Jul 25, 2011

Alzheimer's Our New Reality

I learned that placing an Alzheimer’s patient in a home or facility is both heartbreaking and comforting at the same time.

By Karen Matthews

Over the past several months, I began writing articles for submission to Alzheimer’s Reading Room on several occasions. I intended to submit them but the truth is I didn’t actually finish most of them. Why? I really wanted to have something positive to say or believe that I would somehow be helping at least one caregiver out there in Alzheimer’s world. After reading what I’d written, I realized that this was not the case and it would be best to wait until my frame of mind changed.

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Mom has Alzheimer’s and will be 90 in May. She lived with my husband and I for a year (until this past October).

Around the beginning of that month, mom’s appetite decreased quite noticeably. It never was all that great but I was doing well to convince her to take 2 bites at any meal.

All she wanted to do was sleep and, when she was awake, she was more confused than ever.

I knew this was not good but could not get her to willingly go to the doctor. One evening, I was at my wit’s end with the situation and called a doctor friend of mine for advice. She asked if I’d taken mom’s temperature and I felt guilty that it had not even occurred to me to take it. Of course, I did it immediately and found it was 102!

I called my doctor friend back and she was willing to bet it was a Urinary Tract Infection (UTI).

Long story short, I called an ambulance since mom refused to get out of bed. She spent 5 days in the hospital (as did I) and, sure enough, she had a UTI.

The doctor, however, explained that he suspected something else might be going on so ordered more tests and a scan. The scan revealed a large mass on one kidney and the doctor could see that it had spread to the surrounding nodes. He recommended surgery to remove the kidney and chemo.

When I refused to put mom through either, I was faced with a difficult decision of what to do next. Being an Alzheimer’s caregiver wasn’t easy but I felt we’d made the best of it and had found some creative solutions for dealing with many of the issues.

Managing pain was an entirely different consideration and I finally admitted that mom would not be well served living with us. Fear of “doing it wrong” and potentially causing mom to suffer was more than I could handle.

On the other hand, I dreaded placing mom in “a home”.

It wasn’t long before I knew we had made the right decision, though. She is living in an Alzheimer’s community with incredibly caring (and patient) staff members. Within the first couple of weeks, mom excitedly told me that “the best thing about living here is that nobody corrects anybody about anything…ever”.

The staff members are proud of “taking the journey with the patients”. And proud they should be!

What have I learned through all of this?

I’m still amazed that I did not recognize the signs of a Urinary Tract Infection after all of the advice from Bob DeMarco and Alzheimer’s Reading Room. That being said,

Bob is right…caregivers should be ever vigilant about watching for signs of potential UTIs.

I learned that placing an Alzheimer’s patient in a home or facility is both heartbreaking and comforting at the same time. This Alzheimer’s journey has some difficult and unexpected twists and turns for all of us so it’s important to be prepared. Stay connected for support and soak up as much information as possible.

Karen Matthews and her husband, Randy, live in Leawood, Kansas and are caregivers for Karen’s 90 year old mother, Louise. Karen is a residential real estate agent with Reece & Nichols in the Kansas City metropolitan area. Karen has an MBA. You can visit Karen on her Facebook page.

More Insight and Advice for Caregivers

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diag­no­sis and Treat­ment for Mem­ory Prob­lems
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content the Alzheimer's Reading Room