Alzheimer’s Patients Deserve Private Caregiver

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I realize the title of this post is stating the obvious, and you might even conjure up fears of high expenses, but it will be the best money ever spent for the health of your loved one, even if they live in a high-rated institution for Alzheimer’s patients.

People with severe dementia or Alzheimer’s disease cannot communicate when they’re feeling pain, fever, nausea – at least not in so many words. Just like an infant, an elderly person with dementia cannot communicate the problem; they rely on caregivers to determine when there’s something amiss with their health.

Caregivers must be very diligent about noticing changes in behavior, temperature, and skin color in order to catch early any impending illness. If you are not the primary caregiver for your loved one, be sure and insist that whoever cares for them report to you any changes, whether it’s a cough, sneezing, itching, fever, constipation, or loss of appetite, listlessness, or changes in behavior.

My mother, who is 92, is an Alzheimer’s patient residing in a memory care unit 1100 miles away. I’m her only immediate relative. That’s the reason I hired a private care nurse who stays with her throughout the day six days a week. I hired her through a home health agency nearly four years ago after my mom had a stint in the hospital. Since then, my mom has not been ill one day. It’s the best money I have ever spent. Here’s why.

The charge nurse at my mother’s facility called me one Saturday to report my mother had a temperature and a cough, and low oxygen levels in her bloodstream. They had her on oxygen, administered Tylenol for the fever and had notified the doctor via email. They hastened to say they didn’t feel Mom was in any danger because she was alert and had a normal appetite. The charge nurse said she would call me when they heard from the doctor.

 

A few minutes later my mother’s private caregiver called. I’ll call her Ophelia. Now Ophelia knows my mother very well after four years, down to every behavior, facial expression and muscular twitch. She knows when there’s something not right.

Ophelia reported that Mom had eaten less breakfast that morning; her skin was very warm, and her cough was very congested and deep in her chest. Ophelia recommended that I ask the charge nurse to order a chest x-ray for my mom to rule out pneumonia. (As my mother’s power of attorney, I have to order any additional medical tests.) 

Before I could call in a request for a chest x-ray, the charge nurse called to say that the doctor had prescribed Robitussin for Mom’s cough and Tylenol for the fever. That’s when I told the charge nurse that I wanted a chest x-ray taken either that day or first thing in the morning.

A chest x-ray was done the next day (with portable equipment) and Mom did indeed have pneumonia! The doctor then was forced to prescribe penicillin.

My mother is 92 years old. How much time would have passed before they discovered pneumonia? Would it have been too late? The disease could have become well established making it harder to fight. I owed my mother’s good health to the practiced and caring eye of Ophelia.

It has been my experience that some facilities will wait until the client is very ill before calling the family, yet with elderly people time is of the essence. Their immune systems are very often compromised, making ordinary colds and infections very dangerous and occasionally lethal.

I knew an Alzheimer’s patient who contracted a mild but persistent cough and it was a week before major treatment was undertaken. It developed into pneumonia and in ten days she was dead. I believe staff did not take her symptoms seriously. She didn’t have a private duty nurse at her side noting her worsening condition.

My advice is not to assume that institutions will monitor your loved one’s health as carefully as you would. Staff is spread very thin, and, if they don’t know your loved one very well, early symptoms of illness may go undetected.

Institutions are primarily responsible for dispensing medication, providing meals, baths, toileting, entertainment/stimulation, and clean laundry. The clients’ vital signs are taken throughout the day, but you know as well as I that’s only part of the health story of that individual. They do not have the staff to notice subtle changes in client behavior or condition, as it may have myriad causes.

When you visit your loved one, don’t be afraid to speak up if they look or act different. It may be a sign of illness, infection (UTI), constipation or reaction to a new medication. If your loved one develops the sniffles, don’t assume it’s “just a cold or an allergy” if they’ve never had an allergy in the past. Insist on a visit by the physician in charge and a report back to you.

If you’re not local, contact a home nursing agency in the area for a recommendation of a private caregiver – someone to stay with your loved one, if not every day, at least a few times a week. As they get to know them, they will be able to tell you when there’s a problem. Ask the institution’s staff and the social worker for their impression of how the private health care nurse cares for your loved one and if they have established a good relationship with them.

There are caring people out there; be diligent until you find one. It’s the least we can do for loved ones who can’t speak for themselves.

6 thoughts on “Alzheimer’s Patients Deserve Private Caregiver”

  1. I despise Alzheimer’s! This disease rips loves out of our lives. I just lost my mother in law to what I call the “ugly A”. I watch the disease deteriorate your mind and change her character to someone I didn’t know even with meds “ugly A” had her on a breathing machine and feeding tube. After a nine year battle in the nursing home with the ugly “A” her body became septic in the end that we were forced to have a memorial service for her as oppose to a funeral.
    Having someone personally taking care of your loved ones and assisting them is definitely worth every penny you will spend caring for them as the writer stated.

  2. It’s definitely helpful to have a private caregiver to look after your Loved one. As a registered nurse, I’ve witnessed the live-in and private duty caregivers save lives because they are the first line of defense for any change in status that might affect the patient, and just like you said, they do so way faster than the nurses and doctors who spend less time with the patients.
    I wish you good luck with your mom. Hope she continues to feel better and comfortable.

    1. Thank you for your kind words. Mom is doing great, thanks to the gifts provided by nurses like you! – Christy

  3. It is such a wanderful previledge for me to be able to help. She is just like my grandma and that’s exactly the way I treat her on a daily basis. We really love each other.

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