How to Survive as a Caregiver: Six Essential Tips
Have you ever found yourself thrust into a job that you would never have applied for, and for which you didn’t have the background or training? For which you felt you were unsuited in so many ways? And for which you are not allowed to quit or retire? That scenario might be the stuff of most people’s nightmares, but for millions of Americans, it is the reality of life as a caregiver.
The role of caregiver crept up on me very gradually. My fit and healthy husband, Mike, sixty-two years old, was exhausted and short of breath on returning home from a trip to Maui in 2012. He was still working at the time, and I was a happy retiree, active as a volunteer in my community, free to travel to see my children and grandchildren whenever I wanted.
As his symptoms worsened, I took Mike to several local specialists, and finally to the Mayo Clinic in Rochester, Minnesota, confident that a diagnosis and eventual cure were in our future. As the months wore on, he began to lose his eyesight to Retinal Vasculitis, then his bowel and bladder control. After a year-and-a-half of traveling back and forth to the Mayo Clinic, during which he was subjected to every kind of test, from PET scans to lung biopsies to spinal taps, we were told that he had a progressive, degenerative autoimmune disease that had no name. He was put on a high dose of steroids in an attempt to arrest his vision loss, and he was released.
That cold day in February 2014, as I drove the four hours home from the Mayo Clinic through the snow, was the beginning of my career as a full-time caregiver. It was the most difficult thing I’ve ever done, but as the months turned into years, I found some basic strategies that allowed me to keep going from day to day.
Learn how to redirect your thoughts. A caregiver’s biggest enemy lurks inside her own head. Negative thoughts and overwhelming emotions can flare up many times a day, undermining your heartfelt intentions to be your best self for your loved one. Anxiety, sadness, doubt, anger, exhaustion and feelings of hopelessness can spiral out of control if you are not vigilant. The poet Gerard Manley Hopkins said it best: “Oh the mind, mind has mountains. Cliffs of fall, frightful, sheer, no-man-fathomed.”
I lost almost twenty pounds and woke up every morning feeling nauseous until I decided I had to try whatever it took to keep myself on an even keel. I started meditating every morning, just for a few minutes. I took comfort in reading a selection every night from John O’Donohue’s book, To Bless the Space Between Us: a Book of Blessings, that helped me to focus on what was good in my life. Whenever negative thoughts intruded, I thought about my grand-daughters, my happy summers at the lake in Minnesota when I was growing up. It is essential for your mental health that you find whatever positive antidotes work for you, and that you employ them as often as it takes for you to feel some measure of calm as you go about the challenges of each day.
Rely on friends and family. They can carry you through the worst of times on your caregiving journey. During a loved one’s long illness, it can be embarrassing to feel as if you are always on the receiving end, unable to repay others for their many kindnesses. But you need them, most importantly to give you the sense that you are not entirely alone in dealing with your situation. Friends who are not involved with your daily struggle can come up with wonderful insights, siblings can listen to you cry and make you laugh, neighbors can bring food or come to sit with your patient when you most need the relief.
Practice saying “yes,” whenever someone offers to help, and just be grateful without feeling guilty. With your hard-earned compassion for others in your situation, you will reciprocate when you can.
Do your homework. Fear and uncertainty are the caregiver’s constant companions. The feeling that you have no control over your situation, that you don’t know what is going to happen next, can fan the embers of your anxiety into an out-of-control wildfire. Many of us have dealt with the fear of not being able to continue to care for a loved one in the home or with worry about finances.
Having a plan for the future, even if it has to be scrapped or revised at a later date, can do wonders to calm your anxiety. Tour local skilled care facilities and bring along a friend to take notes, so that you know which one you want when the time comes, and what it will cost. Research condos and apartments to see what is available in your area in case you need to move to a more accessible living arrangement. Contact a realtor and ask how much your home might sell for. Delve into your finances and learn exactly what your assets are and how to access them. Find out how Medicaid works and what the financial implications are for both the patient and the spouse.
Study all the options for resolving whatever issue is causing you the most anxiety, and try to come up with a plan for how you will deal with it when the time comes.
Force yourself to take time off. It is well-known that many caregivers die before their loved ones. The relentless, all-consuming nature of the work takes its toll both physically and mentally. Many long-term care policies will allow you to hire a home-healthcare agency to give you some relief for a few hours a week. If you can’t find someone to come into your home while you leave town, look into skilled care facilities that offer respite care. Mike attended an adult daycare for several months. It was a lifesaver for me; when he was there, I was able to have a semblance of a normal life for a few hours a day.
If you can’t get away for more than a day, settle for several hours. My sister and I spent one beautiful, sunny day driving around the countryside, looking at fall foliage, and picnicking in a state park. We felt refreshed and ready to get back to our caregiving lives at the end of the day. If you feel you can only spare a few minutes, lose yourself in a book for an hour. Take a long walk. Sit at a window and watch the birds on your feeders. The goal is to stop thinking about yourself, your loved one, and your unique situation long enough to recharge your energy for the ongoing struggle.
Put your affairs in order. Someday, your caregiving days will end. If you have not updated your will, and designated someone for your (and your loved one’s) durable financial power of attorney, and durable power of attorney for health care decisions, don’t wait. Whether you or your loved one dies first, your survivors deserve the peace of mind that comes with knowing that your last wishes are clear. A good estate attorney can provide you with strategies to conserve your assets, and explain the different kinds of trusts that will protect your loved one if you die first.
Find out what your loved one’s wishes are. Mike and I had several conversations about end of life issues: what he wanted to be remembered for; whether he wanted a funeral service; whether he wanted to be buried or cremated; where he would like memorial contributions to be sent. We agreed that his body would be donated to a college of medicine for research purposes. When he died, it was a great comfort to me to know what to do next, and how to proceed with the necessary arrangements.
Forgive yourself. The work of a caregiver is exhausting, often tedious, and unrelenting. It can feel thankless and lonely. It is not possible to be at the top of your game at all times. I used to lie awake at night, examining my conscience and remembering each of my shortcomings with remorse. Don’t allow yourself to wallow in regret.
Forgive yourself at the end of every day, more often if you need to, and remind yourself of the good work you are doing to ease the suffering of your loved one. What you are doing is honorable, and you are doing your best. You deserve to feel good about yourself.