This being Christmas Eve, I have a sense of peace, optimism and love. How can I feel this wonderful while dealing with FTD? That answer is simple. My daughter is home for a week-long visit, from her home three states away. My house actually feels like a home again instead of just a place to live. I'm sure all of you understand that. Nothing can take away that feeling and comfort of home like FTD can.
Last week, I had two days that I scheduled to have nothing to do so that I could rest up to enjoy Christmas Day. If there was anything I had forgotten to do, I was determined to forget about it and leave it undone. Unfortunately, it also gave me time to think. It came to me that I felt, not like I had accomplished something, but that I had simply been going through the motions of what was expected. I had decorated the house, baked the cookies, bought the gifts and wrapped them. Well, I don't wrap anymore, I would end up with wrapping paper around myself instead of the package. So, I had stuffed them all into gift bags.
Looking around, I realized I had not enjoyed a bit of it. It had all been too much to do with the limited energy that FTD allows me. This really hit home when I delivered all the cookie trays to those who look forward to them every year. Read "look forward to" as "expect to receive." It is probably not fair for me to expect the recipients to realize what a task it was to accomplish the baking this year. When that one person said to me "The only one I haven't liked so far is your nut rolls. I don't know what you did wrong, but they just aren't good." Of course I didn't think to say something like, "I'm sorry you did not like them, but I did the best I could." Instead, I apologized and said I had no idea what I did wrong. The result was me wondering why I wore myself out for three weeks in order to make the cookies.
There was no joy in any of the preparation work leading up to the holiday. It was just that, work. It all turned out nicely. Well, except for those nut rolls, I guess. The house looked festive. My husband even told me so and in 45 years of marriage, I think that was a first. I believe I bought gifts everyone will like and the planned menus were looking good.
In spite of all the efforts, I wasn't feeling the joy in it. I realized I did it all because I felt obligated to and many people were expecting it. I sat there, feeling exhausted and wondering why I pushed myself so hard to try to make everything perfect for everyone. Staring at the lighted tree, I didn't feel the excitement that I have always felt for the holiday. All I felt was relief that it was done and that pretty soon it would be over so that I could rest and get back to my normal level of craziness.
I was cussing at FTD because it has stolen so much from me and from everyone I love. I was feeling afraid because right now, one of the worst symptoms I am dealing with is paranoia. I was afraid that if someone would dare to criticize anything, that I would 'lose it'. With not a bit of energy left after all the preparations, I fear I will not be able to not take it personally and won't be strong enough to take it for what it is worth, which would be nothing. FTD steals way too much from us, our abilities to do things, to be employed, to have any independence and to just be how we used to be. One of my often repeated mantras is "fake it till you make it" but that wasn't going to happen here.
All in all, I was feeling numb, no emotions and no energy. There was no joy in the meaning of Christmas and no joy in the coming family celebration. BUT, a miracle happened. My daughter arrived. She brought all the joy back to me. I am anxious for her to open her gifts to see her eyes light up, just like they did when she was a child. I see her enjoying her favorite cookies and I feel happy that I could make them for her. I am watching her two cats entertain us, enjoying the snuggles they are giving me and feeling happy that she brought them with her.
Why am I going into all this? Simply to remind everyone to look for the important things. Who cares if the nut rolls don't taste good. Who cares if the gifts aren't beautifully wrapped. Who cares if the meals don't turn out perfectly. That isn't what the holiday is about. Hopefully, next year, I will remember that all those preparations don't matter. The wonderful feelings I have today are what Christmas is all about. The joy I will feel at the church service tonight is even more what it is all about. The hugs and love of family that I am receiving now and will be feeling more of tomorrow when there is more family here... that is what it is about. There is no 'just going through the motions' with that.
My husband and I celebrated our 45th anniversary yesterday. Obviously, he is here and will be here with me tomorrow on Christmas Day. My daughter is here for an entire week. Tomorrow, my sister and her wonderful new love will be here. We will be a family. I may yell, cuss or cry if things don't go right, but it will be okay. We are family and they will understand.
I hope everyone reading this will have a great holiday as well. The rooms may not be as crowded as they used to be as many of our family and friends have deserted us since our diagnoses. That may be a good thing, we don't like crowds anyway. Celebrate those who are there and overlook all the crap FTD brings with it to the party. Hug more, laugh more and enjoy every moment you can. Remember to find a quiet place if things get to be too much. Find that place to sit where no one can come up behind you to startle you. If something is bothering you, like too much music or pets running around, speak up and mention it because there may be a simple solution. If you don't speak up, odds are that no one will understand why all of a sudden you are uncomfortable and grumpy.
To the caregivers and loved ones, please remember how exhausting even fun events can be to someone with FTD. If you see their energy waning, see if there is a way to help. Perhaps a nap or some quite time will help or perhaps it is time for them to leave the festivities. They aren't being a party-pooper on purpose, I promise you!
I must add one more thought. The Christmas season can be difficult for those who do not celebrate the holiday. All the festivities going on around them and they just might feel ignored and left out. If the person you love who has FTD is in this group, please remember that the coming days may be more difficult than usual. If you understand what may be making them feel sad or out of synch, it should be a bit easier to accept and help them through.
I can't help but end with "Merry Christmas to all, and to all, a good night!"
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