Our Bittersweet Family Life

Our Bittersweet Family Life
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We had an unseasonably warm fall day while Todd’s sister was visiting from out of state last week. I asked Todd if he’d want to head down to McLain State Park just 15 minutes from our home.

“I suppose,” he said somewhat reluctantly. He wanted to be social even though he was tired.

He makes an effort to participate in the family activities that he can do.

Todd’s shower aide put pants on him. I put a jacket on him, and our son loaded his dad in our accessible van. I drove us to the shore of Lake Superior, making slow turns and avoiding bumps to keep Todd’s neck from being jostled.

Even though it was 10 degrees cooler than the 74 degrees inland at our house, our son took one last, quick dip in Lake Superior. We enjoyed the fall scenery and took a bunch of photos.

That evening, we played a game together at the dining room table, but we only got through one round before Todd had to call it quits. After the shower and the outing, he was exhausted.

The following day, his sister took our kids on an adventure about 45 minutes north of our home to explore Estivant Pines, a stand of old-growth white pines near the tip of the Keweenaw Peninsula.

Todd and I stayed home. Even if it were accessible, he wouldn’t have been able to handle two exhausting days in a row. Plus, it was too far away for me to go and leave Todd at home by himself. I had a lot of projects to get caught up on around the house, so I wasn’t bored while they were gone.

Nonetheless, it was bittersweet when they set off for the day.  I’m always glad when our kids have opportunities to get out of the house to do fun things. I just wish we could all go.

In the beginning of the disease onset, we packed in as many trips and outings as we could, but it became more difficult as the disease progressed. Now, caregiving is easiest, and life is most comfortable for Todd, when he is home.

At home, we have family movie nights and game nights. We’ve found games we all enjoy that Todd can play, too. When we play Apples to Apples, he directs us on which of his cards to place. In Say Anything, he gives his answer verbally, and someone else writes it down. He plays Scrabble without the benefit of rearranging his tiles, and he tells somebody which tiles to pick off his tray and where to place them on the board. We’ve even played Pictionary with Todd drawing on the computer using his head mouse.

I treasure the times I get to head out and do things with the kids. The other weekend, I took them to ride the chairlift at our local ski hill to see the fall colors. It’s only 10 minutes away, and my mom was on call next door in case Todd needed help.

I wish Todd could have seen the view from the Mount Ripley chairlift in person. (Photo by Kristin Neva)

Occasionally, we hire caregiving help so I can go on longer outings with the kids, such as taking the kids on a day trip to go downhill skiing at the Porcupine Mountains an hour and a half away. But those trips are also a little bittersweet. I text Todd pictures throughout our day, wishing he could be there with us.

Such is family life with ALS.

What bittersweet moments have you experienced with ALS?

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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