The long goodbye

Sadly, I'm now qualified to say this- dementia sucks

These woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.

• Robert Frost, Stopping by Woods on a Snowy Evening

This goes out to anyone who’s watched a loved one gradually slip away from them into the grip of dementia. It’s a terrible slide into a different, horrible version of Hell for everyone concerned. There are no words to describe what it’s like to watch someone die slowly, inexorably, day by excruciating day, knowing there’s nothing you, doctors, or anyone can do to bring that person back to you.

Each day, they slip farther away until they no longer recognize anyone. The best you can hope for is that they understand that you’re someone who loves them. In the end, dementia settles over them like a fog. They lose the desire to eat or drink, their body gradually shuts down, and then, inevitably, they expire. The best you can hope for is to find a combination of medications that will keep them comfortable and calm until they pass away.

Just writing these works breaks my heart because dementia took my mother-in-law last night. Barb was more than just a mother to my wife; she was a friend and mentor and loved her eldest daughter fiercely.

She died at 7:45 p.m. on Thanksgiving night, a time when most of the family was together, precisely as she would’ve wanted it.

I loved Barb because she trusted me with her daughter and because she loved me. I couldn’t have asked for a better mother-in-law.

I first met Barb about 12 1/2 years ago, when Erin invited me to the annual family 4th of July get-together. It was an opportunity to meet the entire family at once, and it didn’t take long for me to feel as if I belonged.

Barb, along with all of Erin’s family, immediately accepted me as one of their own. There was no trial period; I didn’t have to prove myself; I was one of them. They saw that I was Erin’s person and that she was happy, and that was enough for them.

In the 12-plus years since, I’ve become part of the whole, part of the big circle that is this family. Today, that circle is broken. It will heal and be stronger for it, but it will never be quite the same.

Over the years, I came to value Barb as someone I could talk to. She wasn’t someone to be feared or had to walk on eggshells around. She was just Barb, and I could talk to her about pretty much anything.

Then along came Christmas Eve, 2014. Erin and I, and the rest of the family, were spending the night at the family compound, where everyone had grown up. Everyone else had gone to bed, and Barb and I were talking about everything and nothing at the kitchen table. Suddenly, I noticed she’d asked me the same question three times within perhaps 5-7 minutes.

That was when I knew something wasn’t right. I spoke to Erin the next morning, and she confirmed my observations. We didn’t know what the problem was, but we knew what the worst-case scenario was, and we tried to keep our minds from heading down that path.

Over the next few years, Barb’s memory issues became more noticeable, though she could still function. While we were concerned, we weren’t yet losing sleep. That time was coming, and in the back of our minds, I think we knew it. None of us were ready to think in those terms.

Barb was still driving between Longview, WA, and Portland, about an hour’s drive. She’d come to Portland to shop or visit us, and she was still pretty independent. Before long, though, that began to change. She’d arrange to meet Erin somewhere in Portland, very often a place she’d been to many times before…and get hopelessly lost. Erin would get a panicked phone call from her Mom, who would have no idea where she was.

Then, the time came for her to renew her driver’s license. Not surprisingly, she failed the test, which came as a relief to the family, though not to her. She was now dependent on others to drive her around, which she hated, but it was better than her trying to drive two hours north from Longview to Seattle. Or the hour south to Portland.

From there, things degraded pretty rapidly. It wasn’t long before she was experiencing difficulty putting names to faces. She became increasingly agitated as her memory declined, and she frequently didn’t recognize her husband or family members.

Erin and I decided to have Barb and Gregg stay with us over Christmas last year. We feared it might be the last opportunity to have Barb with us. We had no idea how prescient that fear would turn out to be,

It was the worst, most stressful Christmas either of us had endured. Barb’s memory was at a low ebb; she had no idea who we were or where she was. She couldn’t sleep for more than an hour or two before she’d wake up paranoid and frightened. And it got worse.

It also became our introduction to how terrible dementia could be for everyone concerned.

The Christmas holiday ended with her in the hospital, and from there, she went directly into adult foster care. If you’ve never experienced having a loved one in adult foster care, it’s a terrible and yet excellent situation for a loved one. Barb was in a place she didn’t want to be in because it wasn’t home, and she knew it, but it was also a place best equipped to provide the 24/7 care she needed.

It was awful in that none of us wanted this for Barb. No one wants to see their loved one in a memory care facility, but it was the best possible place for her. It was excellent because someone was always nearby to look in on her and ensure her safety and comfort. We couldn’t provide that for her because we had no experience with dementia.

The almost 12 months since last Christmas have been difficult and trying for all of us. Barb was still with us, but she wasn’t the person we remembered. Dementia had robbed her of her memory. Erin missed her mother. Erin’s father missed his wife and best friend of 58 years, though he visited her faithfully daily. And I missed a woman who was more than just my mother-in-law.

When we got the call, most of the family was in the living room, watching a football game after Thanksgiving dinner. Erin and I, along with most of the family, went to see Barb and say our goodbyes.

Several years after her dementia had become evident, she was finally at peace, which was really what all of us wanted for her.

As we stood around Barb’s bed, we comforted ourselves in our own ways. No matter what each person believed, there was uniform agreement that she was at peace no matter what happened or where she is now. I think I can speak for all of us when I say there’s a profound sense of relief for her within the family.

Her suffering is finally over. Dementia is something I wouldn’t wish on anyone. The good news is that we’ll remember Barb as a woman who loved fiercely, was all about family, and was one of the sweetest and kindest people you’d ever meet.

I’ll miss you, Barb.

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