I don’t know for sure who reads my blogs about The Caregiver’s Choice, but I’ve had a strong feeling this week that someone needs the comfort of what I am going to say today. The details are rather personal, but then so are the details in my book, and if the story they tell helps anyone, it’s worth it.
When we took my mother into our home, she was already suffering severe dementia, so I was not surprised that she could focus on no one but herself. She had no concept of the strain it caused me as she woke me every two hours night after night nor of the effects of her angry outbursts on both my husband and me. I began to think of that unawareness as “the patient”s tunnel vision.”
But up to the time of my husband’s second heart procedure, I had not seen such tunnel vision occur in him. At Arthur’s request, I had spent the week before his hospital visit making all the arrangements by phone to smooth his admittance. We drove the hundred miles on the day he was supposed to enter the hospital feeling confident, only to discover that they couldn’t even find his name in their computer. Our daughter had driven from her home in another city, so she sat with her father while I tracked his records.
When my husband was finally in his hospital bed, the medical staff said, “We’re stopping his diabetes medicine because the dye for the anagram will be very hard on his kidneys, and we don’t want to add to the strain.” I could understand that, but since I’d been the one who daily tracked his blood-sugar level, I knew that the swings in the level could be rather severe. I asked the nursing staff to check his sugar level, but no one did. I also asked them to be sure he got food, but they told me rather casually that his tray was lost and they’d feed him when they located it.
Because of a bone spur in his spine, my husband had slept for years in a recliner with his back somewhat bent. He asked them not to put his bed down flat as it caused severe pain. Despite his request, each time they checked his vital signs, they cranked the bed down flat. And indeed, the bone spur hit a nerve, causing pain. Clueless, they would ask Arthur, “Why is your blood pressure so high?”
Before it was even time for the heart procedure, I was a nervous wreck. Then, my husband said to me, “Why are you so upset? I’m the one in this bed.” Shocked and hurt, I couldn’t answer. I didn’t want to answer for fear I’d be angry and make his problems worse. But didn’t he see that his health situation was changing my entire life as well as his? No, he apparently did not, and since I knew that, by then, his blood sugar was probably low, with the resulting irrationality the condition caused, I didn’t say anything at all. I just stumbled out of the room.
My daughter asked a hospital family counselor to talk to me for awhile. That helped me to get through the day and the night, but it didn’t ease the loneliness and hurt. If Arthur did not understand the effect on me of what was happening in our lives, then we weren’t really a team any longer. I couldn’t turn to him for comfort.
At that time, there were several forest fires raging in the Colorado mountains, and when my husband was released from the hospital, we drove home through dense smoke. Arthur rode with our daughter, and I drove alone. The sun was only a blood-red smear across the shrouded sky. I could see none of the familiar landmarks. And that was happening in my emotional life as well. The familiar landmarks were gone. How could I continue to take care of my mother and my husband without the loving support I had previously received from them both? My own pursuits, my writing, my other creative projects, my career itself were all on hold, and nobody seemed ready to acknowledge that. But under the circumstances, how could I be selfish enough to cry out, “It’s my life, too!”?
At home we settled Arthur in the recliner to begin the recuperative process. And then–a sweet miracle. My daughter came into the kitchen and said, “Mother, I can stay. Why don’t you go to the hot springs hotel and spend a day just for yourself at the spa. I can take care of Daddy and still get back to my job on time. You need to rest because I know that whatever happens with Grandma and Daddy also happens to you.”
My daughter’s understanding and her gift of that day gave me the chance to be alone, to think about the changes in my own life situation, and to make plans about how to survive in a loving, caring way without my husband’s emotional support.
If you are a caregiver reading these words, and you don’t have a dear daughter to tell you this, let me tell you: I know that what is happening to your patient is happening to you, too. And you must take care of yourself because you are as important as every other person in your sad situation. If you don’t survive, everyone loses. My love and blessings go with you.