Northern Lights: My Spouse As My Caregiver
At the end of last month, my husband Dilip and I went on a nine-day road trip from Calgary through the Canadian Rockies to Whistler, British Columbia, on to Vancouver Island, and back to Calgary via Vancouver. It was more than 30 hours of driving altogether, although we never drove more than seven hours in one stretch. In our lovely summer weather, this is doable, which probably explains why the traffic was heavy.
Dilip did all the driving, although I offered to help. Maybe I am fine as a ‘co-pilot’, reading the GPS and maps.
During the long drive, which we spread over several days, we had a lot of time to listen to music and talk with each other. I took our driving time as an opportunity to ask him what it has meant for him to be my caregiver for some years now, because I realize that there is also a journey for caregivers.
How do caregivers cope after the initial diagnosis of their loved one? How do they cope with helping their loved ones through the treatments and recovery from cancer, with the hope of a long survival? What do caregivers sacrifice in their own lives to help look after patients?
These were some of the questions I had for my husband.
At first, right after my diagnosis, Dilip dropped almost everything else except his work to help me because I was incapacitated by pain from the vertebral fractures that had led to my diagnosis. We used to share all household and outdoor tasks, such as mowing the lawn and shoveling snow, but he took on all of it. Doing all of the shopping, cooking, and driving certainly took a toll on him. We hired extra help so that he would not have to be doing all of the housework.
At the time of my diagnosis, Dilip was running half marathons, and he dropped out of that too. Preparing for these events was just too time consuming. He nevertheless managed to keep on running and cycling. Finally, this year, our daughters got him to run a half marathon again, along with them. Since they and their husbands compete in road races and triathlons, he was able to train along with them.
We have since tried to simplify our household so that we can still stay in our house without it being too much work for either one of us. There is a smaller display of annual flowers outdoors, for example. Indoors, I still strive to reduce clutter and be realistic about what I actually do have time for. Many bags and boxes of clothes, books, and household items have been donated to charity. I am fine with that, since recycling possessions has become the norm now.
Dilip still does a lot of the driving for both of us. There are days when I just don’t feel up to driving, especially when I am taking dexamethasone. He comes with me to a lot of my medical appointments, and it helps to have him there for discussions with the doctors and nurses.
Six years post diagnosis, Dilip still remonstrates with me about lifting heavy items, and about avoiding crowds where I could get sick. He reminds me that, if I re-injure myself, it will cause me more pain, and I won’t be able to do what I can do normally now. Mostly, I am able to live a normal life, although I bruise easily due to taking daily low-dose aspirin, and I need more rest than when I was not on medications. Sometimes I just forget about the restrictions I have now, but he is there to remind me.
We do try to look after each other, though, because both of us are taking daily medications for chronic health conditions, so it is not all a one-way street of caregiving. Luckily, his health problem is not a cancer, but high blood pressure also needs to be controlled.
We try to focus on each other’s needs and dreams to make those a reality. Both of us have had to make adjustments to our lifestyles, but we don’t want the myeloma diagnosis to take over our lives and deny us opportunities to pursue our interests in life. I don’t want my illness to be the main focus of our family, except in dire circumstances.
In addition, I realize that caregivers will most likely have more energy than patients do. I don’t think it’s fair to expect the caregivers to slow down to match one’s own pace. They need time to pursue their own activities, interests, and friendships.
Whether or not we ever get back on the same routines again as we previously had, we are just as close as before, and enjoy the time we spend together.
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The quotation for this month is from Epicurus (341 – 270 BC), a Greek philosopher, who said: “You don't develop courage by being happy in your relationships everyday. You develop it by surviving difficult times and challenging adversity.”
Nancy Shamanna is a multiple myeloma patient and a 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 by The Myeloma Beacon, please contact the Beacon team at .
Nancy any serious illness, not just a cancer, will require significant life changes for those with the illness and their care giver.
I looked after both, 90 plus year old, parents alone, one with advanced dementia/ bedbound, whilst struggling with major vertebral changes due to significant lesions prior to a very late, (failure of hospital), diagnosis of myeloma. I had to make very significant changes which I did not wish to make in order to have treatment and endured serious infection and multiple hospital admissions.
The care of my parents was compromised in the hands of others and they both passed away within days of each other. Living with that is as hard for me personally as living with myeloma.
It should not be forgotten that many of us have no care giver and actually are significant care givers for others. Care giving can become a very lonely isolating experience without supporting wider family or friends, (who many find absent themselves).
It is good that so many have dedicated partners / family / friends sharing in the care as for yourself, but unfortunately this is not the case for all. A caring society of neighbours is lacking in the modern world of nuclear families and material wealth.
I identify with the decluttering and giving to charity those things we know we do not need / use and simplifying our home to remain able to cope. I also recognise the days when one just does not feel up to doing much due to side affects of our medications, or in my case just the sheer number of medications I have to take / inject- so keep a record in case I forget.
I accept life has changed with a trajectory of travel I never envisaged at my age. It would be nice not to be alone to do everything for oneself, but that is how it is.
Greetings Nancy,
Wonderful column. We have so many parallels in our lives I thought I was reading my own history. I am a nine year MM survivor and my partner of 34 years is my caregiver. He is the smartest, kindest, most generous man I have ever known. And I have to say we are closer now than we have ever been. Whether that's due to the cancer and having to have made so many compromises I can only guess. I'll have to go back and read your previous columns and look forward to future contributions to the Beacon.
All the best,
Phil Kur
Hi Edna, Thanks for your reply, and I do realize that not all are fortunate to have close family caregivers during a time of illness and stress. Your parents were fortunate to have you helping them, even though they are gone now. Please accept my sympathies for all that you and they have gone through. My parents are also almost 90 years old, but we do have a large family and I think that helps with a social network too. Myeloma Support groups may help to fill a role in patients' lives though, and friends too. I hope that the online support at the Beacon can be of some help to others also.
Thanks Phil for your kind compliment, and it's good to know that we have those parallels in our lives too!
I tell my husband that our relationship is not a balance sheet but a bank account. Sometimes I make deposits, sometimes I make withdrawals and the same goes for him. Warren would say I don't allow him to do "enough" for me; I say I am doing as much as I can before I cannot do things. At the end of the day, there is always a hefty positive balance in the account!
Dear Nancy,
During my childhood days, Dilip used to play cricket with us. I had seen how Dilip's father Prof Shamanna was taking care of his father (Dilip's grandfather), his brothers and his wife (Dilip's mother).
Like Dad, Dilip knows how to show love and is understanding. This road trip must have brought you both very close to understand one another and broader meaning of life. I wish you both more moments of togetherness and hours of silent sharing.
Dilip was a great support to my late brother in law Shankar. You know better how happy Shankar would be with Dilip.
It is the same with Arjun.
Now for the first time I come to know Dilip as a caregiving husband.
Please take care and may every girl find a husband with the qualities you have seen in Dilip.
April, that's a neat concept of the savings bank of caregiving!
Kishore, Dilip remembers playing cricket between the two schools, Bishop Cotton and St. Joseph's, in Bangalore! Your sister Kamini is a dear friend and relative. Dilip is a true caregiver by nature and now that we have grandchildren I see that wonderful quality coming forth again! I am so fortunate to have met him back in my student days.
I am the caregiver to our 36 year old daughter. She was diagnosed at 32 & the first year was shock, grief & realizing life will never be the same. I don't even know how much I was home that first year helping take care of her through induction therapy &SCT. I live 2 hours away & her father has to work to help with financials & our hope of retirement in a couple of years. After her SCT & she was on maintenance my help was not needed as much but I still worried & wanted to be with her. She relapsed in April of 2014 & since then has had 6 hospitalizations, had radiation, tried 3 other courses of treatment & done high dose chemo 3 times. She just finished 2 doses back to back. I have not been home since July 6. She had to have a tracheotomy because there is a placytoma pressing on her trachea. Our hope is for T cell therapy at Penn in Philly. I will be there through all, no matter what happens, because this is where I want to be. I grieve for what her life has become but also what my husband & my life has become. Caregivers lives become the world of Myeloma too but it is all for the person they love.
Dear TJ13, I have read many of your posts on the Beacon and I really sympathize as to what you and your family are going thru. I hope that the next treatments work much better for your daughter though. From what I have read about CAR-T therapy, it is an immunotherapy that uses one's own immune system to fight myeloma. CAR-T stands for Chimeric Antigen Receptor T Cells. i think that there has been one clinical trial done, where some of the patients showed good results. Wishing you all the best with that!
Thank you Nancy. A trial with Car T cell infusions starts at Penn in early Oct. so the plan is to keep the myeloma numbers down until then. We are keeping our hope in that.
Nancy, thanks for your great column. This topic is dear to my heart, for sure. It reminds me of the famous Beatles lyric, " And in the end, the love you take is equal to the love you make." I bet that you and Dilip take care of one another in myriad, special ways every day. How beautiful!
Sending you lots of well wishes!
Dear Tabitha, thanks for your well wishes! Dilip and I are truly blessed to have been together for over 40 years now! How did you know we are fans of the Beatles? I listen to their music frequently, while out walking.
Hi Nancy Shamanna!
I just finish reading your article and find that you and I have similar journeys. My husband David and I just took a trip. We really enjoyed ourselves and also paced ourselves due to the chronic pain I have. I even get it after sitting too long in a car, even though I'm on pain medication.
It's funny too because we live in our own home and last summer my husband and I downsized our home by de-cluttering the house. Gave clothing, shoes, dishes, and custom jewelry away, vacuum cleaners ... as much as I thought we should. Boxes upon boxes keep piling up, taking to the donation station also. I also didn't feel bad because, in a way, I was helping my husband and helping the needy and recycling too.
Thank you so much for listening to me.
Frances Smith
Hi Frances, Thanks for posting and it is interesting to hear about your summer too! De-cluttering is such an ongoing activity, but I found that I had neglected some of that over the past few years, so when we do sort stuff out sometimes there is a lot to donate or throw away. It makes life a lot simpler to be more organized anyways!
Sorry to hear about your pain...hope you don't sit too long at a time and are able to get up and move around too. We didn't travel for really long hours since we worry about DVT's. The myeloma dx, even when controlled by meds, gives us more to worry about I guess.
I loved the article, Nancy. I'm fortunate to personally know you and Dilip and had a big smile while reading it. I, too, am very fortunate to have a caring husband with a good sense of humour. Aging brings concerns for everyone and we're also trying to make our home as simple as possible. I certainly remember our wedding vows 42 years ago--"for better or for worse"/ "in sickness and in health." Love is for each of us to honour those vows as much as possible.
Thanks Sue for the lovely comment. I feel fortunate to know you also, and to have worked on projects together thru our myeloma support group!
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