A few years ago, I heard about a case of assisted suicide involving a caregiver and his wife. The case continues to haunt me; when it first received national attention, I diligently followed it. Recent articles and news shows about death and dying in national magazines, and on network television stations makes me believe it’s time to revisit the case.
A husband had cared for his wife, who suffered from Multiple Sclerosis. They married later in life, after she had been diagnosed. Her disease progressed to the point where she was confined to wheelchair and relied on others for personal care. Her husband was her primary caregiver.
As he told the story, she was despondent over her dependence on others and worried that she robbed him of a life free of burdens. They discussed at length her suicide. And, at her request, the husband concocted a terminal drink of medications. They chose a day to end her life–July 4–and at an appointed time, he gave her the drink. She died the next morning.
The husband was arrested, as he had made no bones about assisting in her suicide. But, as the case got more press, the story become more complicated. The niece of his wife insisted that her aunt did not voluntarily choose suicide–but that the husband manipulated and bullied her into believing that she–and her disease–had ruined his life. He choose July 4 as the day of her suicide because it would be the day of his freedom.
The husband kept a dairy which detailed his feelings about his caregiving role. In his diary, he expressed his feelings of intense frustration and anger; many entries contained hateful, hurtful, vengeful writings about his life as a caregiver.
But, as the story unfolded further, it seemed that the husband had plenty of help in caring for his wife–a home health aide at least five days a week, eight hours a day. His wife also attended aqua therapy daily, working out in the pool at a local health club with the help of a therapist.
And, much later in the story, we also learn that the laced drink did not end her life. Rather, the husband, after checking his wife in the early morning hours after her suicide attempt, found her to still be breathing. He then suffocated her with a plastic bag.
I want to emphasize that I believe this husband to be an atypical caregiver–I have yet to meet a caregiver who is not respectful, kind and committed to doing the right thing. But I believe this story is important to share, because it helps us stay honest and true to our caregiving journal.
First, I am reminded that not everyone is cut out to be a caregiver. And, the sin is not in the not doing, but in the not admitting. Recognizing that a term as a caregiver–no matter how short or how long–must end is a sign of strength, not weakness. Providing care when your body or spirit can no longer is an unfair jail term to sentence on both the care recipient and the caregiver. Alternatives are always available–and must never be forgotten.
Second, I believe this case causes us to pause and to ask ourselves some important questions:
1. Are we doing our best to provide the best care possible? Do we have physicians and health care professionals that respect the wishes of our care recipients–as well as our needs as caregivers? Can medicine or alternative therapies alleviate any discomfort or pain experienced by our care recipients? Can programs, such as Hospice, help? Facing care decisions and end-of-life treatment options is much easier if caregivers and care recipients are helped by a team of supportive health care professionals.
2. Do we judge a person’s quality of life based on our perceptions? To the husband, our care recipient had no quality of life. But to her niece, she was as full of life in her wheelchair as she was before her diagnosis. We’ll never really know how the care recipient viewed her life–and whether or not her husband negatively impacted her perspective. We all have the ability to adapt to our circumstances–chronic illness, debilitating disease, life-changing injuries. So, too, shouldn’t our opinion as to what “quality of life” is?
I believe the quality of our lives depends on the quality of our relationships–that as long as we are able to give and receive love and connect with another human being, we have a quality of life that should never be sacrificed.
I wonder how often society and its interpretation of “quality of life” impacts our roles as caregivers. It seems our society views the elderly population as has-beens. The decline in mental and physical abilities due the natural aging process is shameful, ugly, an affliction that must be hidden. It seems we are always fighting against nature–and trying to trick that natural progression of life–death.
3. Are we respecting the experience of death? Or, are trying to outsmart it? Watching loved ones suffer pain and discomfort can be tortuous. But, in trying to deny that experience, are we avoiding learning an important lesson about life–that living and dying go hand-in-hand? That rather than fighting the inevitable–the experience of death–we should welcome it. And, through that experience, we learn how important each moment, each day, each relationship, each friendship is. But if we fight it, we only make it more difficult for our family members to experience it and deal with it. Rather than accepting the experience, we choose to say, “No, this can’t be”, and only serve to enhance the pain and suffering of the care recipient.
The possibility is very real for all of us that a family member, suffering from a terminal illness, will turn to us and pose a question. How will we answer? I think that depends on how we view the health care professionals involved, our family member’s quality of life, and our comfort level with the dying experience.
How will I answer? With a loving, gentle touch that will guide my family member home.
YIKES! This story gets to the heart of my internal conflict. I am so afraid that my anger/frustration/resentment will impact my mom’s quality of life negatively–and that she will feel pressure to not be a burden on me. She will live smaller and less, to try to minimize her impact–which is not possible, really. I find the dynamic is entrenched: I am the person she loves & trusts most in the world and is most excited about and most loyal to, and for me, her situation is my nightmare. It doesn’t matter whether or not she’s receiving help at an Assisted Living facility or living in. It’s how dependent she is ON ME that does not change and is the most difficult aspect to bear.
We will never know exactly how this woman felt about her quality of life, her potential, her hopes and dreams. We also will never know what really transpired between husband and wife. I’m quite sure that if I was in this situation with my husband, whom I love more than anything on this planet, I would still experience intensely ambiguous and difficult emotions. We also don’t know the true motivations of the niece. (Is she lobbying for a share of the estate? For her own mother’s love? Did the uncle spurn her advances? Sorry I watch crime dramas continuously.)
But, this story gets to the heart of the Assisted Suicide dilemma. On one hand, I am all in favor of individuals deciding with their own free will to end their own pain and suffering. On the other hand, circumstances change. Technology and medical advances can reinstate quality of life and dignity, even when it seems all hope is lost. And–the biggest complicating issue of all: NO ONE LIVES IN A VACUUM. I could completely imagine a scenario with my mother where she would want to end her life because she felt pressure to do so, or she no longer wanted to be a burden on me–even though her health is stable and she’s got a lot of life left in her.
I shudder to think that I could be responsible in any way for her passing. And, therefore, I do the very best I can all the time. And I pray, she never feels my frustration and anger.