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Looking at Caregiving by Amy Riedel

10.17.16 | Love | Care | by Amy Riedel

    “Have you ever tried standing between two mirrors? You should. You will see a long line of shiny mirrors, each one smaller than the one before, stretching away into the distance, getting fainter and fainter so that you never see the last. But even when you can’t see them anymore, the mirrors still go on. They are there and you know it.”
    - E. H. Gombrich A Little History of the World

    This passage captured my attention recently while reading a book called “A Little History of the World,” which I highly recommend. It offers what seems to me to be a great analogy for caregiving in the sense that standing between two mirrors, with one in front of us and one behind us, gives us a sense of the long progression of life that existed before us as well as the succession of people we will help shape in the future. It speaks to our inheritance from the past as well as our opportunities going forward. Seeing ourselves as part of this continuum of life enables us to see caregiving as part of a sacred trust.

    If only it was that easy. Importantly, the analogy also illustrates another aspect of caregiving that is much harder and that is the isolation that can often accompany the job. When we are standing alone between the mirrors, we can feel isolated and overwhelmed. We can feel that no one has ever faced these exact circumstances and that we are not entirely up to the job.

    Many of us who have been through the looking glass, who have experienced the privileges and pitfalls of caregiving, can relate. However, as Pastor Chris has said recently, we can choose to look at caregiving as something we have to do or as something we get to do – and he is so right. So here I will look at caregiving as something we get to do, and also attempt to share my thoughts on the experience as I lived it with my own parents, as limited and imperfect as it was.

    Of course, I would ideally like to get my parents’ feedback on how they saw their world change as their illnesses progressed. What gave them the most comfort? What could have been handled better? One major lesson learned for me was that we can and should be proactive in initiating conversations about finances and healthcare ahead of time. This is an exceedingly difficult topic to broach but critically important before the onset of an acute situation.

    In retrospect, I discovered that both of my parents fought doggedly to remain independent and self-sufficient as they struggled with declining health. They covered up their infirmities quite remarkably until they could no longer be ignored. Their reserve and determination was admirable but my first piece of advice to adult children who are noticing changes in our loved ones would be to question authority (gently). Of course, we must be guided by our parents in this. Their dignity must always come first but, at some point, larger issues such as driving, meal prep, home maintenance and safety come into play. Something as simple as their usual medication schedule can easily fall by the wayside as medical problems snowball. In fact, medication management is one of the most challenging aspects of aging and caregiving.

    For example, a recent study has found that the non-adherence rate with diabetes medications climbs to 50 percent after one year. That means that 50 percent of patients are not being appropriately managed for their illness and the implications can be staggering. My sister and I saw this (after the fact) with my Dad, who unintentionally comprised his own medical routines and schedules as he focused on caring for my Mom. He suffered serious health problems as a result. Soon, both he and Mom needed round-the-clock care. When we step in, and when our parents are willing to begin letting go of the reins are some of the thorniest issues we face as adult caregivers.

    Secondly, be prepared to be rebuffed. Of course, this goes hand in hand with the above. I emphasize it only because I wish I had been more persistent early on. As children, even adult children, we want to please our parents and it can be easy to take their assurances of their well-being at face value. In addition, mentally prepare for the fact that this journey will not follow a straight line. Expect ambiguity and uncertainty - one day your loved one may want help and another day they may refuse it - and it will be far easier to deal with when it comes.

    Thirdly, assemble a team and find resources. One of the best phone calls I ever made was to our local Council on Aging. I was able to make an appointment with an elder care specialist, who put me in contact with a whole host of experts including a gerontologist and an elder care lawyer, who was helpful in mapping out the financial side of the equation. Once again, I cannot emphasize enough the importance of knowing about your parent’s financial situation ahead of time. It is the last thing you want to think about at a time of illness, so ensure that someone you trust is firmly in charge beforehand. Knowing about Medicare, Medicaid, hospice, assisted living, home health care and VA benefits, etc. is especially helpful. Free apps such as CareZone, which organizes medical information can be extremely helpful. Books, blogs and columns can be wonderful resources. I learned much from a blog in The New York Times which is now a twice monthly column called, “The New Old Age.” Doctor Radio on Sirius XM has a Healthy Aging show that is educational and informative. Try as much as possible to get all this groundwork done before it is needed, including having an understanding of your parents’ wishes for their care if and when home care no longer suffices.

    Fourth, find comfort in routines that you and your loved one can share. These can provide structure and respite in the midst of a rapidly changing landscape. For us, meals taken together, mini golf outings and beauty days took on special meaning. I found that as my parents’ illnesses progressed, they faced loss on a daily basis – loss of independence, of function, of place, of companionship. The routines were something unchanging for the three of us to hold onto and we clung to them as much as we clung to each other. Remember the simple value of touch and the spoken word. When other things are being lost, they grow in power and importance. Sometimes, just sitting with another person in peace and with an open heart is all that is required or needed.

    Fifth, practice self care. Like the routine safety advice offered by flight attendants, we must place our own oxygen mask on first. We cannot help others if we are depleted. Do all that you can but not more than you can, and rely on other loved ones for support whenever possible.

    Finally, take comfort in the fact that you are helping more than you can ever know. In the thick of things it is extremely difficult to realize this because problems can seem to regularly dwarf solutions and those feelings of isolation and inadequacy can easily come into play. My mother lost the ability to speak about 18 months before she passed away but one of the last things she said to Dad in my presence was that she marveled at how I “was doing everything right.” He responded by smiling and softly saying, “I know.” Despite the fact that I felt I was doing nothing right, their words lifted me and helped me at a very low point in our journey. Similarly, as I picked up an old notebook to begin writing this article, I found a “to do” list of mine relating to Mom and Dad’s care. I hadn’t seen it in nearly five years but I felt my parents’ presence, reassurance and gratitude in that moment. Whatever we can do, I know that God is with us, saying to us each day, “Well done, good and faithful servant”. He is guiding our decisions and giving us the strength to do what we can. As Mother Teresa has said, in the end all that is truly necessary is that we “do little things with great love”. We can ask no more of ourselves or of others. Like the distant mirrors in the book alluded to at the beginning of this article, God may seem far away but He is there and that is where our power lies.

    Written by Amy Riedel, sister-in-law of Pastor Chris Riedel, experienced caregiver, communications consultant and a museum trustee. She is a New Yorker by birth, met her husband at the University of Virginia and, together, they have 4 children. She lives in the Boston area.