By Maryann Ingram
I am caregiver to my live-in sister-in-law who has Korsakoffs and vascular dementia, with the onset at age 59. She lived in a nursing home for six years and then came to live with me last October under the “older adult living at home” waiver program.
I take her to all of her doctor appointments, and carry in hand my own “cheat sheet “ that contains important information, such as her medication list, her immunization history, code status, religion, list of all her doctors, and her medical history with dementia written across it in bold capital letters. I also include a copy of my power of attorney.
Recently, I escorted her to a local hospital for a cardiac procedure. While we were there, I told everyone we came in contact with that she had dementia. This list of people included the registration person, the admitting nurse, the nurse practitioner taking her history, the technician starting the IV, and the procedure nurse.
I informed them all that she had dementia and to be aware her answers to their questions would mostly be unreliable. I was amazed when the doctor completed the procedure and came out to speak to me: He told me that the procedure had gone well, there no changes from her last study, and there was no need to do a stent. Still, he said, he remained puzzled by her symptoms.
“What symptoms?” I asked.
He replied that she had told him she was very short of breath and, for the past several weeks, had been unable to take her daily three-mile walk.
I had to laugh, just to keep my frustrations from being expose—then I told him about her dementia, and that she had never walked three miles daily. Last spring, I mentioned, we had taken an occasional walk in the park.
His jaw almost dropped. “Oh!” was all he could say. I informed him that I had told absolutely every person with whom we had come into contact that she had dementia, and that I had asked each one to label her chart, DEMENTIA.
I really wondered why he had not been told , but he treaded lightly and quickly changed the subject .
I decided to speak to the hospital patient advocate and simply told her the situation and then I said: “You put a bright red armband on FALL RISK patients. You clearly identify those who have drug allergies, don’t you?” She said that they did.
I suggested then that perhaps the hospital could do something similar to identify dementia patients, perhaps to giving them a purple wristband that would identify them, and note that they presented safety risks, unreliable information, and so on.
Has anyone ever considered such a universal identification system for patients living with dementia? It seems to be a real safety issue for them, and for their caregivers. I’m curious to know whether other MediCaring readers have had similar experiences, and what they make of my suggestion.
You can contact Maryann Ingram in care of medicaring at [email protected] Ms. Ingram, an LPN with 20 years of experience in long-term care, is serving her second term as an appointed member of the Maryland Board of Nursing.
key words: dementia, Alzheimer’s disease, long-term care