Caregiving: Crazy-making and Self-defining

I confess, caregiving is hard. This probably isn’t a surprise. Anyone typing “caregiving” into Google already knows it’s hard. Or maybe fears it will be. It can also be fulfilling and life-altering and horrible and ruin your health. All your health – physical, mental, emotional, relationships.

Caregiving is hard in the way that planning a multi-year expedition to the North Pole is hard. In the way taking a class full of preschoolers on a field trip to a waterpark all by yourself and you’re the bus driver and lunch lady and chaperone and lifeguard and swim coach and head teacher all in one is hard.

You use every skill you have and then learn a few dozen more.

You become overly familiar with Medicare rules and Medigap limits, with your parents’ financial facts and bodily functions.

Caregiving is hard because you are in uncharted personal territory and because for the 34 million or so caregivers in the U.S. there are about 34 million different problems and ways to give care including long-distance or in–the-room, in their own home, in your home. In a retirement community or independent living or assisted living. You may even coordinate care in all of those plus nursing homes and hospice.

It involves any or all of the following: overseeing financial issues and bills, setting up powers of attorney and living wills and health information permissions and DNRs, filing taxes, applying for benefits, keeping the benefits; somehow assisting with activities of daily living and medical appointments and bodily needs, either yourself or by hiring others; keeping your parent entertained and active and connected to a social group and alert or rested, fed but not overfed, energized but not manic, cognitively aware but not demented, all as needed and appropriate.

Preventing her from burning down the house or dehydrating or starving or falling over rugs or in showers or off of sidewalks.

It involves buying a rose-painted cane after you’ve been her personal walking support for 18 months and she’s refused to buy one on the last 43 trips to CVS. And taking her to buy a brand new cushy swivel rocker for watching tv that she then never leaves. Or buying her a Chrome laptop that she then never uses.

But basically, you take responsibility for one or many – and often this is a progression – of the things that she previously handled herself. The uber-personal assistant, “let me do it” and “I’ll take care of it” become your stock phrases. There’s also “yes you can afford it,” or “that costs two times more than your monthly income” or “if that’s what you’ve decided I support you.”

Often you do all of this while continuing your own life working, playing office politics, getting laid off, moving cross country, or reconnecting with family. You hold down your job and take your dogs to the vet and have date nights with your spouse. You try not to fight with your spouse or dogs or coworkers even though you feel stressed and trapped and depressed and exhausted.

And then you get up and do it all again. For an undetermined number of years. No end in sight. Who’s thinking about an end? That would be terrible.

You know the joy of acceptance to an independent living community she loves and knows and can afford that is VA-benefit-approved. You feel strong and free and empowered and ready to let others handle her social life and emotional needs and love for mayonnaise, all of which were too much for you to cope with when she lived in your house and slept across the hall and tiptoed to her bathroom, trying not to wake anyone.

You receive 2 am calls from a hospital three hours away confirming they have permission to give your mom a blood transfusion. Or the 3 pm weekday call from a hospital 90 minutes away announcing that your fragile lame half-blind mother is being discharged to a nursing home another 90 minutes away and needed transportation 10 minutes ago.

You see her blossom among friends her own age and fly to the other coast with your sister to visit her sister and use the rose painted cane and take pictures with airline travel assistants. You let her show you how to play puzzles on her new tablet and check Facebook on her laptop and listen to her tell you about the new shoes she bought or fried oysters she ate or field trip she has planned. And you still handle the bills and paperwork and taxes. You keep tabs on the doctor visits and medicine refills and read the Medicare reports and insurance claims.

You learn the terror of the unknown future after treatment is declined and the looming other shoe that will drop when the cancer continues its slow spread beyond her kidneys.

You hear Nurse Nancy say the words lungs and palliative and infusion. You Google the words palliative and infusion and mentally calculate odds and rates and outcomes.

You learn what nuvoluminab is, how angelically kind hospice nurses are, and how “her process” unfolds.

Caregiving is hard and crazy-making and self-defining. I confess, some days I had dozens of regrets and other days I had no regrets. I played the ultimate oldest daughter part, slipping on the role as easily as an old, but maybe sour, sweatshirt. I railed against an abusively neglectful past and fought for a forgiving present. Some days I still rail and fight.

Being a daughter caregiver feels lonely but actually places you into a huge club of some of the strongest women you will ever meet.

You may know one. Or perhaps you are one. Caregiving will change a person, that I know.

Hands with rose by StockSnap from Pixabay / filtered from original
Woman with cane by PublicDomainPictures from Pixabay / filtered from original
Woman on bench by Free-Photos from Pixabay / filtered from original
Hand rose by Barbara A Lane from Pixabay/ filtered from original