Caregiver Perspective: Adapting Celebrations to Meet Our Needs

Finally, all the Christmas decorating is finished! What usually takes me two or three days has taken me twice that long. But then, almost everything I do now takes twice as long as it did in the past – before my spouse was diagnosed with MS.

Learning to give myself more time for tasks

One of the challenges of being a caregiver is to learn to over-estimate how long something will take to accomplish…like decorating for Christmas, for example. In the years before MS was a constant presence in our lives, I would work steadily all day putting away what was usually on a shelf and setting out something festive. I would typically get started around 10 a.m. and work straight through till 10 or 11 p.m., just taking breaks to eat. True, I was exhausted by the end of the day, but I had the next day to rest up so no big deal, right?

My mornings are devoted to caregiving

Now, I still work straight through, but I am interrupted every hour, at least, to attend to something Lynn needs. When I go to help him with whatever he has called me to do, it seems that he has an additional 4-5 tasks just waiting in the wings for my attention as well. To complicate matters, my mornings are dedicated to Lynn’s hygiene, toileting, exercise, dressing, feeding, rest, etc; all of which takes about three hours. I feel like I’ve put in a full day’s work before I ever get started on whatever project I had planned.

Projects are interrupted by attending to his needs

Nights are devoted to his nighttime routine – a bath or shower, clothing, toileting, skincare, snack, medication, etc; then I fix meals for the next day, take a shower myself, feed him dinner and get to bed around 2:00 a.m. Generally, I have between 1 p.m. and 9 p.m. to do projects as well as perform frequent catheterizations, nose spray (he has chronic sinusitis), two small meals, assistance in scratching an itch, changing a channel, correcting a problem with the computer, fixing tea, etc. So, you can see that what might be accomplished by the average person in two days takes four or more for me.

Why I try to keep the holidays alive in my home

Even though it takes more time, I try to keep the holidays alive and well in our household. People ask me why I decorate so much, but I really love the beauty of Christmas lights and decorations. It lifts my spirits to see all the nativity scenes, the multiple Santa figurines, angels, “snow” on all surfaces, and so much more. It reminds me of the joy of hope and the promise of new birth.

Reminders to enjoy the good times

It reminds me of the excitement of my childhood when I looked forward to Santa’s visit with much anticipation. I also love seeing my 18-month-old grandson discover all the animated stuffed animals that sing and dance, his curiosity about the lights and decorations, and the desire to see and experience it all, every minute during his visit. I love that “awe” of wonder and excitement. I expect that I find it even more exciting now than I used to because now I have so little time to participate in celebrations and with so many Christmas decorations around, I’m reminded to enjoy the good times with every step I take.

Decorating Lynn's room

The other change I’ve incorporated into my decorations this year that I haven’t in the past is decorating Lynn’s room. Because his spasticity is managed so well by the use of an electronic peddler, he stays in one spot of the house almost all the time. That location is our bedroom, and he is “stationed” beside the computer so he can write using voice-activated software or he can watch television when he wants to rest. So, this year, I bought him a small twenty-four inch Christmas tree that sits next to him, and I’ve put a wreath on the door directly across from him. I’ve also decorated his wheelchair with lights and a Christmas hat and scattered cedar-scented fragrance sticks throughout the room. It’s not much, but it allows him to experience the difference in the season.

Arranging celebrations around his schedule

One of the other changes we have made is where we celebrate family gatherings. Now, everyone comes here and we set up the arrival time to be after his routine morning activities are finished and he has had a chance to rest. I make his special meals similar to what everyone else is having and try to make sure he has items he can eat on his own because he does not like to be fed in front of others. I also watch him throughout the festivities to keep an eye out for signs of fatigue.

I'm glad that he is able to participate

He would push on to the point of exhaustion if I did not tell him that it was time for him to rest. All our families understand his stamina is taxed fairly easily, so they accept that he will need to come and go as part of the change in how we visit. I always make sure he has room to get in and out of an area with his wheelchair, and I usually excuse myself from playing games so I can fetch and tote to him or from him whatever he needs. Though I admit I miss out on a lot of the fun, I’m glad that Lynn is able to participate to the degree he does.

The joy of Christmas

Christmas season flies by so quickly; it’s here and gone in a heartbeat it seems. However, we’ve learned how to make it an inclusive holiday —me, Lynn and MS— and the joy of Christmas present.

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