As a social worker providing therapy for older adults, I have been acutely aware of the toll that caregiving takes on the caregiver. The following testimony is from “Miriam”, a caregiver with whom I have worked and learned from, for over a decade.
Since 2001 I have been working at a job for which I did not apply and was not uniquely qualified to perform. I was not told of the limitless hours or given a description of benefits. After acknowledging that the job was mine, I realized that I didn’t know the job description or the life-altering changes I would experience on the job since I was a novice. As a caregiver, the job I didn’t want took me on a journey of self-awareness, tested my abilities to be an advocate for my husband and to navigate the myriad of obstacles to maintaining his stability.
The most important part of my “job” was to keep my husband alive and comfortable for as long as possible while simultaneously not losing myself in the process.
Miriam was a caregiver from ages 70 to 80, which were supposed to be her “golden years”. Instead, they were filled with the roller coaster of emotions and challenges that is an integral part of caregiving.
Caregiver stress is the single most underreported source of stress for people ranging from 50 to 85. It is true that for some, caregiving can also be a source of blessing and privilege, particularly when dealing with an aging parent. It is often then, that we realize that the time with our loved one is precious and fleeting. But the process can take a heavy toll.
Over the many years of my practice in the United States, I became a passionate advocate for my clients who were caregivers. I tried to give them the necessary skills to cope with the stressors of caring for a loved one. I discovered that in many cases, the physical and emotional health of my clients were adversely affected by caregiver stress.
I often worked with members of “Sandwich Generation.” This term describes a caregiver that is “sandwiched” between multiple generations who lean on them for support. There are multiple types of sandwiches:
- Traditional – those sandwiched between aging parents who need their care and their own children
- Club Sandwich – those in their 50s and 60s sandwiched between aging parents, adult children and grandchildren
- Open Faced – anyone else involved in elder care
In the US, according to Pew Research, for the first time in 130 years, millennials are more likely to be living in their parent’s home. In 2014, nearly 61 million Americans were living in multigenerational households which include two or more adult generations, grandparents, or grandchildren. Between 7 to 10 million adults in the US are managing their parents’ care long distance. Predictions made by the US census bureau suggest that by 2030, the number of older Americans over 65 will double to over 70 million.
Here are some caregiver confessions which I have heard over the years in my profession and in conversations I had with my peers:
- “I feel like my life is not my own an I am so tired of all the responsibilities.”
- “I don’t know if I can continue with all the demands on me, I can’t seem to keep all the balls up in the air.”
- “My mother has no idea how much of my life I have given up to take care of her, she thinks her care is routine and it is particularly hard because she was not there for me when I was growing up.”
- “My children, husband and parents all want a piece of me, I’m afraid there isn’t anything that’s left for me!”
- “I can’t even take a bath without someone needing me!”
- “Dad had been going downhill for two years and he is suffering so much, I wish he would give up already and I could get back to normal.”
- “I want to scream, run away or go hide somewhere. The witness protection program sounds good to me now.”
- “I feel like I can’t please anyone these days. No one is happy and neither am I.”
All these facts, figures, and anecdotes of my clients or peers were very interesting to me. I was inspired by their self-sacrifice, and aware of the heavy load that they carried.
And then it got personal. I began experiencing caregiving stress in my own life, and it deepened my understanding of this challenge.
Over the span of four to five years my mother was diagnosed with cancer and heart disease and my 25-year-old daughter, Shira, was diagnosed with a chronic illness that was misdiagnosed. She was struggling to care for herself and her family while several other close family members developed significant health problems.
I found myself providing care on all sides of my family. Throughout this time I continued to provide therapy for my patients, many of whom were caregivers themselves or were coping with their own chronic illnesses. One of my children asked me, “Ima, how are you dealing with all this ongoing stress and still managing to help your patients?” Another one remarked, “Ima, perhaps your bucket is overflowing? You need to focus on your own needs as well.”
I, myself, started to recognize that I was ignoring the tell-tale signs and symptoms of caregiver burnout:
- My immunity was compromised and I started catching colds and other infections.
- I noticed that I was very tired and had less energy than before, while I continued to respond to the caregiving responsibilities that I had taken on willingly.
- I began feeling overwhelmed and didn’t know where to prioritize my focus and intent.
- I was unable to relax and felt my mind was always racing. I was always thinking about the responsibilities I had and what I needed to attend to next.
- I sometimes got irritable and impatient with my loved ones.
- I experienced feelings of helplessness. Feeling overwhelmed was my “new normal.”
I thought about the overflowing bucket and realized that the time had come for self-care:
- I sought out the counsel of an expert to help me cope more effectively.
- I educated myself about the various conditions that my family members were facing.
- I learned that therapists can set healthy limits, too, and sometimes I had to say “no.”
- I learned to recognize that I needed a respite at times, and looked for the company of close friends or colleagues to spend some time away from my stress and responsibilities.
- I began incorporating more exercise into my daily routine. (I began every day with a brisk walk before work or any caregiving responsibilities.)
- I became aware of the need for focusing on proper nutrition in order to feel well and maintain health.
- I began writing a journal of my thoughts and feelings in order to help me cope more effectively with the stress.
When I look back now on those stressful years I am able to recognize that I was able to “step up to the plate” and take care of my loved ones to the best of my ability. I remember multiple doctors visits, hospitalizations, emergency surgeries, babysitting, cooking, organizing medications, advocating. But I also remember hugging, crying, worrying, smiling, sharing memories, reassuring and loving.
I feel that being a caregiver, especially if you care for multiple generations, is not easy. It was a role that I feel grateful to Hashem that I was able to handle. If I was able to make a difference in the lives of my loved ones then it was all worth it.
I also learned that even the “experts” need to take a time-out for self-care and reflection. It was amazing to learn how I could stretch all my internal and physical resources to carry multiple caregiving responsibilities. I discovered that even though I can stretch, I have limits that I need to be attuned to for my own health. I was forced to begin to incorporate prioritizing my own emotional and physical health, which I took for granted before the stress of caregiving became a daily focus. I carry these lessons with me now, utilizing them personally and in support of my clients.
This morning I arrived in Newark from Israel to visit my family. Before takeoff, the flight attendant gave the classic announcement, “In the event of a change in cabin pressure, the oxygen mask will appear. If you have a dependent traveling with you, put the mask on yourself first, so that you will be able to assist them.” Now, I finally understand the true meaning of those instructions.