Good Things Despite FTD

I think we all realize that FTD is an extremely fickle disease. It attacks our brain when it wants to and in what parts of the brain it wants to and in what order. It plays tricks on our psyche, sanity and happiness/unhappiness.

I have been struggling ever since returning home from conference in May. I usually am so exhausted by the time I get home each year from all the activity, learning, camaraderie and fun so this was not unusual. This year, though, there was an added let down. My daughter and I stayed an extra day in L.A. to visit with my favorite cousin (Sorry to all my other cousins, but he is, no doubt about it!) and his family. It was a wonderful day and well beyond enjoyable. When we got back to the hotel, though, I felt a huge let down, wondering if this would be the last time I would ever see them.

Just what someone with FTD needs... one more reason to get the blues! 

Yesterday morning, I got the most surprising phone call. He was two hours away and was headed here to visit with me and my sister and our husbands. We laughed, we cried, we had a great time. I can't think of anything better to cheer me up.

When he finally had to leave, I was so exhausted after several hours of lively activity that I didn't have the energy to feel sad that he had left. Doesn't make total sense, but it worked out that way. Instead, I awoke this morning with more energy than I have had in a long time. I got up, did laundry, cleaned up the kitchen and cleaned out a closet that I had been avoiding for months. I definitely needed to do this because it is the closet where I stash all the Christmas gifts as UPS and the USPS bring them. Thank you, God, for giving me online shopping! Now I can get busy shopping again because there is still a lot of empty space!

Tomorrow, I will most likely be exhausted again. That is just the way this disease works. Any activity out of the ordinary, even when it is such an enjoyable one, can exhaust us to the point of having a couple really down and worthless days. My sister and her husband left as soon as my cousin did because they could see how exhausted I was. Not everyone is as observant when it comes to living with someone with FTD but they know me and understand.

Any activities, stress (arguments, frustration, confusion, really anything) can affect us like it did me. Many people, including friends, family and, yes, even caregivers, do not seem to be able to recognize this fact. They think that it if is an enjoyable event and we seemed to have a good time during it, that it should not be exhausting to us. Some even suggest that since it was fun, we should be energized and/or in a better mood than before.

Ah, wouldn't that be wonderful!  Yes, we can have fun and enjoy activities, visits and adventures out of the house. We usually pay a pretty big price for the enjoyment though. It is plain to see, right after the end of the event that we are tired. Unfortunately, though, the thing that many do not recognize and sometimes actually doubt the validity of how long this exhaustion can last. I wish it were so.

It is extremely rare that, after a fun event like my cousin's visit, that I have any energy at all the next day. I usually need at least two or three days of rest and inactivity to recover. I am also usually quite cranky during the recovery period. I have often been asked why I was was so down after the fun we had the day before. It just doesn't work that way. Most of us cannot recoup the energy that quickly. 

So, you may ask, why was I so energetic today? If you regularly follow my blogs, you are most likely aware than I am also the caregiver for my husband who has Alzheimer's. We have been trying for months to get him on a good sleeping schedule, all to no avail. He continued to wake me at least several times each night and it would take quite a while to get him settled back down. Those of us with FTD need more sleep than most of those without the disease, not a drastic cut in the amount of sleep we get.

I experienced what I will call a miracle a few days ago. During a support group chat, I was talking about how exhausted I have been and explaining everything we had tried to get him onto a healthier sleep pattern. If my care helper had not been staying over a few nights a week to help me deal with the night-time drama, I would have been in even worse shape. Anyway, one of my friends asked, during that chat, if I had tried CBD oil. After I slapped myself upside the head, I admitted it had not occurred to me.

Oh, FTD, count the ways I hate thee. I use CBD oil... for stress, for FTD headaches, for nervousness and other reasons. Why had I not thought of it?  So that evening, I snuck it into his drink before bedtime. I even put a drop on each of the donut hole treats he takes into the bedroom with him and eats throughout the night.  He did get up once through the night to get another snack, but he was quite mellow and did not come into my room, just went back into his own and back into bed. 

It has now been three nights like that. Absolute heaven... three nights of uninterrupted sleep. I know there will still be bad nights, I am not that naive. I will, though, enjoy each and every one of the good ones. I owe my friend at least a dinner the next time I see her! 

I don't know what our doctor will say this week when I see her. Honestly, I don't care. I will keep using the oil anyway. Whatever works. Whatever keeps him most comfortable. And... bonus points when it lets me sleep! I am not naive enough to think this solution will make my life as a caregiver and having FTD easy, but I will enjoy it while I can.