Saturday, March 2, 2019

Good Days and No So Good Days

There are days and then there are days!  Today has been a day! 

To begin with, someone whom I have long respected really let me down this week. He sent out an email to everyone in an organization I have been a part of for 15 years. I was greatly shocked and outraged that he was supporting a policy that greatly goes against my beliefs. I am not going into what and why. I only mention it because in the few days since reading his thoughts, I cannot get it out of my mind and how wrong I consider his opinion. I suppose I could confront him about it, but not only would it not do any good, it would just bring more negativity into my life than I need or can handle. I tell you this to explain the state of mind I am in to deal with the past couple days.

Something absolutely wonderful happened, though, on the same day I received his email. A friend, one with FTD, rejoined our support group for those of us with the disease. I met this man and his family last year at the AFTD's Education Conference and really enjoyed getting to know him and his wife. He joined our support group after that conference and was a great member. The best gift he gave us was his wonderful sense of humor. I admired the way he faced the obstacles FTD presents and appreciated how he usually had some good words of advice. A couple months later, he dropped out of the support group so he could better focus on himself, which is what he needed at the time. I am thrilled that he is back and that he still manages to brighten my day.

On the other hand there is no doubt that FTD sucks. During the past week, my symptoms have worsened and I have developed a couple new ones. I have been absolutely, and completely, exhausted. I believe I would be able to sleep through an entire two or three days, if only I could. I had a relatively long and demanding Monday. Tuesday was a bit better, but not by much. The next three days, I have been worthless due to exhaustion. I have been unable to accomplish anything. One of the days, I swore I was too tired to chew my dinner. 

Part of the demand, of course, is my husband's Alzheimer's Disease. My sleep gets disrupted at least a couple times each night when he needs me. 3 hours + 3 hours + 2 hours does not equal 8 hours when it comes to sleep. I have been needing to nap during his afternoon naps. It helps a bit, at least giving me enough energy to fix our dinner, and that is about it.  Whether when I start getting full nights of sleep, the symptoms will bounce back a bit, I have no clue. I have been stumbling, losing my balance and falling even while using my cane. 

A more troublesome symptom is that I am beginning to have difficulty speaking. In order for my husband to understand what I am saying, I have to speak slowly and very clearly. Right now, I cannot seem to speak clearly, not enunciating well enough for him to understand. This frustrates me, not only realizing that I am having this difficulty, but because I feel so awful that I cannot communicate with him as well as I would like. I am getting fairly decent at charades though, if anyone wants to play.

Today is a good day in that I only needed to get up once to help him. I heard strange noises coming from his room and went in there to see what was going on. It was him making these sounds in his sleep and one of his legs was rigid and hanging out of the bed in a strange position. I rubbed his leg for a few minutes to relax it, then was able to move it back up onto the bed and under the covers. I leaned over and kissed him like I always do when he needs me through the night. God bless this man, he opened his eyes and said "thank you" in a very sincere tone of voice. I'm not sure if he was thanking me for bringing his leg up or for the kiss, but I'll take it either way. He was also able to get himself up and fed in the morning without waking me. I actually slept until 1:00 in the afternoon. I was amazed that he managed to keep quiet enough for this to happen. The look of satisfaction on his face was priceless and a reminder of the way we used to take care of each other.

The greatness of this event is hugely overshadowed by some news I received. A very dear friend of mine, who also has FTD, told me today that she was waiting for a bed in an assisted living facility. This in itself is not a bad thing and since she has been living alone, it is probably a wise choice made by her and her son. The negative side of this is that her symptoms are progressing to the point that this move has become needed. 

Since my FTD, this horrible disease has claimed many people I had become friends with. Most of them online, but some I have met in person as well. When you suffer from a life-ending disease, this certainly comes with no surprise. It is inevitable. When I realized that my friend's disease had worsened to the point that she is making this move, it upset me. I have not yet met my friend in person. We have become this close just from being friends online. It is like we are soul sisters because we had so much in common. 

Since last year's conference, I have been looking forward to meeting her in person at this year's. It is much closer to her home and she and her son were planning to attend. We had great plans and were looking forward to a great time together. She told me today that they are not going to be able to be at the conference. I am so very disappointed. I am also extremely sad because she is one of the first of my contemporaries (the ones who were diagnosed right around the same time I was) who has reached a milestone such as this. So, today, I am sad.

Then, I remember her words of praise and gratefulness for the support and care her son provides. I understand what she means because my daughter is so important to me as well. Her words were "Yes, we are blessed." We are, no doubt about that. She also has a beautiful (inside and out) granddaughter who brightens her days. 

Tomorrow, this is what I will remember. I will be so thankful that she has her son and granddaughter and that they have found a good assisted living arrangement for her. She will still be the awesome friend and soul sister who shares the same sense of humor I have. We will still trust each other with our deepest secrets. It doesn't matter that we will not meet in person in a couple months because we already know each other so thoroughly. I love this woman and am happy that she will be protected and cared for in her new home.

Yes, tomorrow will be a much better day.

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