by Ginnie Horst Burkholder
After a month like this past one, I have had to tell myself what I need to hear:
You have survived in spite of everything.
You have survived the days when it felt like you were drowning, and all most could offer was, “How’s Nelson?”
You have survived the deaths of both your parents while being blindsided by Lewy Body Dementia.
You have put your feet to the ground and prepared Nelson to be sent off to day care with his dignity intact at times when you felt like you had nothing to give.
You have survived the loneliness that LBD rains on a spousal caregiver.
You have survived the invisible illness of chemical sensitivities and the isolation it piles on.
You have survived being so numb you could not cry.
You have survived crying that started and that you could not stop.
Now I must tell myself I will survive this marathon of sinus and respiratory reactivity that threatens to throw me off balance.
Over the years, I have learned the many things I must avoid to keep from experiencing mild to severe reactions to my environment. The list is long and daunting, but I have managed my life the best way I can by limiting where I go, what I do, and who I do it with. If you wash your clothes using a scented laundry detergent or fabric softener, I will not be spending much time with you. If I do, I will have a day or more of symptoms that can include burning sinus, headache, shortness of breath, muscle weakness, and a nose that drips like a faucet. That is just one example.
I have, over the years, learned that if I have doubts about whether I am safe with something, it is best not to risk it. Over and over again, I would talk myself out of caution, saying, “It will be OK,” only to have symptoms later. Finally, I learned I had to give my health more importance than the offense someone might feel, or judgments they might make. I would be open about my needs. It’s been hard on some relationships and challenges all of them. Often, the lengths I have to ask people to go in order to be with me are just too great.
On Thanksgiving Day I really thought I would be OK. Instead I had a reaction that was the most severe I have had in years. That night I curled up in bed in a ball with chills, a headache, sinuses that burned like fire, and prickly sensations in my legs. I knew I was in trouble. The next day my daughter, who was visiting from Kansas, sweetly allowed that we “go with the flow” and stay home rather than take the outings we had planned. She took care of meals and then brought out the games. Watching her family play games kept my mind off of how badly I felt lying there on the sofa. The next morning they left, and I hoped to start getting better, but it didn’t happen. I got worse.
Midweek I begin to realize that I was in no shape to deal with Nelson over the weekend. I was listening to CDs until 3:00 a.m. because I couldn’t sleep. Anne Murray’s “Amazing Grace” and the words, “Lord, I hope this day is good. I’m feeling empty like you knew I would,” kept me from plummeting into despair. I had developed a tight cough and congestion, and my voice was completely altered. I was treating my symptoms with the Rx that my allergist had prescribed for such reactions, but I could see it was still a long way from over.
I made some phone calls to begin the process of getting Nelson into respite care for the weekend. That night, with the ball rolling, I asked him if he would go stay with Glenna for the weekend, “since I’m not feeling well.”
Glenna babysat for our children when they were young. We saw her in a local nursing facility, McKinley Center, during a previous respite weekend. He instantly recognized her bright smile and seemed drawn to her. He thought a long time before saying he could probably “pull it off.”
That was a little ironic considering the efforts I have to make each and every time he goes to respite. The Area Agency on Aging has to come out and do a home visit. Never mind that I am terribly sick and that bringing any fragrance into the house will increase my misery. The family physician has to fax his order for medications to the facility and do it quickly in this case. I have to make the arrangements with his day care to make sure he goes to McKinley on Friday evening and is picked up there on Monday morning. I have to sign a stack of about ten papers for the respite facility and, of course, pack his clothes. I told him, “You won’t have to do anything. I will take care of it all.”
The next evening I reminded him that he said he would go to McKinley Center for the weekend. Later in the evening he stood bent over in the kitchen and spoke into the floor words that I couldn’t decipher. With enough repetitions I finally heard, “How are your bodily functions?” Somehow, I knew what he needed. I told him that I would be fine, that it was nothing serious. I said I just needed a few days to rest and get my health back. He seemed reassured then and cooperated fully in going.
Friday morning, I sent him off for the entire weekend. He would not be back until Monday night. It seemed he actually was looking forward to going. He was more alert and articulate than he had been for a while. He asked if he could have a couple of dollars. I knew instantly that he was thinking of the treats from the candy machine that our friend Glenna bought him the last time we visited her. So I rounded up all the quarters I could find and told him he had enough to get one treat each day. He would run out if he spent more than seventy-five cents a day, but oh well. I knew there was no use telling him that. It would only confuse him.
Monday morning, after three nights of little sleep, I was shaky and unable to think or focus. I felt I should go to the doctor, but chemical sensitivities aren’t something that traditional medicine recognizes or acknowledges, and I was stuck on which doctor would be most helpful. I did not want to hear again, “You just have to avoid the triggers.” I broke into tears and, speaking to the omnipresent tissue box, acknowledged, “I need to do something, but I don’t know what.”
That’s when Sally knocked. I had called her two days earlier to confess that I had forgotten a walking date because I was sick. She chose this moment to show up unexpectedly at my door with get-well wishes and groceries. She is a nurse and confirmed that I needed to see someone. She helped me sort through my options and frankly, just by showing up at precisely my lowest point, helped me to believe that God is still somehow in this picture. I went to the doctor and was told to use a different antihistamine, and given an inhaler and an antibiotic. My condition had turned into bronchitis and an infection.
On Monday evening, I was far from over the hump, but it was time for Nelson to come home. He walked in the door a different person. There was an odor. According to him and my nose, he hadn’t had a shower the four days he was gone. He was unshaven. Half of the clothes I sent along with him were never worn. Wet clothes were in a bag along with his toothbrush and toothpaste. His eyes registered less life than usual. There was a bruise from the ankle bracelet used for those who may wander. The quarters were unspent. I mustered all my strength and gave him a shower, fed him, and put him to bed, thinking how far we had come from the people we once were when we loved to tackle projects that challenged our physical strength.
I made it through that week. Another weekend with Nelson at home stared me in the face. I still didn’t feel good, and I felt overwhelmed. On the phone my sister Micki said she and her husband Roger would drive out for the weekend to help. They were scheduled to come one weekend later for an extended family Christmas gathering. They are six hours away, and I didn’t want to ask this favor of them. But she insisted, reminding me that she has always said if I got sick she would come to help. “You have never cashed in.”
The week that followed gave me slow and small improvements. By the next weekend when Micki and Roger came back I was beginning to feel that the end of this episode was in sight. They would stay the week of Christmas. On Christmas Day I went without an antihistamine for the first time since Thanksgiving and felt good. Then I began sneezing. By the next day, my nose was dripping constantly, and I went back to the antihistamine, unsure what had triggered this new onslaught.
Now with two days to go before the New Year, my health seems so illusive. But once again I am speaking the words I need to hear:
You have survived. You don’t have to be any stronger than you are in this moment. You only need to live this one moment. You don’t have to do anything more than that. Moments have stacked upon moments, and you have survived. Survive only for this moment, and you will be OK.
Sometimes I even believe it.
© 2008 Ginnie Horst Burkholder
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