New York, New York
United States
janeAdvocating For Your Loved One
Like many caregivers, Mary Knocke’s life was turned upside down in an instant. As a happily remarried woman in her Freedom Fifties ready for a new career, she was just hitting the stride of her life.
When her husband collapsed in their bedroom from a stroke, she was plunged into the first phase of the labyrinth of caregiving: Shock & Mobilization.
She did a lot of things right. After the EMS team carried her husband out to the ambulance, she began protecting herself from the shock. She stopped long enough to put on her makeup. Vanity? No, sanity. It was a way of interrupting the hyper stress response to a trauma by performing a normal familiar routine. Mary was then present enough to drive to the hospital safely, and comfort herself with the thought, “They’ll figure out what it is, and it’ll be fine tomorrow.”
It wasn’t fine. Her husband had a second, massive stroke while being prepared for surgery. Like many caregivers, Mary had to figure out how to alert family members and friends while spending days in the hospital without any idea of the outcome. Smartly, she created an e-mail tree that allowed her to update family with whatever news there was, without the emotional exhaustion of talking to each member and becoming overloaded with their responses.
Mobilizing
We cannot mobilize until the shock wears off. And for the first weeks in crisis, it is all a caregiver can do to keep track of the conflicting recommendations of different doctors and advice from family and friends. Like most of us, when Mary was able to bring her husband home from the hospital the first time, she expected they would go back to “close to normal.” But as the weeks went on, she realized her husband’s stroke had been so debilitating, he might never become significantly better.
Ask the tough questions. Mary was a realist. After several months, she had courage to ask the doctor “What can I expect about the future?” Only then did she get a clearer picture of what the New Normal was likely to be. That gave her some semblance of a timetable to consider whether to continue to care for her husband at home or whether he needed to be in a skilled nursing facility.
Your role as the family caregiver is essential at this point, to act as the patient’s advocate and interpreter, to seek out alternative paths, and to draw in the rest of the family. This is the time to set aside old grudges with your siblings or a first family.
Have no shame in calling on friends with connections in the medical field. But don’t skimp on your sleep! You need seven hours of rest to rinse out your mind of the stress chemicals that will accumulate while you are lurching up and down the roller coaster of the search phase. An overload of stress makes us stupid! And your every waking moment will be dominated by the search for the right answer, the certain diagnosis.
When in the mobilization phase, your primary task is to be a good reporter.
Talk to several different specialists. Don’t take the word of the first doctor as God’s word. Doctors are brilliant and compassionate. They are also human and fallible. Most are rushed. Note how thorough a history the doctor takes, and not just about medical issues. Does he or she take the time to know what the patient lives for? What would be the impact of various treatments on the patient’s quality of life? Some doctors are out to persuade you to join a protocol they are testing. And to some, you are a merely a case management problem; the consult will be all about tests and dates.
Take a tape recorder into any important consult, or at least a notebook. Get it all down. You will be surprised at how you and your patient cherry-pick the information that you want to hear, or exaggerate the negative. It’s normal. You are both under great tension.
Better yet, especially for a spouse going into an important diagnostic consult, take along a third pair of ears—an adult child, sibling, or friend. A neutral observer can later validate or challenge your own gut reactions.
Explore complementary treatments. A good nutritionist can be a great partner in suggesting how to bolster the patient’s immune system and head off secondary reactions to medicine or surgery. Acupuncture and massage can relieve tension for both you and the patient while you are in the dark about what to do.
Don't let others, further from the situation, undermine you. When a sibling or the first wife calls in from the other side of the country to insist that you are heading in the wrong direction, remember this. The farther away distant caregivers live, the more certain they are that you don’t know what you’re doing.
Don’t rush to a decision. You and the patient need time to process what is happening. Take a weekend away without talking to anyone else, and just sit with nature or music or bat a ball around or take bike rides—anything to rest your mind and remember what you have to appreciate. When you are in a calm and receptive state, you are more likely to receive an insight or inspiration, and know which direction feels right.
In Mary’s case, the delay in making a life-changing decision was complicated by kibitzing from her husband’s first family. They lived at a distance. They insisted that Mary should continue to be the sole caregiver for her husband, at home. What they didn’t see was that it took Mary, and any workman she could persuade to help, a half hour to get her husband upstairs. He was obstinate about not accepting help and often fell. The situation was unsafe for him and kept Mary in a dangerous state of continuous hyper-vigilance.
It is always possible that the health crisis will come to a head while you are deliberating. The patient might have a stroke or a heart attack or go into diabetic shock. Emergencies happen. But you can’t allow yourself, as the caregiver, to feel guilty that you didn’t move to action faster. There is no such thing as the perfect caregiver. If you are worried that you’re not good enough, that is the tip-off that you are good enough.
It took Mary months to recognize that her new career was not going to be the one she planned. She had been designated as the family caregiver. But that is not enough to keep a healthy person’s spirit alive indefinitely. The core question is: How does the healthy family member continue to have a life and provide for his or her own future while caring for a loved one with a life-threatening illness or a chronic condition coupled with normal aging?
This may well be the most important passage of your life. It is the catalyst for a resurgence of all the old issues in your family. It pits your own fondest hopes and dreams for your middle years against the wants and needs of those closest to you. How you respond to this family crisis, and the way it makes you feel about yourself, will follow you to the end of your days. So, take your time in making decisions that are right for you, as well as your loved one.
Studies on the impact of family caregiving focus exclusively on pathology. As a result, a common fear is that anyone who accepts the job will get stressed out, be emotionally and physically exhausted, be forced to give up their job, lose their friends, and ultimately sacrifice their health and financial security. Tragically, this is the downhill spiral experienced by roughly one third of America’s caregivers, principally because our society does not reimburse family caregivers or support us in any meaningful way.
At the end of the first year, after the shock, the doctor made it clear that Mary’s husband was not going to recover anything like his full physical or mental capacities. Mary remained the realist. She summed up the ambivalent feelings of many caregivers: “My greatest fear is that he’ll die, and my greatest fear is that he won’t die.”
Come back to read the next journal following Mary’s story.
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