My uncle is slipping away from us. This vibrant, intelligent man who chose to be kind and loving and faithful, who pastor-ed a church in downtown Wilmington in the turbulent 60’s, who was a school principal for years in New Castle County, who had the rare art of encouragement almost down to a science, is slowly but steadily slipping away.
My Sweet Mama and I stopped over unannounced yesterday, and at my cousin’s invitation, we sat in on a conference between my cousin and Compassionate Hospice. Sometimes the answers are so hard, solutions to the immediate so elusive. As part of the extended family, we are aware that the best thing we can do is continue to pray, be supportive, and love this part of our family with every tangible means we can think of. My aunt is a courageous woman, and she has been remarkable in her care of her husband. From being a caregiver myself, I am so aware of how “carried” we can be in difficult situations, but I also remember how easy it is to feel overwhelmed. I remember getting out of my house on rare occasions for necessary “market runs” and I would find myself crying out loud, unrestrained, when I was all alone in my car and no one could hear me. I remember how little things were HUGE, and stuff that I might have been able to “shake off” I couldn’t when I was under the stress of caring for desperately ill people.
Case in point:
When we moved to our farm in 1989, our family was caring for Harriette, a high functioning individual who had developed a cancer on her vulva. (A REALLY bad place to develop cancer, believe me — but that’s another story) Daniel was busy with his plumbing business and raising chickens — and it usually meant that I needed to go for groceries late at night. I remember one night that Harriette was almost out of pain meds, and I needed groceries, so Daniel stayed with the kids and the ladies (We had four kids and three ladies at that time) and I made a bee-line for Meatland in Harrington. I had planned my evening almost down to the last minute, so that I could get out of Meatland and get to the drugstore before closing. I hadn’t shopped for quite some time, and I had a big cart load of things. When I pulled the cart into the checkout lane, the young cashier sighed and rolled her eyes. I tried hard not to notice or be too upset. It was late — she had probably had a hard day, and she had no way of knowing that I had just cried my eyes out on the way there, and that I was very, very fragile. She started checking me out, thumping the groceries down in a pointed way and the bagging fellow kept piling the things higher and higher in the cart.
I finally said, rather meekly, “Do you think maybe we ought to get a second cart?”
That brought another rolling of the eyes and a lips in a straight line, and so I said nothing more — especially since I saw that my time was running out to get to the drugstore for Harriette’s medicine. They piled the cart up and stuffed things into nooks and crannies, and I paid my bill and headed for my car.
About halfway across the parking lot, a bag that was just out of my reach suddenly slid off the top and crashed to the ground. Inside the bag was a bottle of lemon juice and a card I had picked up for some occasion. The jar shattered, and the card was ruined. I remember standing in that parking lot, crying, and the overwhelming feeling I felt was RAGE. I was so angry at that cashier, so angry at the store, so angry about not being able fix things for Harriette (and the way things were so complicated in my family) so angry that I didn’t have enough time to go back into the store and demand recompense because if I did, I wouldn’t make it to the drugstore on time and Harriette wouldn’t have her pain medicine. I felt so powerless, completely at the mercy of the “wind and rain” in a boat that was taking on water at an alarming rate. I don’t know what I did with that bag — I may have left in right there in the parking lot. I loaded my groceries and paused long enough to look at the store, clenched my fists and said, “If I can help it, I will NEVER again shop in this store!!!” And that felt really good in a twisted sort of way. (The truth is, I never did another shopping excursion in that store. I think I may have gone in there in an “emergency” to purchase an item, but I really was DONE!)
Looking back, I think about some of the hard lines I took during that time that were so stubborn and ridiculous. The state was paying me (the lowest amount they paid anyone) for Harriette’s keep and care, and I knew that they should be paying me more, but I kept saying, “I refuse to ask them for more money. They know how difficult this is, they know they should pay me more, but I will NOT ask them. More money doesn’t make an unbearable situation bearable.”
That sounds right, doesn’t it?
But I was wrong. More money wouldn’t have cured the cancer, but it would have bought some help for me. It would have bought time away for my family. It would have bought pizza on Saturday nights for the kids and Daniel and I — a real treat for our family. But I kept thinking that the state would somehow realize what the needs were and that they would do what was right. (I learned that, when it comes to MONEY, the state really doesn’t ever hand out money to care providers unless they are forced to. As long as I would do something and not ask for more, they figured that I was somehow getting along okay.) The upshot was that when Harriette was finally moved to a nursing home and my one lady had her hip replaced and then went to another placement, I was so exhausted, so incredibly depleted, and so sure that I was in the wrong field that I let my license expire, and kept only Old Gertrude, whom I could keep without a state license. When people asked me why, I would say, “Because we need to heal as a family. These last months have been a struggle, and I, in particular, but also our whole family, need to heal.”
I am so concerned about my aunt right now. Her eyes are so tired, and she is so determined to see this through — and that is admirable, but any time someone is caring for a family member, particularly a spouse, there is a whole different dimension and sorrow associated with that — more so even than what I’ve done with my ladies. It is challenging and difficult and Heart-rending. It is partly the weight of responsibility, but it is more than that — it is the intense love of a lifetime, playing an unfamiliar “last verse” to an old love song, a sorrow that never leaves you, a weight in your chest, a “foot in your stomach” kind of feeling that wants so badly to hope for the best, but is constantly being hit in the face with reality. We are in a solemn place of responsibility to hold fast the prayer ropes for our loved ones in these days. My aunt, in particular, but also their four children and their families.
I suppose this is too long — that I’ve probably lost some of you long ago. For those of you who are still with me, please pray for Vernon and Freda Zehr and their family. Logically, we know that dying is a part of living. Experientially? Well, it just doesn’t make sense.