Sunday, June 14, 2009

A Caregiver’s Dilemma: “Until you walk in my shoes, you’ve never walked before.”


So my dilemma as a caregiver is how can you get these relatives to understand that until they walk in your shoes then they have never walked before?
By Deborah Ann Tornillo

I find myself once again taking care of my husband, who was diagnosed several months ago with Adenoid Cystic Carcinoma, a rare form of cancer. He is currently receiving radiation treatment, which is taking its toll on him. He is unable to eat solid food for it just comes right back up and has only just recently been able to tolerate a liquid diet.

He has lost 25 pounds in three weeks.

He has lost his hearing in his left ear since it is “ground zero” for the radiation.

Two weeks into his treatment he lost his taste buds. For the last seven days he has had a fever over 103 degrees, but yet the radiation oncologist does not know why.

My mother and father passed away two years ago with the diagnosis of Alzheimer’s. I was their primary caregiver.

My world stopped around me, because my primary focus was to provide them with the best possible care during their last years of life. My agenda was their care and that meant being with them 24/7, providing whatever care possible to just make them feel comfortable, providing them with the kind of care to help them maintain their dignity as a human being.

After their death I wrote a book “36 Days Apart” to honor my parents.

It was also excellent therapy for me. I was asked by a reporter just the other day what sacrifices did I make as their caregiver. And, as I told the reporter
there were no sacrifices, because a caregiver doesn’t look at it that way. My focus was providing them with dignity, respect, compassion and the best possible care available.
I reflect on those times now that I’m taking care of my husband and I question only one thing and that is “the agenda of everyone else.” What true help and support as a primary caregiver do we get from our family and friends?

There are the relatives that are more interested in their inheritance, than they are about helping.

There are the relatives that tell you to “hang in there.”

There are the relatives that tell you that you need to walk away and take a break, but yet they don’t offer to come and sit next to their loved one and care for them day-in and day-out like you have been doing.

There are the relatives that are in denial and want them to hurry up and get better and give their advice about how they should do that, but not once offering to come and sit next to their loved one and care for them day-in and day-out.

So my dilemma as a caregiver is how can you get these relatives to understand that until they walk in your shoes then they have never walked before?

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Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 600 articles with more than 11,000 links on the Internet. Bob resides in Delray Beach, FL.


More from the Alzheimer's Reading Room

Deborah Ann Tornillo chronicles the time spent taking care of her mother and father, both of whom were diagnosed with Alzheimer’s in February 2006.



36 Days Apart: A memoir of a daughter, her parents and the Beast named – Alzheimer's