Caregiver Perspective: We Survived Christmas but Just Barely

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 very much, 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 lite in white behind them. Lots of garland 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 door way 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 at all. 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 really 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 sleep ALL day and night only waking for meals and a shower. Now he is awake most of the day but needing 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 really made it hard for him to participate in many of the family activities but at least he was able to spend several hours at a time with family while they were here in our home.

I’m fortunate in 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 with the preparation and clean up. I really 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 he can use to lift a drinking cup, run his wheelchair, and use a computer keyboard but that’s pretty much the limit of what he can do.

Being a caregiver, it’s a challenge to find a way to enjoy the holiday while meeting Lynn’s needs and not feel cheated. 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 Lights display at a local estate. From what I hear, it’s beautiful but to be able to really appreciate the experience, you need to go after dark. Therein lies the rub for me. Once it gets dark, my nighttime routine takes over my life. I usually spend close to five hours each night in doing things necessary for our lifestyle. If I went with everyone to see the lights, then I knew I would still have those five hours waiting when I got home. I just couldn’t see that the enjoyment of the lights would off-set 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 I was confident that I made the right decision for us.

Today, (two days after Christmas), I packed up left over sweets (I already put on ten pounds for Christmas so I need to get rid of the temptation) and took a long afternoon nap. Lynn has been asleep most of the day and I decided I needed to just let everything else go and rest today. I feel like I’ve been on the go for weeks and actually probably have been. Sometimes it’s important to just STOP for a day or at least part of the day and just rest. I slept for two hours and actually feel like I could do it again just 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….

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