Musings on Mortality: Caregivers need to be realistic about situation

I was lucky. I cared for my husband in his dying time for only nine months. He died at home in hospice, not a day too soon. He had enough time to put his affairs in order, say his goodbyes, conduct his last concert, and let go of life and of us. I loved him so much that all I wanted was for him to die, sooner rather than later. I could not bear to have him riddled with cancer for another second.

Most caregivers are not that lucky, especially when the diagnosis includes dementia. According to a study done by Caring in the U.S. 2015, "Approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months


Thanks to advances in medical technology and treatments, people are living longer; and, with this longevity comes an increase in dementia. Dementia is the umbrella term for several diagnoses, including Alzheimer's and Lewy Bodies dementia. Dementia is caused by a brain disease and symptoms include memory disorders, personality changes and impaired reasoning. Over time, the identity of the person can melt away to be replaced with behaviors that can be hard to control, manage and live with, for all concerned.

I will address one of the many emotional challenges caregivers experience as a result of the enormous stress of taking care of a loved one day in and day out. While I focus on spouses, this is true for a child taking care of his or her parent(s). For most married couples who have taken their vows seriously, it is not an option to not care for one's spouse at home. Of course, if there is an extended family involved and/or enough money to hire paid caregivers, the daily stress is a lot less than for an aging spouse with full responsibility and with little familial or financial resources. After years of caregiving, the looming question becomes, "How much longer can I do this?" And, the accompanying emotion is one of guilt at the very thought that putting one's spouse (or parent) in a facility is equal to abandonment and selfishness.

One caregiver I spoke to referred to this as her "guilt brain." Her spouse is verbally abusive, threatening and confused, or better stated, his disease is. She had been taking care of him for years. She often feels unsafe, but he has yet to come at her with a knife. She seems to be waiting for utter depletion or a need to run for her life before admitting that the time has come to find a suitable residential setting. The additional agony is that the facilities that she knows about are substandard. There is also a concern of spending down and going through all of their money for him to be placed.

In addition to feelings of guilt, caregivers have unrealistic expectations of themselves. Again, I focus more on those who do not have familial and financial support. Unless one has been a caregiver before, the first time is one for which no one can be prepared. It requires skills and stamina that come with the job. It necessitates juggling one's work and means of income with caring for others (children and a spouse), and finding, god help us, time for oneself.

It is paramount to find the time for oneself and to remember that one's own life is equally important as the life that one is caring for. Feelings of guilt can negate this. Feelings of guilt can make a caregiver blind to the reality that the time has come for their loved one to no longer be cared for at home. Ultimately, it helps to remember that each of us has his or her own fate.

Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at


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