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My Grandpa and Alzheimer's

My Grandpa's struggle with Azheimer's and what it meant for my Grandma, family, and our farm.

Photo of Joanna Spoth
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In all the discussions we've been having around this topic, I've been thinking about my Grandpa a ton and wanted to finally take the time for a post about him.

My Grandpa, Edward Spoth, started a family-run market outside of Buffalo, NY in the 1940's. It's still standing today: Spoth's Farm Market. Back then their farmhouse, the barn, and the market were the only buildings on the property. Everything else was used for growing and producing the goods they'd sell at the market.

When I think of my Grandpa, I think of him hollering at my brothers and me to "get outside and shuck some corn!" or demanding, "Why are you sitting inside when it's a beautiful day outside?" He was a powerful force - very intimidating as Grandpas go: round face, loud voice, not very talkative, 6'3" and BIG. 

My Grandma, his perfect complement. Tiny, soft spoken, baking for us, always thinking of others before herself. Both of them extremely hard working and committed individuals. Together they raised 8 children, one of them my dad, who all grew up working on the farm.

When my Grandpa was around 70, he started showing signs of dementia. It was later diagnosed as Alzheimers, but it was a slow progression. My Grandma started out as his primary caregiver, but she couldn't physically help him with everything - she just didn't have the strength as he was a really big guy. We were all a little worried about her ability to take care of him, but I believe both she and my grandpa were determined to have it that way for as long as possible. They got a nurse who would come by their house to help out with big tasks, and that seemed to work for a little while. However, my Grandpa continued to become more disoriented and one night picked up a knife. At that point we realized his disease was becoming a safety issue and he needed more help than my Grandma, or any family member could offer and he went to a nearby care facility. For years and years my grandma would go see him every single day, without fail. We would go see him, too, and as a 12-15 year old I remember it being very uncomfortable and sad. But, my dad's family was incredibly supportive and my Grandpa's siblings would come visit, take family pictures, talk to him about the days on the farm, and what was going on in their lives. Eventually, he stopped eating and passed away.

For over 10 years my Grandpa struggled with memory loss and confusion, and it consumed my Grandma and much of my extended and immediate families' lives. And my Grandma and everyone else wouldn't have had it any other way. 

There are countless emotional stories wrapped up in this retelling - and there's also one visible outcome that I think is worth mentioning. When this all started coming to light, my dad's family decided to sell the land behind Spoth's Farm Market so that they could pay for my Grandpa's care. Every penny of it went to taking care for him during the last stage of his life. The land behind the Market is now all family homes. Whenever I go back there, I can't help but be reminded of how hard my Grandpa worked during his life to raise 8 amazing children and run a business, and the form that that hard work had to take as he aged. 

I didn't attend his funeral, but I've kept the prayer card they had at the service. On the back is the poem below, and I think it captures the way my dad's family felt to see a loved one with dementia pass away:

God looked around his garden
And found an empty place.
He then looked down upon the earth,
And saw your tired face.

He put His arms around you
And lifted you to rest.
God’s garden must be beautiful,
He always takes the best.

He knew that you were suffering,
He knew that you were in pain.
He knew that you would never
Get well on earth again.

He saw the road was getting rough
And the hills were hard to climb.
So He closed your weary eyelids
And whispered “Peace be thine.”

It broke our hearts to lose you
But you did not go alone…
For part of us went with you
The day God called you home.

Author: D. W. MCCONWAY

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

I'm the only daughter in my family so statistically am more likely to take on a caregiving role and already feel an enormous sense of responsibility to do so. As a kid, I wasn't involved in the conversations that took place around my Grandpa's care. But now, I'm curious about the conversations we can have to be more honest about the caregiving role within families.

Tell us about your work experience:

I'm a happy member of the OpenIDEO team. :) And also have experience working as a CNA, teacher, and nonprofit professional.


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