Monthly Archives: August 2024

caregiving, grieving

Accepting “I Did the Best I Could” is an ongoing process

Accepting that I did the best I could when my husband had his stroke is an ongoing process. I often find myself thinking, “yes, I did the best I could,” followed by “my best wasn’t very good,” and then I dwell on that second thought.

Of course I would be a better caregiver today than I was when Tom needed me. I know so much more now about holding space than I did then. I am better rested now without the exhaustion of around-the-clock caregiving. Without the constant worries about Tom’s pain, his mental health, and his prognosis, I can now reflect and make decisions at a more leisurely pace.

And oh, yeah, my caregiving all took place during a pandemic, which made it difficult or impossible for many friends and loved ones to help out.

Still, while I generally feel pretty good about how I showed up for Tom, there are times when I am reminded that acceptance isn’t a one-and-done thing but rather something I need to do over and over and over again.

I have spent the last week accepting again that I did the best I could.

Last week I read Summoned by a Stroke: An Homage to Love, Relationship, and Living Life Fully, Judy Friesem’s memoir of life with her husband Kim after he had a stroke. There are many similarities between Kim and my husband Tom. Like Tom, Kim had a massive stroke on the right side of his brain, leaving him paralyzed on the left. Like Tom, Kim exhibited incredible grace and acceptance of his new reality.

But I saw many differences between Judy and me. Judy seemed to have much more insight than I did into what Kim was thinking, feeling, and needing. Where Judy is generous, I was narrow-minded. Where Judy seemed to intuitively know what Kim needed, I had to figure out Tom’s needs by trial and error. Even when Kim couldn’t speak or write, Judy was able to communicate with him, while I sometimes overlooked basic niceties or argued with Tom or thought I knew better than he did what he wanted.

I know, I know—Friesem’s book is an edited version of what happened. I know she had imperfect moments. I know she struggled. I know this, and yet, I found myself thinking as I read, “I wish I had been half the caregiver she was.”

I did the best I could at the time . . . and I hate that I couldn’t do better at the time.

In this current round of accepting that I did the best I could, I am finding that talking to myself in the second person is more effective than reminding myself I did the best I could. I talk to myself, saying. “You did the best you could,” or “Give yourself some grace—you were operating under terrible circumstances” or “Tom loved you and appreciated everything you did.”

I think using the second person puts a little space between who I am now and who I was then and makes it more possible for me to feel compassion for that past version of me.

That space also allows me to see the distance I’ve come since then. My listening skills, in particular, are so much better now, and while I wish Tom could have benefitted from them, I know he’d be proud of having taught me to listen.

“Another lesson from Tom DeBlaker,” he would say with a wry smile, and I would hug him and bury my head into his shoulder.

Aging, caregiving

How to Have a Conversation with Someone Who Has Dementia

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I’ve recently spent time with two elderly people who have dementia. Shawn is in the early stage, still able to live alone and take care of himself, although he is forgetful enough that he isn’t able to manage his finances and other personal business reliably. Susan is no longer able to live alone, forgetting to eat and bathe if someone doesn’t remind her.

When I was a kid, one of my grandfathers had dementia, although at the time, we called it “senility.” He often confused me with my mother or my mother with one of her siblings. He typically knew we were his relatives, but he had a hard time pinning down which one. It didn’t bother me at all because whether he knew who I was or not, he was genial and told good stories and sometimes gave me a dollar for ice cream (which was enough back then). I hadn’t known him before his dementia, so for me there was no loss and he just seemed like a happy—if confused—old man.

As I got older, I began to understand the losses people with dementia experience. Susan and Shawn have both expressed how frustrating it is for them to not remember things. They both often lose track of a conversation and will say something like, “What were we talking about?” or “Why was I telling you that?”

Susan recently described one of her childhood homes to me and then asked why she was telling me about it. “I asked you where you grew up,” I reminded her. She blinked at me blankly, clearly having no memory of me asking her that. “Oh,” she said, looking embarrassed.

In the past, I might have been tempted at that moment to either give her a more detailed recap of our conversation or to try to comfort her with a vague statement like, “I forget things, too” or “It’s ok, it wasn’t an important question.” But neither response would have been helpful.

The more detailed recap would likely not have helped her recall the conversation, which didn’t make its way into her short-term memory, and the details I provided might have just confused her more. The vague statements may have come across as condescending or patronizing or, worst of all, lies.

What I do now is remind myself that the purpose of the conversation we were having wasn’t to have a conversation; it was to connect. The information exchanged is irrelevant. Her remembering the conversation would matter if the information was important, but it isn’t. The connection is what matters, and so the way I make her feel is where I put my focus. If I make her feel like she is being patronized or lied to or placated, our connection will not be nourished.

So when she looked embarrassed that she forgot the conversation we were having, I put my hand on hers, made eye contact, and said, “Do you want to tell me more about where you grew up?”  

My intent was to make her feel valued and interesting, and I think it worked. She told me several more stories about her childhood. When she said she hated being so forgetful, instead of brushing her concern aside, I used an active listening strategy to acknowledge her worry, saying, “It sounds like you are really frustrated with your memory. Do you want to talk about that?”

She did. She only said a few sentences about it, but when she was done, she thanked me. I think pretending someone’s dementia isn’t real can make the person with it feel unseen and that me giving her an opportunity to talk about it made her feel seen. That’s connection.

I take a different approach with Shawn. He is more likely to repeat stories or misunderstand or misremember events. He gets very agitated about the things he misunderstands. He recently became convinced that he has to collect the serial numbers of all his appliances or they’ll be repossessed.

When he told me he couldn’t find the serial number on his hot water heater, I kept myself from saying, “Nobody wants the serial number on your hot water heater!” Instead I asked a simple question: “Who needs the number?” He thought it was the bank. I considered explaining that a bank wouldn’t be interested in his hot water heater’s serial number, but anticipated that could lead to an argument, with Shawn trying to convince me that the bank did want it and me trying to convince him that the bank didn’t want it. An argument wouldn’t do either of us any good.

In this situation, my purpose was to calm his worries. I wasn’t sure how he got the idea that the bank wanted this list of numbers. With Shawn, I try to ask very simple direct questions and I couldn’t come up with a simple direct way to find out what his worry stemmed from, so I asked a different simple direct question: “Would you like me to talk to your daughter about this?” He said yes and let it go.

With both Susan and Shawn, I try to ask questions that do not rely on short term memory, like “How was your day?” or “What did you have for breakfast?” Instead, I ask more open-ended questions that prompt them to share whatever is on their mind. “What’s on your mind today?” is my favorite. I also like, “What are you thinking about?”

Accessibility + Dis/ability, normalizing what should be normal

What Disability-Affirming Looks Like (and why it matters)

I hate everything about the concept of overcoming disability. I understand that typically when people talk about someone having overcome a disability, they mean it as a compliment. I’ve heard people talk about how FDR overcame his polio to become president, how Helen Keller overcame her blindness and Deafness to communicate, how Simone Biles overcame her mental health challenges to kill it at the Olympics.

I admire FDR, Helen Keller, and Simone Biles for their accomplishments. But to say that they overcame their disabilities relies on the assumption that being disabled is intrinsically a barrier to success. It supposes that a disabled person shouldn’t be able to become president or a celebrity speaker or a decorated athlete and that it takes an individual with unusual strength, determination, or fortitude to do anything remarkable. It assumes that it is remarkable enough for a disabled person to simply live life, let alone become a leader of any sort. It attributes only negative values to disability—and by extension, disabled people.

To overcome is to defeat or take control of. I cannot defeat or take control of my disabilities. All the willpower and strength in the world will not help me see any better or be less anxious. The overcoming attitude assumes disability is a tragedy, something shameful or pitiful. This is the attitude that assumes I would do anything to fix my vision problems.

The late Nancy Mairs, who wrote about life with MS, said, “I would take a cure but I don’t need one.” I’d love to have better vision or to say goodbye to anxiety and depression, but living a life with low vision, anxiety, and depression is apparently my only option, and damn it, I’m going to make the most of it.

I prefer disability-affirming. I see the overcoming concept as directly opposed to affirming. Overcoming disability puts all the responsibility on the person with the disability. Disability affirming recognizes that disability may make life more challenging but it isn’t a tragedy that makes life not worth living. It sees disabled people as equal to non-disabled people, not less than. Instead of arranging people into hierarchies with non-disabled always higher and more desirable than disabled, a disability-affirming approach understands disability as a feature of the normal range of ability. When someone is recognized as having more challenges, a disability-affirming approach does not expect that individual to be the only one working hard—rather, it sees the work as a joint effort between the disabled person and those around them.

An excellent example of disability-affirming is the Phamaly Theater Company, a company of actors with disabilities formed in 1989 in Denver. Over the weekend I saw Phamaly’s performance of A Chorus Line. Every actor in the production was physically, emotionally, cognitively, and/or intellectually disabled.

An overcoming disability approach would have meant that disabled actors in a show like A Chorus Line, which centers on a group of actors auditioning for a place on a chorus line, would need to either overcome or mask their disabilities. An actor who uses a wheelchair or is Deaf or has a condition that makes it impossible for them to stand for the length of a scene wouldn’t even be considered.

But in Phamaly’s A Chorus Line, actors who use wheelchairs move to the beat of the music, Deaf actors have another character sign and interpret for them, an actor who can’t stand for long periods sits on a wheeled stool and spins around the stage. The disabilities are seamlessly integrated into the performance as if being disabled is normal—and it is! The disabilities don’t become a focus or a barrier—they simply are. Just like in real life.

Affirming disability takes away the pressure disabled people often feel to hide their disabilities. A disabled person who is masking puts tremendous pressure on themselves to appear non-disabled and it is done out of shame or embarrassment. When I pretend I can see something I can’t, I’m masking, and I do it nearly every time someone shows me a picture on their phone. Between the small screen, the typical glare, and my low vision, nine times out of ten, I can’t make out anything, but instead of admitting that and shifting the focus to me from whatever the person with the phone wants to show me, I smile real big and exclaim, “Oh, look at that!” It feels harmless in the moment.

But then I feel like a fraud and the next time that person shows me something on their phone, they think I can see it because I’ve created the illusion that I can and it becomes harder to admit the truth.

A disability-affirming approach that I could take would be to say from the very beginning, “I would love to see that picture! It’s going to take me a minute to change my glasses and move out of the glare, but I’m sure it will be worth it!”

grieving

Sharing Grief (and seeing fire starting as an act of love)

I have been very up and down with my grief the last few months. The three-year anniversary of my husband’s death was less awful than I expected, but then I was a bit blindsided by hard grief a month later. The last few weeks have felt less tumultuous and I’ve noticed a kind of tender sweetness in my grief.

A couple weeks ago, I traveled to Sweden with my sister and my 13-year old nephew. They both knew my husband well and Tom came up in conversation regularly. At one point, my nephew began reminiscing about some of his favorite adventures with my husband. He mentioned a video message Tom had sent him just a week before he died.

I had forgotten about that message. My then 10-year old nephew had been at our house and we had set up an obstacle course in the alley for Tom to go through in his new motorized wheelchair. My nephew had asked if he could try the course in the wheelchair and Tom said yes, but then before that could happen, Tom was exhausted and went in for a nap. Hour later, after my nephew had left and Tom had napped, Tom told me he felt bad that he had not followed through on his promise that my nephew could ride in the wheelchair and he asked me to record him apologizing. I did, sent the video, and completely forgot about it.

When my nephew mentioned it a couple weeks ago, I asked him if we could watch it. He immediately called it up on his phone. Hearing my husband’s voice and seeing the exhaustion on his face was a little shocking—I had forgotten both how ragged he was at the end and how responsible he felt toward my nephew. I was overwhelmed with love for Tom, seeing his attention to my nephew even in the face of his own profound exhaustion and struggles. And I was filled with love and compassion for my nephew, who had this video easily accessible, indicating that he watched it regularly. Even after death, my husband made this boy feel loved and seen.

My nephew and I were quiet for a few minutes after we watched the message, neither of us saying anything. In that silence, we connected over our mutual loss and love. Sharing that moment with my nephew made me feel so close to both him and my husband. My nephew and me, together in silence, lost in remembering, missing, and grieving—it was deliciously sweet and sad. I said, “I miss him so much,” and my nephew said he did too. That was all the discussion we had, but in the silence we shared, there was rich and deep communication.

A few days later, my nephew was with me when I scattered some of Tom’s ashes under an old pine tree in one of Stockholm, Sweden’s many nature preserves. I think Tom would appreciate the bed of pine needles and nearby clear lake. On the hike out of the preserve, my nephew told our guide that Tom was “the kind of uncle who lets you set things on fire in the garage.”

Hearing how others remember my husband fills me with love, for him and for them. Setting things on fire in the garage may not seem sweet, but I remember Tom planning before my nephew’s visits to have certain flammable items available and others tucked away. He had safety protocols in mind. Setting things on fire with that boy was an act of mentoring, trust building, and love. Sometimes my husband’s sweetness showed up as setting things on fire. Sometimes it showed up as making a video apology for not sharing his wheelchair.

One of the best reasons I can think of to keep talking about our dead loved ones is that it strengthens our relationships with the living. Knowing that my nephew still vividly remembers setting things on fire with my husband and keeps the video apology makes me love my nephew even more. We share a deep love for Tom, we both feel shaped in some way by him. There’s a hole where Tom was for both of us. Neither of us is alone in our grief.