Painful memories can offer profound insight

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We all have memories that we wish we could forget. Our childhoods tend to have a major impact on the rest of our lives, as do major life milestones.

I sometimes wonder what those with dementia remember from their lives. Good memories, bad memories, or a mix of what had the most impact on them? Or maybe it’s just random. We may never know.

One memory from my adolescence that haunted many of my adult years transformed into a powerful life lesson for me. The story behind that memory, Lesson from a Bully, was recently published on Women For One as part of their project highlighting Truthtellers. I’m honored to share my story with a community focused on empowering women.

I had the pleasure of seeing the Women For One Truthteller Tour in person at the What Women Want conference in Atlanta last year. It was a powerful experience to hear women tell their stories, and how the darkest, most painful life experiences can inspire us to be better people.

As many of you know, I’m a big advocate for caregivers sharing their stories, as I think there is nothing more powerful than sharing your unique experiences with others. It’s a way to personalize the current political debate going on right now around elder care issues. I hope that you are able to share your story with those who need to hear it.

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A reunion with kindness

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I had a chance encounter this past week with a woman who was a true angel to my family several years ago. Sandra went out of her way to care for my mother and myself as my father was dying. She even put her life (and car) at risk, driving through a snowstorm.

Sandra played a role in what was one of the worst moments of my life, but also a moment that helped inspire this blog, The Memories Project.

Over the years, I’ve thought about Sandra and her multiple acts of kindness. Such people seem to appear when you need them the most.

And so it happened that our paths crossed again. You can read about the encounter via my post on Medium or via the Twitter thread below. (Click through to read entire thread on Twitter.)

As I’ve said before, I’m a skeptic, but I’m also not a fool. There can only be so many coincidences. I keep my eyes and heart open for these moments, and try to learn from them. I hope you will do the same in your lives, and also remember that small acts of kindness can have a tremendous impact on a person’s life.

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Tips on how to communicate with those who have dementia

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One of the things I struggled with the most when spending time with my dad who had Alzheimer’s was communication. I didn’t know how to act, or what to say. Should I talk slower, use simpler words or should I speak normally? And when Dad spoke what sounded like gibberish to me, how was I to respond?

It’s a common struggle for dementia caregivers. You see the person in front of you, who looks just like the person you’ve known all your life, and then they open their mouth and say something inappropriate or bizarre. You freeze, your gut twists and you find yourself in a new world, one in which you’ve had no training or preparation.

This Communicating with Alzheimer’s guide offers helpful tips on how to connect with your loved ones with dementia. Here are some of the tips that I found particularly helpful:

  • Maintain eye contact: This can offer reassurance and be a sign of sincerity and thoughtfulness. Focusing fully on a person struggling to communicate can help with understanding as well. The person may use body language to compensate for fading verbal skills.
  • Don’t argue or correct: Those with dementia will often say things that aren’t true or ask for loved ones who are long dead. Some dementia caregivers struggle with the concept of white lies, but it truly is the right thing to do. My mother often tried to correct my father when he said something that wasn’t true, and it didn’t do any good. It only frustrated my father and my mother. If a person with dementia think it’s Wednesday and it’s Monday, so be it. If they want to know where their mother who has been dead for 20 years is, you can simply say they are well and on a vacation.
  • Maintain a quiet, calm environment: I remember the time my parents came to see me at the hotel I was staying at, which was connected to a casino. The minute my father entered the noisy, chaotic lobby, I realized how stupid it was to bring him into that kind of environment. I chronicle that moment in my book, The Reluctant Caregiver. Those with dementia can become overstimulated quite easily and this can negatively effect their ability to communicate.
  • Use humor whenever possible: I used to cringe at some of the silly things my father would say, but in retrospect, it would have been better to just laugh and engage him in whatever train of thought he was having at the moment. Humor is a stress reliever and can lift the mood, which are important for both the person with dementia and their caregiver.

What communication tips do you find work best?

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Patients in Dementialand by Welcome to Dementialand

I totally agree with this! It serves as a good reminder to all of us, and especially those of us who work in the media world, to use person-centered language and not associate someone solely with their disease. Alzheimer’s and other forms of dementia take enough from a person without us contributing to the problem.

Let’s talk about patients. You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t. I want to talk about dementia “patients.” First, an analogy… My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. […]

Read the full post via Patients in Dementialand — Welcome to Dementialand

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February 28, 2019 · 5:06 pm

Relay: Simplifying voice communication for kids, elders

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Image courtesy of Relay & Voorhees Segal Communications

I remember the challenge I had in convincing my mother that she needed a cellphone. This was when my father still lived at home, but his dementia was progressing steadily. I wanted them to have safe, quick communication to be able to call for transportation, or for help, if my father should fall or need medical assistance.

My mother surprised me with how much she ended up enjoying her Jitterbug phone. (The company is now called Great Call.) The simple to use phone featured a flip design and large numbers. Getting her that device was one of the best decisions I ever made.

Recently I received information about a super-simple phone called Relay. It was originally designed with kids in mind, but the makers discovered another enthusiastic audience: older adults and their caregivers.

Relay doesn’t look like a phone at all. It’s a colorful square device with a button in the middle. It works more like a walkie-talkie, requiring the user to just press the button to speak. There’s no screen, but the device does have GPS capabilities, which could be an asset for those with dementia who tend to wander. It also features multi-network connectivity, long battery life and durable construction.

It turns out that the company’s goal in creating something simple enough for a five-year-old to use also can prove useful to those with dementia, or older adults managing serious health conditions.

Here are more details about Relay:

  • It is affordable at $49 and available on Amazon and Target
  • Relay works over 4G LTE and Wi-Fi, so it has unlimited range and works everywhere a regular cellphone or smartphone does
  • It’s simple for everyone to use, even for those with limited dexterity
  • Relay is durable and water resistant

I haven’t tried Relay myself, but would be interested in hearing from parents or caregivers who have tried the device. 

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Valentine’s card from Dad

My father was not the overtly affectionate type, and I think I can speak for my mom when I say he wasn’t the romantic sort. But when I was a baby, he did turn on the charm for Valentine’s Day.

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I can only guess that this was my first Valentine’s, since there is no date on the card. Dad refers to me by the nickname he gave me, “Wee Tookie,” a term of affection from his Irish upbringing. He signs the card: “Lots of love from Da Da,” which I remember calling him when I was very young.

The card is in excellent condition 40-plus years later, and is something I will always treasure.

Happy Valentine’s Day to you and yours.

 

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Dementia is a thief, but should caregivers be stripped of all joy?

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The complex emotional toll of Alzheimer’s has been in the news the past week. The Washington Post wrote an article about B. Smith, the model, restaurateur and lifestyle guru who has early-onset Alzheimer’s and how her husband has formed a relationship with another woman. B. Smith’s loyal fans were not happy about this development.

Dan Gasby tried to defend himself amidst withering criticism, saying in interviews that B. Smith told him to “go on” after her diagnosis in 2014. He says he’s a better caregiver to his wife now that he’s happier.

Gasby has at least one high-profile supporter: Patti Davis, daughter of Ronald Reagan. In her essay, titled, Alzheimer’s is a cruel thief. Don’t blame caregivers for still finding joy, she reflects upon the emotional devastation an Alzheimer’s diagnosis can bring and what that can do to a couple. She encourages the public to be more sympathetic to those in Gasby’s position.

The issue is at its heart an emotional gut-punch so the fact that it inspires heated opinions is not surprising. What I’ve learned over the years as a  family caregiver for someone with dementia is that I wouldn’t want someone to judge my choices and so I try to refrain from judging others, as long as no harm is being done. While I may not make the same choice as Gasby has made, I cannot rule it out completely either. Those who are outraged on social media would better use their energy volunteering at a memory care center or arranging respite care for a caregiver in their life.

As Patti Davis says, Alzheimer’s is a cruel thief. How much should we allow the disease to steal from caregivers?

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