My wife and I recently watched the movie, The Notebook. It is a very moving account of one person’s perspective of what it is like to live with and take care of someone with dementia.

(Spoiler alert!)

It is set in a nursing home and tells the story of a woman with Alzheimer’s disease who kept a journal/diary, a “notebook”, chronicling her life growing up in the 1940’s. The man Allie married, Noah, reads it to her in the hope that her memory of their life together will return. (It is not immediately apparent, at least not to me, that he is her husband and that the story he reads to her is about them.)

While the doctors there give him no cause for optimism, he continues reading to her; and indeed she will occasionally “return” for a short time – even playing songs on the piano from memory!  There is a scene where family members visit but she doesn’t recognize them.   Quite heart wrenching!

It raises some hard questions: Will my spouse eventually forget who I am or vice versa?

Why do some people get dementia and others don’t? 

Lastly, this is a movie about life choices. We find out that Allie, unlike her mother, chooses love and passion over money and security.

What does this all have to do with home care?

The story brings out just how hard it is to watch someone decline and try your best to care for them.  Noah did that job, 36 hours a day, until they die in their sleep together in each other’s arms.

In the end, at the final exam of life (if there is one) there is only one question: “How much have you loved?”  Allie and Noah passed with flying colors!!

Thought provoking and emotionally charged, this is a movie for the ages!

Please comment and let me know what topics are of interest.
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Thanks,
Chris

Families run the gamut for how much they want to participate in their loved one’s life as the end nears. During my initial home visit, I specifically ask families how much contact they want from the caregivers who are taking care of their loved one.

I hear everything from “don’t bother us, that’s what we’re paying you to do” to “call me every day with an update”.  Most times though, it is somewhere in between.  I also encourage family members to make unannounced visits to check up on the caregiver.  I also do this and have the caregivers keep daily “nursing notes” so visitors can read about how the patient is doing.

We make no judgment about the level of family involvement and try to accommodate their wishes.

At a minimum, someone usually needs to pay the bills every so often unless a payroll company or fiduciary is hired. Most other responsibilities can be outsourced or handled by the caregiver or myself. Toward the very end, some families contact hospice for help. They specialize in “palliative care” which means keeping the patient as pain-free and comfortable as possible. Hospice provides a team of professionals who interact with those involved in the home care in order to make the transition as smooth as possible. 

In conclusion, family’s can be as involved as they wish. Those who serve seniors need to be aware how difficult it can be not only for the ailing senior, but for those around them who have their own set of needs, emotional and otherwise. Caregivers need to understand their job is to support and assist family members as well as their patient.