MARY READY: For the caregiver: You do what you gotta do
Some years ago, I saw Helen Anderson at Winn-Dixie. Exchanging the usual greetings, she said something like, “It feels so good to be out by myself even if it’s just being in a grocery store.” I thought that was an odd thing to say.
Now I understand. She cared for her husband James in the last stages of his life.
I saw him as a strong, Christian man of unique integrity and character. A pillar of the church and community. A man of great humor and wisdom. But she saw the other man, helpless and dependent upon a loving wife to attend to the smallest needs of his daily life and hygiene.
Now I’m there.
My husband Frank is an invalid, rendered incapable of self care by Type 1 diabetes, four strokes, peripheral neuropathy, a heart attack, and a broken neck. I feed him, give him his medication, dress him, and lift him off the floor. I change soiled bed linens, sometimes at three o’clock in the morning. Since he can no longer drive, I do all the driving and keep the car gassed up and maintained, something I should have been more grateful for when he used to do that. I pay the bills, keep the household accounts, mow the lawn, and take out the trash, again something he once did, and I took for granted.
I’m both wife and husband, assuming both roles in our marriage.
Feeling quite sorry for myself, I called Aunt Joyce. As caregiver to her husband, dying of cancer, she knew exactly what I’m experiencing. And in her words, “It’s only going to get worse.” Over tea and cheese biscuits, she related her own story and gave me permission to feel angry, frustrated, and resentful.
Good. Because I was feeling pretty guilty about those emotions and concluded I was a really rotten person. The anger comes from the broken furniture, the cherished glass candy dish smashed to shards. Then the cleanup after the “accidents,” the sweeping, mopping, repairing, or throwing away treasured things not salvageable. When he falls on the floor three or four times a week or loses control of his power chair, door frames are ripped up, tables get tipped over, and walls damaged.
The frustration comes from struggling with getting his chair loaded onto the van lift to take him to frequent doctor appointments. It comes from not being able to get him out of the bathroom when he’s fallen, wedging himself between the toilet and tub. From lifting him into bed and losing my grip on his gait belt, and ending up on the floor with him. Frustration and anger over jamming my toes into several pieces of equipment needed to move him around. A leaking catheter, soaking the bed. Sleep deprivation.
Aunt Joyce remembers her handsome, charming fighter pilot husband and then the sorrow at seeing him reduced to a helpless man knowing he was going to die, knowing he would not see the flowers bloom in the spring.
I, too, remember my handsome charter boat captain who once slalomed behind our ski boat from Navarre Bridge to Brooks Bridge. A man who threw me over his shoulder like a caveman, when I wasn’t ready to leave a party. Liberated woman or not, something in my nature loved that macho crap. Once upon a time, I thought he was Superman.
Then there’s the guilt factor. Aunt Joyce and I talked at length about that. Both of us have been yelled at and criticized by the husbands we struggled to care for. Logic dictates if someone is attending to your every need, you’d be very, very nice to them. Nope. Whether it’s the pain talking or his own anger and frustration at being sick, the patient kicks the caregiver instead of the dog. After awhile, you yell back. Then comes the guilt at having lost your temper.
There’s even future guilt. I asked Aunt Joyce why she put up with so much for so long (“It was hell”), and she confessed it was because she kept reminding herself, that when he died, she didn’t want to look back in regret over their 53 years together and feel that she hadn’t done every thing in her power to honor her vows and make her husband’s life as good as possible in the final days. She, like me, can’t help but wonder “If I were the one in need, would he do the same for me?” Well, I promised Frank’s mom 47 years ago at our wedding that I would always take care of him. I made that promise in a state of complete cluelessness.
We experienced other emotions as well. The worry at leaving him long enough to run to the pharmacy. And the humiliation along with our spouses when a neighbor or a stranger had to be called to help and would see him in some vulnerable and embarrassing situation. That’s hell on a man’s ego.
Venting is good therapy. Thanks, Aunt Joyce.
Mary Ready of Destin is a twice-retired English teacher and long-time area resident. Her columns are published on Saturdays.