Caregiver Perspective: Holiday Preparations

Getting ready for the holidays at my house incorporates specific considerations that many families who do not deal with chronic illnesses do not consider as part of their preplanning task list. Since most of you readers have similar concerns, you probably know where I'm going with this but for new caregivers just starting to deal with the holiday season, here are some of the staging considerations that I do in advance to help the gathering go as well as possible.

Location, location, location

My family has one person (my spouse) who uses a power wheelchair full-time, another person who uses a rollator, and two grand-children who may or may not need the use of either a wheelchair or walker depending on how well they are doing that holiday. Not all of the homes in the family are handicap accessible, so usually, we gather at my house because I have a wheelchair ramp, a handicap bathroom, portable lifts in case someone needs lifting, and halls wide enough for moving around.

Another positive feature is a large porch for guests to go outside to cool off because we keep the house very warm for the special needs family members who cannot regulate their body temperature or have low hemoglobin which leads everyone else to feel slightly overheated at times (another item to have available: lots of ice and cold water to drink).

Special dietary restrictions

Check with key family members to see if there have been any new developments on the food restrictions list or food sensitivities front. Two children have autism and can't tolerate certain textures, flavors, consistencies, etc. Other members of the family have food allergies which we include on the "do not serve" list for the menu section. Therefore, our menu often has duplicate options such as both white and sweet potatoes and an assortment of other vegetables.

I also have available a variety of eating utensils and devices, as well as helping hands to assist in feeding or providing feeding support.

Who has been sick or exposed to illness?

Two of my family have conditions that make them very vulnerable to communicable disease exposures, including the common cold and GI bugs – whether the disease is active or incubating (gathering strength to make the person sick but the person doesn't show signs of disease yet). Therefore, we check with family members who work in public areas or have children in school to determine if they have been sick recently or exposed to anyone who has been ill. Based on their response, we assess the level of risk exposure and decide whether we need to ask them not to attend, have the family member at risk not visit, or is there a way to reduce the risk enough to allow everyone to attend without increasing risk of harm.

The day of the gathering

If we all attend, there are twenty-three of us in attendance. Of that number, seven have special needs related to chronic health conditions and five more have conditions that have intermittent flare-ups requiring special consideration, so we are very familiar with making accommodations and adapting at a moment's notice. Having a question such as, "Does someone have an oxygen rebreather?" isn't a show-stopper for us. No problem: we poll the group, find out who has one (usually someone does) and get them to bring it. If not, then we'll keep tabs on your O2 levels to make sure you’re okay and treat you or call for the paramedics if not.

Two of our family are nurses (including me), and one is an EMT with the local rescue squad. Each of us watches the others for signs of distress. We know what to do and take responsibly for each family member's needs regardless of "who they belong to." We let each other know if someone has something new and what to do if it flares, and we all work together to make the event a success. We are all a team from the moment we arrive till we leave, and each is thankful for the opportunity to be together to do so.

Thankful for our disability diversity

We are thankful for our disability diversity. All the children in our family (I have nine grandchildren) are growing up to accept those with disabilities the same as anyone else. My granddaughter brought me a picture last week of Lynn and me, and it was me standing by Lynn in his wheelchair. I loved that picture because it showed how naturally she just accepted his immobility into his lifestyle. We talk openly to them about MS and answer their questions; they ask tough questions at times.

I am thankful that we can talk and share answers so that we all learn how to adapt and accept the difficulties together. We show them how we adjust to the changes that happen when our bodies don't work the way they once did, and a person has to learn to do things differently. Our grandchildren get to see the impact a disability has on the life of a person who struggles with the change. They understand how it affects the person and the family.

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