I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went.
On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times. Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning. “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.
Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake. Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke.
By midnight, Jennifer and I had tagged-in for the late-night shift with Dad. He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him. He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep. After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much! I hurt all over!” After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.
While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home. Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home. He sang the praises of hospice care and of the support they had to offer. Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!
About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there. Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day. He was still very anxious, though, and still in pain. By 10:00, he started experiencing some shortness of breath. “When is that ambulance going to get here? Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic. When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain. At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.
Meanwhile, at my parents’ house, my husband Kevin and David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed. Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.
We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room. Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick). The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night. It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.
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| A Hoyer lift |
The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another. I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model. Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him. Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident. We hurriedly put sheets and blankets on the bed, and then we waited. (We had his favorite Dodgers blanket and his Glee pillow all set to go!) Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us. And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.
When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative. There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency. Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both. Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.
When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house. The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.
I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently. Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed. He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door. He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace. In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.
While he slept, we unpacked, did more laundry, and watched over him. I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed. I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm. I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered. Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought. He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.
Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s,no insurance co-pays! My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook. A little while later, Linda, the intake nurse from the Hospice service, arrived. As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information. She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad. We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital. Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything. “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.
“We’re just so worried, and we want to make sure we do everything right for him,” I told her. She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy. “That’s the Crisis Kit,” she said. “It will be here just in case.”
“In case what?” my sister asked her.
“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,” she said. She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over. She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has. Don’t worry, though, you won’t have to decide any of it on your own. We will take the reins, so to speak.”
“We’re just so worried, and we want to make sure we do everything right for him,” I told her. She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy. “That’s the Crisis Kit,” she said. “It will be here just in case.”
“In case what?” my sister asked her.
“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,” she said. She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over. She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has. Don’t worry, though, you won’t have to decide any of it on your own. We will take the reins, so to speak.”
We asked her about the two things on the medical care list that made us the most nervous: flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues. To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us. She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter. She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen. “Do you want to try it on him while I am here?” she asked. “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”
“Just do it on me!” Jennifer volunteered.
“Seriously?” Linda said.
“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!). We were good to go on that.
I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off. Easy enough, I thought.
“Just do it on me!” Jennifer volunteered.
“Seriously?” Linda said.
I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off. Easy enough, I thought.
Linda said that she needed to look in on Dad as part of her initial assessment. I told her that we did not want to tell him that we had called Hospice. She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him. Fair enough, I thought, and we lead her into the den to see him. She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes. She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns. We felt better; we felt like there was a plan and a back-up plan in place. We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.
As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around. “At last, he is awake!” I thought. I waited for him to break into a big smile and say that he was so happy to finally be back at home. Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”
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