Independence comes in many forms for Alzheimer’s caregivers

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There are times when we crave time to ourselves. We need our independence — to decide whether we want to be alone or be with others.

Your loved one has Alzheimer’s disease and it’s like robbers are stealing her identity — her voice  — piece by piece. The silence becomes deafening for a caregiver who desperately wants to share conversation, movies or music. When you want it least, you have independence — solitude. Maybe even to the point of isolation.

In the midst of months – maybe years – of daily responsibilities, caregivers need time to reconnect with people who have been important in their lives or need time to be alone. The Fourth of July is when many come together for cookouts, maybe enjoy a lake breeze and top off the day with fireworks. Hopefully you can include your caregiver friends in your Independence Day plans, or offer to spend time with a person who lives with dementia so the caregiver may take time for him/herself.

Enjoy a safe and happy July 4th.

 

#AlzCaregiving#

 

When a loved one has Alzheimer’s, is it worth visiting?

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As Elaine’s Alzheimer’s has progressed, her world has become smaller and smaller. Before Alzheimer’s, Elaine was a voracious reader and lively conversationalist; my Second Elaine is neither of those things. She used to enjoy going to plays and performances, and loved putting together photo albums; my Second Elaine does none of that.

When thinking about the world of a person with dementia, I often use the analogy of an inverted funnel. Someone with a healthy brain can put the narrow end of a funnel up to their eye and look up, viewing the world through the large end of the funnel. You see the blueness of the sky and the hope of tomorrow. A person with dementia, meanwhile, experiences that funnel flipping around – he or she is now looking through the wide end of the funnel and sees only what is visible through the narrow end.

Someone in the late stages of Alzheimer’s does not care or understand what happened five minutes ago. They don’t care or understand what’s going to happen five minutes from now.

A fellow caregiver recently posed an interesting question during one of our presentations. Given the limited understanding of a person with dementia, he asked, is it even worthwhile to go out to dinner, listen to music, take a walk?

My answer is, yes – absolutely! What else can I give my wife besides the “right now” kind of happiness? Watch for what kinds of things bring a smile to your loved one’s face. Maybe it’s a dish of ice cream, a car ride or coloring a picture. For us, oftentimes it’s looking at the trees that shade the courtyard of her memory care assisted living facility. I don’t think Elaine could enjoy the view any more if we were looking out at the Swiss Alps. I aim to create moments of joy. It’s worth it, even when those moments are fleeting.

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Alzheimer’s paints July 4th differently than in the past

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Independence Day to many of us includes patriotic music, cookouts with friends and families and of course, beautiful fireworks. But if you have a loved one with Alzheimer’s disease, you want to consider highly modifying how you celebrate.

Crowds and noises can be upsetting to people with Alzheimer’s and other dementias. The further they are along in their journey, the greater the likelihood that he or she doesn’t know it’s July 4th or what the day represents. As I learned with my wife Elaine as her Alzheimer’s progressed, special days are no longer about our friends, community or how to enjoy a festive gathering. As a caregiver, you have to remember it’s their world now. If you find a happy medium, if you find a way to share a smile or a few kind words, consider the day a fantastic success.

No expectations

When it comes to Alzheimer’s, we must leave expectations at the door. All of the joy we knew as children about the Fourth of July may be gone. Loud, crowded celebrations can make someone with dementia feel overwhelmed. You must watch and listen to your loved one for cues about what makes them happy or uneasy. Read her expressions and if she seems uncomfortable, it’s best for everyone that you kindly excuse yourselves and find a quiet place. Know that he or she may become easily agitated, by no choice of his/her own.

Patriotic music may set you free

We know that music can be a wonderful way to share quality time with a loved one with Alzheimer’s. He or she may hear patriotic songs and start to sing or tap their feet to the beat. Music is, after all, one thing that can bring someone with a dementia back to the present. They may like the colors, but may not remember that red, white and blue are our national hues, and decorations with them may provide a moment of happiness, much like seeing a flower in bloom during a walk.

Forgo bright lights

On the same level, you may think that sparklers are a quieter way to enjoy sights of the day, but like fireworks, they may be upsetting because of the flickering, errant light.

The bottom line is that your loved one with Alzheimer’s no longer has independent days. He or she is physically and emotionally in a different world and for you, the caregiver to enjoy a special day like July 4, you must enter their world, be patient and find celebration in unexpected, simple ways.

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“Get in the boat with him” — life with dementia

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I’m continually touched by the wonderful comments about My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver and how the book resonates with Alzheimer’s and other dementia caregivers.

Many times, I’m humbled by the stories I hear from those who provide care to a family member. One reader I recently met spoke with great wisdom about how she defused a possible argument with her father, who lives with dementia.

This woman, who is in her 40s, got a call at work one day from her mother. “Come right away,” the mother said, “Dad is very confused and I can’t talk sense to him.” So of course she hurried to her parents’ home.

When she got there, there stood Dad in the living room, extending one arm as though he were casting a fishing line and cranking his other hand as if he were reeling the line back in.

“Whatcha doing, Dad?” the daughter asked.

“Fishing,” he replied.fishing rod

“Whatcha fishing for?” she asked.

“Walleye,” he replied.

“I love walleye. Can I join you?” she asked.

“Sure,” he replied.

So she stood next to him, pretending to fish and carrying on the kind of gentle conversation that you might expect out on the lake. She had joined her father’s world, rather than expecting him to live in hers.

Her mother, meanwhile, was unable to make the connection. “What should I do if he’s like this again?” she asked.

The daughter had the perfect answer: “Get in the boat with him.”

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Who Is This Book For?

- Spouses and partners of persons with Alzheimer’s
- Children of persons with Alzheimer’s
- Extended family and friends of persons with Alzheimer’s
- Extended family and friends of caregivers
- Professional caregivers for persons with Alzheimer’s
- Others who come in contact with caregivers and persons with Alzheimer’s, including: nurses, social workers, clergy, elder law attorneys, estate planning attorneys, financial advisers, human resources directors, employers, supervisors and co-workers.

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