Christmas is a wonderful time of year, full of fun, excitement, and family gatherings. For weeks beforehand, I spend time decorating, planning, anticipating the good times, and envisioning the perfect holiday. Like so many dreams, reality is rarely the picture-perfect vision that I have in my head. That is particularly true now that MS is part of our lives.
Lynn and I have three big family get-togethers at Christmas—my parents and siblings come the week before Christmas, our kids come Christmas Eve, and his family comes Christmas day. Each is a wonderful time of creating memories and eating too much food. Even though these times are fun, they are also very challenging.
Holiday celebrations are always held at our house since Lynn’s wheelchair cannot enter anyone else’s house in the family. Even though we often order pizza or one of the other family members will cook, a lot of preparation is still required to host a gathering. Everything takes more planning, time, and flexibility if you’re hosting the party at your house. There’s the need to buy and prepare some, if not all, of the food, clean the house, and decorate (or make everything look festive). When everyone gets there, you help make your guests comfortable, assist those who need to heat up items or put out food to do so, make sure everyone has what they need to eat the feast (the fun part), clean up afterward, and put everything back into its original place. Even if you and your family are healthy, hosting a party at your own house is tiring. If someone in your family is not healthy, then it’s exhausting.
Planning:
The menu is usually based on what will appeal to most participants. However, that does not always fit in with Lynn’s diet recommendations. He eats a diet that is gluten and dairy free, with no grains, only grass-fed meats or poultry. How many parties have you been to lately that served only fruits, vegetables, grass-fed meats, or low-mercury fish? In planning his menu, I try to get something similar to what others are having so he does not stand out and will feel he is a part of the celebration along with everyone else.
After selecting the menu, I move on to how it’s prepared for consumption. Finger foods are best followed by items that can be stabbed easily with a fork so that they stay securely from plate to mouth. He does not like to appear ill or needy in front of others, so he does not like to be fed. He also plans to eat only a small portion of his meal while the others are also eating so that the process of eating does not wear him out too much, and then I feed him more afterward away from watchful eyes.
The other part of planning is in determining the seating arrangements. His power wheelchair takes up a lot of space, especially if he has to tilt back to help his balance while sitting up so long or if his legs need to be elevated due to aching. Therefore, it means his spot at the table is either at the front end or on the side, allowing him to carefully drive up to the table. He can’t sit at the table to eat because he lacks the strength necessary to lean toward the table. Sometimes, he’s near the table but back from it. Wherever he ends up, he’s an obstacle to those coming in or out, so we also have to consider “foot traffic” around him. It can be a challenge to get food to and from the table, get everyone seated, and manage the flow of people in and out. Even when we have too many people to sit at the table, it takes some creativity to help him participate in the mealtime activities, but we manage.
Time management:
Doing practically anything around our house that takes more than fifteen minutes to accomplish has to consider interruptions. In addition to MS, Lynn has hypothyroidism, so he battles with fatigue and being cold. He drinks a lot of hot tea to keep warm; if you drink it, you know it functions as a diuretic. I have to intermittently catheterize Lynn to empty his bladder. Most days I do that 15 times a day but I’ve been known to have to do it as many as 23 times. That’s a lot of interruptions, so I have to consider the timing related to food preparation to prevent food from burning (though that still happens quite often). When I get called away from what I am doing, I can expect to be away for at least 15 minutes, so I also have to consider that.
If I run out to the store for a hot minute, I usually insert an indwelling catheter just in case of an unexpected delay. Can you imagine what would happen if I was only going to be gone 15 minutes but got delayed two hours instead? It could happen… traffic back up due to a car accident; my car won’t start; I get hurt and can’t drive, etc. Even though it’s not likely to happen, we can’t take that risk because I can’t call a neighbor and say, “Hey, would you mind running next door and cathing Lynn for me?” Yeah, I don’t think so….
Flexibility:
Why is it that if you have something planned to do for a long time, something will happen on the big day that makes participating in that plan more difficult? I usually get to bed rather late the night before an event, often only getting maybe five hours of sleep before I have to get up. That means I’m dragging when the alarm goes off and have difficulty keeping on track time-wise. Plus, just like a baby who always fills his diaper just before Mom is ready to walk out the door if you’re caring for someone who can’t take care of their own elimination needs without help, you can count on the need for a bladder to be emptied at the last minute or the bowel elimination routine not to go well. There’s also the likelihood that he won’t feel well.
For Lynn, not feeling well is almost an everyday occurrence either due to the Rebif he takes as his MS drug, the increased machines, and depression brought on by high or low atmospheric pressure changes, the hypothyroidism that makes him feel like he has been drug 30 miles down a train track; or any one of the other things that impact his bodily functions. Therefore, if I need to be available to prepare for house guests, I can expect a tug of war between my internal hostess voice saying, “You have to put the meat on to start cooking,” and the caregiver voice saying, “He’s miserable. You can’t leave him to fend for himself. He needs you.” So, assuming I have “superwoman” abilities, I used to try to do both. Now, whenever I can, I ask someone to come at least an hour earlier who knows how to care for him or what to do in the kitchen. That allows me to devote my time to the job I need the most without ignoring the other one.
Our guests have also learned that coming to our house means being flexible. The meal will not be on time. I often will not be dressed up. Lynn’s participation will likely be in short periods of time with many disappearances throughout the evening. They may need to fend for themselves often, so they must “make themselves” at home. There have been many evenings when Lynn “crashed” without much warning. He gets that pallor, sunken-eyed, slump appearance, and I know I better get him back to his room right then for a nap or get him hooked back up to his peddling machine, which soothes him more than anything else we can do for him. At that point, usually, others notice the change, and more often than not, there’s a general decision that it’s time to go. We yell, “Thanks for coming! We love you,” as we head down the hall to his room, and once I get him settled and come back to the front of the house, it’s quiet with almost everyone gone. Then, I get busy cleaning up and putting back into place whatever was left for me to do after the party’s over.
Even so, with all the work, frustrations, and disappointments accompanying any family get-together, I realize our challenges may differ from others, but everyone’s holidays are like this! Rarely with a special event is everything smooth sailing and tension-free. That’s why you hear everywhere you go during the Christmas season, “I love the holidays, but I can’t wait for things to get back to normal.” So I guess you can say we’re as normal as the next family….
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
