Different but the Same
Posted by wendiwendy
I thought I’d talk a little bit about a couple of different things: caregiving, and how the grieving process has been for me. It goes without saying that everyone grieves differently, and so many things have an impact on your experience, not the least of which is who you are grieving, how they impacted your life, and how they died.
Because we knew Dave’s illness was terminal pretty much as soon as they told us he wasn’t a candidate for surgery (resection or transplant), I started grieving right away. I had 3-1/2 years to confront what I imagined the future held for both of us. And although the reality of it still hit way harder than I ever could have dreamed, I think having that time kept me from becoming completely consumed with grief and despair after Dave died. In a way, I had worked through some of it at that point.
One thing I did after he died was sign up for a daily grief and bereavement newsletter that I found on the funeral home’s website. It’s been amazingly helpful, and a lot of days the message touches on an emotion I happen to be dealing with right at that moment – it’s been kind of weird (good weird) like that. On a funny note, I mentioned to my funeral arranger that I’d signed up and found it really helpful. She had no idea they even offered that on their website! I showed her the email I’d received that day, and she made a note so she could mention it to future people when she counseled them.
I’ve been reading some books too, mostly memoirs, to see how other people grieve. One thing that came up a few times, in these books and in the newsletter, is that the five stages of grief were actually not meant for grieving people; they were meant to apply to people dealing with a terminal illness. I had no idea! I’d kept thinking about those stages and wondering which one I was currently in (and also wondering why I never felt anger). This is an excerpt from the newsletter:
Elizabeth Kubler-Ross published the landmark book On Death and Dying in 1969, which proposed a model that included 5 stages: denial, isolation, anger, bargaining, depression and acceptance. Although deeply embedded in our culture, this model has been misapplied to those in mourning. It was really intended to describe the adjustment process undergone by terminally ill patients in relation to their own death.
I’m almost done reading a book called Dream New Dreams. There was a lot I could relate to in this book, which was kind of rare. The other books talked about things like all the people that dropped by and how to manage all the food you’ll get, which did not happen to me at all. One book was written by a girl grieving the death of her father, which is a totally different thing from losing a spouse.
But this woman’s husband had pancreatic cancer, which spread to the liver. A lot of the symptoms he dealt with were things Dave went through, and I could really relate to some of the caregiving aspects she mentioned. I didn’t talk a lot about the caregiving part of Dave’s illness when he was alive. For a long time, there just wasn’t much I had to do.
As 2021 began, he was becoming more nauseous, so my focus was on finding ways to help him deal with that. Then he had all his teeth pulled for his dentures in April 2021, so I spent a lot of time planning meals he could eat while his mouth healed. As soon as he healed from oral surgery, he went into the radiation treatments. He had already lost weight from not being able to eat normally, and once he had the liver radiation, he just lost his appetite.
My days were consumed with watching him waste away, and trying desperately to get some calories into him. The author of this book mentioned the same thing, plus worrying as each new side effect popped up. Dave’s legs and feet became horribly swollen, and nothing brought the swelling down. I bought him compression socks, showed him how to lay down with his legs and feet up against the wall, etc. These things helped temporarily, at least.
She mentioned the slow, slow walks to hospitals and doctor’s offices. I had forgotten about that. Dave lost all of his energy and endurance. Depending on how he felt, I would either drop him off at the hospital entrance while I parked and walked back to meet him, get him a wheelchair, or we would take one hesitant step at a time to all the appointments he had.
He had fluid in his abdomen that made it hard for him to breathe, just like this lady’s husband. Dave had a drain placed in his abdomen, and I became the person who drained the fluid from his belly on a daily basis. Draining this fluid, though, threw his electrolytes off balance. He was on sodium pills, which I’m sure didn’t help his swollen legs and feet. It just seemed like we’d get one thing under control and something else would get out of whack.
I was the one keeping track of his medications (he took different pills morning, noon, and night). I researched possible reasons for side effects I was noticing. His hands started shaking, and his voice became so hoarse that most people couldn’t hear him. (I could read his lips, thankfully.) Writing it all out sounds so horrible but these things came up slowly and we tackled them as they did, and I just absorbed the new caregiving tasks into my daily routine. I never stepped back to take it all in and realize how dire the situation really was. I just kept thinking eventually we’d get on top of all these side effects and Dave would feel better.
Dave was never the type to complain or to ask for help, and this short period of caregiving gave me a chance to feel like I was doing something to help him. I mean, this was a man who wouldn’t even let me go get him some Kleenex if he had a cold!
Reading this book made me kind of sit back and remember what last year was like. It actually felt good to read along and nod and completely relate to this stuff, like I wasn’t so alone even though it was all in the past now.
But of course, her situation was not mine. Her husband had a lot of money and made sure she was set financially after he died; money was not even a consideration for her. Dave couldn’t do that – he didn’t even have life insurance because he’d had leukemia in the early 90s and nobody would insure him. When he died, our already minuscule income was cut in half. (I did notice that all of the books I’ve read were written by people who were financially well off, actually. I guess us poor folks don’t bother to write memoirs about grief!)
She also had three young children to care for, and I was lucky enough that my children were grown and on their own after Dave died. They also immediately moved when they found out her husband’s situation was terminal. Dave and I considered this, but then he was doing so well that it didn’t seem as urgent. When he got sicker, we did look at smaller places, townhomes, and quickly realized we really couldn’t afford to move. I had to make sure wherever we moved was a place I could afford on my own income, and even an apartment was pushing it. A townhome, with association fees, was out of the question. (The mortgage here is actually less than the rent on my apartment in 1985.) When Dave grew really ill, I quietly worked up a budget to be sure I could afford my home even without Dave’s pension.
This post is really meandering, isn’t it? I’m mainly thinking out loud, in relation to this book I’m reading. Thinking about how we all have different life situations, different grief, but we are so similar as well. There’s no right or wrong way to grieve. I can sometimes stand outside myself and observe how my grief has changed in the past six months. I have long stretches where I feel close to myself again, something that last fall I thought I’d never achieve.
I’m almost halfway through this first year without Dave, and I sometimes wonder if I should be doing more. Working toward something? Mostly I just get up every day and hope to find a few things that will make me smile. So far in my life, things (love, jobs, big transitions, houses) seem to come along when the time is right, and the less I try to influence the outcome, the better things go. When I’m frantically trying to make something happen, it never works.
So I feel … lazy? … just kind of waiting things out. But also hopeful for the future.
About wendiwendyI'm a real-life bionic woman.
Posted on March 18, 2022, in Grief/Bereavement, Not Related to Hearing Loss and tagged bereavement, cancer, grief, widow. Bookmark the permalink. 14 Comments.
For some reason, your post reminded me of this time … Dh liked to go to an emergency room a little smaller, quieter, and farther away than the big one nearby where all the beltway car accidents ended up. He often insisted I take him to this emergency room for one reason or another. I knew where to park nearby, and I knew there were a bunch of wheelchairs lined up by the door for people to use. And somebody showed me how to set & release the brake for this kind of wheelchair.
One time, we needed to go to that hospital to get something … records? Some kind of scan? A record of a scan? I don’t remember. Dh needed to be there to get this thing, we didn’t have a doctor’s order so we knew we would have to talk our way into getting the thing, we weren’t sure where to get it in this hospital. Dh couldn’t walk far, but I knew where to get a wheelchair, so we parked near the emergency department, stole one of their wheelchairs, and then wandered around the hospital until we found what we were looking for. We managed to talk them into giving us what we wanted, and we had lunch in the cafeteria (this was before Covid). Then we returned the wheelchair and went home. I used to say my superpower was being able to walk into any part of a hospital and look like I belonged there. When you are pushing a wheelchair, you really look like you belong! Thanks for reminding me of this memory.
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Sindi, you are amazing. I love this story, and I love your confidence! Hugs to you ❤
I can relate to the subtle change in degrees of caregiving. After it was over my aunt and uncle came to the mom’s house right before the funeral. They saw all the machines and listened to us explain each one and a story about mom’s usage etc. When we were done they looked at my sister and I in shock. HOW had we been able to DO all of that? Well, it didn’t start out that intensive.
Much love to you in the next six months as you continue to navigate this change of what is normal.
Little pssst from this friend… you should consider self-publishing a book on your experience of all of this. As a person with disabilities, caring for someone with disabilities in end-of-life care, limited incomes, etc. People would buy it Wendy. More importantly it could help you process… much like blogging does for you and I. We seriously have to meet up some day. Much love to you.
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Thank you for everything, Denise – sharing your life, your grief, your support, your love. It means the world to me!
How sweet your thoughts-feelings translate into your writing. You have a unique ability to draw a picture with your heart and words. Thank you for sharing. I believe you are exactly where you need to be today. Your grieving, I’m sure will evolve as your days progress into new different places. U are loved and cared for and love learning about you. Hugs
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Thank you so much for all of your love and support. ❤ I sure hope I get to hug you again someday soon!
With the caveat that I haven’t been where you are, I don’t believe you should be pushing yourself to do more, or be ahead of where you are. You are. You will get to where you will be. It takes as much time as it takes.
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This is so true! I guess the more important thing is to just be aware and open to possibilities that come up. 🙂
My husband passed recently from cancer also, and reading your words took me right back to that slippery slope of gradual decline. We just handled each new setback as best we could, because like you said, we thought it was only temporary, just until we got on top of the symptoms.
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Nancy, I’m so very sorry for your loss. ❤ There's something to be said for having hope – it helps us get through those hard days.
Thank you for sharing. Your writing is so heartfelt and I appreciate reading it. I hope you find several things that make you happy today 🙂
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Thanks so much, Ellen!
I just loved reading this, and your kindness and strength and love for Dave radiate through every word. I would 100% read your memoir. (And for what it’s worth, you are NOT lazy — I bet you will look back on this time and see all the work of grieving you are doing.)
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Thank you, Suzanne – you made me smile! 🙂
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