The Reality of Death and Caregiving

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by Ray Burow |

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Death is a part of life. True, but in the face of loss, that’s not very comforting.

Regardless of the circumstances, whether someone you love has been ill for a long time, passed away suddenly, or was burdened with dementia, the sadness that accompanies their passing is palpable.

When my parents went home, a friend lamenting the loss made a profound statement that still rings true to my heart. Having also lost his parents, he referred to the small band of adults gathered on our front porch as a group of orphans. He wasn’t wrong. Age doesn’t mitigate loss.

It doesn’t matter how old our parents were at the time of death or how old we happened to be. We feel like orphans when they leave us. Adding to the hard-knock blow of loss is what immediately comes next. Crucial decisions regarding our loved one’s remains have to be discussed, a caveat that underscores that life is unfair. It is perhaps the most vulnerable time of our lives and the worst possible time to make decisions, but we can’t put them off.

Hard decisions

Exiting the air-conditioned, overstuffed funeral home the morning after my mother passed away, I was confused. Having met with the funeral director, my daughter and I walked silently into the sun-drenched parking lot. Of course we were bereaved, but our consultation had also left me shocked and weary. Then, these words slipped through my daughter’s lips and broke the silence:

“Mom, Granny would not be pleased.”

That was the bit of clarity I needed to penetrate my vulnerability. Arriving back home, I called my siblings and made them aware of the situation, including the cost attached to caring for our mother’s remains. The funeral director had outlined next steps, which included an elaborate price tag.

Speaking about cost as it relates to your loved one’s remains seems morbid, but the reality is we’re challenged to do just that, and it reeks. We must not only choose a casket, but often receive an itemized, lined bill with prices attached to services.

Necessary business

Funeral directors, especially those who chose their profession to help people in their darkest hour, are necessary and appreciated. However, do not walk into a funeral home without the knowledge that it is also a business with expenses of its own. Most funeral homes are designed to look and feel comforting, with overstuffed living rooms, great crystal chandeliers, and heavy wood tables where the bereaved gather. Sitting with a representative from the funeral home around one of those tables left me feeling pressured and somewhat selfish.

Our mother had Alzheimer’s disease, and as the trustee of her will, I knew that her last wish when she was of sound mind was to leave the little she had left to her children. But having never been in such a situation before, and sitting there listening to what could be done one last time for my mother, I supposed the choices presented were final ways to honor her. Still, it didn’t sit well with me.

“Mom, Granny wouldn’t be pleased.”

Feelings lie

As estates go, my mother’s wasn’t great, but it was the last gift to her kids, and as it happened, totaled nearly the exact amount of money presented by the funeral home in an itemized bill. My daughter’s words tore me away from the false guilt I was experiencing. We had done our best to honor our mother when she was alive. We would continue to honor her in death and carry out her wishes regarding her estate, even if it appeared selfish to the funeral director.

Our mother had told us precisely what she wanted. Even with Alzheimer’s disease, she’d been explicit regarding last wishes. “I want to do what Dad did,” she said.

During his brief illness, our father made arrangements concerning his remains, totally removing us from the process. He decided to donate his body to science, and even arranged transport from the hospital to the funeral home and finally to the University of Miami’s Department of Science. He paid by check and sent the money to the proper billing agency.

Here again, he was saving us from making the hard choices. We simply followed his lead and Mom’s desire.

Final robbery

Alzheimer’s disease is a robber, and death is the final thievery. Don’t be victimized by your own guilt. You can make sound decisions regarding a loved one’s remains, even though it’s your most vulnerable time. Take a minute. Ask yourself: What would he or she want? The purpose and outcome of your decision is not to assuage your guilt. Guilt is an enemy that rears its ugly head in caregiving. A grief share counselor can help.


Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.


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