Monthly Archives: July 2023

Accessibility + Dis/ability, caregiving

Disability is not a catastrophe

One of the ways I see ableism sneak into our lives is by the way we assume that disability is a tragedy and that the lives of disabled people are grim and hopeless. My late husband was disabled by his stroke and we had many challenges learning how to navigate life post-stroke. At the same time, our lives post-stroke were wonderful. 

 I recently told a new acquaintance about my late husband having a stroke and her reaction was so refreshing: she said, “That must have been intense” rather than “that must have been awful,” which is how most people react. Her response reminded me of Sallie Tisdale’s suggestion in Advice for Future Corpses (and Those Who Love Them) to think of something as difficult rather than bad.  

When we label something bad, it is easier to attach shame to it and avoid talking about it. That is not the case when we label it difficult. Humans may not always like things that are difficult but we respect them. My husband and I had many difficult days after his stroke. Some of those difficult days were the best days of my life so far. 

I’ve noticed how differently people react to two of my recent unusual experiences. When I tell people I went to Antarctica, they usually exclaim, “Wow! That’s amazing!” or something like that. They want to know about the experience, they ask to see pictures, and they listen intently to my stories. But when I tell them I was my husband’s caregiver for a year, they usually look horrified and say something like, “Oh, no! That must have been awful!” Very few people ask what it was like or for any detail. If I persist and talk about it, they often look uncomfortable. 

Yet, both experiences were mind-expanding, challenging, tranquil, anxious, and astonishing. The trip to Antarctica was by choice and the caregiving was by necessity, but both experiences were ones I cherish. 

I think people simply assume that the adventure of being my husband’s caregiver was a catastrophe while going to Antarctica was a wonderful adventure. 

Sudden, unexpected disability is certainly challenging. My husband and I had to adjust nearly everything about our lives and we had to do it with no notice. The adjustments were often awkward, sometimes expensive or time-consuming, and often felt very unfamiliar and so seemed off. But as we got used to each adjustment, it came to feel normal to us. 

People who are not used to helping their partner use the toilet assume it is a horrifying experience, but once we learned the logistics of it, it was just part of our usual routine. We had some of our best conversations while I was helping him use the toilet, as well as some of our biggest laughs. 

Considering that most of us who live long enough will become disabled at some point in our lives, it makes more sense to approach disability as a normal part of any life. We don’t have to look forward to it or even like it—there are many parts of life we dislike (paying taxes, for example, or flossing or job interviews), but we accept them as normal and that impacts our attitude toward them. We may feel trepidation and even some dread around job interviews, but we don’t avoid people who are on the job market. We don’t plug our ears and shout “la la la!” when they talk, but when I start talking about being my husband’s caregiver, many people do the equivalent of plugging their ears. 

And then there are those who perk up, relieved, I think, that I am talking about it. I want more of us to perk up or at least not turn away. 

Hearing and vision will fade, mobility will slow, and anxiety and mental illness will impact many of us. If we refuse to acknowledge that, our fear will be magnified and the avoidance and secrecy around disability will make it that much harder to talk about it. 

grieving, life skills, normalizing what should be normal

How to Prepare Now for the Next Crisis or Death (including yours)

One of the most important lessons I’ve learned since my husband’s stroke is that people want to help. Another lesson I’ve learned is that it’s hard to figure out what you need help with when you are in the middle of a crisis. When my husband had his stroke, I didn’t know what I needed until I sat down and talked it through with a couple other people. A year later when he died, I once again didn’t know what I needed until I talked it through with someone.

So, lesson #1 is that talking it through with someone else can help.

Other things I learned:

2. Figure out before the crisis what people can help with.

Ironically, the best time to figure out what you need help with might be before you need it, when life is calm and you don’t need help. Right now, for example, you could make a list of all the mundane things you’ve done recently that someone else could have done. For me, the list might include feeding and walking the dogs, weeding, buying groceries, cooking, and doing laundry.

There may be things that someone else could theoretically do but maybe you are persnickety about how it gets done. I’m picky about how my laundry gets done. My daughter’s generation doesn’t separate colors from whites—they just throw them all in the washer together. I want my colors and whites done separately and I want some items air-dried even though the tags say they can go in the dryer. Explaining this to someone while I’m experiencing a crisis would not go well. But today, when there is no crisis, I could take a few minutes and write out my quirky laundry habits so that when the next crisis hits, I can just share the document with someone who has offered to help.

3. Let people help rather than insisting you don’t need help.

You do need help and you can receive it gracefully or make it miserable for everyone—the choice is yours. Acknowledging that you need help isn’t a sign of weakness; it’s an opportunity to connect with others and allow them into your life.

4. Talk about death with the people who will be most impacted by yours (and vice versa).

I am incredibly grateful that my husband made his final wishes clear so that I could make the decision to remove him from life support with a clear conscience, knowing it was what he wanted. Even knowing I was following his wishes, the decision was heart wrenching. It would have been exponentially more difficult had I not known what he wanted.

After my husband died, I updated my will and talked through it with my daughter and stepson. I expressed my final wishes and showed them where they could find important documents when I die. Nobody liked that conversation, but when I die, one thing neither of them will have to stress out over is where to find my will. Because we’ve talked about my will, there’s no mystery about who gets what, and because we’ve talked about my final wishes, there’s no mystery about what I want.

I suggest preparing people for these conversations. You can say something like, “Hey, I know nobody wants to think about this, but I want you to know what my final wishes are just in case.”

I have not always prepared people. I’ve tried to slip it into dinner conversations, thinking that it would be too stressful for everyone to have “talk about Elizabeth’s death” on their calendar. I’d wait for a lull in the conversation and then say, “So, I won’t live forever and there are a few things you need to know.” I recommend against this strategy. It actually does go better if you schedule the discussion ahead of time as a stand alone conversation. That allows people to do whatever emotional preparation they need to do to be fully engaged in the discussion.

The Cake website has a great checklist for organizing and sharing your final wishes.

And please, if you have pets, make a plan for their care in the event of your death.

5. Do some Swedish death cleaning.

Swedish death cleaning may sound like a scary cult practice, but it’s simply getting rid of what you don’t need while you’re still alive so your loved ones don’t have to do it after you die. I feel relief to know my loved ones won’t have to go through a packed house of my things when I die, wondering what to do with them or how to get rid of them.

6. Label for others.

Even after Swedish death cleaning, I still have things that will need to be gone through when I die, and what seems self evidently important to me may appear to be a fabric scrap to you. This is why it can be helpful to label things for whoever may find them. For example, I have a drawer full of things that smell like my husband (well, the smell has faded, but to me, they will always smell like him). I put a piece of paper in the drawer that says “Things that Smell Like Tom” so that when I die, anyone opening the drawer will understand the significance of the items.

Anderson Cooper talks in his podcast about how meaningful it was to find items after his mother had died that were labeled with their significance. I like knowing I’m doing something that Gloria Vanderbilt did.

grieving

How to Deliver the News of a Death

When my husband died, I was lucky to be surrounded by his brother, son, and mother, plus my daughter. But there were many other people who needed to be told of his death, including friends, neighbors, relatives, and co-workers. The thought of sharing this very sad news with people who I knew would be surprised and devastated by it was daunting.

I don’t even remember the first few calls I made, which were to my sister and some close friends. I imagine I was incoherent. The first call I actually remember making was to an old friend of his who was a rafter. She asked me what I needed and cried with me, and then she offered to tell other folks from that friend circle.

It was an incredible relief and helped me quickly realize that the task of delivering the news of a death can be easily delegated. Delivering such sad news is tough and dividing the task among several different people really helps. It also provides a buffer between you and the people receiving the news.

That buffer is important because nearly everyone beyond immediate family and close friends asked me two questions: what happened? and how was I doing? There is nothing wrong with the questions, but I didn’t know how to answer either one. I didn’t quite know what had happened and I didn’t quite know how I was doing. I appreciated being asked but I had no idea how to answer. When other people are delivering the news, you are spared those questions.

The other reason a buffer was nice is that often the people receiving the news were upset and I felt the need to comfort them—but I was distraught myself. Every bit of energy I  put toward them was energy I needed for myself. When other people who had more distance from Tom delivered the news, they could do some comforting without causing themselves more suffering.

I understand why people asked what happened. My husband had gone in for surgery and when his doctor spoke to me afterward, he told me the surgery went well—an update I conveyed on our CaringBridge site. At that point, it looked like his recovery from the surgery would be completely normal. By the end of the day, it had become apparent that he wasn’t going to wake up, and I made the decision with his family to remove him from life support. People had questions about why he didn’t wake up, what exactly the doctors had said, and more. It was difficult to be asked those questions over and over. I would get off the phone after being peppered with questions and then have to start the process over with the next call.

Even when I told people “I don’t know what happened. I have a lot of questions, too,” they persisted. Several people encouraged me to get a lawyer, to demand an investigation at the hospital, to sue the doctors. I hated those conversations the most. I knew people were trying to be helpful. They didn’t understand why Tom had died and wanted answers. I didn’t understand why he had died, either, but I knew he was dead and a lawsuit wouldn’t bring him back. I told people who pressed this issue, “I can’t think about that right now.”

The vast majority of people were very kind. Nearly everyone expressed love for Tom, concern for me, and asked how they could help. I wasn’t yet organized enough to know what I needed, so I asked people to toast Tom, to make donations to charities he supported, or to contact specific other people.

Based on my experience, here’s my advice for anyone who needs to deliver the news of a death:

  1. Delegate as much as you can to others who aren’t as impacted by the death as you are. Give folks you’ve delegated to a list of facts or pieces of information to convey, such as the cause of death, details about any memorial that is already planned, or what you could use help with.
  2. Pace yourself and prepare yourself. Each call will take something out of you. I found it helpful to have one or both of my dogs nearby to pet while I was on the phone, as well as having tissues, a glass of water, and some paper and a writing implement within reach.
  3. Be ready to answer the question of what people can do to help.
  4. Put yourself first. If you need to cut a call short because you are too upset, it’s ok to say, “I’m so sorry, but I need to cut this short” and hang up. I said that many times to people who wanted me to sue.
  5. Decide in advance how you will answer questions you don’t want to be asked so that if those questions are asked, you’ll have a handy script. For example, a few people asked me if we had life insurance on Tom and when I gave a vague answer they pressed for more detail. After the first instance of this, I decided to assume they had good intentions and answer by saying, “I know you’re only asking out of concern for me, and I want you to know I’ll be fine.” No one has had the nerve to say, “Actually, I’m just super nosy and want to know how much you got.”

grieving

Two Years Out: What Feels Possible

Every time I talk to other widows, the subject of how grief feels at different time intervals comes up. I posted last week about it being two years since my husband died, but I didn’t talk about milestones. I reread the milestone posts I made at 3 months out, 16 weeks out, 6 months out, and 7 ½ months out, and it was helpful to see documentation of myself moving forward. It often feels like I’m stuck, especially since my depression came back in the spring, but I’m not actually stuck.

Milestones:

  • The biggest shift for me has been feeling engaged with my job again. I loved my job as a professor until Tom died and since then, it’s been disorienting to not feel deeply connected to my work. Since my sabbatical ended and I returned to work at the beginning of June, I’ve been pleasantly surprised to experience the old feeling of excitement about projects at work again. I hadn’t gotten my hopes up that I would feel energized by work again, figuring it would be a long slog toward retirement, so this was a wonderful surprise. Also work-related, two colleagues and I collaborated on an edited scholarly collection that will likely be under contract very soon.
  • I am nearly done writing a book geared toward helping young-ish/middle-aged widows through the first year. Within the next week or two, I’ll be ready to start looking for a publisher. Generating the material for the book has been relatively easy, but organizing it into something that will be useful to another widow has taken a part of my brain that I think was out of commission for a long time after my husband died.
  • I have made great progress on Garage Mahal. There’s still a lot to go through and get rid of, but the space is cleared out enough that I was able to move a party that was supposed to take place outside into the garage when it started raining.
  • As the item above indicates, I’ve entertained. Once. My husband and I used to throw dinner parties and other gatherings several times a year and the thought of doing it without him felt insurmountable for a long time. In the spring, I started thinking about hosting a celebration for my daughter’s 21st birthday and over the course of a few months, I got more and more excited about the idea.
  • I’m enjoying cooking again. Cooking was a reliable relaxer and stress-reducer for me for decades, but after my husband died, I had no appetite for months. When my appetite finally came back, I had to have unexpected brain surgery and lost my appetite again. It’s finally back and cooking is interesting again.

What I’m still not ready to do:

  • Scatter the last of his ashes. I’ve now scattered my husband’s ashes in South America, the Pacific Ocean, and his favorite place in Oregon. Friends scattered some in the Colorado River. There’s one last place I need to scatter them: in a wide-open valley. All the places I’ve scattered them have had special meaning, but the wide-open valley feels particularly personal to me. The last camping trip we took before his stroke was to a wide-open valley. When I look at photos of us together, the first ones I go to are from that trip. A few days before he died, we talked about what happiness looked like to each of us and he said, “A wide-open valley to camp in.” I feel like when I scatter part of him in a wide-open valley, something will be over or finished, and I’m not ready for that.
  • Camp and raft. These activities still feel out of reach for me, especially rafting. I have never rafted without Tom. I know I will eventually find my way back to both. Shortly after Tom died, a friend told me about an organization that hosts grief raft trips. I have kept that idea in the back of my mind and am tentatively planning to do one of their trips next summer.
  • Figure out what to do with his T-shirts and socks. He had a vast collection of quirky T-shirts and socks. I was going to commission a friend to make the T-shirts into a quilt, but every time I look at the basket overflowing with his shirts in the closet, my heart says, “Not yet.” The socks I have no plan for beyond continuing to hoard them for now.
  • Do something with his knife-sharpening supplies. Who else would take up knife sharpening as a hobby after a stroke? Just thinking about the unique audacity of that choice makes me burst into tears and laughter at the same time. As weird as it sounds to say, the knife sharpening equipment has sentimental value for me.