Oct 19, 2014

2 Eye Opening Comments from Alzheimer's Caregivers

The loved one of these two Alzheimer's caregivers almost died. Their experience was gut wrenching and near heart breaking. 
Could it happen to you?

By Bob DeMarco
Alzheimer's Reading Room

2 Eye Opening Comments from Alzheimer's Caregivers

When it comes to caring we sometimes think it won't happen to me (us).

For example, about 60 percent of Alzheimer's patients wander. The number 60 should alert a caregiver or a family that the chances that their loved one is going to "wander away" is pretty high.

When it happens I often read these words, "well it never happened before." Nothing ever happens until it happens. You can read about someone with dementia that goes missing every single day without fail. It is a big problem that can result in death and heartbreak. The question is simple, what did you do to make sure it didn't happen to you?

This brings me to the topic of Alzheimer's care and urinary tract infections. 

At least five Alzheimer's patients who's loved one was a reader of the Alzheimer's Reading Room - died from complications of an untreated or ineffectively treated urinary tract infection.

More readers than I can remember have emailed and asked for advice while they were in an emergency room only to learn that there loved was suffering from a UTI.

No one says it better than Carole Larkin -

Dementia Patients in the Emergency Room - Think UTI First

Below I am publishing two comments that appeared under the article -

Do you know what happens when an elderly person has a urinary tract infection and they don't know it?

Both comments are from Alzheimer's caregivers that experienced the angst and heart break that an untreated or undetected urinary tract infection can cause.

These are powerful comments, and the kind of information that can benefit caregivers if they pay attention and learn from others.

I hope you will take the time to read them. Then I hope you will share them widely in the Alzheimer's community via sites like Facebook, Google+, and Twitter. Please consider printing them out and discussing them in support groups.

First and foremost understand this - it never happens until it happens. And when it happens it can be

gut wrenching and heartbreaking.

Has it happened to you? If so, use the comments box below to alert other caregivers.

Will it happen to you?

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From our reader worldrunner.
On August 10th, 2004, my mother had slapped her caregiver at noon. 
The caregiver called me at work to tell me she was quitting. I was angry that my mother would slap the person who came to bring her lunch. I was in a career training with police officers at the time, they had been to my house several times because my mother had called 911 based on her hallucinations. 
They had no clue what to advise and were uneducated about Alzheimer's or dementia. (It would be great if we could get community workers educated about dementia, particularly because they will encounter it as they work with the public.)

After work, at 4:30 pm, I went to the Alzheimer's Association who advised me that it could be a UTI. They told me she could be sick rather than just mean. At that time I wasn't so sure and was also uneducated, as my mother had been unkind to me earlier in the week. 
I waited till 6:30 p.m. to come to the house, I was an adult child fearful of my mother's wrath. I found her in bed under the covers, freezing and sweating at the same time. She was delerious.

Against her wishes, I snuck off and called 911. She didn't fight when the paramedics came, so I knew this was really serious. 
They told me that if I hadn't come in, she would have had about 12 to 24 hours to live. She was septic and went into ICU for 7 days! 
I am so thankful for Alzheimer's Association advising me, they helped to save her life.

Most of the fighting and the mean-spirited behavior left her (Wish I had been knowledgeable that this would happen, I was still expecting mean and uncooperative behavior that I had experienced for years.

Saw that she was more cooperative with the public, this is part of how she ended up in an assisted living, the biggest mistake of my life.) .

The UTI really took her down, but I'm so grateful for the six years I had with her afterward. 
Please, look for a UTI in your loved one before blaming them or being frustrated and angry with their behavior!

From our reader AR.
My dad was unresponsive in the bathtub and we had to call 911. 
He was admitted to ER and given massive doses of antibiotics and the doctor told us it didn't look good.
Dad is 85 and in great physical shape but had been hallucinating and wandering, and exhibiting aggressive behavior and generally just not himself.
My mom had told me that he was wetting the bed and could not hold his urine til he got to the toilet. We just assumed it was his prostate and also thought this was a part of alzheimers. His behavior was just getting odder and odder and he was so confused and after some research I asked mom if he could have a UTI
She said he wasn't complaining about anything. He had also gone to the ER about a month earlier complaining that he just didn't feel good and in ER they gave him some fluids and said he had a 'virus' and sent him home. In retrospect I think if they checked his urine they might have found a UTI.)
At the hospital when he was unresponsive they told us his temperature was
Yes, 107. They didn't know what was wrong with him..... they sent in infectious disease doctors and wanted to do all these tests on him but we said we didn't want to put him through all that. 
Long story short, no one ever found a cause for his coma. I found out through an aide at the hospital that they said it was sepsis because that's what was on her paper but no doctor or nurse ever told me that. 
We thought for sure we would lose him but after 15 long hours he woke up, thankfully. 
He went to rehab for 2 weeks and now is back home where my 82 year old mom is his caregiver. 
I live 7 hours away but try to come home once a month to help out.
I have my mom check him often now for signs of UTI.
I know in my heart that that's what happened to my dad even tho it is not in any of the records. 
Next time I go back home I am getting the report from his hospitalization to check it for myself.
Thanks so much to Worldrunner and AR. These are the kinds of comments and sharing that make the Alzheimer's Reading Room powerful and useful. You might be saving someone's life thanks to your kind effort of sharing with others via the comments section here.

Please visit the


here on the Alzheimer's Reading Room for more information on this important caregiving topic.

You might be happy you did some day.

Bob DeMarco
Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.
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