Nurses and (other) Caregivers recently published an article called, “What Nurses Wish Caregivers Knew“. It is the result of some interviews done with hospice and hospital nurses. While there are some nurses we have met, through our own work at Support For Home In-Home Care, that we wish were better educated, themselves, the vast majority are superb caregivers in their own right. So, when these veteran clinicians offer advice, we think it is worthwhile to listen very carefully.

There are six major points the nurses’ advice focuses on:

  • Aging adults are not children.
  • Look out for depression.
  • Recognize what your loved one has lost.
  • It’s important to keep moving. [This point is about ensuring that the
  • Assume that they can hear / understand you.
  • Everyone needs a break – even you. [This point is so critical, I want to quote a little bit more:] “It is this final directive—take care of yourself first—that many caregivers fail to honor; generally out of guilt or lack of awareness of the resources available to them. Caregiving needs to be a team effort in order to avoid burnout.”

In my mind, the first and third bullets are often linked. I have talked before about the way my mother expressed her frustration – and irritation – when my wife and I talked with my folks about our perception of their need for assistance to safely and happily live at home. My Dad absolutely got it. My mother’s response was, “Look kid [I was in my 50s 🙂 ], I have been a grownup for over 60 years, and now you are telling me I need help!?” With total respect for everything that she was and had accomplished in her life, the only answer I could give was, “Yes, Mama.” In my eyes, none of her essence or dignity or accomplishments were diminished by the need to get some support for Activities of Daily Living (ADLs) and Instrumental ADLs. Over time, she realized this, as well, but it was a struggle.

That struggle was exacerbated by what she had, indeed, already given up. With here arthritis she had lost a great deal of physical strength and mobility. She could no longer drive or take long walks with Dad – or even travel comfortably across the country to visit old friends, the way she had for many years. She was suffering from the beginnings of cognitive impairment. It was just enough for her to recognize what was happening – and to be frustrated and scared as hell about it.

All of this has made me very impatient with a philosophy we have seen presented by some “experts”, under the catch phrase “Parenting Your Parents”. The simplest way I can put it is, no, they are our parents, period. They raised us, we will never be raising them. They carried the burdens of doing so. Do not confuse the help they need now with being children. It is insulting.

One item on the list really merits clarification: “Assume that they can hear / understand you.” Certainly, from the standpoint of courtesy and respect, talking about or “around” elders is something to avoid. No one likes to be relegated to third person status, when he or she is actually right there. The other side of the coin, unfortunately, is that we see too many family members who do not understand dementia and are frustrated that mom or dad or grandma does not respond “normally” to conversation or suggestions or questions.

Too many family members simply want – even expect – the elder with dementia to “get well”. It is extremely difficult for them to accept that this is never going to happen. The moral of that story is, know the condition of mom, your aunt, grandpa, whomever is at the center of the story. If hearing loss is real and cannot be corrected for some reason, our behavior needs to reflect that. If dementia is present, the style and ethic of communication, frankly, changes. It is not enough to “Know Thyself.” Know what is truly going on with dad, as well.

Your thoughts?

Best wishes. Bert



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