People love a good mystery. We anticipate getting fed juicy clues until the full story is finally revealed. We feel curiosity, excitement, intrigue, and finally, fulfilment once we learn the truth. In real life, not all mysteries are welcomed. Especially when they seem unsolvable. Caregiving has far too many mysteries, given that almost every person becomes a caregiver or will need one.
I was 49 when I became an overnight caregiver. My 88-year-old mother was admitted to the hospital for a routine colonoscopy which went horribly wrong. During the next five days she suffered three medical malpractice mistakes leaving her partially paralyzed and an amputee. For the next seven years I cared for her and my dad and also hired other round-the-clock caregivers.
My role included managing their business and household, finances, ferrying them to medical appointments, changing and washing catheter bags, shopping for their clothes, medical supplies, and adult incontinence briefs, managing their medications, washing my mother’s knee before attaching her prosthetic leg, and propping up my dad’s spirits even as he entertained us and kept us all on track. I became an unpaid professional skilled-nursing caregiver for them. I did it without reading one book, taking one class, or having a close friend who had been a caregiver. This is not to claim, “poor me,” but rather to proclaim “poor us” as a society. My story isn’t isolated. I thought I could power through.
After having worked in human resource management in a bank, marketing for a health care company, and as an account manager for a hi-tech firm, I figured I was resourceful and a pretty good problem solver. The companies had provided extensive training programs or had detailed policy and procedure manuals. Conversely, caregiving was a riddle for me, and I went down several blind alleys looking for clues.
Very soon I was hit with a variety of mysteries:
Mystery #1: Why doesn’t our health care system provide more clues to help us?
Physicians, the health care companies, and Medicare and Medicaid don’t educate us in caregiving practices or proactively solve caregivers’ needs. Nurses are the closest allies we have, but they are often overworked and underpaid. When my mother was in the hospital or a convalescent care setting, I had to ask about everything without knowing what to ask. It felt like I had to beg for information and direction. The system is confusing and ageist. We don’t realize we have to advocate for our loved ones and ourselves.
Like any good sleuth I started out intrigued and eager for each new clue. As I waded through my mother’s diagnosis, treatment and corresponding care, I got discouraged without training on the payment and reimbursement process, the way nursing homes are assigned, and the nomenclature used on medication lists. Instead of being intrigued and excited to solve problems, I became frustrated. Feelings of trepidation and loss took over, adding to the sadness over my mom’s dwindling health. I needed more wins. I needed a roadmap through the geriatric jungle.
Each of us is only an accident away from being in a wheelchair like my mother was, or at minimum, needing a little care each day. Why isn’t it easier to use the health care system? We each start at ground zero having to go through the same steps the previous caregiver went through.
By providing health care coverage for all of us we’d be freed up to support our loved ones in healing rather than being on phone calls and virtual appointments. We need the world’s best minds to guide us on how other countries have installed programs that work better for everyone.
How can you demystify the system? Be a bulldog to get all your questions answered and keep a central notebook or virtual trail of any and all conversations and directions from health care providers.
Mystery #2: Why do most of us handle caregiving alone?
Whether we have a large family or none, we keep hearing “it takes a village.” How do we find our village? In families with several siblings, it often falls to one adult child, usually a daughter, to be the primary caregiver. She might have to quit her job and curtail her social life to take on the care manager role (I did). In some cases siblings and other family members are in conflict, which can impede the primary caregiver from doing their best.
When a spouse or partner is caring for their loved one, they might be hesitant to have another caregiver in the home and, as a result, compromise their own health. Many people don’t know how to ask for help. Either they feel they should figure things out on their own, or they don’t know whom to ask. And the idea of asking for a respite—someone to take over for an hour or a day—is foreign to many of us. How do we set up a support system? The clues are well hidden.
The solution: Form your village now. Start connecting with family and friends who have handled caregiving situations. Find out what they did that worked.
Mystery #3: When will my care receiver die?
A good mystery calls for a plot twist. Having your care receiver die is a given. We just don’t know when. Yet, we spend most of our time and effort trying to keep them alive and thriving. Wondering how long caregiving will last is common, especially after years of providing care. After caring for my parents from ages 88 to 95, with heart attacks, strokes, fractures, amputations, and increasing dementia, I wondered how long I would be able to hold up. Would they live to 100? My folks were madly in love and married more than 70 years. They lived to age 95 and died 30 days apart. I was lucky because I had received unconditional love all my life and gave it back to them. However, unconditional love doesn’t make caregiving any easier—it just keeps you there.
They began to ask out loud, “Why am I still here?” On a phone call with a high school friend, my 92-year-old mother asked her friend, “Why don’t I die?” The answer was, “I think it means God still has something planned for us to do.” My mother replied, “Well, I wish he’d hurry up and tell me what it is so I could do it!”
Yes, she and my dad were ready to die and talked about it. They both died peacefully after a few weeks of reduced appetite. The formal procedure is called “VSED” or Voluntary Stopping and Eating and Drinking and it’s been practiced for eons. It happens to be legal in all 50 states.
And just like that, my caregiving ended as suddenly as it began. Behind “How long with my care recipient live?” are questions like, “How long will their finances last?” “How long can I continue to get off work early, drive them to appointments, and how long will my own health last?”
Solving Mystery #2 is essential to make it through the end. You must have a support system and one that talks about death and dying.
The next mystery: When will our society start talking more about caregiving?
In general, our society doesn’t like to talk proactively about tough topics. We can start those conversations ourselves. Ask what our parents or spouses/partners want as they age, whether related to receiving care, downsizing, finances, or end of life. What kind of care are our partners/spouses or adult children willing to provide? Tour the convalescent and retirement facilities in your area. What are the costs and availability? Talking about these topics is essential to avoid being blindsided and recreating the wheel, which I felt I was constantly doing.
In books, mysteries are solved by gathering bits of information. Learn what your family and loved ones are thinking now, before an illness hits. Caregiving for parents and spouses/partners mostly falls on women. If women are 51 percent of the population, shouldn’t we be providing wisdom and resources to educate them and other potential caregivers? And since someday most of us will need care, we need to have these conversations before we are in the middle of our own health care crises.
There are plenty of books on caregiving. I’m writing one now. Plus, there are websites and governmental resources, yet we’re not being directed to them.
Perhaps we need something like 1-800-CAREGIV to avoid becoming broken spouses and frustrated adult children from the heavy lift of caring for our loved ones. Until our society adopts policies and programs that cover caregiving and caregiver respite, almost every family will be caught in the same mystery plot.
For me, caregiving was a supreme privilege and a crushing responsibility. Once my parents died, I became a hospice worker. I worked in a retirement community, worked for the largest nonprofit serving Washington state seniors, and for AARP. I facilitated workshops for families and organizations on how to plan your own peaceful death. Now the pieces fit and I have helped many others put the clues together.
Start solving these mysteries for yourself now.
Dori Gillam writes and speaks on creative aging, ageism, caregiving, and resilience. She facilitates Wisdom Cafes and tours the state with her presentation, “What’s Age Got to do With It?” A lifelong Seattle resident, Dori has worked for Sound Generations, AARP, and is Board Chair for the Northwest Center for Creative Aging. Learn more at www.dorigillam.com.
This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to aarp.org/caregiverswa.
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