The Unseen Life of the Caregiver

This role can be quite stressful when chosen as a paid vocation. Even more extraordinary and overwhelming is the case when the role is not chosen, but given to you by life circumstances. This is the complicated situation for many of our remarkable caregivers at The MDA/ALS Center of Hope. Your tasks are many, your lists are long, your time is short, and yet your strength appears unending. However, we know this appearance may not be your reality. Truer may be an experience of physical, mental, and emotional exhaustion.

We want to offer a few reminders below to help offset some of the potentially adverse effects of caregiving. Some of the ideas may seem unrealistic in your already busy day and may be easier said than done, but often with some willingness, creativity, and collaboration, helpful solutions can be found.

Balance may be an Illusion - Life as a caregiver is continuously in flow like a rollercoaster or a wave….or like a tsunami even. Try to ride it as best you can - rolling with it rather than fighting against it, yet not being rolled over by it.

Take a Break - This could look like 10 mins. here and there throughout the day, two hours out of the house, or a full weekend/week of respite care. Whatever you arrange, try to use the time away for you to rest and recharge - not for tons of other work or chores, if possible.

Delegate - No one can or needs to do this alone. Which of the tasks on your list could be outsourced to or shared by others? What resources are available for help - meals/cleaning/care/etc. Share the care to lighten your load.

Care for You - most important! Caregivers often do not think of putting their well-being first on the priority list, or even second, third, or fourth on the list. Taking care of yourself may become one of the last priorities if your loved one's needs are significant. The truth is, no one will benefit if you are not well….especially YOU and your loved one. Try to see your doctors when needed, find ways to manage/release negative emotions, ask for and accept helpful support, and try to get adequate rest, nutrition, and exercise.

Cherish the Moments - Try as best you can to find some levity in and savor the moments of mishaps, the blunders, the connections, the laughter, the tears, etc…..because memories are being made. We all really can choose what we want to think about a situation and how we want to react; these things are within your control.

Caregiving is not easy by any means, and we realize that trying to implement the above strategies may also seem difficult. Please reach out to either Mary Holt-Paolone (Mental Health Nurse), Kelli Smith (Clinic Nurse Coordinator), or Latoya Weaver (Patient Services Coordinator) at The MDA/ALS Center of Hope for more support and help with brainstorming ideas to ease your situation. We are here and want to help.

There are not enough words of gratitude and honor to fully express our deep respect for the sacrifices made and care efforts given by our pALS' loved ones every day. As National Caregivers Month winds down, we celebrate YOU, our caregivers, and we sincerely thank you from the bottom of our hearts for all you do.