Lessons Learned Through Change

Logging in, I was shocked that my last blog was nearly 2 months ago. It is difficult to realize how much moving involves, especially during a pandemic. 

I have done interstate moves nine times, so it was easy for me to choose doing all the packing myself. My diagnosis was in 2011 so you would think I would have some idea of the limits on my energy and strength. I had a limitless supply of boxes, tape and other packing supplies, thanks to Amazon, my best friend. I did not have a limitless abount of energy. Since stores were almost all closed, this was a big help.
There were days that even assembling boxes was exhausting and some were downright difficult, especially the six foot tall ones. I made the mistake of assuming my "caregiver" would pitch in. She did do a good job of watching me though. It was frustrating enough, that I began to do the work when she was not there so I would not get as angry.

I have just told you the two lessons I actually learned and used. I learned to listen to my body and my brain. After several days, I had to start resting when my body and/or brain was tired. I kept at it long enough to realize that I could only work 4 or 5 hours a day, usually divided into two work sessions. Even with those limits, when either brain or body was exhausted, I actually took a day off to rest. 

I did it! When everything was packed and the house clean, I was proud of myself. I  also was able to part with gave a lot of "things". A few years into my FTD, I realized that things don't matter nearly as much as they used to. Knowing that FTD affects thinking processes, I would set things I didn't think I needed aside for a couple days. I would look at everything and reassess a few times. After that, I decided what to toss, what to donate and what to give away to friends/family. The local rescue mission grew to love me. I gave them two van loads of items they could sell. With the third and final load, they had to bring the small bus they use to transport the less fortunate to church. They filled it except for enough room for the three guys.

I also offered many items to family and friends. A lot got tossed but most everything else was taken by my "caregiver." I learned to accept help. My brother in law was always there when I needed heavy work. My sister was the one I needed to support me along the way, bringing me food when she knew I wasn't eating and suggesting a day off when she realized how tired I was before I did. It was a difficult, yet necessary, thing to learn. 

Lesson number two is the reason I have "caregiver" in quotation marks. Mine was good while my husband was still living, but afterward, not so much at all. The one thing I will never forgive her for is that during the half hour  break I took from lying next to his bed, she checked on him. She realized he was finally giving up the battle and would die within minutes. She stayed with him "until she was sure he was gone." To deprive me of that moment, to be with him, is totally unforgivable. I had spent 4 days sitting or lying next to his bed, holding his hand. I left his side for a few minutes to rest my back. I don't understand how she could have done that unforgivable action. I did manage to make it less painful by closing the door to his room and bathing him before the necessary people arrived.

After his passing, I will admit, she broke her hand. However, considering she had previously continued to work after full shoulder replacement surgery, I was angry that she stopped doing anything. 

This is a very important lesson. If you hire a caregiver, make sure s/he is giving care. Caregivers, please observe them often and at different times a day. Unfortunately, I did not listen to my sister, daughter and friends who all tried to tell me how she was taking advantage of me for the five months after my husband's death. I hate any change and this would have been a major one to me. To those with FTD, when more than one is telling you someone is taking advantage of you, please consider that they just may be right. It took me realizing that while I was pushing myself beyond my limits, she was sitting and watching soap operas. I never fired her  until a week before the move. 

The thing that decided I couldn't even keep her for another week was a biggie.  The home buyer's house was to come the next week on Wednesday. When she left on Friday, I told her to be prepared to thoroughly clean the house. Surprise! Instead of showing up 11:00, she didn't appear until 2:00. Of course, I had nearly everything done by then. I had saved the vacuuming for her to do and, even then, I needed to redo it the next day even though I had broken my foot over the weekend. So instead of stressing the broken bones on just Monday, I had to do it again on Tuesday.

In the end, the home sale went perfectly and I am now in beautiful North Carolina and happier and more relaxed than I have been in two or three years.

I hope you picked up on the lessons I was trying to share. For caregivers and/or family member: If you have someone helping in your home, please check on them when they aren't expecting you to and do it often. If your FTD'er is like me, they just might cover for them just to keep the peace and avoid change. Offer help when your FTD'er appears to need it, but don't take over unless there is significant danger. I recognize that it is often easier to take over, but it surely was a benefit to me when my sister forced herself to sit and watch, only offering occasional help when she believed I was endangering myself. 

For those with FTD: as much as we hate change, sometimes it is a good thing. I kept paying my "caregiver" for nearly a year when I should not have.  Change is often a good thing. Don't be afraid to take on tasks you want to do as long as it doesn't involve knives or power tools, etc. Then again, seeing as how I trip over air, maybe keep the tasks simple. Packing boxes was fairly safe for me, I only cut myself one time and it wasn't even bad. I cut it on the metal edge of the tape dispenser. There's no way we can know when we will have an accident. Yet I really believe that we often just need to do it by ourselves.

For family and friends, besides encouraging you to spend time with your FTD'er, keep an eye open and if you suspect something is wrong tell both the caregiver and the FTD'er. For me, I would have to add "often" because I sure don't catch on right away... or even after months of being told.

What else did I learn? The biggie was that most things don't matter to me. I kept small reminders of family and friends but was able to part with things I was keeping just because they had belonged to someone I loved. I actually learned that it is okay to ask for help or to at least accept it the third or fourth time it was offered.

The best thing I learned? It sure feels good to have time, energy and my brain functioning enough to blog again. Thanks for waiting for me!