suffers but not as bad with the new hip. He uses other means to help with pain. And no, I don’t say a word because he is suffering and no one cares about his pain. It’s inhuman that people are suffering who truly need relief. Ken has been in the early stage for about 5-6 years now. He was diagnosed in 2017. I have seen decline but his has been very slow. So we wait and wonder with all the other FTDers. God bless y’all. 🙏 and prayers each day.

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