Christmas is now officially over, and it’s with mixed emotions that I say goodbye to it for another year.
I love the Christmas holidays. I decorate everything in sight. Since we don’t go out often, we miss most of the festive sights so I bring it to us instead. I can’t outline the house in lights but I put up trees sparkling with white lights all along the front, and in front of them, I have bunches of red and white poinsettias grouped every two feet with stick trees lit in white behind them. Many garlands can be seen draped on porch rails with white lights running throughout. Electronic deer and a snow family grouped among trees with the Holy Nativity established in the place of honor at the entrance to our driveway greet visitors upon their arrival. Yes, my house could be on the tacky light tour if we had one in our neighborhood, but it is how I enjoy the sights of Christmas being limited in my time away from home.
The inside is as festive as the out, with garland draped over each doorway and a wreath hanging on each door. Christmas figurines are on every shelf, and my menagerie of Santas, snowmen, and Angels take up multiple surfaces throughout the house. In Lynn’s room, since he sits where he can be attached to an exercise peddler whenever he’s awake, I have a small tree just for him and a wreath on the closet door, helping to remind him that it’s Christmas.
While I am surrounded by Christmas cheer throughout the house, Lynn has barely seen the decorations, having only left his room 2-3 times this entire month, and he has not seen the outside. In early November, he received a double increase of the baclofen medication he has in his pump that circulates through his spinal fluid. It has knocked him for a loop. It has helped a lot, making the almost constant spasms he was having decrease significantly, but the sleepiness that came with it has made him almost comatose at times. The first few days, he slept ALL day and night, only waking for meals and a shower. Now, he is awake most of the day but needs long naps. Though he may still adjust some more, I expect this may be his new “normal” for a while. Unfortunately, the sedative effect saps his energy level, and after only a few hours of activity, he needs to give in to a nap. It’s made it hard for him to participate in many of the family activities, but at least he could spend several hours with family while they were here in our home.
I’m fortunate that family and friends know we can’t get out so they come to us for the holidays. They also bring in the meals and help prepare and clean up. I appreciate that since Lynn needs my help the same on holidays as he does on regular days. Working around his schedule has become fairly routine for us since he’s been a “functional quadriplegic” for several years now. “Functional quadriplegic” is how I describe the fact that he has feeling and slight movement in all extremities but has no ability to functionally use any of his limbs consistently. He has one arm to lift a drinking cup, run his wheelchair, and use a computer keyboard, but that’s pretty much the limit.
As a caregiver, finding a way to enjoy the holiday while meeting Lynn’s needs and not feeling cheated is challenging. Most of the time, I’m fine with not getting out or being able to fully participate in the activity occurring, but at times, it’s difficult. For example, this year, part of my family went to see a Christmas light display at a local estate. From what I hear, it’s beautiful but to appreciate the experience, you must go after dark. Therein lies the rub for me. Once it gets dark, my nighttime routine takes over my life. I spend nearly five hours each night doing things necessary for our lifestyle. If I went with everyone to see the lights, I knew I would still have those five hours waiting when I got home. I couldn’t see that the enjoyment of the lights would offset the additional stress related to having such a late start for the night routine. So, I elected not to go. I was disappointed but also confident that I had made the right decision for us.
Today (two days after Christmas), I packed up leftover sweets (I already put on ten pounds for Christmas, so I need to eliminate the temptation) and took a long afternoon nap. Lynn has been asleep most of the day, and I decided to let everything else go and rest today. I feel like I’ve been on the go for weeks and probably have been. Sometimes, it’s important to STOP for a day or at least part of the day and just rest. I slept for two hours and felt like I could do it again three hours later!
Tomorrow it’s back to our routine. Time to eat regular food. Time to get up and go to bed at about the same time each day. Time to listen to our bodies when they say, “enough is enough; time to stop.” Thought I still have to take down all the decorations, Christmas is over. It was so much fun and I have good memories from it all but I’m happy to be heading back to our routine. It’s a survival thing….
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
