Love and Loss: The Caregiver’s Lament
By Ronnie Biemans, Dec 16 2016 06:37PM
I recently visited my father-in-law who lives some distance away in the Southwest. During this visit I encountered the caregiver’s lament in a new way. My own father passed away at 93 after a very full and happy life. I experienced his aging process more intensely as he lived nearby and was more a part of our daily lives. Nevertheless, each experience has its tender poignancy. Aging inevitably means loss in one way or another as time wears upon the body and mind. What we gain is often less obvious.
I hold a special place in my heart for my father-in-law, Bill, a person who has always been very thoughtful and giving toward me. For years, on my birthday, he would specially send several books for me to read. As an avid reader, I loved this and was particularly touched at the selections he would make. Sometimes he would ask me directly what books were on my list, and other times he would do research and come up with choices on his own. When he made his own choices, I would gain some insight about who he thought I was and what he thought my life might be like. I got a real kick out of this as mostly he was quite perceptive. One year he chose I Don’t Know How She Does It by Allison Pearson. When it came out in 2002, this book was described as “The national anthem for working mothers.” Pearson wrote in a very funny style describing her main character “Hedge-fund manager, wife, and mother of two, Kate Reddy manages to juggle nine currencies in five time zones and keep in step with the Teletubbies. But when she finds herself awake at 1:37 a.m. in a panic over the need to produce a homemade pie for her daughter’s school, she has to admit her life has become unrecognizable.” While Reddy was not exactly who I am, the reality of being torn between the work world and the mommy world was all too real. My two sons were ages 13 and 8 at the time, and I was torn between my involvement in middle school, elementary school and the demands of my full time job. Bill got it. He understood my life even though I only saw him once a year, sometimes less frequently than that. He didn’t have me at hello, necessarily but he did have me when he started the book giving tradition. Somehow he kept this up remembering my birthday in this special way for many years.
When my husband and I visited recently, we were painfully aware that Bill had experienced a rapid and profound decline in his cognitive abilities. He struggles to follow train of thought, is forgetful with no sense of time, and he is often confused. Having a conversation is often challenging. Bill is acutely aware of his decline which only makes the situation more painful for everyone. He has extreme anxiety and perseverates on his worries. Bill is a man who prided himself on his intellect and his ability with words, both of which are now severely diminished. His losses are a loss for everyone who knows him. His struggles are our struggles. His pain is our pain. It is difficult to bear witness.
When we arrived, we went straight to Bill’s home to see him. He was anxiously waiting for us, pacing the area around his apartment with his caregiver, Elsa. His face lit up when he saw us. He recognized us both and gave us a hearty hug, delighted that we had finally arrived. When we went inside, the reality hit us when Bill proceeded to try to be his old self: the host providing appetizers and cocktails. Only there were no appetizers and nothing to make cocktails. He rummaged around trying to find something to offer us, distressed that there was “nothing in the house”. We tried to reassure him and he grew increasingly unhappy and agitated. He repeatedly offered us this and that, whatever he could pull out of the pantry or refrigerator and finally, in exasperated sympathy, I accepted an ice cream bar so that he could give me something. Once the giving was done he seemed to feel better. I feel sad for Bill and for his loss of his old self, his previous lifestyle, his ability to be the entertaining host, his ability to take care of himself and others. He is now on the receiving end, and he finds it uncomfortable, mostly I think because he really cannot do for himself, so he has no choice but to accept help. It doesn’t really matter that we are glad to help or that after a long life of responsibility, he is due. It is humbling to accept help when we didn’t really plan on being humbled in this way, by the inevitable changes in body and mind brought on as we advance in years. Few of us actually make this choice of dependency in advance let alone accept that we need to do so.
There are lessons we can take from observing family members grow older and more dependent on the help of others. There are certainly some things I would like to do differently, and I hope I will remember to do so. Perhaps I can develop some wisdom, learn from others’ experiences, and put their suffering to good use.
Fears about Aging, Illness and Dying- Awareness and Acceptance
When we take care of our parents or witness their death, in addition to the loss of their presence in our lives, we also come face to face with our own mortality. Both of my parents are gone now. My mother passed away from stomach cancer when I was 16 years old and my father from congestive heart failure and old age many years later. My mother’s illness and dying were somewhat a mystery to me as I was shielded from most discussions about her health, and there were very few open conversations about her illness. In retrospect, I think my parents were not really aware of how serious my mother’s illness was until quite late. They didn’t even refer to the illness as cancer for years. I was devastated at her death which seemed so sudden and unexpected. No 16 year old expects to lose a parent. I was better prepared for my father’s passing. I could more easily accept his moving on, and the loss of his presence was not as painful. It somehow seemed natural that his life would end when his body got tired. I would like my life to come to an end after a full and active life with few serious illnesses and my cognitive abilities intact. If only we could choose! If only we could control how our lives end. Of course we cannot but there are some ways that we can make the process easier. The only thing we truly have any control over is our attitude and our response to what comes.
I hope to be more open with my own children about my health and aging than my parents were with me. Being aware of what is and accepting it is a powerful lesson to experience and share with them. I hope I can rise to the occasion with bravery and compassion. Sickness and death are just part of life. I would like to show them how to live life fully even while in the midst of difficult, challenging experiences. I would like to show them how to support us, their parents, as we age and they move into the caregiving role. There will need to be lots of serious, dedicated meditation ahead on my part to make this plan a reality. I hope I will also find some good humor as beauty fades and wrinkles emerge.
Preparing to Serve as Caregiver
Ideally, we prepare in advance for caretaking of an elderly family member. Before there is a need for increased supports we can have an open discussion with elders about how they want to live their lives as they age, and what their preferences are for care should they become frail and require support. An excellent source for planning is the Five Wishes format promoted by Aging with Dignity. Five Wishes is a document that, like other advanced directives, makes your wishes known ahead of time. It is unique among other advanced directives, however, because it addresses all of a person’s needs: medical, personal, emotional, and spiritual.
According to Aging with Dignity, the organization that created Five Wishes, the document lets your family and health care providers know:
1. Which person you want to make health care decisions for you when you can't make them.
2. The kind of medical treatment you want or don't want.
3. How comfortable you want to be.
4. How you want people to treat you.
5. What you want your loved ones to know.
Family members can decide what they can contribute, assessing what their talents are and what they are able to do given their emotional and physical health and capability, their proximity to their elder, and the nature of their relationship with their elder. If these conversations happen in advance, adult children have adequate time to prepare, rather than responding in a crisis mode. Tensions inevitably arise when we are in the midst of caregiving but these can be mitigated by honest, open communication before and during the caregiving years. Including all parties in important conversations and decision-making, including the elder person, from the beginning supports all those involved and is more likely to ensure positive relationships over time.
The Caregiving Relationship – Opportunity for Mending and Repair
Many of us have been blessed to have had a happy family life and good relationships with our parents while growing up. Regardless, when we move into the caregiver role, even those of us with the best childhood experiences and memories find that a strain has been put on the relationship. Resentments from the past come up or new resentments arise, as we find ourselves parenting our parents, telling them what to do and how to do it. Sometimes our parents are cranky, or worse, abusive. Sometimes their frailty and illnesses change their personality to make them unrecognizable or they no longer recognize us. If the strain is created by a past wrong on their part, can this be mended? If the strain is created by their current condition, can we find it in our hearts to be as compassionate as needed? Finding and expressing compassion and patience towards ourselves, our parent and our family members will go a long way to giving us the strength and wisdom we need to move forward. Caregiving can provide an opportunity to let go of the past and forgive, discover our own strengths, become more generous, move forward or create and discover a new relationship.
Know Your Limits and Have Some Compassion for Yourself
As we take care of our aging parents and others who need intensive support, it is crucial that we know our limits and take care of our own needs. Easier said than done. At times, the demands of caregiving combined with the responsibilities that we already have, can prove too much. So have some compassion for yourself, pay attention to how you are feeling and coping, and explore ways to make self-care and elder care possible. Fortunately there are numerous resources that can help you plan and prepare proactively. Here are a few of my favorites:
About the Author:
Informed by over 25 years of professional training and work experience as well as her many years of meditation and yoga practice, Ronnie Biemans, M.A., L.C.P.C., is guided by a core philosophy to focus on strengths, not deficits or pathology. By discovering, restoring and optimizing each person’s unique ability to thrive and meet the demands, of today’s fast-paced, stressful world, those who have encountered physical and emotional health challenges can discover ways to improve their lives and well being. Operating from her home office and in other community settings, Ronnie provides guidance and support to individuals, families and groups seeking to live healthy, balanced lives.