This past weekend, my parents and siblings, as well as our children and theirs, came to our house to celebrate Christmas. It was a wonderful time: lots of laughing and sharing, as well as good food. We rarely get to see most of them since Lynn has become wheelchair-dependent, so these times together are especially precious.
Changing where and how you do things is one of the adjustments that come with being a caregiver. Since most homes are not designed for access and steps or narrow doors make it difficult to negotiate around most homes, the places a wheelchair-dependent person can go are rather limited. The result is that you either become isolated from your former friends and family or you open your eyes to them coming to you. That’s what we do; we have everyone to come to our house. It’s funny but before Lynn became disabled, I used to really stress out and have to have the house clean and neat with everything looking great. Now, I’m glad they are coming and have learned to let it go…somewhat. I still like to make it look nice, but I’ve also learned that if I don’t get the chance to do that, everyone understands, and it’s no big deal.
Lynn was really looking forward to this year’s get-together. He has not been able to participate in our family get-togethers for the last two years due to some aspect of living with MS. This year, he thought it would be different, but it didn’t turn out as well as he had hoped. He realized shortly after he got up yesterday that it was not going to be a great day. After breakfast, he had to lie down because he was already exhausted. He rested for about an hour, and he got up just before everyone got here so that he managed to greet everyone and participate through lunch.
He was there for the welcoming greetings and for my daughter’s big announcement. You see, he and I had known since October that Sarah (my daughter from my first marriage) was pregnant, but she asked that we not tell the family so that she could do it herself. Boy, was that hard but we managed. It’s been especially hard because she has had a difficult pregnancy so far: excessive nausea with a lot of weight loss and at least two hospitalizations for dehydration. She was out of work for about six weeks and used up a great deal of their savings so it’s been hard not to share with our family the struggles she’s been having. She’s better now but still on an infusion pump for nausea.
We’ve been talking for a couple of weeks about how she would make her big announcement. Since the pump is rather obvious, she had me call her when everyone was here so she could come in last with her coat on. Then she presented a special Christmas present to my parents (her grandparents). It was an ornament to which she had affixed a picture of the baby’s ultrasound scan. It took them a minute to figure out what it was, but when they did, everyone was very excited. It made the day extra special, and Lynn was able to be there for that.
He also managed to eat a pizza specially made for him by our church friend who cooks his gluten-free diet entrees. Often, when he’s this tired, he cannot feed himself, but he doesn’t want me to feed him in front of everyone. The pizza was the perfect solution. Because he could hold the slices, he was able to feed himself successfully, plus since everyone else was also eating pizza, he fit right in. (Besides that, the pizza they made for him was wonderful!)
Right after lunch, the family gets together to play games. It’s a way for all of us to be together and share in an activity of fun regardless of the age of the players. We divide up into teams and have a lot of good-natured competition. Once we started the games, though, Lynn had to lie down. He was absolutely exhausted. I put him to bed and kept the baby monitor close so I could hear him when he needed something. For the rest of the day, I divided my time between taking care of him and coming back to the party. Even when he woke up, he was feeling too bad to join back in. I attached him to his peddler and would come back about every twenty to thirty minutes to make sure he had what he needed, give him either hot tea or cold water depending on what his body temperature was feeling at the moment, and cathing him since he was drinking so much. He was very disappointed but felt so terrible that there was no way for him to join in.
Overall, this year’s gathering was better for him than last year’s by far, but once again, he wasn’t able to really fully participate… and neither was I. I’m fortunate that my family just steps in and picks up the slack. They put the food together and set everything out. They also cleaned it all up, and I came out of his room to a clean kitchen with everything put away. They really try to pitch in with whatever they can do. I really appreciate that because it allows me to also enjoy the time.
When you are a caregiver, it’s like when you have small children–you never really get time off except that with children, it’s a little easier to get a sitter. When the person you are caring for is 6 foot tall, weighs about 200 lbs, and can only do very limited things for himself, finding a sitter is not so easy. And while the person is an adult, you find that you watch over them in much the same way that you watch over a child. You are constantly watching to ensure they do not run into anything with the wheelchair; you anticipate what they need so that it’s within their reach, or you go get it for them, and you watch for signs of distress…are they warm enough? comfortable? do they need to go to the bathroom? did they get enough to eat? and on and on. I ate my meal standing up next to him so that I would be close in case of a problem. I also am always looking around to see if he has a pathway that’s big enough for him to get into or out of areas without knocking over something or someone. As a caregiver, you must always think ahead and plan for the what-ifs.
All in all, though, our family get-together was great. I had time with everyone. I managed to eat and snack and participate in the games. I managed to be both a part of our family fun and the companion to Lynn that he needed…so it’s all good. It’s different, but it’s good, just like so many other aspects of this condition.
I have three more celebrations coming up this week. On Thursday, someone is staying with Lynn while I go out with my staff for lunch to celebrate the season. Saturday night, our kids and their significant others will be here for dinner, and then on Sunday, Lynn’s family will be here for lunch. I am looking forward to it all and hope that you all will have similar good times and good memories.
Merry Christmas.
