Taking Control

When Jim was diagnosed with an Alzheimer’s type of dementia, I felt as if we had been robbed of our future. As his health failed, I knew we would never grow old together.

At times, life seemed to spiral out of control. We were facing a health crisis unlike any that I had ever personally dealt with in my life. Before long, I learned that the different physicians and specialists we visited did not have the time to teach us about life with dementia.

One day, I opened the phone book and saw a listing for the Alzheimer’s Association. I called the number and talked to Penny Braun, the executive director of the Columbia Chapter. The Chapter became my lifeline.

Some of the strategies that worked for me:

 

1.  I found power in knowledge about the disease and about the best caregiving strategies. The local Alzheimer’s Chapter offered educational classes and I signed up for everything they offered. Jim and I joined an early-onset support group where we met other young people with dementia. I joined a local caregiver support group where I learned how to navigate the financial and emotional aspects of dementia.

2.   We received the best medical attention we could for Jim and eliminated one-by-one treatable causes of dementia. I kept a log of all the tests and procedures so that we didn’t duplicate expensive tests.

3.  I took back power by becoming an Alzheimer’s Association advocate and volunteer. It did my heart good to know that I was making a difference as an advocate for Alzheimer’s research. By joining the Walk to End Alzheimer’s I helped “pay forward” the support and services I had received from the Alzheimer’s Association.

 

It doesn’t take me long to discover that I could not control the disease, but I could take control of the situation. Hopefully, in our lifetime, Alzheimer’s will become a manageable disease and survivors will take a victory lap. 

 

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Let Us Forget Not...

 

 

At the close of our Business Women’s Meetings, we recite the Club Collect. One line of the Collect says, “Let us forget not to be kind…” The Collect is a prayer to remind us to be better human beings.

Today, I was inspired to write about the things caregivers should not forget to do, think, or feel. The prayer is jam-packed with words of wisdom, but my focus today is of “forget not” and we will begin with the original concept. 

 

Forget not to be kind: First, kindness is not the same as weakness; in fact, we gain strength through kindness. The dictionary definition of kindness is “the quality of being friendly, generous, and considerate.” Those are all qualities of kindness, but we should strive for more. It’s easier to be kind to some people than it is others. To be kind to a difficult person requires a conscious effort! One person you should always be kind to is YOU.

Forget not to be flexible: When things do not go according to plan, go with what works. Each day brings new challenges for a caregiver. Unfortunately, if your loved one has dementia, the same solution that worked the day before may not work again. Being flexible means looking at other possibilities.  

Forget not to love: A person with dementia may not demonstrate love in the same manner they did before the disease. Jim was always a loving person, but as his dementia progressed, he changed. I missed the way he had been throughout our first twenty-five years of our marriage, and learned to love him unconditionally through the last ten years of his life. In many ways, he was a different, more vulnerable, person, and my love for him became more protective. I didn’t look back, and I didn’t think about the future.

Forget not to be generous: Jim taught me to be generous. He was the most unselfish person I ever knew. He would give his last ten dollars to a family member that needed it worse than he did. That’s just the way he was. I was horrified when I learned he took $1000 out of our account to give it to a friend. His trust was not misplaced, because eventually, the friend repaid him. I never made it to Jim’s standard of generosity, but I took baby steps in the right direction.

Forget not to give time: The most important gift we can give to our loved ones is the gift of our time. As I visited Jim on a nearly daily basis, I noticed most residents seldom, or never, had any visitors. Jim had family that looked out for him on a daily basis. We worked with nursing home staff to make his life as comfortable as possible.

Forget not those who have forgotten you: In support group, one of the questions we often had was why visit your loved one if they don’t know who you are. Jim’s aphasia meant that he was a man of few words. Sometimes, he got teary-eyed when he saw a friend or relative he hadn’t seen in a long time. I explained that his reaction meant that he remember them.

Being an un-paid family caregiver for a person with dementia is the ultimate act of love. Knowing when to say “when” can be an act of kindness. The nursing home decision is a difficult choice, but sometimes it is the best choice for the caregiver and their loved one. 

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Artificial Intelligence

 

I’ve watched newscasts that tout the danger of artificial intelligence (AI). With available technology, fictitious events might appear to be real. Without laws protecting the general public, AI could create chaos, leading up to war.

Recently, a woman heard her terrified fifteen-year-old daughter’s “voice” crying and saying she was kidnapped. The kidnapper demanded $1 million, but reduced it to $50,000. The woman was able to reach her daughter before paying the ransom. She testified to Congress about how real the AI generated voice sounded and how the kidnapping scam could have succeeded.   

A large segment of our society doesn’t trust anything that defies their preconceived beliefs, and now they have a “fall guy” for any opposing viewpoints. It gives new meaning to artificial intelligence when people share, believe, and are swayed by social media posts that have no basis in reality.

Often those that think they are politically savvy base their opinions on sound bites, hyperbolic headlines, from their newsfeeds and slanted political radio, TV, or online stations. We’ve become a country divided and without respect or tolerance for anyone having a difference of opinion.

We used to gain our intelligence through reading textbooks and taking a wide variety of required educational subjects. We watched the nightly local and world news, which wasn’t sugar coated or politically sensationalized.

Now, we’ve replaced real intelligence with artificial intelligence. If we don’t know or can’t remember something we just look it up on a search engine and immediately have the information on our screen.

I’ve been steadily receiving offers that all I need to do is select some key words and AI can prepare a grammar free, perfectly written blog post for me. My first response to that offer was, “What’s the fun in that?” We have spell check, speech to text, and apparently the ability to write essays or blog posts without using an ounce of our own intelligence.

Although artificial intelligence may have negative effects, AI is an essential disease research tool. For example, AI uses an algorithm to compare PET scans to detect subtle changes in the brain that human radiologists could miss. This allows AI to identify whether an individual has the characteristics essential to diagnose Alzheimer’s disease for an earlier diagnosis.

Studies are also being conducted on how AI can help primary caregivers of persons with dementia. Smart home systems and sensors used to track and detect issues as they develop. Technology can be used to offer alerts to assist with cognitive problems and help the caregiver use best practices to cope with the challenges of caring for a person with Alzheimer’s and related dementia.

When used to enhance the human experience, AI is a robust tool. On the flip side, AI is being released for public use faster than safeguards are put into place. Criminals can use AI to impersonate a family member or friend’s voice as a clever way to trick an unsuspecting person into sending money.

As long as we use our God-given intelligence, we can embrace AI for its positive medical research benefits, and learn to verify suspicious activity or events. There’s nothing wrong with verifying information with an internet search, just be aware that social media memes are not a reliable source.

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ