Monthly Archives: August 2023

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.

grieving

Twenty-Six Months Out

My husband has now been dead for two years and two months. Twenty-six months. Seven-hundred ninety-two days. He’s been dead for longer than the amount of time we knew each other before we got married.

Every time I do the calculations of how long he’s been dead, I’m astonished. Sometimes by how long it’s been, sometimes by how much longer I probably will live without him. It takes my breath away every time. How can he really be gone? How can I really be moving forward, finding joy in every day? I don’t know the answers to these questions, but I know that he is gone and that I am moving forward, finding joy in every day, without exception.

Some recent milestones:

I went on a big trip last month that gave me the opportunity to leave some of his cremains in a beach spot that Heidi Klum is rumored to visit from time to time. I hope he gets a good view of her in a bikini at some point.

On that trip, I relaxed in a way I have not relaxed in years. Since my husband died, I’ve spent a lot of time sitting still, napping, and doing things that probably look like relaxing, but my mind has been either numb or occupied, and one thing my late husband taught me is that real relaxation is characterized by a mind that is free to wander. I relaxed on the trip in a way he would approve of.

(Sidenote: He taught me everything I know about relaxing. He realized I needed lessons when he came into the dining room one day and saw me sitting with perfect posture at the table with a glass of wine. “What are you doing?” he asked. “Relaxing!” I told him. He just shook his head sadly and said, “You’re doing it wrong.” Lucky for me, he took me under his wing.)

That feeling of spaciousness in my mind enabled me to do something big when I got home. I moved two sculptures that had been in my bedroom up to the living room. This may sound anti-climactic, so let me give a little context. When my husband remodeled our basement bedroom in 2015, he built two niches for art into the wall opposite the bed. They are lit beautifully. We bought a sculpture together to put in one and then he gave me a second one as a gift.

I’ve loved having the two sculptures in those niches, lit to perfection, but while I was on my trip, I began thinking about shifting the energy in my bedroom. It’s my bedroom now, not ours. I decided to move the sculptures up to the living room and find something new for the bedroom art niches.

Now that the sculptures are in the living room, everyone who comes into the house sees them and comments on them. They are getting much more attention and they give me an opportunity to talk about my husband. The empty niches in my bedroom feel spacious and open to possibilities—a feeling I like.

I am also visiting the bench commemorated to him less often. I went daily for a long time, then weekly. If I went more than a week without stopping by, I would begin to feel anxious. I’ve gradually stopped feeling the anxious desperation to get to his bench. When I went on this recent trip, it wasn’t until my third day back from my trip that I found myself pulled to it while walking the dogs. I hadn’t even planned to visit it, but when I got within a block of it, I felt pulled there.

That feeling of being pulled is familiar to me now. So many times, I’ve found myself at the bench without any memory of making a decision to go to it. That’s what happened on my third day back—my pace quickened without my conscious knowledge of it and suddenly I was there, sitting on the bench, tears spilling over my face. In those moments when I find myself suddenly at the bench, I’m always surprised that life goes on around me. On that particular day, I noticed a woman and her personal trainer doing lunges across the park, young parents and a sobbing toddler walking slowly by, my dog sniffing around at the grass.  

These are reminders that life does go on. My life goes on without Tom, and I like to think that his life beyond what I can comprehend goes on, too. Just as I’m having new adventures without him, he’s having new adventures without me. I hope our paths will cross again in the future, but how that will happen is beyond me.

grieving, normalizing what should be normal

Finding Judgment-Free Zones in Grief Support Groups

I love grief support groups. Before my husband died, I had only had one experience with support groups, but it was an outstanding one. In 1998, after I was sexually assaulted, I joined a support group for sexual assault victims. The two therapists who facilitated the group were amazing and I kept in touch with several of the other participants for years afterward. So when my husband died, I knew I would find a support group helpful.

I wrote nearly two years ago about how much value I was finding in grief support groups then, and I continue to find tremendous comfort in them. I’ve been happy to find a wide variety of grief support groups, with different degrees of focus, structure, and purpose. As my needs as a grieving person have shifted, I’ve gravitated toward different types of support groups.

Immediately after my husband’s death, I joined one specifically for people who had lost a partner. That group met once a week via Zoom and was an open group, meaning people could join or leave whenever they wanted. Some people came for just one meeting, others showed up sporadically, and a few were there reliably every week. I was there every week for about three months and then attended sporadically for another three months.

When I first joined, I was still trying to wrap my head around the fact that my husband was dead and it was affirming to hear from others who were also having trouble with that. Learning what others who were further along in their grief journey helped me imagine what I might experience in the future.

That particular group was unstructured, so participants could raise any topic for discussion. Often someone would immediately suggest a topic or offer a situation they were struggling with, such as feeling out of place at social events that seemed designed for couples, for discussion. People who had experienced the situation or similar ones could share how they had dealt with it. We would discuss that topic or situation until it organically segued into something else.

I also joined a loosely organized group of widowed people in Denver who meet in person for activities twice a month. I’ve participated sporadically in this group, in part because the activities are often scheduled at times that don’t work for me or they are in places that are difficult for me to get to without being able to drive. Most meetings for this group are food-oriented, such as meeting at a bar for happy hour or going to a food hall for a meal.

There are no facilitated conversations but being a group of widows allows a sense of familiarity with the unspoken challenges of life situations non-widowed people might not recognize. For example, when I mentioned at an event that my daughter had moved out on her own, the other widowed people understood that an empty nest for a person who had lost their partner was not the long-awaited “freedom” a married person might experience.

Most recently, I participated in a Zoom support group for bereaved people in general. There were folks who had lost children, friends, partners, and pets. The group met four weeks and was a closed group, meaning everyone was expected to participate in every meeting.

Unlike other groups I’ve participated in, this group had a curriculum, workbook, and much more structured meetings. The curriculum and workbook gave the group more of an educational and informational bent than the other groups I’ve been a part of, which I appreciated. I think when I was first widowed, my priority was finding encouragement and being in environments that normalized grief. Two years in, I was less consumed with adjusting to widowhood and more interested in integrating my loss into the very rich and fulfilling life I’m cultivating.

I continue to sporadically participate in the Facebook widow groups that I’ve mentioned before. I like that these groups are available 24/7 and that I can disengage for weeks or months at a time, but then if I feel the need to get a fellow widow’s perspective on something random at midnight, I can do that. These groups have no facilitators but because they are on Facebook, it’s easy to block or snooze anyone I don’t want to hear from.  

For me, being in community with other people who are grieving is comforting but also gives me practical ideas for coping. I regularly gain insight about grief and myself through these groups. For example, in one meeting, I heard about someone who wrote a letter to their dead loved one every year on that person’s birthday. The loved one had died several years ago, so there was a collection of chronological letters that allowed the survivor to see how they had grown as a person in that time and how their relationship with their dead loved one had continued even thought that person had died. Although I will not adopt this specific practice, it gave me some ideas for thinking about similar ways I could continue to nurture my relationship with my dead husband.

Most importantly, support groups of all sorts are a judgment free zone. No one in a support group will tell you you’re doing grief wrong or taking too long to “get over” your grief. No one will avoid eye contact with you because they’re afraid your grief is contagious. No one will pretend your grief doesn’t exist.

grieving

My Dead Husband’s Love Language is Vacuuming

I’ve mentioned before that I still talk to my dead husband, but I don’t think I’ve said much about him talking to me beyond the time I felt his hand on mine after I had surgery last fall.

Many people who lose a loved one report that their dead loved one makes appearances in different ways. Missing items of the dead person turn up mysteriously, survivors find themselves being followed by an attentive bird, they receive communications though mediums and psychics, and more. One very common report is of flickering lights. Even And Just Like That, which gets so much about grief and death wrong, has an episode in which Carrie’s lamp starts flickering and she suspects it’s her dead husband.

I have no idea why dead people would be particularly fond of electrical means of communicating, but I can attest that I have experienced it. My lights have flickered occasionally, but most of the communication seems to be through our Roomba. After his stroke, my husband ordered a Roomba so he could, as he put it, “contribute to the housekeeping.” He took great pride in running it a few times a week, usually saying something like, “Put your feet up, babe, and relax for a while. I’m vacuuming.” He was oddly connected to that Roomba.

After he died, I forgot about the Roomba. I left it plugged in but since I didn’t even have the app on my phone, I never ran it. Five months after he died, the dusty Roomba sprang to life, came off its charger and spun around, then went back to its charger. My daughter was there and we both immediately said, “Tom?” There was no answer, but we both felt warm and fuzzy and it kicked off an hour of reminiscing.

I continue to leave the Roomba plugged in and every once in a while, it repeats the little dance. Now when the Roomba stirs, I just say, “Hi, Tom! I know you’re there. I love you.” A vacuuming device has never made me feel so loved.

A few days ago, as I was helping my daughter get ready for a major surgery at 4:30 in the morning, the Roomba started up. There may be rational explanations for the Roomba’s stirrings, but the timing of this event was particularly uncanny. Of course if my husband could let us know he was thinking of us and hoping for a good outcome for my daughter, he would. Why not through the Roomba?

I have never felt like my mother communicated with me after she died, although I desperately wanted her to. I missed her intensely but have never felt her presence with me like I have with my husband. I have never felt like my grandparents or others close to me who died communicated with me after their deaths. My husband is the only person I’ve ever lost who I believe has communicated with me after death. There are the Roomba episodes, a couple of times when I felt him holding my hand or shoulder, and a handful of other incidents, plus two contacts through psychics.

I know I’m not alone. A Psychology Today article reports that a majority of people who have lost a loved one believe that person has communicated with them after death.

When I’ve shared my experience, I’ve gotten a variety of reactions. One person said they were surprised someone “as smart as” me would believe this. Others have tried to convince me that it’s impossible that Tom has been communicating with me and they’ve wanted to explore alternative explanations for the Roomba activity and other incidents. I am simply uninterested in this line of thinking. I am making a choice to believe that my dead husband is communicating with my daughter and me through our Roomba.

Most people I’ve shared these experiences with have said something to the effect of, “I’m happy to hear that this gives you comfort.” I think that’s a wonderful response. It is neutral, neither agreeing that Tom is communicating with me nor trying to convince me that he isn’t. It isn’t argumentative. It is respectful of my choice to believe what I want.

That choice doesn’t hurt anyone, doesn’t cost anyone anything, and makes me happy. When he was alive, I loved when he helped with the housework, and it makes me feel warm and fuzzy to think that he still wants to help vacuum from time to time.

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.