Getting Our Affairs in Order

Kristin Neva avatar

by Kristin Neva |

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In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode.

“We need to sell the house,” he said. “We need to move near your family.”

It took more than a year for the house to sell, but when it finally did, we moved to Michigan’s Upper Peninsula and built an accessible home next door to my parents. Being near family in a house designed for disability has made life easier than it would have been.

Todd also created a document titled “In Event of Death.” I’m sure I’ll be in a fog after he dies, so I’m grateful he’s laid out steps of what I should do, such as close his credit card and discuss survivor benefits with staff from the Social Security Administration. He included phone numbers, account numbers, and passwords.

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After the diagnosis, I was very aware of the fragility of life and wanted to have a plan for our young children in the event something should happen to me, too. We created a will using a template we found online and had our friends sign as witnesses.

A few years later, we met with a lawyer to update our wills. We also made a durable power of attorney for financial affairs so I can take care of legal and financial matters on Todd’s behalf. We filled out a document that designates a patient advocate and durable power of attorney for medical care decisions. It was surreal to consider the options:

  • Choice 1: I do not want life-sustaining treatment if I’m terminally ill.
  • Choice 2: I want life-sustaining treatment unless I am in a coma or vegetative state that my doctor reasonably believes to be irreversible.
  • Choice 3: I want my life to be prolonged to the greatest extent possible.

If Todd is injured in an accident and unable to make decisions, I know what his wishes are. We also discussed what he wants done in the event he gets COVID-19 or another respiratory illness, and the decision must be made to intubate, get a tracheostomy, or not.

We added my name to the telephone account. We changed the utility bill to my name.

Todd created maps showing the location of power and water lines around our home. I made notes on home maintenance, such as having our septic tank pumped every couple years and cleaning the air exchanger filters every six months.

I don’t think I could ever feel emotionally prepared to lose my husband, but on a practical level, we’ve planned the best we can, and that gives me some peace of mind.


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 Services, and are intended to spark discussion about issues pertaining to ALS.


Amy Amberg avatar

Amy Amberg

What a great article. My friend who passed wrote a will, told us where the written and scanned copies were and it sent it out to the important people in his life. His health directive was taped to the desk for all to see. He had 20 people and organizations to split his estate [these were all of the folks who helped him during his illness]. When the time came to distribute the estate, a family member denied there was ever a will even though she received the e mail and electronic copy. My friend was too sick to involve an attorney although he sought one after the only will was notarized. He was going to make changes, never did and the first will should have stood. It was heart-breaking to lose my friend and the sting of the dishonest family member who denied 17 people their fair share hurts further.

Kristin Neva avatar

Kristin Neva

Thanks for commenting, Amy. I'm sorry for your loss.

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