Are you a “Caregiver” or a “Care Partner?”
Written by: Lisa Bricker, Co-Founder of Alz Across America www.alzacrossamerica.org
There are many people in our society that are caregivers because they truly have a passion to provide care for those in need. Many have chosen to make their living this way. I admire, salute and respect these people. I believe that they have angel wings and a very special purpose on this planet.
However, that is usually not the case in caring for a loved one and in most circumstances; the need comes on top of our day job and is not a paid position. Memory Loss usually happens over time, and you will hear me say over and over: “there is no road map on this journey” and there is no predictable pattern to follow. It can come on quickly or very slowly, each person’s situation is different.
The journey of living with someone with Memory Loss is a random and challenging trail to traverse. Our daily lives become unpredictable and it can uproot the delicate balance of our lives. Everyone’s experience and family histories are different. The dynamics of each relationship are different, but the one common denominator that we all have in providing for our loved one is that we need to take care of our own well being first. The metaphor of being on an airplane in an emergency with a child is so true: “If we don’t place the oxygen mask on ourselves first, we won’t be able to help anyone else.” It’s also easier said than done. Taking care of ourselves is a common topic in our support group and there is never an easy answer and many times, we say “yeah, right”. However, it is still our responsibility to care for ourselves and those around us. After all, the best medicine is to stay healthy. I have been the daughter of a father with a terminal illness, I have been the daughter of a mother with vascular dementia (small strokes in the brain) and I AM now the wife of someone who has been diagnosed with Alzheimer’s. As a daughter of someone who had dementia, the role was vastly different than having a spouse with dementia. As difficult as it was, the role to become my mother’s caregiver was clearer for me. I remember saying to myself, “Okay, I need to be the parent now and you are now like my child”.
When your life partner has Memory Loss, it is sometimes just plain confusing and difficult. The person that has been your friend, partner, lover and confidante is no longer available the same way they used to be. A strange feeling of loneliness can come into play because you just can’t have the conversations that you used to enjoy together. Those with Early Memory loss begin to lose their critical thinking skills and their executive functions (such as the ability to plan ahead or make decisions). Many of the conversations we have need to be repeated over and over again. I call it the new version of 20 questions; the same two questions 10 times. It can be just as frustrating for Gary as it can be for me. I have learned to just let it roll, but we all have our moments! It certainly helps to be patient, loving and kind. It also helps to keep your sense of humor!
I’m going to introduce the term Care Partner to see if it is a role that may fit for you. Please feel free to engage in the following exercise so you can “try on” both roles:
Take two blank sheets of 8 ½ x 11 paper. On the first sheet write in large letters “Caregiver” and on the other write “Care Partner”. Place both sheets of paper on the floor about 18 -24 inches apart. Stand and look down at the first sheet of paper and notice how that feels, take it in. What do you notice? Take your time. Now move over to the second sheet with the words “Care Partner”. Notice if there is a difference in how you perceive the two terms.
The Alzheimer’s Association uses the term “Care Partner” and I have absolutely loved the term since the moment I first heard it. It’s a word thing for me and it literally feels different if I refer to myself as Gary’s Care Partner. I see it as an empowering metaphor and I use it to self manage my perspective to see both of us as “whole and complete”. It is a very subtle distinction in how I view my role in our ever shifting relationship. Try it on and see what you think. For me, the word caregiver isn’t right for me in this role with my husband. The word caregiver itself makes me feel more depleted; as if I could give and give without being able to care for myself. As his partner, I feel that I can keep both of our interests in better perspective and I am compelled to meet other care partners that share this journey. I am Gary’s Care Partner and I have chosen this role. We may not have chosen these circumstances, but we can make choices that will help us to remain as healthy and whole as possible throughout this journey. Caring for a loved one can be a tricky role. How do you see your role? What choices are you making for yourself? How can we help each other?
We encourage you to make a charitable donation to Alz Across America at: www.alzacrossamerica.org
Lisa and Gary Bricker’s story: “We are not alone.”
Every 67 seconds someone develops Alzheimer’s disease and my husband Gary is one of them. We haven’t even begun to see the tip of the iceberg of what havoc and impact this disease will have on the growing number of “us” Baby Boomers, for those diagnosed, their care partners and families. The emotional, mental, physical and financial impact can be a living nightmare and I know firsthand that we are not alone. Living with any type of dementia is a unique type of loss. It is very isolating. It is an ambiguous loss and each day has no closure. However, there are ways to find support, to cope and live successfully.
Gary was diagnosed with Alzheimer’s in December of 2012 at age 63. I can look back as far as 8 years and realize that I was noticing the subtle and elusive signs and clues back then, but we thought it was all due to stress and going through an extraordinary amount of loss and change. Gary lost 2 jobs in 2 years and as a result we moved 4 times in 3 ½ years, are no longer home owners, have gone through half of our retirement savings and continue to do so. Our youngest son was tragically killed by a hit and run driver in March of 2011. By the time we started connecting all the dots that led to his diagnosis, our relationship had deteriorated to the verge of collapse.
Gary and I are passionate about bringing purpose and meaning to what is happening in our lives by sharing our story and our experiences in order to help others who are impacted by Alzheimer’s disease and other forms of dementia including brain trauma.
