Pat’s Cracked Cup: Managing Multiple Myeloma While Living Alone
More and more reports have been in the news about the rising number of people living alone in America and other Western countries.
According to Eric Klinenberg’s research in his book, “Going Solo,” 28 percent of all American households and one in ten people over age 65 live alone, more than ever before in history.
While the circumstances leading to this lifestyle vary, the impact is significant for those diagnosed with multiple myeloma, as well as their circle of family and friends.
Adults transition in and out of living alone and with others. The discussion of how this trend has grown in our society is a long and interesting one.
Although the Internet offers new ways for a social life of community, online connections cannot drive you to an appointment, prepare you a meal, or assist with other endless needs that arise when health fails.
I was living alone without children or a partner in a city several states away from family when I was diagnosed with multiple myeloma. Some of my most difficult times were before I was diagnosed and trying to carry on with severe back disability. It would often take me hours to simply sit or stand upright.
That time proved to be a true test of my network of support.
Family and friends do rise to the occasion as much as possible. I found much-needed help throughout treatment, and I remain grateful for the phone calls, mail, financial gifts, visits, meals, cleaning, errands, and other kindnesses from so many.
Four months after my diagnosis, I was asked to attend a stem cell transplant orientation for patients and caregivers. I brought a friend along with me, but she lived an hour away and was clearly not signing on to be my “caregiver.” I patched together enough assistance to get through the stem cell transplant process without a designated caregiver. All involved were relieved to finally be able to step back a bit afterward.
Helping someone through a crisis is one thing – offering support through an ongoing illness requires something extra.
I naturally tune into stories of how others manage during their time of treatment. I know of a couple cases where women scheduled treatment in a city where a child, sibling, niece, or nephew resides. With the rising cost of fuel and airfare, back-and-forth travel can become prohibitive.
Volunteer groups can offer amazing support through meal delivery, errands, and transportation to doctor’s visits, but someone has to handle the application for such services.
People outside an individual’s circle of close contacts are also often willing and able to help – if asked. The key ingredient is simply having one person act as advocate to manage the entire situation.
One scenario I heard about involved an active, accomplished woman who lived alone on the West Coast. When diagnosed with a form of cancer, her wide network of friends and associates stepped up to help – for awhile. When it was clear that she would not be able to resume her old level of activity, a niece generously quit her job in another city to move in with her. Eventually, the responsibility became too much. The woman’s sister relocated her to the East Coast in order to look after her in her own home.
In some cases, people who live alone are offered services, such as visiting nurses and inpatient care, more readily when a caregiver is not in the picture. Patients with partners and children are often assumed to have their caregiver needs met, but this can place unreasonable demands on those who are not so well suited to the tasks.
I am wondering about the experiences of other Beacon readers. How have those who live alone managed through the different stages of living with multiple myeloma? How does the need for help from others impact recovery?
Pat Pendleton is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Pat, I have had similar gracious friends stepping up for the past 4 years. Some have cooked, many have offered services, and yet others have driven me to appts. Until now, I've been able to still work fulltime.
I live away from my brother out West and now that I've relapsed, and have many complications, I'm moving to be closer to him. I cannot bear the thought of leaving him with all my things to take care of (esp. my cats), and being 1800 miles away. I am now no longer able to work, and will be applying for disability. I'll be close, but will need to find new friends, etc. to help when needed. Honestly,though you feel vulnerable, I look forward to the challenge and find many great people everywhere.
Not having a partner or children, I hope to find comfort in all the things I love to do in the mountains, and finding solace a great time to thank people with cards, etc to let them know I'm thinking and thanking of them.
Pat. Thank you so much for this article. It is a subject that I have not seen discussed as openly.
I would like to comment on a companion subject. A person gets diagnosed with MM. The obvious designated caregiver does not want the role. The MM patient has no options. They have the disease. The "obvious" caregiver has an option. It broke my heart to see a fellow patient alone in the clinic and learned that the spouse said, "It's not for me". And simply took off.
However, the worst possible situation is when the "obvious" caregiver accepts the role but lets the patient and everyone else know that it is a real burden. If nothing else it dramatically reduces quality of life, changes approaches to treatment,etc.
If you have a warm, loving caregiver give them a hug. It is a treasure worth more than silver and gold.
Gary and I have disagreed recently in the comment thread for another article, but I completely agree with his feedback on this column of yours. It's wonderful that you are raising the subject that you've addressed. It isn't one that gets mentioned or discussed nearly enough.
I consider myself fortunate that I don't have any direct experience that allows me to answer the questions that you raise at the end of your column. I wonder, though, if your column should be seen as a wake up call for myeloma patients with caregivers to recognize that not every myeloma patient is so fortunate, and to realize that even small offers of help or gestures of goodwill can make a huge difference in the lives of fellow patients.
HI Pat, thanks for the excellent article about people living with MM on their own. Even with everyday tasks like lifting baskets of laundry one has to be careful not to lift too much weight, and so it is necessary to think carefully about how to approach tasks like that. When you mentioned that you were on your own with severe back disability, I was amazed at how you got through all of that! I remember hobbling around the house with a cell phone on me in case I needed to call for any help at times when I was alone in the house (in the daytime usually). The pain was terrible and I was taking pain meds which also clouded my awareness. Good that you have spoken out about this problem! In some cases one might be eligible for 'home care' from governmental agencies, although I don't have personal experience of that.
I so enjoyed Pat's article on living alone with MM. I just started treatment in Feb 2012 and am so fortunate to have a caring spouse that has been supportive every step of the way. Pat's article brought to attention the challenges faced by MM patients living alone or not having a true care giver. We certainly need to be supportive to all agencies and organizations that provide support. All don't have the luxury of a caring spouse or care giver.
Thanks for writing this piece, Pat. My spouse divorced me not long after diagnoses. She tried, I'll giver her that. But she wasn't up to the task. Anyway, this article is highly relevant to my life and high on my list of worries.
Pat,
Your bring up some very good considerations. This is a topic that has been on my mind off-and-on since I was diagnosed. I don't think it is necessarily restricted to people living on their own, though it's probably more difficult for people on their own. My wife and I have been caregivers to each other whenever needed for over thirty years, and I have no doubt this will continue through my battle with MM. However, I do worry what toll it may take. Will she have to quit her job at some point? Where would we stay, and how would we manage the time off required for a SCT? What about a back-up to my wife since there will be times she needs a break? These are issues I would think we all face, and it is great that you brought this topic up for us.
Pat, Thank you so very much for writing this article. Much more has to be written, said and talked about on this subject. I have been on my own before diagnosis and ever since diagnosis. It has been extremely hard, probably the hardest thing I have ever done and continue to do. On top of being alone, I do not own a car. Talk about difficult! For the first year a good friend drove me to all of my appointments and sat in with my oncologist, but she was not a caregiver...no nurturing etc. I had to take care of myself, cooking, laundry, shopping etc. Now I take the bus, I am better, but it's very difficult physically to take the bus. I get exhausted by the end of the day if I have to travel to an appointment or multiple appointments. All of my friends live "in town" "across the water". There is ferry travel involved and not a one of them has made it to my house! I was quite sick when I was diagnosed, so I am on SS disability and funds are very, very tight, and barely if at all make it through the month. Overall, it has been a highly depressing venture! I work hard at keeping my spirits up, meditation, counselor, support group etc. but it is still highly difficult, both physically and mentally. Having a car would make my life so much easier, but that to, is not possible on my income. I just literally take things one day at a time, deal with what arises, make decisions on what I'm going to do in a day by what's going on and how I feel when I get up in the morning. I zen out with my trees and all the natural world around me. I live rather rural, and that helps me deal or should I say not deal...meditate...with the real world. Well this comment is getting long, so I will close with ,"I'm ALIVE and I breathe, and I am and I do". I always like your columns and have carried around one particular column in my folder, always, "Moving In the World", May 24, 2011. To all of us who live alone, keep pushing, keep trying, keep doing, keep making, keep smiling, keep breathing!
Jan
I have MM and live alone. I had breast cancer 15 years ago. Then my teenaged kids and my sister grouped together to be my care givers. They knew it would be a couple of year situation.
This time it has been solo and very difficult. With my MM the outlook is quite different. My family is grown and I am living alone. Unfortunately they either live at a distance, or have health issues of their own and are unable to help out this time around. My doctor has assigned a medical social worker to coordinate my care for when I get worse. Even at this point the fatigue and pain makes it difficult - I also have non-smoker emphysema and tremors (oxygen & cane).
Those of you who have help should never forget how difficult it would be without them!!! They are truly a godsend...
Pat, great column, and so important to talk about this subject and the primary difference between MM and other cancers. For most other cancers, treatment is a "crisis" in which everyone involved knows that there is likely to be an awful 8 to 12 month period (if all goes well). A time frame allows spouses, children, friends, coworkers to see a "beginning" and most importantly, "an end" to your need, whether it is realistic or not. It allows them to jump in, organize, and help without too much internal conflict. With MM that is simply NOT the scenario. People can live for many years with this disease, but very disabled by the disease AND its treatments. It is very difficult without help during many junctures. And there is no end in sight to NEEDING that help.
After living with MM for 16 years, alone and then with an amazing guy who MARRIED me knowing my reality. Yes, I am very very lucky. But he is self-employed, works 12 hours a day, with a 45 commute minute commute. So, the alone part continues a lot! MY ADVICE: Have your doctor prescribe and find you an oncological social worker. I found after YEARS, that there was one right in my cancer center. No one had every told me about her!! She has become a MAJOR lifeline for me. She handles finding every sort of resource you can imagine: financial, transportation, legal, informational, and would do all the work of connecting me if I needed it. In addition, she is essentially my therapist as well. When I recently found that I had relapsed big time while on the worse darn cocktail I've ever taken, and had no choices left but clinical trials, I just lay in the infusion center and sobbed. (Not my usual m.o. at all) The infusion nurse must have slipped away and called my social worker, who just appeared in the doorway, box of Kleenex in hand, and sat with me while I worked my may through anger, fear, sorrow. By the end of my infusion we were laughing about the "tears in my ears" - a phenomenon unique to sobbing while lying flat on your back. <:
I wish you many many good days to come, and hope that you find the help you need, in whatever form it comes, Pat.
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