Jed A. Levine
Executive Vice President, Director of
Programs & Services
The face of caregiving is sitting next to you on the subway, waiting on your table at the diner, making your latte at Starbucks and cleaning your office at 10 pm. The face of caregiving works in a City Council member’s office, cleans your teeth at the dentist, preaches the gospel on Sunday in churches, and welcomes the Sabbath every Friday night. It is your son’s teacher and your mother’s best friend. Caregiving is all around us. In the almost 30 years that I have worked at CaringKind, I have had the privilege of meeting some of the strongest, hardest working and selfless individuals who provide dementia care for friends and relatives.
Caregiving is often hailed as selflessness, but selflessness is not a trait that can be sustained. Caregivers must care for themselves to care for others. This is not selfish or self-serving; it is essential to do the heavy lifting over the long haul.
You might have noticed that I don’t use the term “loved one” when referring to the care recipient. At CaringKind, we call the person we care for a “friend or family member with dementia.” As someone who has worked in this field for over 40 years, with over ten years of psychoanalytic training, I feel strongly about the use of language and its impact on the individuals we serve.
At CaringKind, we make a conscious and deliberate effort to avoid the use of “loved one” when referring to the care recipient for several reasons:
Not everyone is loved, either now or in the past.
Even if you love someone, you don’t have that feeling 24-hours a day (ask your married friends).
Some caregivers are caring for ex-spouses, parents, friends or relatives who were abusive or unloving themselves. The term “loved one” creates or exacerbates feelings of guilt when a relationship was not or is no longer loving.
We encourage caregivers to acknowledge and accept all of their feelings — the positive and the negative ones, such as frustration, anger, sadness and love.
We’ve learned from our clients that there are many reasons to care for someone, regardless of how loving a relationship is or was. Caregivers can be motivated by a sense of obligation, duty, morals and an understanding and appreciation of what they expect from themselves. We owe it to the families we serve to change the standard language we use to be as inclusive as possible in all our materials and resources.
Recently, I became a caregiver for my partner who had major surgery and a long and complicated recovery. As much as I love him, there were moments when I didn’t feel particularly loving. I felt burdened, angry, resentful and scared. I became his advocate, nurse, nurse’s assistant, physical therapist, pharmacy tech, nutritionist and insurance expert. Thankfully, he is recovering, and we are not facing years of progressive decline. However, this experience gave me a taste of what it is like to be a primary caregiver; holding down a full-time job, managing the household and keeping care on track. There is no time to think of anything else when visiting the hospital daily. Providing the history to new doctors or nurses, then, following discharge (with 17 pages of instructions), managing a home care team, scheduling appointments with the labs, the nurses, the nurse practitioners, the physical and occupational therapists, and arranging transportation to get there.
Following my partner’s second hospitalization, I arranged rehab at a short-term care facility. After that, each day included trips to check in with nurses, doctors and therapists, checking to make sure laundry was done and the insulin pump was managed. I was grateful to find a superb facility with excellent care, but it still took a lot of vigilance on my part.
What I learned:
It is critical to find time for yourself every day. Get exercise. Manage your diet. Pay attention to your body and sleep when you are tired.
Ask for help and be specific. Family and friends want to help, but need to know what to do. If I needed someone to stay for a few hours so I could get my haircut or attend a meeting, I’d put it out on Facebook or text a group of family and friends and someone would come to help.
Cut yourself some slack. Some chores must be put on the back burner.
Be kind to yourself. If you can afford it, take a taxi from the nursing home on a rainy night. Take a day off from work just to rest if you can manage it.
Find someone to talk to. You will feel better, lighter, readier to face the next challenge after speaking with colleagues, friends or a therapist.
When possible, see friends and family for purely social occasions; dinners, a movie, a glass of wine. Enjoy a few minutes with people who care about you.
CaringKind can help too. We understand. Many of us have lived it. Now, I have as well. Call us at 646-744-2900, 24-hours a day, or email us at firstname.lastname@example.org. You’ll be glad you did.