One of NFCA’s core messages for family caregivers is, “Reach Out for Help,” because caregiving is more than a one person job. Hillary Clinton said, “It takes a village,” referring to the rearing of children. Well, it takes a village to care for someone with a chronic condition as well.
Your circumstances may not be like mine and so the specifics of my story may not relate to your day-to-day life, but I know that you’ve had, or will have, situations in which a “village” would be the answer to your problems, too.
I should have known there was trouble ahead when 10 minutes before a taxi was to arrive to take me to the airport (I was going to Chicago for a conference) my husband, Steven, and I both fell as we were transferring him from his manual wheelchair to his electric one. Steven has MS and has been in a wheelchair for more than a dozen years now. Transferring was nothing new to us. We do it at least four times a day.
Neither one of us was hurt, but we were left with the problem of how to get him up and in his power chair and me ready when the taxi arrived. After trying several neighbors who weren’t home, I finally reached Peter*, who lives one street over. He came over right away and between the two of us we were able to get Steven safely and comfortably situated for the day. The taxi arrived, graciously waited for me, and got me to the airport on time. Crisis solved. Or so I thought.
Later that afternoon, while I was sitting in a huge auditorium listening to Health and Human Services Secretary Kathleen Sebelius address a crowd that numbered well over 1,000, my cell phone rang. The call was from our primary care doctor telling me about the results of a urine test that showed Steven had an infection. I called Steven right away. He wasn’t experiencing any of the symptoms we have come to associate with a urinary tract infection (UTI), but sniffles that had started the day before had blossomed in the intervening hours into a bad cold and cough that drained all of his energy and left him without virtually any ability to function independently. He sounded horrible and also a little bit scared. It was obvious that I was going to have to get home as soon as I could.
My first call was to our daughter, Darryn, to find out if she could pick up the prescription the doctor had e-mailed to the pharmacy and then stay with her dad until RB, Steven’s personal care attendant, arrived. He was already scheduled to come that night since I was away.
I then called our next-door neighbor, Janet*. “Steven’s sick,” I told her. “Would you be able to come over and stay with him until Darryn gets there?”
“Sure thing,” she said. “I’ll let myself in the back door. And don’t worry. Everything will be fine here. You just focus on getting yourself home.”
That’s where I turned my attention next. I called United Airlines and told them my story. I found out there was a flight at 6 a.m., 7 a.m., or 8 a.m. the next morning. There was no way I would be able to get home that night. At least I had options, but who would stay with Steven until I got home? RB usually leaves the house around 8 a.m., but even if I took the 6 a.m. flight from Chicago there was no way I’d get there before he left. I knew my son-in-law wasn’t traveling, which meant he might be able to stay with Steven for at least part of the time. Another call to Darryn confirmed that he was around and could come over, but not at 8 a.m. I called Leslie*, a friend who lives around the corner. “I can come by as early in the morning as you’d like, but I can only stay until 9:45 a.m. because I have an appointment at 10,” she said.
“Good enough,” I told her, adding, “Thank you so, so much.” We had coverage. That was a relief. I called the airline back and booked myself on the 7 a.m. flight, thinking I’d be a zombie if I got up in time to catch the 6 a.m., and a good night’s sleep would help me deal with the situation at home when I got there. I called home, relayed my plans, got a status report on Steven, and went to sleep. The next thing I knew the phone rang with my wake-up call.
I was out of the hotel with plenty of time to get to the airport even if we hit traffic. At 4:45 a.m., there wasn’t much, and I made it to the airport with time to spare. I got breakfast and a paper, checked on the situation at home (stable, I was told, although I was encouraged to get home as soon as possible), and settled down to wait for my flight. When boarding began, I felt relaxed and in control.
The flight wasn’t full and soon we were ready to take off; but we didn’t. We sat on the tarmac for quite a while before the pilot told us what was going on. “We have a small problem with the air conditioning system,” we were told. “We’ll be airborne in about 10 minutes.” Ten turned into 20 and then 30. The captain got on the speaker again and announced: “The 8 a.m. flight to D.C. has open seats. It will depart on time. We may actually depart at that time as well, but if you want to get on that flight instead of waiting it out with us, we’ll arrange it. There is room for all but 15 of you.”
Most of us collected our luggage, walked over to the next gate, and got on line to have our tickets changed for the 8 a.m. flight. When it was my turn, I was told that I was one of the 15 they hadn’t rebooked. “I have to get home as soon as possible,” I explained. “I have a medical emergency at home. I have to get on this flight.”
“We’ll do our best,” United’s rep responded, “but I can’t guarantee you a seat.”
“That’s what I need,” I said. “I have to get home. My husband is disabled and now he’s sick on top of that. I have to get home.”
Once again she repeated the party line. A woman I had struck up a conversation with as we sat on the tarmac offered to give me her seat if she had been rebooked on the flight.
“I’m sorry, I can’t do that,” said the United rep.
“Why not?” I asked. “What difference does it make?”
“I can’t make any changes until everyone is logged in,” she responded. I spoke to the manager and got the same answer. In the meantime, my new friend went over to the woman who was actually taking the tickets, explained my situation, and was told that I should just come over and she’d put me on the flight, which is exactly what she did. My caregiving mantra: Don’t take no for an answer and rely on the kindness of strangers, whenever possible. Shortly after, the 8 a.m. flight took off and arrived without a hitch in Washington at 10:30 a.m.
My journey wasn’t over, however. I was forced to check my luggage because there was no more room in the overhead compartments; so I had to go to baggage claim and wait, and wait. I let out a sigh of relief when I finally saw my suitcase on the belt. I don’t know why, but something told me to check the outside pouch to make sure that my laptop was inside. It wasn’t. I tried to retrace my actions. When did I last remember having it? Could I have left it at security? But if I had, there probably would have been an announcement over the PA. I was clueless as to where I left it.
I went to the baggage office and filled out a lost luggage form. The man at the desk was as nice as he could be and I felt he would really do what he could to find my laptop. Now I had a new problem to deal with: My laptop has my life on it — not just documents for work, but personal ones as well. How could I possibly have left it behind? During the taxi ride home I walked myself through every step I took. It finally hit me. I left the laptop in the backseat pocket of the 7 a.m. flight and forgot to take it out when we changed planes. Hmmm, perhaps that’s why we are told not to put our laptops there. I called United’s baggage rep back and told him where it was. A few minutes later he returned my call to say they had it. I could pick it up at the United ticket counter at National Airport. It would be in the vault.
I arrived home with a sigh of relief and apologies for being late. I gave my son-in-law a big hug and a heartfelt thank you. Steven looked and sounded terrible, but said he actually felt a little bit better. He also looked relieved, and I felt relieved that I was there with him, and that we live in a “village” with friends and family who don’t hesitate to lend us a hand when we need it.
Author’s Note: The best way we know to set up a volunteer village is through Lotsa Helping Hands. Go to www.nfca.lotsahelpinghands.com/caregiving/home/ to find out how to put this free service to work for you. SM.
* Some names have been changed to protect the privacy of those involved.
Love this.... it is oh so true and i am very grateful for all the friends and family in my village!
Posted by: Cheri | 05/29/2010 at 12:02 AM