First of all was when I realized that here it was Sunday and I had not had a chance to write a blog entry yet this week. No wonder I am feeling totally exhausted to the point I am literally dozing off at my desk, if I have indeed been that busy! To add to that, my husband reminded me to print a calendar page for the month of May for him and I hadn't even realized May was only two days away.
The other reason is that time is the enemy of FTD. The faster the time goes by, the sooner the symptoms worsen or new ones appear. I have written and talked so often about how valuable my writing is to me and how thankful I am that I can still do it. All my life I have said that my fingers were directly wired to my brain and that is why I typed so fast, enter data just as fast and was an artist. I didn't have to consciously think about it, the fingers just flew.
This past week it finally hit me that I have been struggling more and more with my typing. Even though I can usually still think the words, they are not what shows up on the screen. I now must proofread things multiple times. It used to be that I needed to proof everything two or three times. Now it is more like six or seven. I am stubborn though, so I will keep at it until it gets bad enough that when I proofread, I can no longer understand what words I meant to type versus what is there in front of me. I also have been accidentally posting things on the wrong page. I have posted things intended for our private support group on another support group's page and even on my public page. I could have become very embarrassing and uncomfortable.
Along with that, I am finding that when I am reading I will totally misread a word that changes the entire meaning of the sentence or paragraph. After a few seconds, I am saying "Huh? That doesn't make sense..." Then when I reread it a couple times, I realize that I had mistaken a word for another not even close to what it really is.
I don't think I like time speeding by. I know I don't like time bringing me new and worse symptoms of my FTD. I will never give up though, I will keep plugging through it as long as I am able. If it gets to the point that what I write makes no sense, I hope one of you will let me know!
Back to the first example of time moving too fast. This was a busy week and one filled with way too much trauma and drama. The first thing I want to talk about is toxic friends. I had been avoiding spending time with one of my friends who seemed to just exhaust me any time I was dealing with her... on the phone or in person. Finally, this week I allowed her to make me feel guilty enough that I agreed to go to lunch. This friend insists she totally understands FTD and how it affects me. She also firmly believes she knows what it best for me and what I must do.
When struggling through a disease, certainly including FTD, that is not what you need. It is nearly impossible for people to understand what it is to live with FTD. Some caregivers can not even understand, though they surely do try. It is total nonsense that even a friend can insist on life changes that I need to make. When we went to lunch this week, I mentioned an article I had sent her on something that could possibly be causing the dizziness symptoms she has been dealing with. I asked her if she saw it and she said, "Yeah, I saw it then promptly forgot about it." I took that to mean that she had seen it but forgot to go back and read it when she had time. Logical interpretation. Unfortunately, it was also wrong. What she meant was that she saw it and was not about to read it because she already knew it was total nonsense. When she told me she had forgotten it, I started giving her a couple bullet points from it when she literally screamed "I DON'T WANT TO TALK ABOUT IT!" The other two ladies with us showed utter horror on their faces. Even a waitress who was passing by later asked me what that was all about.
First of all, it's not like I had been hounding her about this article. It was the first time I mentioned it. Secondly, I was just suggesting she read it and perhaps ask her doctor about it. When you match this up to the major life changes she keeps telling me I need to make, it surely seems like she overreacted. Many people, family and other friends, have been telling me for a couple years that she is toxic to me. I now believe them. Right before this blow up, she had been insisting that I need to leave my husband (who has Alzheimer's and I am his caregiver) and move three states away to be with my daughter. Worst of all, I could not leave the restaurant since she was the one who had driven me and I had to rely on her to take me home.
At least I understand now what everyone meant about her being a toxic friend. That is the last thing that someone with FTD needs. We need to be surrounded by support, love and positive energy. I am sure I am not the only one to not recognize toxic friends (and family) and the importance for us to avoid spending time or even listening to them.
Yes, it is also family. I think I have posted before how my favorite uncle. whom I was extremely close to, passed away suddenly on February 11. Then, my aunt, his wife and my best friend passed away just a short two months later, on April 9. She had cancer and my uncle was her full-time caregiver and it was too much for him. It is a good illustration of how difficult the life of a caregiver can be.
Yesterday was Harriet's memorial service. We had waited a couple weeks so that everyone who wanted to be there could be. Part of it was even in consideration of me so that I could still attend the AFTD Conference in Chicago. I have to say it was a beautiful service and I got to meet many of her friends whom she had always talked about and they were just as happy to meet me. It warmed my heart as they told me that they feel like they already knew me because she talked about me so often.
That contrasted with a sad part of the day when I witnessed how family members can become vultures and latch onto anything with financial value, everyone else be damned. Three family members, myself included, were invited to go to their house to see if there were items we would like to keep. As I gathered little things of extreme sentimental value, they rushed from room to room collecting the things of monetary value. It truly got ugly when we both wanted one particular item. I offered to compromise but she said she was not interested in compromising. Fortunately, the attorney knew that Harriet had already told them that she wanted me to have it, so I feel certain the attorney/executor will give it to me. It continued to be awkward and I finally decided I needed to get out of the negative atmosphere. A side lesson was to be sure who was listening to a conversation before you lie about it!
So, I learned that family members can be just as toxic as anyone else, possibly more so because you don't expect it from family. It is possible to survive when dealing with those toxic people. In the case of my friend, I finally learned that I just can't allow her in my life at all anymore. The enjoyment of going out to lunch occasionally is certainly not worth going home with toxic baggage in tow. I also learned that it is necessary to avoid all toxic people, even if they are family.
I was very proud of myself. Funerals are difficult for everyone, but even more so for those of us with FTD. I survived it and I managed to keep the good outweighing the bad by concentrating on my aunt's wonderful friends at the service and by concentrating on sentimental memories at the house, along with getting to know my aunt's sister a bit better. She seems to be a wonderful woman and I will cherish her friendship. It will be a way for the two of us to keep my aunt alive in our hearts.
It is not selfish to put your happiness and well being ahead of others, especially if they are people who are not supportive and loving to you. There are a lot of people out there who are willing to take advantage of someone with a disease, like FTD or any other dementia. People like that actually seem to find enjoyment out of doing so. I was strong this week which proved to me that I can do it. I am not alone, all of us can, and must, look out for ourselves.
No comments:
Post a Comment