Category Archives: caregiving

Aging, caregiving, death, failure

Honoring Dignity until the End

I learned after my husband had his stroke how important it is as a caregiver to respect the dignity of the person you are caring for. My husband was still the amazing person I fell in love with—strong-willed, take charge, and unwilling to suffer fools. The challenges he faced after his stroke were often at odds with the traits I admired about him and that led to struggle for both of us. I had to learn ways to honor the man who was used to being in charge while we both adjusted to him not being able to be in charge the way he used to be.

I messed up all the time. One thing I never did stop doing that drove him nuts was using the word “remember.” His memory took a serious hit with the stroke and he hated that he couldn’t remember many things. Even though I knew that, I defaulted often to saying things like, “Remember, your OT said to always start putting your shirt on with the weak arm first.” I could have said the sentence without “remember” at the beginning and it wouldn’t have bothered him, but I forgot that more often than not and it irked him. Sometimes he would snap, “No, I don’t remember! I had a stroke!” out of frustration.

These moments taught me something profound about dignity: it’s not about being perfect in our care, but about acknowledging the humanity in our imperfection. My husband’s frustration wasn’t just about my use of the word “remember”—it was about his right to feel frustrated, to express it, to still be the person who could tell me when I was driving him crazy. That was dignity, too.

We were both learning how to navigate our situation, all the way up until the moment he died. Sometimes we both managed it well, but sometimes one of us managed it better than the other and had to show grace for both of us. Sometimes that was me and sometimes it was him.

My point is that my husband’s dignity remained intact until he died. Dying people are living people.

Now in my hospice work, I see similar dynamics play out. Well-meaning family members or healthcare workers slip into patterns that diminish the dying person’s dignity, often without realizing it. They’ll discuss test results over the person’s bed as if they’re not there, or use that sing-song voice normally reserved for small children and pets. I recognize it because I’ve been there, uncertain about how to act around someone whose capabilities have changed.

But what I learned from my husband serves me well now. When I interact with a hospice patient, I carry with me the understanding that this person, no matter how unresponsive they might appear, is still living their life. They’re still accumulating experiences, still processing emotions, still being themselves. Just as my husband was still himself, even when the stroke changed how he could express it.

I’ve developed what I think of as a dignity practice. I announce myself when I enter and leave a room, speaking directly to the person: “Hi Sandra, it’s Elizabeth, the hospice volunteer.” I ask permission before touching anyone or their belongings. I maintain privacy during personal care, narrating what I’m doing like I would want someone to do for me. These aren’t just polite gestures—they are acknowledgments of personhood.

Sometimes family members look at me strangely when I talk to someone who hasn’t responded in hours or days. One patient’s daughter told me, “I don’t think she can hear you,” and I said, “Sharon, I think maybe you can hear me,” and continued talking to her. Even on his hardest days, my husband was still there, still himself, still deserving of being treated like the capable, complicated person he’d always been.

Dying doesn’t erase personhood—dying distills it to its essence. Just as my husband’s stroke didn’t make him any less the man I married, terminal illness doesn’t make someone less themselves. Our job is to honor who they are until the very end.

caregiving, death

Love, Food, and Loss at the End of Life

Margaret is dying. She’s almost 90 and has chronic obstructive pulmonary disease (COPD), a condition of the lungs that limits airflow and causes shortness of breath. She’s been on hospice care at home for many months and is ready to die.

Usually when I visit her, she has very little appetite. Her children want her to eat and offer her meals, snacks, and beverages every few minutes while I am there. “Mom, how about some toast?” one asks. Margaret shakes her head slowly. “I’m not hungry,” she says softly.

“Just a bite of toast, Mom? Please?” the daughter urges, putting a plate of toast in front of her.

Margaret takes a bite of toast, looking down at the plate. She gestures slightly with the toast and asks me, “Is this the toast?”  She no longer remembers the names of many things.

“Yes,” I confirm. I deliberately do not encourage her to eat more of the toast.

Later I mention to the children that appetite loss is normal for people approaching death. I’ve told them this before, but I know that watching your mother die is difficult and I don’t know what they remember of our previous conversations. I tell them again as if it’s the first time.

I know firsthand how hard it is to watch a person you love refuse food, especially when shared meals have been important to family life for years. Margaret’s kitchen is stocked with beautiful blue Le Creuset cookware, indicating that food preparation has been taken seriously.

One of the ways I demonstrated my love for my husband Tom was by cooking for him. When we met, I was learning how to cook meat after being a vegetarian for 25 years. As a hard-core carnivore, he was happy to give me assignments: learn ten ways to make chicken, talk to the guy who owns the local meat shop about the best cut of beef for slow cooking, and of course, come up with 7 different recipes involving bacon to celebrate Bacon Week (which doesn’t technically exist, but did in his house, and ran from Christmas to New Year’s).

After his stroke, I knew his recovery was going well when he started asking for very specific foods and dishes: tangerines with crème fraiche, a combination of red and green grapes, chicken pot pie with fresh thyme. He had a sweet tooth after the stroke and loved root beer floats and chocolate eclairs—so I kept root beer and ice cream on hand. I discovered the Whole Foods bakery made chocolate eclairs on Tuesdays and Fridays and I got them delivered. He took joy in eating, thanking me for whatever I gave him and often bragging to his medical team about how well I fed him.

About a month before he died, his appetite began to wane. He no longer got excited about his morning coffee and sometimes wanted to go to bed without dinner. I made his favorite dishes—macaroni and cheese, fried chicken, chilaquiles. I made a side of bacon to go with whatever I cooked. Sometimes he didn’t care. He took a few bites of a chocolate éclair and lost interest. Even juicy fresh fruit lacked appeal for him.

I was crushed. For twelve years, he had loved my cooking and I had loved cooking for him. Cooking for him was one of the ways I made him feel special—not just serving his favorite foods, but setting the table nicely, using cloth napkins every night, sometimes lighting candles. I showed my love for him in a hundred little ways, but cooking for him was one of my favorites.

I now realize that there were signs he was dying well before he died. Like Margaret, he lost his appetite and all interest in food. He wanted to nap even more than usual. At the time, I thought he was just anxious about his upcoming surgery, but now I think he was turning away from this life and preparing for his next adventure.

Just like Margaret’s children, I kept offering food. I thought if I just came up with the right food to offer, he would eat. When he turned down a root beer float, I offered cherry pie. When he showed no interest in fried chicken, I suggested nachos. But none of it interested him.

I wish I had respected his wish to not eat and asked him instead, “What do you want?” If I had let go of my focus on food, he might have asked me to hold his hand or shared a memory with me.  

This is the question I bring to Margaret: “What do you want?”

She doesn’t want much—mostly to nap. But sometimes she wants to talk about what death will be like or whether she’ll be reunited with her dead siblings. Often she wants to sit together in silence.

At the end of life, those activities may hold more meaning than eating.

Aging, caregiving

Use Silence for More Authentic + Vulnerable Conversations

I visited a hospice patient last week who is slowly detaching from this life. I know from my end-of-life doula training that this is normal. As they get closer to death, people often turn inward, eating less, talking less, seeming less engaged with the world outside themselves. I see this happening with Margaret.

When I arrived at her apartment, she was sitting at the table, staring down a plate of scrambled eggs. Her head hung. There was a fork in one hand, but that hand rested on the table and the fork dangled a bit precariously.

“Mom doesn’t want to eat,” Margaret’s daughter told me. I have assured the daughter on previous visits that it’s normal for people to lose their appetites and that if Margaret doesn’t want to eat, it’s ok. But the daughter would really like her mother to eat.

I asked Margaret if she was hungry.

“No,” she said quietly, not making eye contact. “I’m having . . . a bad day,” she said slowly, still not making eye contact.

“Do you want to talk about it?” I asked.

“No,” she said. Despite having said she wasn’t hungry, she started tentatively eating the eggs. While she ate, we sat in silence. Each bite seemed to take her full concentration and I didn’t want to break it. When she finished eating, I helped her to her recliner, where she dozed. My entire visit passed in near silence. It was peaceful and when I left, Margaret’s daughter commented that her mother was less agitated than she had been earlier.

I’ve always loved silence, but for most of my life, I tried to avoid it unless I was alone. Unless the person next to me was a stranger or we were watching a movie, I felt compelled to fill the silence with conversation. Unless I was alone, silence felt awkward to me. I think many of us are socialized this way.

At work, I’ve championed silence. In the writing center I direct, I teach tutors to allow silence in their sessions to give their clients time and space to reflect. I set a timer for ten seconds and we sit silently for the full ten seconds. It’s hard. We are not used to ten full seconds of silence.  

When I teach, I allow at least ten full seconds of silence to pass after I ask a question. My students sometimes comment on how uncomfortable the silences in my classes are. But more often, students thank me for providing the silences, saying those moments are productive for them.

Since my husband’s stroke, I’ve been allowing more silence into my conversations. My husband needed the processing time, and I’m finding that it’s not just folks who’ve had strokes who benefit from that time.

Being with someone in silence is a great way to hold space. Filling the silence with insignificant chatter does not invite authenticity or vulnerability.

If you’re not used to being silent with someone else, it may take practice before it feels configurable to you. That’s ok. I’ve been practicing for years and still succumb to the pressure to fill the silence sometimes.

If you want to get more comfortable with silence, here are some strategies to try:

  1. Practice counting seconds in your head after someone speaks and before you speak. Notice how many seconds (if any) typically pass in silence between you and the other person. Aim to extend it by one second. It may take many days or weeks of practicing this before you’re ready to extend it by another second, but that will eventually happen. Then add another second. You will notice your conversations stretching out, like a cat settling into a sunny spot. You will feel calmer. You will be listening better, thinking less about what you’ll say next.
  2. When the silence begins, take a deep breath. Use the breath to buy yourself a few seconds, but also to ground yourself in the present moment. I do this when I’m teaching. After I ask a question of the class, I take a deep breath and let it out slowly. Then I start counting in my head to ten. I don’t allow myself to speak until I’ve gotten to ten.
  3. Remember that silence is communication. It communicates patience, leisureliness, respect, attentiveness. It can de-escalate tension. In fact, silence has been key in helping me cope with tension and conflict without getting defensive. Recently, when I’ve been in situations that could escalate into an argument, I’ve taken a deep breath and made myself count to ten before responding. Interestingly, my responses in these situations tend to take the form of questions rather than defensive statements. I ask for more information instead of telling the other person they are wrong.

Others may not like the silence and that’s ok. They may not be used to it. They may be like the students in my classes who complain that the silence is awkward. Perhaps it is. But for me, allowing space for authenticity and vulnerability is more important than avoiding awkwardness.

Accessibility + Dis/ability, caregiving

How to Support Someone Looking for a Diagnosis

Last week I wrote about why getting a diagnosis can be so difficult: it can be expensive in terms of both money and time, and patients and doctors don’t speak the same language. On top of that, there’s a social cost: someone who is trying to get a diagnosis is often dismissed by friends and coworkers as a hypochondriac or faker.

If someone you know is trying to get a diagnosis and they’ve had to go to more than one appointment or have more than the usual blood and urine tests, they are likely frustrated. They may be stressed out about how much money, time, and energy they are putting into the process. They may also feel lonely. Looking for a diagnosis can alienate someone from people they used to be close to.

When I was having what turned out to be brain bleeds before my arterio-venous malformation (AVM) was diagnosed, I was lucky to be surrounded by people who supported me. My boss and co-workers didn’t question whether I was really experiencing the brutal headaches I described, even though they didn’t see me when I was having a headache. My then-husband encouraged me to keep seeing doctors, even when we didn’t have insurance and it felt like we couldn’t afford it.

No one was questioning me besides the doctors I was seeing, but I still often felt alone. I had seen and heard lots of questioning of other people about their symptoms. For example, my grandmother had many medical issues and her husband and son regularly questioned “how real” her symptoms were since doctors weren’t diagnosing anything. They groaned audibly whenever she mentioned a stomachache or headache. When guests came over, her husband would say, “Please don’t ask her how she feels!” with a roll of his eyes.

Growing up with this allowed me to internalize the message that doctors know our bodies better than we do. Whenever one of the headaches or smell reactions came about, I had an argument in my head: one voice asking me, “Are you sure this is happening?” and another one saying, “Yes!” But no matter how emphatic the “Yes!” was in my head, there was always that second voice, gaslighting me, making me wonder, was I just weak? Did everyone have headaches like this but I was the only one complaining because I was pathetic?

Chances are, your friend looking for a diagnosis feels some shame about their search. You can help alleviate some of their feelings of being alone. Try this:  

  1. Believe them. Even if you have had very different experiences with pain, memory, mobility, organ function, or whatever, understand that your experiences are not universal. It’s fine to ask questions for better understanding, such as, “Have you noticed any triggers for the issue?,” but don’t question whether your friend’s experience is real. It’s very likely that your friend’s concerns are being minimized or even dismissed by healthcare providers. Your job as a friend is to validate their experience and support them in the difficult process of getting a diagnosis.
  2. If you’re able to, offer to accompany them to appointments. Having someone else there to listen and simply silently support can be helpful. When I was trying to get my vision issues diagnosed, my husband came with me to an appointment; being able to talk with him afterwards about what the doctor said helped me clarify my next steps. If you live far away, your friend might be able to have you “Zoom” into the appointment.
  3. If you’re not able to accompany them to appointments, you might offer to run errands for them, pick the kids up from soccer practice, or do something else to offset all the time and energy they are putting into healthcare appointments.
  4. Ask what would be helpful. If you’re not sure what they need, you can ask. “How can I help?” is a great question and much better than “Let me know if I can do anything,” which is very close to useless. You can also ask questions like, “Do you want to be distracted or do you want to talk about this?” Don’t assume you know what’s best.
  5. Aim to support, not solve their problem. Hold space without suggesting what you would do (unless they ask you).
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, caregiving

How to Talk with Disabled People

Before his stroke, my husband was the kind of man to walk into a room and instantly own it. People deferred to him because of his confident swagger, his understated confidence, and his uncanny ability to cut through bullshit without shaming the bullshitter.

After his stroke, when he used a wheelchair, spoke slowly, and experienced confusion, disorientation, and memory lapses, it broke my heart to see how differently the world treated him. His friends and loved ones didn’t treat him any differently, but the doctors and medical professionals we saw on a regular basis often spoke to me rather than him. Many receptionists would look right past Tom and ask me, “Who are you checking in?”

I tried to redirect the conversation. For example, if a doctor asked me how a prescription change was working for Tom, I would say, “Tom, what do you think of the new prescription?” Sometimes the doctor would take the hint and start talking to Tom but often I had to continue redirecting questions to Tom throughout the appointment. It was a constant battle to get many of the medical professionals to address him directly.

He did have a few wonderful health care providers who were very respectful. His neurologist, in particular, always spoke directly to Tom, listened carefully without rushing him, and asked clarifying questions to make sure he understood what Tom was telling him. His physical, speech, and occupational therapists all addressed him and made an effort to get to know him.

Other health care practitioners were sometimes shockingly disrespectful. I remember one who pulled Tom’s pants down to give him a shot in his knee without ever speaking directly to Tom or telling him what he was about to do. I was so taken aback I couldn’t collect myself quickly enough to say anything, and I apologized profusely to Tom for my failure to say anything. It was a constant struggle.

This struggle is why I was so excited to come across a video produced by the Special Olympics called “How to Speak with People with Disabilities.” The video focuses on people with intellectual disabilities but the basic advice it puts forth applies to people with any type of disability.

The video features several people with intellectual disabilities talking about how they want their health care practitioners to interact with them. They mention that they want their health care practitioners to get to know them, to make eye contact with them, and to talk to them rather than their caregiver. These are basic practices I would hope any medical professional would use with any patient, with or without disabilities, but I know from my own experiences and those of my husband that it doesn’t happen often enough.

The video emphasizes talking with people with disabilities rather than talking to them. That preposition is crucial: talking to people positions the health care practitioner as an expert imparting information to a patient, while talking with people positions the health care practitioner and the patient as partners and equals.

Any time you talk with a disabled person, give them the same respect you would give anyone else. Treat them with dignity. Speak to them, not their caregiver. Get to know them. This goes for faculty talking with disabled students, health care practitioners talking with disabled patients and clients, and anyone else communicating with a disabled person.

caregiving, grieving

How to Be with a Dying Person

Because we don’t tend to talk about death and dying in our culture, most people are afraid to be with a dying person, unsure of what to do or what to talk about.

I was with my husband when he died. During the two days between him not waking up after surgery and discontinuing life support, I was with him for 12 hours a day. COVID restrictions at the time limited guests to two at a time and no one was allowed to spend the night. Sitting with a dying person for 12 hours may sound grueling, but I found that I became so absorbed in the present that the time flowed.

More recently, a loved one made the decision to begin receiving hospice care, which means they are no longer receiving medical intervention for infections and conditions and only taking medicine for pain. Typically when a person begins receiving hospice care, it means they are ready to die, but it may take months or longer for that to happen. In the case of my loved one, they are progressing quickly toward death.

I have spent the last few evenings with my loved one and their partner.

My thoughts on how to be with a dying person are shaped by these two experiences and also my own near-death experience after I had a stroke in 1997.

Here’s my advice:

If they are able to talk, they may be hard to understand. Be patient. There is no urgency. Give them time to stumble over their words. Follow their lead about what to talk about. They may want to talk about dying or the weather or their mother or something else. Whatever they want to talk about is ok. You don’t have to try to steer them toward or away from certain topics.

If they are responsive but not able to talk, you can hold their hand. You can talk to them about memories, you can read to them, or you can be quiet. Sometimes sitting in silence with someone is more comforting and profound than filling the space with words.

It’s ok to bring a book or play a game on your phone. You might scroll through pictures on your phone and show them to your loved one, if their eyes are open, or describe the photos to them if their eyes are closed. When my husband was dying, I chanted his favorite Buddhist chant.

If they are not responsive, talk to them. The point isn’t to wake them up but to help them understand what is happening around them. I don’t know what a person who is dying and appears to be sleeping understands, but I choose to believe that they can hear us talking and feel us holding their hand or touching them gently.

When I enter the room of a dying person, I announce my arrival to the person and give a description of what I’m doing. I might say, “Hi, Loved One. It’s Liz. I’m here to say hello and tell you I love you. I’m going to sit down on your right and hold your hand.” I also announce when I’m leaving.

When I visited my loved one today, I noticed several vases of beautiful flowers in the room that others had brought. I described them in detail to my loved one so they could picture them if they wanted to. I told my loved one how good it was to see them looking peaceful.

When I was in a drug-induced coma after my stroke, I did hear people’s voices. I don’t know if I captured everything that was said around me, but I was certainly aware of who was in the room with me and the broad strokes of the conversation.

It’s ok to cry. It’s ok to not cry.

You don’t need to entertain them, but it’s ok to laugh. Death may feel like serious business, but I think my husband enjoyed hearing his loved ones laughing around him as he died.

If the person is at home, it can be nice to bring some food for their family, if they live with others. At my loved one’s home, people have brought cheese and crackers, brownies, fruit, salad, and other easy-to-eat food, along with many bottles of wine.

Take care of yourself: take breaks, stay hydrated. I have had to set alarms to remind myself to go for a walk, have a drink, and eat a snack every few hours.  

It can be exhausting emotionally, which may leave you feeling tired, irritable, or disoriented. You may feel calm when with the person and then weepy and anxious later. Or vice versa. I find that I feel completely calm and open while with a dying person and then I’m very anxious and sad after. The anxious sadness can last for days.

It can help to remind yourself that being with a dying person is an honor that not many people get to experience.

caregiving, grieving

Another Caregiving Stint Brings on Grief Again

After a loss, each new experience hits differently. It hits in the context of the loss. Nothing I experience will ever again be uncolored by the stroke and death of my husband.

My daughter recently had surgery to fix an abnormality in her hip. The surgery involved her being put under general anesthesia. After the surgery, the surgeon came out to say everything went well, but I still had a tight feeling in my chest. My husband’s surgeon had told me what a great success his surgery was—but he never regained consciousness and died two days later. I couldn’t draw in a deep breath until I saw my daughter a few hours later and she was conscious and talking.

Before my husband died, I knew there were risks to any surgery. I knew people occasionally didn’t wake up afterwards. I signed all the consent forms when my husband went in, knowing something could go wrong. But it wasn’t until he didn’t wake up that I really understood. I’m not implying that anyone tricked me or that I made a mistake. I would still sign the forms today. But now that I’ve experienced my husband not waking up after surgery, I will never again blithely assume that a surgeon’s report that things went well means anything.

After her surgery, my daughter stayed with me for a couple weeks and I got to take care of her. She didn’t need the level of care my husband did, but she did need help getting in and out of bed, showering, and getting dressed. Each of these activities filled me with memories of caring for my husband.

Sometimes when I remember taking care of my husband before he died, I think I must be idealizing the situation. Surely I couldn’t have loved it as much as I think I did. Who would love being woken up in the middle of the night to help someone use the bathroom? Who would love doing countless loads of laundry because of uncontained body fluids? Who would love having their own activities interrupted constantly by someone else’s needs? But taking care of my daughter made me realize yes, I really do love caregiving.

I consider caregiving an honor. When somebody allows me to see them in such a vulnerable state, I am humbled. My husband prized his independence, as does my daughter. For them to not just consent to me caring for them but to accept it with grace allows me to perform caregiving tasks with grace. Grace begets grace. I try to make it as easy as possible for the care-recipient to accept with grace. I like who I am when I am caregiving—I am patient, accepting, and present in the moment. It’s like Zen meditation for me. I remember feeling that way when my daughter was a baby and needed diaper changes.

Caring for my daughter after her surgery was significantly different from caring for my husband, though, and those differences triggered a lot of sadness in me. My husband had his stroke during the pandemic, so we were much more isolated during my caregiving of him. My daughter had a steady stream of visitors, both in the hospital and once she was at my house, and it was also possible for her dad and friends to help with some of the caregiving. For example, several times when she stayed up later than me to chat with visitors, the visitors were able to help her get ready for bed so that I could keep sleeping. That simply wasn’t possible with my husband.

I also knew my daughter would be able to move back to her apartment after a few weeks, so I could enjoy the caregiving, knowing it had an endpoint that would signify progress in her recovery. That wasn’t the case with my husband. His stroke was massive, destroying 2/3 of the right hemisphere of his brain. He was always going to need significant care and sometimes the specter of caregiving forever weighed on me.

Several times while taking care of my daughter, I was overcome by waves of sadness that I wasn’t always able to give my husband the same level of patience and good cheer I gave my daughter. My therapist reminds me that I did the best I could at the time for my husband. I know I did. I also wish I could have done more, been more, known more. The pandemic complicated everything, as did financial pressures, the extreme complexity of my husband’s case, the nightmare of navigating health insurance, and his depression and anxiety.

Within those constraints, I did well. This fresh grief over not being the perfect caregiver isn’t really about my caregiving. It’s about not having more moments to show him my love.

caregiving, life skills

Caregiving as Couples Therapy

I was my late husband’s caregiver for 53 ½ weeks after he had a massive stroke. He was paralyzed on the left side and had a condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. The left neglect impacted his vision, hearing, and attention, so he often didn’t process sounds that originated to his left, even though his hearing was fine. If a person he was talking to moved to his left, it seemed to him that the person had simply disappeared.

I had to help him with everything from dressing and walking to toileting. I had to manage his medications, remind of things his injured brain couldn’t retain, and do all the cooking, cleaning, and laundry. (I admit I let much of the cleaning slide.) It was a lot of work, but I miss those days tremendously.  

Caregiving gave us the opportunity to get to know each other in new ways. His stroke and my becoming his caregiver were unexpected and not something we would have wished for, but we both agreed that our relationship changed for the better because of it.

We got a glimpse of this the year before his stroke, when my vision worsened to the point where I could no longer drive. I took the bus to work, but my husband began driving me to the grocery store for my weekly trip there. The plan was for him to wait in his van while I shopped, but when we got there the first time, he said, “I better come with you to make sure you’re doing it right.”

We ended up having fun—he asked questions about why I bought the brands I bought (I usually have strong opinions about food), he tried to sneak all sorts of things I would never buy into the cart (the very worst flavors of Pringles, for example), and he made it look like there were stairs to a secret basement in the produce section. His antics that day got him tailed around the store by the security guard.

We laughed so much that we did all the grocery shopping together after that, but typically without catching the security guard’s attention. Neither of us wanted me to lose the ability to drive, but the shift in our relationship meant a little more time together. A tedious chore became a time to enjoy each other’s company.

That realization helped us understand that when I became his caregiver, we would need to continue enjoying each other’s company. A caregiver and care-recipient have to spend a lot of time together and if it’s not pleasant time, caregiving becomes a chore and care-receiving becomes an indignity. Both caregiver and care-recipient have to work at the relationship to make it a partnership.

One thing we did that made caregiving feel like a partnership was talk to each other while I was helping him with something. We simply said to each other what we were doing. If I was helping him transfer from the bed to his wheelchair, he might say, “I’m going to count to three and then you’re going to sling my ass from the bed to the wheelchair.” I would repeat that back to him, adding, “First I’m going to confirm that the brakes are on.” We would wink at each other after we had a plan. It helped us stay on the same page, but it also gave us a chance to be silly and loving.

Another thing we did was to constantly express our admiration and appreciation for each other. We both recognized that the other one was working hard, even when things didn’t go as planned. When he fell while walking across the dining room and it took us an hour to get him up again, I told him how much I appreciated the effort he was putting into walking with his hemi-walker and he expressed his appreciation for my patience. We both reassured each other that we would eventually get him up.

Because I needed to be available to him at all times, we got really good at telling each other what we needed. When I got frustrated, I couldn’t just walk away and leave him alone because he needed me for so much. When he got frustrated, he couldn’t leave without me helping him. We learned to say to each other, “I need to take a few minutes to collect my thoughts” or “I need a few minutes to myself.”

Of course we both had moments of crankiness, being short-tempered, and the like, but we also became quick to apologize. We were both angry at the stroke, not at each other.

I wish I could have learned these lessons in communication, patience, appreciation, and compassion sooner and in some other way, but I am grateful that my husband and I got to do that growing together.