Letters From Cancerland: The View From The Other Side

The young woman looked at me with concern in her eyes. “So how are you handling this? Do you feel you are coping okay? Is there anything we can provide you?”
No, this was not a social worker at the oncology clinic I frequent. I was not being asked these questions as a patient at all. I was being asked these questions as a caregiver for my elderly aunt.
I have been my Aunt Ginger’s caregiver, first informally, then formally, for the last three years. In recent weeks, the caregiving duties have increased tenfold, thanks to a recent injury and the always present, constantly advancing dementia. We have finally hit a plateau, a good plateau, but with Aunt Ginger’s age (85) and memory loss, I know the way ahead is only down.
In recent weeks, there have been rounds of doctor visits, rounds of antibiotics, rounds of my stopping by daily to inspect and then bandage a leg gash that Aunt Ginger could not remember happening. I had to take control of the antibiotics, so she didn’t take too many in one day. I also had to take control of the bandages, tape, and topical ointment for her leg, so she didn’t redistribute the items throughout her apartment, an activity that caused me several merry mornings of "where did she put it today?"
Aunt Ginger lives a block away, and for two weeks I was carrying all the items, including the antibiotics, in a little blue bag. Our public schools went back into session at about the same time, and as I trotted back and forth between Ginger's apartment and our house, I felt like a schoolgirl swinging her lunch bag.
Except when I hit the caregiver wall and fell apart. I’ve had a few meltdowns – not in anger, but in exhaustion – at home, in private. The meltdowns, not surprisingly, are often on the heels of a night of poor sleep and an overbooked day topped with feeling lousy physically.
At about the time I fell apart for the second or third time, I finished reading Passages in Caregiving by Gail Sheehy. I cannot say enough about this book, other than I ended up buying my own copy. Reading Sheehy, I smacked my forehead at the obvious errors in my caregiver thinking.
I am the caregiver for Ginger, but I am also the caregiver for myself. Sheehy stresses over and over that the caregiver needs to take care of his or herself as part of the overall continuum of caregiving, which she compares to a labyrinth. Not a puzzle, not a maze, but a path that is not always visible or predictable.
Taking a deep breath and a few steps back from the brink, I saw that I let the events and stresses of the last several weeks invade my personal realm. No wonder I collapsed. Protecting personal time and space, including time and space with my husband Warren, is not only important but critical to my being able to take care of health issues, jobs, Aunt Ginger, and the rest of daily life.
Being the person giving the care, instead of the person receiving the care, has been an enlightening experience for me. I have to accept that I can’t do it all. And I certainly can’t do any of it perfectly. Sometimes, the best I can do is balance just a few things. That’s why Aunt Ginger and I met with the social worker from the Council for Older Adults to talk about starting some in-home services.
Being the caregiver has also made me realize that, as my needs increase, I may have to adjust my attitude towards accepting care. Aunt Ginger sits on the couch and fumes sometimes. “I don’t like this one bit,” she’ll say. “I’m not talking about you. I’m talking about not being able to do everything for myself like I used to be able to do.”
Listening to her, I know that the myeloma will likely put me in that position in the future. At some point, I will have to submit to a loss of some independence. At some point, I will have to ask for more help than I am accustomed to or want. At some point, I will have to accept that I can’t do it all for myself. At some point, the best I will be able to do is balance just a few things.
With one exception, that being Tabitha Tow Burns, all of us who write columns for The Myeloma Beacon write from the patient’s perspective. That’s what we are, after all. We filter everything through our viewpoint. And sometimes that patient viewpoint isn’t pretty.
I do as much now as I can without help or intervention. Warren is very patient with my refusals for assistance, reminding me that he is just trying to make things easier on me. I sometimes say things in reply that make him wince. My patient filter is not a fine one, and my frustration shows in my responses.
My caregiver role is teaching me that time can move at the speed of a slow tortoise. My caregiver role is showing me how to accept that, sometimes, that’s just the way it is, be it an interminable medical appointment or the twentieth discussion of a long dead classmate I never knew. My caregiver role is teaching me patience.
I just hope I learn enough now to carry it into the future when I am on the receiving end of the caregiving.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi April, Thanks for a poignant description of your caregiving of your elderly aunt. I am sure that she is very lucky to have you helping her so much. Hopefully there is a social network whereby, if she can no longer stay in her home, there will be a place for her in a care setting too. It must be very difficult to see a loved one slide into dementia.
I really like Gail Sheehy's books and have read others of hers about 'Passages'. I liked the one about the decades of ones life, which I read maybe 2 decades ago! Perhaps we can start the book club going again. For your last column, several people suggested good books to read. Sheehy's book on 'Caregiving' sounds like a 'must read' also!
Hi April, My goodness - Thank you so much for sharing. I am the caregiver to my wonderful husband, who was diagnosed with MM in December, 2013. I have been reading everyone's columns this past year, and it has been my life-spring to hope and education - even though I have been silent in responding (typically, because it is late at night, and I'm on my iPhone / iPad without a good keyboard to respond from).
To think that you are dealing with your own diagnosis, and also being the main caregiver to your aunt, is amazing. My mother, who was the sweetest person in the world, suffered from Alzheimer's. What a devastating disease. It's so hard to be an integral part of a loved-one's life who was one person for their whole life, and then that person somehow left, and they became someone else. The bottom line is, though, that they are still that same, wonderful human being who deserves the best loving care they can possibly get. Your aunt is very lucky to have you in her life, but it's also important for you to remember to give what you "can" to her, and to please take care of yourself. There are other people who can and will care for her needs as well.
Even before my husband was diagnosed with MM, we went through 4 months of trying to figure out what in the heck was going on - bloodwork, xrays, discovering 4 compression fractures, vertebroplasty to fix those, then more bloodwork realizing "something else" was going on. I was thrown in to a complete caretaker's position. My husband wasn't able to even get in or out of a chair, bed, etc without help.
Once we knew what had caused all of this, he started treatment - but it was another 3 months before he was well enough to really get around. I didn't feel it was even safe to leave him alone for longer than an hour or two. Being a realtor, that was a challenge - and it came to the point where we needed to consider hiring someone to be with him when I wasn't available.
So please consider other options to give yourself the time you need to take care of yourself. We found that there are some home health care professionals available - some voluntary, and others for hire - but it's well worth it in the long run.
I really appreciate everyone's contribution to this wonderful website. I'm sure there are thousands more people like me who check in regularly and soak all of your wisdom and insights in.
My best wishes to all of our MM survivors and your caregivers. We're all in this together, and together we can make a difference! BTW, I'm a 10-year breast cancer survivor - but my journey has been nothing compared to yours.
Awesome article April! This is a perspective I hadn't considered. It is always hard to let others do things for me. I think I need to read that book.
You are an inspiration.
Aloha
Tom
Get new Myeloma Beacon articles by email.