My mom peacefully passed away on July 6th after waging a heroic eighteen-month battle with lung cancer. I want to thank everyone who has sent messages of support and shared their personal stories of caring for an adult they loved. It has meant so much to me and I thank you from the bottom of my heart.
Over the past six weeks as my sisters and I provided 24/7 care until her death, then arranged my mother’s funeral, I had no capacity for blogging. But now, two-weeks into my “re-entry,” I would like to share some personal observations about eldercare. My experience has radically changed how I will professionally approach this major work+life transition going forward.
Throughout my mother’s illness, I blogged both here and Success Magazine about the challenge of caring for her while working full-time and raising two small children.
But I had to save my true confessions about eldercare until after her death, because reading them would have been too painful for her. Because the truth is that eldercare is one of the most difficult things I have ever done. While I would do it again in a heart beat, it’s a responsibility that exacts a tremendous toll—physically and emotionally—straining even the most well-thought-out work+life fit.
The best way to describe what I mean is to compare eldercare to working after having my children, who are now nine and six. (Note that for the purpose of this comparison, I’m assuming that the children do not have special needs. To learn more about those unique challenges, see guest blogger, Linda Roundtree’s, excellent posting).
Like eldercare, becoming a parent is a huge transition. In both circumstances you are often sleep deprived and have absolutely no time for yourself. But, in general, caring for your child is:
• Happy and rewarding;
• Based on a relatively predictable curve of development with care readily available, albeit for a price; and
• Controlled by you. You say how, when, and where the child will be cared for and the child must comply, willingly or unwillingly.
In contrast eldercare is sad, unpredictable, and rarely, if ever, fully controlled by you. Let’s briefly look at each aspect of this comparison.
Sad
Even at its most difficult, caring for a child always involves the possibilities of the future. Caring for an aging or sick adult is about loss. Loss of the vibrant person. Loss of their pain-free existence and control over even the most mundane activities of life. And, ultimately, death. Because the work+life fit equation is based on time and energy, the pervasive sadness of eldercare is an energy drain that doesn’t exist with child care.
Unpredictable
Yes, my children will unexpectedly wake up sick and not be able to go school, we’ll have a snow day, or my nanny will be running late. But for the most part, things are pretty predictable. Not so with eldercare.
While every child is unique, there is a general developmental curve they will follow. With eldercare, there is no such curve. Every adult’s medical, family, financial, emotional, and community circumstance is completely unique. And there is a shocking lack of affordable care. For the most part, unless you are very poor, very wealthy, or have excellent long-term health care, you are on your own. In fact, I don’t think most people, or employers, have any idea just how on your own you will be when dealing with eldercare.
In our case, my mom was single so my sisters and I were her primary caregivers. Thankfully, she had a wonderful community of friends and enough resources to support the care she required. But even so, we had to provide a tremendous amount of care, because there are many things you still have to and want to do yourself. And, both my sisters and I had a great deal of job flexibility. We couldn’t have done it if we didn’t.
Even with the flexibility that comes from working for myself, trying to plan my work around my mom’s care was almost impossible. I just had to take my best guess, and my best guess wasn’t always accurate. I probably should have said “no” more than I did, but I just wasn’t sure what my capacity would be. (Success Blog posting).
As I recently explained to a friend, it was like holding my breath for the last 18 months, always waiting for the other shoe to drop, which it always did at the busiest time for work. Toward the end, when the level of unpredictability accelerated, I began to understand why people would be forced to give up working. The ability to plan anything beyond just making sure your loved one has what they need is almost impossible.
Not Being Fully in Control
Now perhaps I was naïve, but I failed to consider the fact that my mother would have very strong ideas about how, when, and where she would be cared for. Very often those ideas didn’t coordinate with what my sisters and I thought would be best for her and, perhaps, most convenient for us and our work+life fit realities.
It was just one more unique element of eldercare that often added more time, more worry, and more stress to the equation than anything I’d experienced with child care.
As much as I consider my children’s wishes and well-being, their father and I have the last word. When your parent is mentally lucid which my mom was until three days before she died, your ability to dictate the details of care are very limited. In fact, we came up with a mantra, “hey, it’s her journey,” just to help us not worry as much when we disagreed with her choices, which was often. But they were her choices.
Good news
During my blogging break, Newsweek ran a cover story on eldercare and USA Today ran an excellent week-long series on parenting your parent in which I was quoted. Hopefully this increased attention will translate into a broader understanding of the need to broaden the scope of the work+life dialogue, and an understanding of the critical need for workplace flexibility.
I am looking forward to using my 18 months in the trenches learning first-hand about the unique challenges of eldercare. As a school psychologist who dedicated her life to helping others, my mom would have wanted that. And now, as she would say, “I’d love to hear what your experience has been.” Let me know. And it’s great to be back! (Note: Remember my strong spam filter. Comment and I will approve it. Thanks!)
I’m so sorry to read of your mother’s death.
My father passed away exactly one year ago yesterday from prostate cancer which had metastasized to his lungs. I was his primary caregiver for the last six months of his life while I continued to hold down a full-time, challenging job. I know exactly the feelings of exhaustion, conflicting emotions and priorities, and grief that you describe.
Looking back, I don’t know how I did it, and I couldn’t have without my sister who made a 180 mile round trip to help at least once a week, a manager who was willing to work with my unpredictable schedule and a wonderful caregiver that we were able hire to help me during the day.
I completely agree with you that eldercare is one of the most difficult things I’ve ever done. Navigating the maze of doctor appointments, hospitalizations, medication, Medicare and insurance, home health care, etc is overwhelming even without the added complication of a career. Doing both is almost impossible.
Thanks for bringing attention to this issue which is only going to loom larger as the Boomers age. Interestingly, despite the attention given to women “opting out” to have children, I actually know more women who have “opted out” for elder care. Yet, that’s actually a misnomer, as in the eldercare situation there is less of an “option” and more of a “have no choice.”
Hello Cali,
My thoughts are with you. As a hospice volunteer I can’t begin to tell you how great the need is for corporations and big business in general to wake up to elder care concerns. I literally run into it every week.
The wisdom of the baby boomers may be more readily retained if elder care concerns are addressed.
It’s fair to say that every week I encounter a baby boomer who is not sure how they will manage taking care of their parent, and keep working without burning out.
All the best to you. I support your project to shed light on this.
Judy
Cali – i am so sorry to hear of your mom’s death. i totally agree that this experience changes your outlook on almost everything. I had experienced my father’s death in 2000 and that significantly factored into my career decision to leave my corporate job and create my own business on my own terms so that i could be there for my mother and my daughter. my mom passed away last summer and i have no regrets about the career decision since i was able to spend so much time with her before she died. Thanks for sharing your journey and cherish all your memories. Patsy (Donna’s friend)
Thank you for this insightful post. I am sorry to hear of your mother’s passing. My father passed away two-and-a-half years ago, and I can still remember many of the details of caring for him. Like you, it was the hardest thing I’ve ever done, the most fulfilling, and I wouldn’t have missed a second of it for the world. I actually was fortunate enough to be able to quit my job and help care for him full-time, but this involved other issues of family dynamics, i.e. my husband and I moving in with my parents to help take care of him. I can understand and sympathize with your feeling of helplessness as other people make decisions about your loved one’s care that you have no control over. I do hope your story touches many more people and that the health care system and people in decision-making authority start to fully understand what is involved in eldercare. Thanks for sharing.
I am so sorry to hear of your mother’s passing. She was blessed to have you and your sisters there for her. I cannot imagine “the journey” to the end of life without the type of love and support you and your sisters provided. As you and others have expressed, supporting and bearing witness to a loved one’s passing is the hardest job I would also say “yes” to in a heartbeat. Please take your time and be extra supportive of your own needs during your re-entry. Even reading the lines about the emotional and physical drain of eldercare in your posting left me with a visceral memory of how tiring the experience is. Work can be a comfort, but re-entry and recuperation is not always a perfectly linear process. Just as every person going through the journey of dying is different, so is the journey of the caregiver. As an only child I have had the opportunity to say “yes” to both my mother, and my grandmother’s baby brother, who did not have children or any other surviving siblings. I was personally stunned–both times–to discover that the right worklife fit during my own re-entry was nearly as hard for me as leveraging my already flexible work life was during my stints as a caregiver. So, even as I say, slow down and be good to yourself, I also say to keep up the good work. We need articulate, savvy champions like you in the game, advocating for change.
Cali, my heart goes out to you and your family. I am so sorry about your mother’s passing. I know when we last dialogued in late June your mom was not well but still with you.
As you know, my own mother passed in late February from a 10+ year battle with Alzheimers. It was the most painful period. To watch a vibrant woman lose her life but still exist was like an outer body experience. I concur with your thoughts of eldercare. It is not until you go through it yourself that you understand the great need for quality elder care. I was fortunate to learn of http://www.myelderadvocate.com (Jack Halpern) after my mother’s passing. Jack is doing a great deal to try to improve things. Those interested in learning more should contact him.
Cali, it takes longer than you think to adjust to the change in life you and your family are experiencing. Do not over do, and do be prepared for emotional ups and downs even when you think you are better. With nearly 6 months of healing, it is only now that I can go through a day and think of my mom with happiness and not be overwhelmed with negative emotion.
Be sure to lean on others; people are very understanding.
Cali –
My heart goes out to you. You were so supportive to me Spring 2006 during my spouse’s major surgery recovery, while I tried to craft my own work+life fit, I wish I could return the favor. Just know that you are are true inspiration to multitudes of working people; there are scores of us who care about you. Thank you and take care as you transition through this period of sadness.
Dear Cali,
Our thoughts are with your family.
I have said it again and again…. 20 years on Wall Street, adopting two children overseas…. eldercare for two parents at the same time was by far the hardest most stressful thing I have ever done. And also like you, I don’t regret a single moment and would do it all again.
For me, the single worst moment of my life was stealing my dad’s car keys so he could not drive. I could not live with myself if he ever had gotten into a car accident and injured someone else. To do it again, I would have had a doctor, a local policeman or and Eldercare manager be the “mailman” delivering this news.
The second worse moment of my life was tricking my mother into going nursing home because it was too dangerous for her to live home with an aid. My mother had Alzheimer’s. A toddler you can put in a crib, a person with Alzheimer’s can burn a house down, eat broken glass, or wander out of the house and walk miles from home, just to name a few. Having said that it was hard, it was absoletely one of the best decisions we made. The nursing home was immaculately clean, the nurses were angels who were very, very kind, and my mom was completely safe.
My thoughts for anyone going through eldercare. Please try to take care of yourself. You can’t help anyone if you are on the verge of physical exhaustion. It is O.K. to get help and take a break.
Bonnie
P.S. Don’t forget to have your mom or dad retell you their favorite recipes. Oh we wish he had my dad’s clams casino recipe!
Cali,
I’m new to your blog, and very sorry to hear of your loss, so recent yet. I hope you are getting and giving yourself the support and care you now need in the aftermath and in handling the final loving caregiving after your mother’s departure.
Difficult and sad as it has been, I hope you are able to find solace as the distance grows between her passing and your life which keeps moving on in the memories and knowledge that you were able to share this important period of time with your mother, a once in a lifetime event that gives you new perspective. Death and dying is heartbreaking and humbling, but also reminds us to treasure time, life and those we love.
All of your insights are on point — thank you for sharing the challenges of making decisions or living with decisions with and for parents who need your help but need to be adults too, the challenge of balancing your life while giving care that you want to give, the deep sadness associated with everything you do as you give care, the gradual loss of the person you love so much, the chaotic unpredictability of “what next” and the lack of understanding in the work place (3 days bereavement time – how can that possibly be enough to take care of details, much less grieve?!) and the general world around us that doesn’t want to see, doesn’t want to hear, doesn’t want to think about death.
Most of all, thank you for your message reflecting the lack of support for the direct caregivers – including financial, especially if you’re not very rich or very poor – and the lack of support for the family in general (certainly your personal homelife was affected as well).
My father passed away June 6 a year ago. Being the child that lives long distance from the family, I watched and travelled and worried, for 20 years as my father slowly declined from early onset Parkinsons. First there was disability retirement, loss of productivity, loss of independence, then falls and a broken hip, brain surgery, loss of dignitiy and privacy, walkers, wheelchairs, feeding tubes, suction machines, Depends, hospital beds and velcro shoes, loss of mobility and speech, bouts of pneumonia, nursing home care and dementia, all the while lots of home health care aids and housekeepers assisting my mother who though peculiarly unsuited to the job took command and demanded their independence.
Six years before he passed I dropped my life and moved back home, only to find a mother that didn’t want to lose her finally empty nest as much as she wheedled for my help from a long distance, strife between family members about how to proceed and what needed to be done (and when), barriers to providing personal care to a parent of the opposite gender with dignity, lack of knowledge about negotiating the healthcare industry (and an industry it is) or the pressures that form decisions by and opinions of medical professionals that affect your life so personally, and financial worries for both daddy’s care and mother’s future.
Most of all I am shocked that others do not understand grieving. That “loss of a parent” is not understood (I overheard someone at the office ask someone else who had her losses much earlier – “Is it REALLY that hard to lose a parent?” “Um, yes!” ) I still find myself surprised by bouts of grief at unexpected moments though days go by when I don’t think about it.
Thank you for your blog, thank you for talking about what so few will talk about or think about. Thank you for doing something positive with your experience.
Great website!! Keep up the good work!!