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A Phone for Dad: A very short tale of caregiver exhaustion and frustration

Trying to solve problems using non-dementia logic is frustrating, futile - and sometimes funny.

Photo of Mariah Burton Nelson

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This "three-minute fiction" was selected by NPR and read by Anne Patchett in 2010, before my father died from complications related to Alzheimer's. I didn't share it with him, but he enjoyed laughing at life's absurdities, so I like to think that in an earlier era, he would have found this amusing. I include it here as a way to say to caregivers: I hear you!

A Phone for Dad, NPR

What is a provocation or insight that might inspire others during this challenge?

How can we put aside logical and ordinary ways of understanding the world when caring for people with Alzheimer's? When we expect them to be as they were before - just minus the good memory - we often miss the mark.

Tell us about your work experience:

I'm in charge of innovation and planning for ASAE: The Center for Association Leadership. We use design thinking to solve problems for which there are no easy answers.

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Photo of Joy Johnston

Great story! I can relate to this as my parents were suspicious of technology. My mother didn't have dementia, but she was reluctant to use the Jitterbug phone I got her (which are designed with seniors in mind, called Great Call now.) Because of its simplicity, she was able to learn how to use it pretty easily and it became one of her beloved possessions.

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Photo of Mariah Burton Nelson

Hi Joy,

Well I'm glad SOMEONE was able to use those often-advertised "easy" phones! :-)

Yes that's the type I sought for Dad. Except... well, you know how well that worked.

The same was true for remote controls. My uncle said, "He needs a new one. I saw this easy one on TV..." Next thing I knew, we were tumbling down that rabbit hole too.

Life being what it is, my mom is 93 now, and after she complained incessantly about her very old iphone, we jumped through lots of hoops to buy HER a new, more modern iphone, and within a few days, she had forgotten all about that, and told me she needed a new phone. Yup. You've just got to laugh!

Thanks for appreciating my writing. Besides laughing, creative writing (and friends, and books, and online support groups) have been my salvation through 13-years-but-who's-counting? of eldercare. Meanwhile, I miss my father and dread my mother's death. Such is life.

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Photo of Joy Johnston

Ha, to be fair, I even have trouble with some of those TV remotes. You are so right, you have to find the humor in some of the absurdity that comes with caregiving.

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Photo of Mariah Burton Nelson

Hi Joy,

Yes, me too; must we really have three remotes?!?

Switching back now from humor to horror...

The fact that the caregiving generation is having some of the same struggles... (and BTW I know of 75-year-olds caring for their parents!)... presents yet another difficult aspect of caregiving.

When my parents have trouble with word recall, I think to myself, Gee, I'm experiencing some of that myself!

And of course we all forget things - but this DOES tend to happen to my generation (Boomers) increasingly.

So, in addition to (usually) having our parents' genes, it's easy to identify (and over-identify) with them. In the back of our minds, we're calculating: How many years before I am in this compromised (demented, vulnerable, confused) state myself?

It's horrifying to consider - and explains in part why so many shy away from parental care. They simply can't handle looking in a mirror that reflects their own possible/likely future.

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Photo of Joy Johnston

That is such a good point, caring for our parents is like a glimpse into the future and our own decline and mortality. My father had Alzheimer's and my mother had cancer, the two diseases I've always feared the most.

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Photo of Kate Rushton

Hi Mariah,

It is great to have you in the challenge. I think this question is very powerful - 'How can we put aside logical and ordinary ways of understanding the world when caring for people with Alzheimer's?' What do you think of the use of technologies like virtual reality or augmented reality for this purpose or lower tech solutions like Rituals of Farewell ?

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Photo of Marije Haas

I know this question was directed at Mariah, but it is a good one! Introducing new technologies can be hard, as the little fiction illustrates so well. New technologies can be quite scary for people living with dementia, it often puts pressure on them of having to engage with things they don't really understand – learning new things is difficult – and it is precisely this pressure you'd want to avoid. This doesn't mean people living with dementia can't experience new things, but I think that this should be a journey of surprise and excitement without having to "do" anything. Better yet, it would be great if this journey was interesting to the carer too, to remove that hierarchical relation between carer and person living with dementia.

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Photo of Mariah Burton Nelson

Hello again, Kate!

Great to be back at another OpenIdeo challenge. I'm not familiar with people using VR or AR with dementia, but let me answer that indirectly with another story.

A friend suggested, "I bet your father would really benefit from Skype!" I felt like saying, Are you kidding? He does not even recognize HIMSELF in ordinary photos!

By that time, I was a wee bit cranky about suggestions from others, usually based on goodwill but ignorance -- about the disease, the course of the disease, what I had tried, and the manifestation in my father. As Marije notes, learning new things is difficult or, I'll add, impossible.

Similarly, "keeping up" with the simple tasks of a previous life becomes impossible. So caregivers would be wise, seems to me, to adjust THEIR behavior, rather than asking the person with dementia to adjust theirs. In this case, I eventually told Dad's relatives and friends: He will not call you. He no longer has an answering machine. So if you want to get in touch, call him at these hours. If no answer, try again. Then of course eventually answering the phone also became impossible. Each time you solve one challenge, another arises.

PS -I LOVE the Rituals of Farewell.

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Photo of Mariah Burton Nelson

Hi Marije,

So much wisdom in this one paragraph, all worth exploring in more depth. Yes, let's not put people with dementia in situations that only frustrate them and make them feel like they're failing. Yes, let's surprise and delight them without needing any response at all. Yes, let's design activities that are interesting to caregivers too, and yes, let's do what we can to remove the hierarchies between the person doing the caregiving and the one being cared for.

One of the biggest blessings of my eight-year journey with Dad was that he loved me back, and trusted me, and thanked me, almost every step of the way. In other words, he gave more than he got. I still grew burned out and exhausted and frustrated - it's just plain hard, time-consuming work, no matter how much love is coming back at you - but the relationship between us became something I treasured. We happen to be 2 weeks away from the 5-year anniversary of his death, and he still occupies a very special place in my heart.

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Photo of Marije Haas

Thanks Mariah

Wonderful to hear that the relationship with your father was good. My mother was not quite so trusting, unfortunately, keeping us on our toes while trying to care for her. Still, such an intense and eye opening experience.

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Photo of Susan

Lovely story. I can see why it was chosen.

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Photo of Mariah Burton Nelson

Thanks, Susan.