“…joy is greatest when the people around us are healthy and like their lives and future. But for the rest of us in caregiving roles, the holidays can be a time of great frustration …”
Because I am a caregiver I spend time with both the able bodied and those who can no longer care for themselves. I feel and experience both worlds.”
Patrick Leer wrote these words in 2004. We lost Patrick, our MultipleSclerosis.net blogger who represented the caregivers of people with MS, this fall to cancer. Patrick is gone, but his message carries on through the words of his blog, CaregivinglyYours. Patrick began his blog long before blogging became the thing to do for most of us, and recently I was reading some very early entries he posted.
I am fortunate to have a partner on this journey, and we participate together as equally able-bodied but aging husband and wife; we both recognize how quickly this can change and one of us might become dependent on the other for care, and that is part of what attracted me to Patrick’s words when we first met online a few years ago. The code of honor and vows for better or worse still means something to many of us, and that was demonstrated and lived by the Leer family. Patrick was willing to share the real picture of caregiving and not just the rosy ‘we’re in this together, let’s all hold hands and it will be ok,’ version that is so often portrayed. Life is never that simple, even without a chronic disease like Multiple Sclerosis.
The struggles with the added demands of the holidays and the commercialism of Christmas brought out some of Patrick’s best writing, although it didn’t paint a pretty picture and he never strayed far from the conflict he lived with.
“As a caregiver/spouse/single parent your world is already economically challenged, time challenged, and emotionally challenged.
I don't believe it’s that people are mean spirited. The able bodied are basically clueless.
It’s a fine line that separates Christmas from being a ‘family’ holiday or gasoline on a fire.”
Patrick’s insight makes me pause and consider where I am now as I enter another season of Christmas – which world do I live in – most probably it would be among the disabled on the fringes of the able-bodied population. It takes me longer to do things, and shopping and baking no longer give me great joy because it usually leaves me worn out. I find it more difficult to visit in large crowds with my extended family - the extra stimuli seems to crank up my nervous system giving me that uncomfortable twitchy feeling that no one else can see.
I guess the label doesn't matter, because I will still be in the group that knows all too well the potential hazards of the holidays; exhaustion, fatigue, credit card debt and too much eggnog indulgence are just a few of the looming holiday pitfalls. Gathering with the family, and living up to the expectations for the holidays often falls short in time, energy and meaning, but more so because of my own expectations than those of others.
There will be fewer presents to unwrap this year and the bags of flour and sugar might remain untouched – cookies still taste good in the springtime when I might feel like baking, again. It might be Christmas Eve before we get a tree decorated but I won’t be pushed. Some traditions might be replaced by new ones.
"Holiday seasons are tapestries of memories. Good, and the not so good, are interwoven. This 2004 patch feels like it has been added with a jackhammer." -Patrick Leer
I want this holiday to relax and enjoy the quiet of the season. I want to pace myself so I won’t be torn between the two worlds that Patrick often wrote about. I want to add to the tapestry I have been weaving and the only holiday fires I hope to experience this Christmas will be the yule log burning in my fireplace.
Wishing you peace,
Does your employer provide workplace accommodations due to your MS?