If it’s not one thing, it’s another

Mom was discharged from the SNF on Friday. I left work early to pick her up and take her back to her assisted living community. Though we were both happy to get her out of the nursing home environment, I quickly realized that there is no rest in sight for me. For the next couple of weeks, or however long it takes her to regain her strength, she’s going to need more help from me than ever.

I got her settled in at home and waited until they brought her chicken noodle soup on a tray for dinner. She took one bite and told me she felt sick, so I ate the soup. Before I left to go home and feed my cat, I convinced her to drink half a can of Ensure. I went back around 8:00 p.m. to visit for a while and help her change into her pajamas. Then I went home to get some much needed rest myself.

I went by at lunch time yesterday to check on Mom and be present for the home health care evaluation, which turned out to be very timely. Mom was having pain in her back, near her right shoulder blade, and the facility’s care director didn’t offer much in the way of either advice or assistance. The home health care nurse listened to her lungs (and pronounced them “nice and clear”), asked several questions about the pain and felt the spot where Mom said it hurt, diagnosing it as a muscle spasm. I gave Mom some ibuprofen and got her a heating pad, which helped. When I left yesterday, I felt like we were on an upswing and things could only get better.

This morning I was awakened by the telephone. Caller ID told me it was the office at Mom’s assisted living, which set off my alarm bells. “Mom’s fine,” the administrator told me first thing. He was calling with another concern. Long story short, it appears that she brought home bedbugs from the SNF. I got dressed and headed over there. The Orkin man came to do an inspection, and the decision was made to move Mom into a vacant room for a few days while her room is fumigated.

Thank goodness this happened on a weekend when I could be there. Every single piece of her clothing, bedding, towels, etc. had to be laundered – and the staff didn’t seem to have any concept of machine washable vs. “dry clean only”. I pulled all her nicer clothes out of her closet and took them to my car to clean myself. Then I supervised the packing of her belongings, wrapping her fragile items in paper towels or bubble wrap, since the staff didn’t seem to show any particular concern for that either. I took a box of the most fragile stuff home with me. The packing and transition to the new, temporary room took several hours. Mom was completely exhausted and fell into her new bed almost immediately. I could easily have done the same, but I had to go home and do her laundry so that she’d have pajamas to wear tonight.

Bedbugs, for crying out loud. As if we didn’t have enough to deal with right now. As if she needed to be uprooted again, just as she was beginning to readjust to being home. As if I needed to spend a day moving her out of that room and another day (next Saturday, I’m told) moving her back in. It feels  like we just can’t catch a break, either one of us. I feel like I could sleep for a week… but tomorrow is Monday, so I’ve got just eight hours before I have to get up for work. Guess I’d better rest while I can.

She Said

“I don’t know what I would do without you,” she said.

“You won’t ever have to know that,” I replied.

“Don’t plan on going anywhere until after I’m gone,” she said, trying to smile.

“I’m not going anywhere,” I said, smiling too. “As long as I don’t get hit by a big yellow school bus…”

“I’d make them move me to the hospital bed next to yours,” she said.

A Very Long Week

Mom is still at the SNF unit, which has worked out better than I initially feared. When I visited on Saturday morning, I found her bed neatly made with fresh linens – and empty. Mom was in the occupational therapy room at the end of the hall, sitting in a wheelchair and pedaling a stationary bike. She had the IV antibiotics dripping into her arm but no oxygen. She did fifteen minutes on the bike and her O2 levels stayed above 90. The physical therapist was pleased. It was so good to see Mom up and around, able to pedal a bike and walk almost all the way back to her room. For the second time I left the SNF in tears, but these were tears of relief and gratitude.

I’ve been to see her five times since that visit. Sometimes it seems like a pretty OK place, in spite of the close quarters with three beds to a room. She can’t see anything out the high window but a patch of sky, so I brought her a potted miniature rose and another small plant to decorate the windowsill. The staff, for the most part, are friendly and accommodating. Physical therapy, in the bright, spacious therapy room with one mirrored wall and one wall of windows onto a patio, seems to be the highlight of her days.

Other times, like tonight, it’s a challenge just to stick it out for a two-hour visit – trying to ignore the querulous man complaining to the nurses at the station just outside her door about not getting his pills or the woman loudly calling “Help!” over and over and over. Eventually she switched to calling out names (men’s names, perhaps her husband or sons who had left her there?). “Michael… Michael… Help me! Michael, where are you? George? George?” It was heart wrenching. Mom and I worked one of her newspaper crosswords together, then I read to her from her book of daily devotions, raising my voice to be heard over the cacophony of unpleasant sounds around us.

Nights like tonight, I understand why Mom, who is normally so easygoing and agreeable about almost any situation, keeps telling me several times a day how much she wants to leave that place and go home.

The doctor saw her yesterday and says she’s improving. They’ve taken her off oxygen and she seems to be doing fine without it. The results of her latest blood work should be back tomorrow and if all goes well, she could be going home by Monday. Dear God, I hope so. It’s been a very long week, even for me. I can’t imagine how long it feels to her.

Caretaker Anxiety, The Sequel

The last 24-30 hours have been rough. I was notified mid-afternoon yesterday that the hospital planned to discharge my mom to a skilled nursing facility (SNF). I was only given two options and very little time to research them. From what I could find online, neither looked good – both have a substantial list of deficiencies found in their last inspection, so I went with the one that had the fewest published complaints from family members. I hate choosing between the lesser of two evils, especially when it comes to my mother’s health, so that caused a lot of anxiety for me.

I left work early and got to the hospital just before 5:00 p.m. I thought about stopping in the hospital chapel to meditate and pray a bit, try to center myself before I had to face Mom with the news that she was being moved… but they’d rushed the transfer so much, I was afraid they wouldn’t stick to their promise not to move her before I got there. So I just hurried up to her room.

 She was having trouble remembering things and our conversation went over and over the same ground. I explained at least four times about the transfer to a “step down” nursing facility. When her dinner came, Mom was only interested in the Ensure drink and commented repeatedly on how it was a good source of nutrition when she had no appetite. I ate her entrée, since I hadn’t had time to pick up any food for myself, and tried to interest her in the fruit cup. She took a bite, just to please me I think, then pushed it away. I was reminded of her rule when I was a child and a picky eater – you have to take one bite of everything before you can say you don’t like it.

The EMTs arrived just before 7:00 to transport her by ambulance to the SNF unit. One of them was a rather hunky Latino with muscular arms. As he was leaning over Mom to slide her from the bed onto the gurney, she commented on his muscles and I saw his teeth flash in a Colgate white smile. “You’ll need muscles to lift me!” she said, and he laughed. Was she flirting with him? I wondered, smiling as I packed up her personal belongings. I took my car and met them at the nursing home.

I was dismayed to see that there were not two but three narrow hospital beds in each room. Thankfully Mom was given the bed next to the window, which is also the closest to the bathroom. Further dismay: the tiny bathroom is shared with another room of three patients. What would happen if she were incontinent and the bathroom was occupied? In the next room, a patient moaned and cried loudly. Other patients sat half dozing in wheelchairs in the hallway. A woman cried out to me as I passed, waving a white washcloth. It was every bit as depressing as I’d feared, and it took all my willpower to keep a smile on my face and not let Mom see my anxiety. The night shift staff who got her settled seemed impatient and uninterested in a new patient adding to their workload. I had to ask at the nurse’s station where her call button was; it was hanging from a cord along the wall, far from where she could have reached it. When I asked about paperwork, they told me to come back tomorrow when the business office was open. I got Mom settled as comfortably as I could, kissed her goodnight, and left her already dozing off at about 8:00 p.m.

As soon as I was safely in my car, I burst into tears. It gutted me to leave her there. I felt that I’d failed as her advocate because surely a good advocate would have made sure she didn’t end up in such a dismal place. I got home and poured myself a glass of wine, but it did nothing to ease my anxiety. Sleep was a long time coming and was filled with restless dreams, including one where I called up her insurance company and said things like “Was she kicked out of the hospital and sent to that horrible place because you won’t pay for anything better? Shame on you!” I woke at 3:00 a.m. and lay awake for a long time, so anxious and afraid for her that I was half tempted to drive over there in the middle of the night just to make sure she was still OK. I fell asleep, finally, praying for her safety.

I’d planned to go to work today and just leave early to take care of the paperwork. But at some point in my restless night, I realized that my top priority had to be checking on Mom first thing this morning and making sure she was getting appropriate care. I called in some FMLA leave time and went to the SNF at 8:00 a.m.

When I walked in to her room, Mom said “Now my reality returns to me.” She told me she’d awakened from a night of bizarre dreams and didn’t know where she was or how she got there. She’d already had her breakfast when I got there, so she must have been awake and wondering for a while… but she had still eaten some, which I took as a good sign. I sat down on the edge of her bed, held her hand and explained about the pneumonia and being transferred from the hospital. Once we started talking about it, she did remember a little bit about the hospital and the EMTs who brought her in the ambulance. She told me that her dreams were very strange and unsettling because they felt so real but she knew it was too weird to be reality. She started quoting scripture to calm herself in the dream and said “You are a God of love. I know You wouldn’t create THIS!” It hurt my heart to hear that, to think of her awakening from frightening dreams to find herself alone in a strange place, with nothing familiar to hold onto. I knew I’d made the right decision to go there first.

I brought her Bible and a book of daily devotions, along with her pajamas. I read today’s devotional reading aloud to her; appropriately enough, it was about dealing with difficult days. I hoped the reading would give her some peace of mind and banish the last of the night’s darkness.

In the bright sunlight and bustling with daytime activity, the nursing home didn’t seem quite so depressing. All the staff I spoke with this morning were cheerful, friendly and helpful. The admissions director even apologized for the way the hospital social worker had handled the transfer, though it wasn’t in any way her fault. After speaking with the head nurse, I started to feel that this might turn out OK.

I stopped in again after work and found Mom sitting up in bed, knees bent, reading her book. The newspaper I’d brought her at the hospital the day before was scattered beside her. She was cheerful and upbeat. I brought her a super soft velour throw that I’d picked up at CVS, along with a get well card decorated with pretty butterflies. She enjoyed both, exclaiming “It isn’t even my birthday!” At the hospital yesterday she had told me that the Christmas song “Mary, Did You Know?” kept getting stuck in her head, only she couldn’t remember more than the first couple of lines. So while I sat visiting with her, I downloaded the song to my iPhone and then handed it to her to listen. She put the phone up to her ear and closed her eyes, and it looked like she was fighting back tears. Every now and then she would sing a line or two, softly.

I didn’t stay long because just getting up to use the bathroom wore her out so much that she needed to lie down and rest. She’s got a long road to recovery, I expect. I’m just praying that she won’t have to do it all at this SNF unit, that I can convince the doctor to send her back to her assisted living with home health care in a week or two. I know she would heal faster in her own comfortable room, with peace and quiet and privacy.

Twenty-four hours ago this felt like a disaster and I was a nervous wreck. Tonight I’m OK. Being responsible for her care is a big job at times like this and I’ve felt the caretaker anxiety keenly in the last few days, but I’m OK. One day at a time. We’ll get through this together.

Why she needs to be here

Bright and early yesterday morning I picked Mom up to take her to the dentist. As she got in the car, she told me she was having trouble walking. I got her buckled in, stowed her walker, and asked for clarification as we drove. She said her legs felt weak and her balance was off. Concerned that she might be coming down with the virus I’d just gotten over, I asked about other symptoms – no headache or other pain, no nausea, no coughing or congestion. She said she didn’t feel sick, just tired. The appointment took less than 20 minutes, but by the time we were driving home she was visibly fatigued. I walked her up to her room and she practically fell into bed – literally, she lost her balance and would have tumbled in if I hadn’t caught her.

Concerned, I stopped at the front desk on my way out and asked them to check on her at lunch time and bring a tray to her room if she didn’t feel up to going down for lunch. Then I went to work… and tried not to worry. I called at 12:30 to check on her and was told that they brought her pills and chicken noodle soup and she was resting. I called back a couple hours later and asked the nurse to check on her again, which she did. She told me that Mom had difficulty sitting up and was so lethargic that she appeared sedated. “I think you should take her to the ER to get checked out,” she concluded.

I shut down my computer, told my boss why I was leaving, and bolted out the door. My friend Joy met me at Mom’s place and it was immediately apparent that she was very sick indeed. She wasn’t even strong enough to sit up without help, and there was clearly no way she was going to walk to the car, so I asked the nurse for a wheelchair and her medication list. Thank God Joy was there because I never would have been able to get her into the wheelchair (or into and back out of my car) without help. She couldn’t even lift her legs and was almost a dead weight. Joy, calm and cheerful and practical, also helped me keep it together so that Mom wouldn’t see how alarmed I was at her condition.

The ER didn’t look like much, but we got great service. Paperwork was filled out and she was taken back for her intake and EKG within 10-15 minutes. All her vitals looked good – no fever, blood pressure within a normal range (lower, in fact, than is usual for her). When they asked her questions, she answered in a barely intelligible mumble, as if she had a mouth full of rocks. They checked for signs of a stroke, then ordered a chest x-ray and bloodwork. Once they got her onto a gurney in her own little curtained cubicle in the ER, Joy brought her a cup of water. And as soon as she drank it, she could talk normally again.

With the exception of one slightly snarky male nurse, everyone in the ER was awesome. They took great care of her and were totally understanding about letting both Joy and me stay by her side, even though Joy isn’t a blood relative and the sign said “only one visitor per patient.” The doctor looked at her EKG result and said something about “an interesting rhythm,” then listened to her chest and told me he suspected pneumonia. Three hours from the time of our arrival, she was admitted and taken up to room 1608, where I gave her medical history for the third time while she promptly fell asleep.

The floor nurse asked if I wanted to spend the night in her room. I thought about it briefly. Mom gets confused easily even when she’s not ill, and I imagined her waking up and not knowing where she was or why. I should be there, I thought. But it was almost 8:30 p.m. and I hadn’t eaten since noon, and I knew I wouldn’t be functional for work the next day if I didn’t get a decent night’s sleep. So I settled for writing my name and cell number on the white board in her room and giving the nurse a heads-up that she might awake confused about where she was, and I went home. Sleep, even in my own comfortable bed, was not easy.

But today has been a day of rapid improvement and good news. I called around 10:00 a.m. and spoke to a nurse, who told me that the plan was “several days of antibiotics, then do a new EKG and chest x-ray and reassess.” At lunchtime I called and spoke to Mom briefly, encouraged to hear her speaking normally and sounding lucid and coherent. I told her I would come by to visit right after work.

About 3:45 p.m., I was in a meeting at the office when my cell phone rang. It was the head nurse assigned to my mom’s case, calling to give me an update. “Are you still at work?” she asked, and I immediately felt guilty – like, what am I doing at work when I should have been there at my mother’s side in the hospital. But the news was all good. Pending a physical therapy assessment, the doctor was planning to send her home in 1-2 days, most likely with an order for ongoing PT at home.

I went straight to the hospital after work. Mom was getting a breathing treatment when I arrived, so I just squeezed her hand and sat quietly in the window seat, watching the sun set and the lights of Burbank come on. As soon as the breathing treatment was finished, the physical therapist arrived. After about 15 minutes of back massage – a gentle drumming/tapping to help loosen chest congestion – she actually got Mom up on her feet and we went for a very short walk down the corridor with the hospital-provided walker. Sitting up in bed after, Mom was tired but her eyes looked bright and she seemed really herself for the first time in almost two days. I sat on the edge of her bed and held her hand. She smiled at me and said “I love you.”

And this is why she needed to move here, why I needed her to live close to me. If she was hospitalized back in Arizona, I’d be worrying constantly, helpless to do anything but call. Because she’s right here, in a hospital five miles from my apartment, I can run back to her place and bring her glasses (which we forgot when we left for the ER) and a book and some crossword puzzles. I can see for myself how much she’s improving. I can just BE THERE. And I need that every bit as much as she does.