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.

grieving

Making Peace with My (Dead) Mother

For a long time after my mother died, I was angry. Sometimes I was angry that she had died when I was only 12, which made me feel like even more of a freak than I had when she was alive. Other times my anger was directed at her more personally, fixating on what I felt were her failings before she died. All through high school and college, I felt like kids who had “normal” mothers had learned things about life that I had not learned, and I held her responsible. How to be loved, how to feel secure in the world, and how to interact with strangers, for example.

Before my mother died, her addiction to alcohol made her unreliable, unpredictable, and moody. She could go from laughing to throwing things in a flash. What I had learned from her was to not trust adults and to never let my guard down.

When my daughter was a child, I read children’s books to her that taught lessons I had never learned: some days don’t go the way you want and it’s not your fault, someone else’s success doesn’t take anything from you, it’s ok to have needs and to ask for what you want, apologizing isn’t a sign of weakness.

As I parented my own daughter, I constantly realized what I had missed out on. When my daughter needed someone to advocate for her at school, I was there. When she needed to be reassured about her abilities, I was there. When she needed advice on social messiness, I was there. I had always suspected that kids with a mother had something I didn’t, but I didn’t quite know what it was. As I parented my own daughter, I learned what it was.

My anger intensified and I carried it with the indignation of the 12-year old girl I was when my mother died. Even when I had a happy memory of my mother, it was tainted by the rage I felt over what she hadn’t provided for me.

A few years ago, my therapist said something about my mother not being able to show up for me the way she probably wanted to. That reframing opened the door for me to rethink many of the beliefs I had been holding onto about my mother.

Instead of being angry with her for being an addict, I was able to feel compassion for someone who didn’t have the skills to cope with the stresses of her life. She came from an alcoholic home herself. Of her three siblings, it fell to her to care for their father when he was descending into dementia. Her marriage was a difficult one, and reading between the lines, I believe she was stalked by an ex. Certainly her life had not been an easy one.

When I think of her facing the challenges that may have led to her addiction, I wish she had lived in a time of more awareness and less shame. I imagine her waking up each morning and setting out to not drink, to be present for my sister and me—and herself. And then being disgusted with herself for not living up to that commitment, and my heart goes out to her.

Instead of being angry with her for not advocating for me, I was able to feel compassion for her never having had an advocate herself. While she may not have been outwardly affectionate, I remember her being incredibly supportive of other women who left bad situations, giving them rides to the airport or money or a place to sleep for a night. When I look for it, I can find the advocating spirit.

When I think of my mother as doing the best she could, I am filled with love and compassion for her. Holding a grudge with a dead person is a no-win situation. It’s exhausting to never be able to ask for an explanation, to know that an apology will never come. And I don’t need an apology from her. She did the best she could.

The Buddha said that holding onto anger is like drinking poison and expecting the other person to die. My mother is already dead, so holding onto anger toward her is particularly absurd and pointless. When I was able to let go of my anger, the weight of it transformed into tenderness.

grieving

Cumulative grief at 37 months

The three-year anniversary of my husband’s death was what I expected it to be—very sad for a couple of days before and the day of the anniversary and then a feeling of relief when the anniversary had passed. I’ve noticed myself feeling relief whenever a milestone passes—anniversaries, his birthday, the holidays that meant a lot to him—as if it’s an accomplishment to have survived it.

The three-year anniversary was sad, but not intense and I wondered if maybe my grief was becoming more quiet, like something that might always rumble beneath the surface but only make itself known from time to time and then in subtle ways.

A month later, my reaction to the 37-month anniversary shook that wondering out of me. For four days, I had the weight in my chest that I felt regularly during the first year, the feeling that I couldn’t take a deep breath. The weight sat there, constricting my lungs and pressing on my throat, sapping my energy.

For the first two of those four days, I was right back in the “I can’t believe he’s dead” mindset I felt during the first year. My first thought of each day was “Tom is dead,” and everything after that thought felt like a heroic effort. I spent much of those two days on the couch, sleeping or crying, in disbelief that my husband was gone.

The next two days were a little easier but I still felt the heavy fog in my brain that I had lived with during the first year. The weight moved out of my chest and concentrated itself in my throat, where it made my voice feel wavery every time I spoke.

I figured out what was going on midway through the second day. I was experiencing cumulative grief—when each new loss compounds the grief from a previous loss. A few days before this episode began, I had learned that a friend Tom and I had spent a lot of time with early in our relationship had died.

Learning of her death spurred me to look at photos from that era of my life with Tom. There were so many pictures of the three of us together—on raft trips, at a wine festival, taking a break during a motorcycle adventure. Over and over I was struck by the thought, “I’m the only person in this photo who is still alive.”

The new grief for our friend stirred up my grief for my husband.

I didn’t fight it. I gave myself grace. I canceled everything that wasn’t necessary and let myself hole up on the couch for a couple of days. I scrolled through photos of my husband, I cried, I listened to music that reminded me of times together.

He loved the singers Carsie Blanton and David Bromberg, so I listened to a lot of their music. We had seen both together and listening to their music brought back a flood of memories. Tom was an effusive audience member at concerts, yelling his appreciation for a good lyric or a cheeky band interaction. Both are clever songwriters and he found much to whoop for.

With each memory, I was torn between the warm fuzzy feeling of reminiscence and the heartbreak of knowing those reminiscences are all I have left now.

The weight gradually lifted, at least for now. I know I will never again hear Carsie Blanton or David Bromberg without the absence of my husband weighing on me.

life skills

Holding Space for Loneliness

I’ve worked hard over the last few years to build my listening skills. One of the key aspects of being a good listener is simply shutting up, and then once I learned how to do that, I had to learn how to stop using the time I wasn’t talking to formulate what I would say when I next spoke. It has taken a lot of discipline and patience with myself to just relax into listening when someone one else is talking.

I recently experienced a tough challenge to my ability to listen when a good friend of mine confessed to feeling lonely. I was surprised because they are someone I have identified as “a social butterfly,” regularly going to events with different people and maintaining many longtime friendships. I have even been a bit envious of this person’s social life in the past.

As I heard them talk about feeling like they don’t have anyone to confide in and they feel alone often, I had the urge to argue with them. They said they felt like they had no real friends and no one wanted to spend time with them. My mind immediately began assembling evidence to contradict their statements about being friendless.

I know from my own experience that being surrounded by others does not mean you aren’t lonely. In fact, the times I’ve felt the loneliest have been times I was with other people. I felt lonely when I was in grad school and it seemed everyone else was going to parties I wasn’t invited to; and when I was in college, I did get invited to a lot of parties but often felt lonely at them. So the proof my mind was gathering to invalidate my friend’s loneliness was irrelevant.

On top of that, arguing with someone when they are being vulnerable is never helpful. Telling a person who feels lonely that they are wrong to feel that way will make them feel more alone. Loneliness is about disconnection and being argued with disconnects us. I know this—but it took everything in me to sit quietly while my friend spoke and not point out what I perceived as the logical flaws in their thinking.

I struggled and floundered. A few times I noticed that when I was asking what I meant to be clarifying questions, the tone in my voice revealed that I wanted to be arguing. My voice took on the timbre of a prosecuting attorney—“Are you saying you have no one to talk to?” I wish I had said, “It sounds like you feel you have no one to talk to,” simply echoing back what they were saying to show understanding.

I had to keep reminding myself that my job wasn’t to show them that they aren’t actually alone but to listen and connect.

I’ve talked before about holding space. It means listening and offering support without judgment, without trying to fix the problem or situation. When we immediately go into fix-it mode, like I wanted to do, we invalidate the feelings of the speaker. In the case of loneliness, that would mean making them feel even lonelier.

This incident was a good reminder to me that holding space can be hard. It’s a skill that doesn’t come naturally to many people, and our society values problem-solvers, so even folks with good space-holding skills may not always think to use them.

Holding space for loneliness can help folks who are lonely feel more comfortable talking about it. When we immediately start trying to fix their loneliness, we shut down that conversation. In the case of my urge to argue with my lonely friend, arguing would certainly have had the opposite effect of connection. When someone feels lonely, proving them wrong is simply not helpful.

In trying to understand why I had such a hard time holding space for my lonely friend, I realized it’s because I often feel powerless around others’ loneliness. Because of my own experience being lonely, I know that simply being with someone else isn’t enough—although it’s a good start. Holding space means being with someone in a particular way: being open, not judging, and being present with vulnerability.

Note about loneliness: I talked about loneliness in my last newsletter. I mentioned Vivek Murthy’s assertion in Together: The Healing Power of Human Connection in a Sometimes Lonely World, that most of us feel lonely at some point but we tend to think we are the only person to ever feel alone.

grieving

How to Talk to Loved Ones about Your End-of-Life Wishes

I talked last week about how important it is to make your end-of-life wishes known before it is necessary. I emphasized that you need to have difficult conversations with whoever you anticipate will be a decision-maker for you in the event that you can’t make decisions.

Even if you can make your own end-of-life decisions when the time comes, it’s a good idea to make your wishes known beforehand to avoid surprising anyone, which could lead to conflict when you have the least energy to deal with it. For example, if your loved ones don’t know that you do not want to be on chemo if it will only extend your life for a few months, then if you are told that chemo could extend your life by a few months and you decline it, family members are less likely to argue with you and try to change your mind.

Unfortunately, there is no way to guarantee that family members will not argue with you. However, as long as you are of sound mind and able to communicate your wishes, decisions are yours to make.

Here are some tips for having conversations about your end of life wishes.

  1. Include anyone likely to be making decisions for you if you are unable to do it as well as anyone who will be impacted, such as parents, teenage and adult children, and partners. Children who are younger than teenagers may be included or not, depending on their maturity level. In the conversations I have with end-of-life care teams, most people think it makes sense to include even fairly young children in these conversations because it helps to demystify death and normalize it as a part of every life.
  2. Ask people to set aside an hour or so for the conversation rather than springing it on them when they may not be able to focus. Arrange for a quiet, distraction-free setting. My husband and I had some of our best discussions about end-of-life while we were on road trips, driving for hours on end.
  3. Let whoever you are talking to know why this topic is important to you. You can say, “I want to be sure you know what my end-of-life wishes are so that if you ever have to make decisions for me, you can do it without feeling guilty or worrying if you did the right thing.”
  4. You can use games or guides to help with the discussion. The End-of-Life Deck is a set of cards with questions that prompt you to consider what you may want at the end of your life. This website offers a few conversation starters, as well as additional resources that might be helpful for thinking through what you want.
  5. Ask the person you are talking to what questions they have and answer them thoughtfully.

Be sure to also put your wishes in writing. I highly recommend the Five Wishes guide to end of life care. 

If you anticipate that someone will argue with you about your wishes, there are a few things you can do. First, I would suggest that you try to choose someone to carry out your wishes who will not argue. Of course, that is not always possible, so you might consider having the conversation with that person with a therapist, a chaplain or clergy member, or social worker who can facilitate.

It can also help to acknowledge the difference in views. For example, you could say, “I know this is not what you would choose for yourself, but this is what I want for myself.”

grieving

Help Your Loved Ones Follow Your Wishes: make a will + advance directive and have the difficult conversations

From the moment my husband’s stroke started, I had to make decisions for him: call 9-1-1, consent to him being transported to another hospital from the original one the ambulance took him to, authorize surgery to remove part of his skull to allow his brain to swell without causing more damage to his brain, and on and on. When he didn’t wake up after his final surgery, a year after the stroke, I had to make the decision to remove him from life support. After that, decisions had to be made about cremation and a celebration of life.

As difficult as all of this was, it would have been significantly more awful if Tom and I had not talked at length before I had to make those decisions about what we each wanted in the event that we couldn’t make our own decisions. We had wills and advance directives drawn up years before we needed them. The advance directive allowed me to make medical decisions for him; the talks about what we wanted allowed me to know with confidence when to say yes to care and when to decline it; and the will allowed me to respect his final wishes in terms of who got what and what kind of memorial service he would have wanted.

You may know that you need to have a will and advance directive, but you may not know how to get started on them, or you may worry that hiring a lawyer to do them will be too expensive. You may not know who to designate to make decisions for you in an advance directive. You may not be sure who to have the conversation with about your final wishes.

That last question may be the toughest because not only do you need to decide who to talk to, you also need to think through what you want and who might be making decisions for you. That’s a lot. You may not want to think about those things, and I get that. It may help to frame it in terms of making things easier for others. When you are able to specify what you want and share that with loved ones, you’re making their lives easier because in the event that they need to make decisions for you, they won’t have to guess at what you would want, which can lead to guilt and regret.

To help you think through what you want, I highly recommend the Five Wishes guide to end of life care. Not only is the guide set up to walk you through the difficult questions, once you complete it, you will actually have a legal advance directive—no lawyer required. A hard copy version is $5 and a digital version is $15.

As far as who you designate to make decisions for you, most people select a significant other, a sibling, or an adult child. You’re not limited to those, however, so you could choose a friend, a spiritual advisor, or someone else. Talk to that person about what you want and answer any questions they have.

If you anticipate that friends or family may object to decisions the designated person makes, it’s ideal to talk to those folks and assure them that the designated person knows what you want. If that isn’t possible, the next best option might be to tell the designated person what kinds of objections to expect.

When it comes to writing up a will, if you have a simple estate, no minor children, and don’t anticipate people contesting your will, you don’t need a lawyer. Laws differ from state to state, but in Colorado (where I live), a will is considered legal and binding as long as two witnesses have signed it OR you’ve had it notarized. This website will walk you through the process.

The #1 most important thing is to have these conversations and make these documents BEFORE THERE IS A NEED FOR THEM.

death

How talking about death can help us live better

The experience of being with my husband while he died was incredibly moving. It was heartbreaking and almost unbearable . . . and at the same time, it felt magical. I know magical may be a much more fanciful word than you were expecting in reference to death. I’m surprised to be using it, actually, and yet it feels accurate.

Being with Tom as he left this life felt momentous. I choose to believe that Tom still exists somewhere in some form and seeing myself as someone shepherding him into that next adventure felt like an honor. It was one of the most moving and special experiences of my life, and it filled me with a deep reverence for life itself. When I add up all these feelings in one word, I am left with magical.

For years, I’ve been captivated by the Ram Dass quote, “We’re all just walking each other home.” Being with my husband when he died felt like walking him home, being with him as he went to a place I couldn’t follow him to. Parting ways was heart wrenching, but the walk was a deep honor. Since then, I’ve felt such gentleness toward my fellow humans, recognizing that I am walking alongside them on their walk home, even if it’s just for a few moments. That realization makes every interaction feel special—and it is, I just didn’t always recognize that.

As someone who spent most of their life deeply fearing death, I was amazed to have such a powerfully positive experience with a loved one’s death. It was also tremendously devastating, leading to horrible anxiety and an intense grieving process that I expect will last until I die. The powerfully positive doesn’t cancel out the tremendously devastating. They exist simultaneously.

A few months after my husband’s death, I attended a grief support group in which one of the other participants mentioned being a death doula. I knew the term doula in reference to birth, but I had never heard of a death doula, so after the meeting, I googled it. I was intrigued.

Death doulas, also called end-of-life doulas, function much like birth doulas. Just as a birth doula shepherds a human into life, a death doula shepherds them out. Death doulas also support family members and loved ones in their grief. Death doulas can serve different functions for different clients, but it all boils down to being a supportive companion for a dying person and/or their loved ones. I immediately knew I was interested in being a death doula.

Last month, I started an 8-week course that will end with me being a certified death doula. What I most appreciate about the training is the constant reminder that people who are dying are still alive. Until a person is dead, they are alive and should be treated with all the respect we give the living. A lot of being a death doula is facilitating people living to their fullest for as long as they can.

Another important aspect of the work and one way we demonstrate respect for dying people is by being honest with them about their impending death. Instead of pussy-footing around the subject or sugar-coating it, death doulas talk openly with clients about pain, the process of dying, and death’s aftermath. If a client wants to know what death feels like, we tell them what we know rather than changing the subject. We support dying clients in having difficult conversations with their loved ones about what will happen after they die.

This is the kind of honest, straightforward talk I craved after my husband died.

I am also quite interested in working with people who do not have a terminal illness or any reason to believe their death is imminent but, like me, they want to get right with death, which in a lot of ways actually means getting right with the life you’ve lived and will live.

For me, recognizing the certainty that I will die and leave behind so many people that I love so crazy much inspires me to savor the deliciousness of every moment I have with them. It makes me see an afternoon nap not as a waste of time but as a delicious luxury, a few minutes of doing something just for the pleasure of it. It makes me a better listener. It reminds me that when I die, no one will remember me for how much I got done but for how I made them feel.

Caregiver turned widow. Rhetoric + writing professor. Edupunk. Feminist. Buddhist. Optimist.