Last Sunday, May 22, mom fell again. This time, despite my attempts to avoid it, she was hospitalized. They ran the usual battery of tests. Not surprisingly, mom had another urinary tract infection. What was surprising is that it occurred less than a week after she finished the antibiotic for the last UTI. And then we got the big news: mom had fractured her hip and jaw. It’s quite possible this happened in the last fall, but they missed it. In fact, the x-ray report said as much.
When she fell last time and the nurse thought she may have fractured her hip, I pondered then what we would do if mom was faced with having surgery. Given the progression of her dementia, I didn’t think she’d do well with surgery, anesthesia, or rehab. Given her co-morbidities (dementia, diabetes, and deep vein thrombosis), I wondered whether she’d be a candidate for surgery. The last time she fell, we didn’t have to make that decision. As it turns out, we wouldn’t have to make that decision this time, either.
Mom’s hip fracture was non-displaced so the orthopedic doctor said surgery was not indicated at this time. He said he’d put her on partial toe-touch weight-bearing (TTWB) for six weeks and then see her in his office for repeat x-rays and examination. I explained to the ortho doctor’s physicians’ assistant (PA) that we could not explain to mom what TTWB meant or how to do it. They switched her to non-weight-bearing for six weeks. I then asked if we could do a mobile x-ray rather than having her come in. The PA insisted he needed to see her. As for the fractured mandible, it was only minimally displaced and did not seem to be bothering mom. So no surgery or treatment was indicated for it, either.
The first couple of days after mom was admitted, she spoke little. I stayed in Austin, but kept in close contact by phone. The nurses would hold the phone up to mom’s ear, and I would talk to her. Once or twice she would answer “yes” or “no.” By day three or four, the nurses and my sister were reporting that mom wasn’t talking at all. But she was eating, always a hopeful sign.
On Tuesday, my sister informed me that she would be leaving Friday to go to Galveston for the Memorial Weekend.
After discussions with the nursing staff at her assisted living (AL), as well as the PA for mom’s geriatric physician, we decided it was time for mom to be evaluated by hospice. With the hip fracture and mom becoming increasingly non-verbal, the consensus was mom would almost certainly be accepted. I finally had the opening I’d been waiting for to have the hospice discussion with my sister. After much texting and a few calls, my sister agreed with the hospice evaluation.
Mom’s AL worked with several different hospice facilities. The nurse they liked the best said she didn’t have the time to give my mom the attention she needed with her current case load. I then selected a hospice provider that had been doing mom’s home health, thinking the transition would be easier that way. The evaluating nurse went to the hospital, looked at mom’s chart, talked to mom, and called me after the visit.
“Your mom is ineligible for hospice. She is not terminal.”
Despite the fact that the hospital nurses and my sister said mom was non-verbal, this nurse insisted she’d had a conversation with my mother. Rather than talking with her primary doctor who’d been seeing her for the past two years and talking with the nursing staff at AL, where she’d been living for the past three years, she made the decision based only on mom’s hospital chart. So, mom was deemed not a candidate for hospice at this time. A decision that surprised her primary doctor, who’d written the orders for the evaluation, as well as the nurses at her AL and the nurses at the hospital where she currently was admitted.
The hospital wanted her out as there was nothing more that needed doing. The AL couldn’t take her back due to the fractures and her inability to transfer. The hospital, I am certain in an attempt to buy us some time, said she needed five more days of IV antibiotics, and so would write orders to send her to skilled nursing. If mom did not improve within those five days, they suggested we get a second hospice evaluation. That was the plan as of Thursday. Meanwhile, I’d made several calls to the AL nursing staff, as well as mom’s primary care PA. The PA said she was going to re-review mom’s chart with hospice-care criteria in mind. The AL nurse said she was going to call a different hospice with whom they have worked, and discuss mom with them.
Friday morning I got a call from another hospice service. They talked with me about mom and her history, and said they’d like to meet with us. I had planned to drive to Houston Friday afternoon, but another round of severe storms was rolling through, so I delayed my trip until Saturday morning. I planned to meet with the hospice representative at noon in mom’s hospital room.
Since mom’s house was now empty in the wake of the estate sale, I packed my car with things I’d need to stay the weekend. I bought an air mattress, a coffee maker, and a soft furry bunny at Target. I packed towels and sheets and coffee. I filled a cooler with Greek yogurt and blueberries. I arranged for the pet sitter to take care of the kitties (now, four) and give Sadie her subcutaneous fluids. Saturday morning, I headed to Houston, unsure of what lie ahead.
I arrived at the hospital thirty minutes before the scheduled meeting. Mom was asleep. She didn’t awaken when I greeted her, or when I kissed her, or when I stroked her cheek. The nurse told me mom had eaten about twenty percent of her breakfast, and they’d bring lunch soon and I could try again. I gave mom her bunny, “a bunny for my honey bunny,” I told her. She didn’t awaken until the caregivers came in to change her. She seemed to register my presence, but the bunny made no impression. Now that she was awake, when I gave her kisses and stroked her cheek, she smiled. Her skin was so soft. Her smile beautific.
The hospice representative arrived on schedule and we sat in the window seat of mom’s hospital room and talked about their services and whether mom qualified. The representative thought she did but she would call her nurse to be certain, and if there was any question, the nurse would come and meet with mom before making the decision. She too seemed perplexed that mom was deemed to not qualify by the prior hospice provider. The hospice representative left the room to make calls and review mom’s chart. They brought mom lunch and I fed her. She had a few bites of mashed potatoes, and a few bites of turkey. I mashed up the turkey with a fork to make it easier to chew, imagining I was the mama bird and she was the baby bird. I opted not to go full-on mama bird, using a fork to mash it rather than pre-chewing it for her. Mom also ate some fruit, the grapes being the easiest to chew.
Mid-fruit-cup, the hospice representative returned and told me mom qualified and they’d accepted her. I filled out the paperwork. I filled out the out-of-hospital DNR (do not resuscitate). Because hospice had accepted mom, her AL would take her back. She wouldn’t have to go to skilled nursing and undergo yet another disorienting move. I updated my sister by text. I got a one-word response: “OK.” Within thirty minutes of the hospice representative leaving, the EMTs showed up with their gurney to transport mom back to her AL apartment and her cat. By early Saturday afternoon she was settled back into familiar surroundings, with familiar caregivers, the cat standing guard.
Mom seemed pleased to be back. She smiled more. She followed me around the room with her eyes. She stared at me and smiled. I brought the cat to her bed and helped her stroke him. She seemed more interested in looking at me than the cat. I took that as a sign that I am indeed her favorite child, even over the cat. The highlight of the afternoon was giving mom kisses and stroking her cheek, and watching her smile and her eyes light up as I did so.
Late in the afternoon, the hospice nurse came by and we went through the initial plan of care. More papers to sign. More information to absorb. The nurse would come by one to two times a week to check her vitals and give her a full examination. An aide would come by three times a week to bathe mom, wash her hair, take care of her nails, put lotion on her, change her sheets (once a week minimum), and massage her. We were assigned a social worker and a chaplain. Hospice ordered a better bed for mom with an air mattress, a bedside table, and an oxygen machine, should that become necessary. All of those items arrived within hours. The EMTs came back to move her from her old bed to her new bed.
Despite all hospice does, and despite the excellent care mom gets at AL, she needed more care than they would be giving. While Medicare pays 100 percent of hospice, the benefit does not include continuous care. Nor does the AL. I would need to hire an aide at mom’s cost to watch over her and assist in her care. The hospice social worker provided referrals and I managed to get care in place, despite it being Memorial Weekend. I made sure they knew about the cat, and that the aide would be expected to take over cat care.
Everything was done. Mom was sleeping. I’d decided to stay in mom’s AL apartment that night, rather than going to her empty house. I went out to the car and got my bags and the coffee maker. I set up the new coffee maker and made a pot. I ate some yogurt and blueberries. I brushed the cat, who was starved for attention having been alone for a week. We settled in on the love seat to watch a Harry Potter marathon on television.
Mom slept well and snored like a lumberjack for most of the night. The caregivers came in every two hours to check on her and change her if she was wet. I slept minutes at a time. Mostly I was awake, watching Harry and his friends defeat He Who Must Not Be Named.
In the morning, my sister began accosting me with text messages, second-guessing everything I’d done.
“Wouldn’t mom be better off at a nursing home where she can get twenty-four hour care?”
“I am not sending mom to a nursing home,” I wrote back. “She will do better in familiar surroundings with her cat.”
Then she called me. She put me on speaker. Her daughter and her husband were in the room. Suddenly I was being ganged up on by my sister’s family. And I was a force of one; no daughter or husband to meet them in numbers.
“Why didn’t grandma go to the nursing home for antibiotics?” my niece demanded. “The plan was one thing, and then suddenly we’re being told it’s entirely different. We all have a stake in this. We all care about grandma.”
“Stop yelling at me.”
Which is as far as I let my temper go. What I wanted to say was, “Fuck every one of you. And if you were so fucking concerned, you’d be here helping me make these plans, instead of at the beach for Memorial Weekend.” Instead, I patiently explained that mom was getting the care she needs, hospice had a plan of care in place, and that, coupled with the private aide and AL caregivers, would be a much higher level of care than she would get at the nursing home. I reminded them of the care my father got in the nursing home, and how heartbreaking that whole experience was. I told them mom would be better off in familiar surroundings with her cat.
“I don’t care about the damn cat,” my sister said. “I want her to get the level of care she needs.”
“She is getting the level of care she needs,” I said. “I was here all night. She slept. They checked on her every two hours. They changed her. The private aide will be here this afternoon. I’ll meet with her and give her instructions. She will stay until 7:00. Starting tomorrow, we will have a private aide from 7:00 a.m. to 7:00 p.m.”
My niece jumped in: “How can she be left alone? What if she decides to try to walk again and she falls again? That would be a disaster.”
“If you saw her you would not be worried about that. She’s bedridden. She’s not going to try to walk. She’s too weak. She can’t even feed herself. She’s not talking. She’s sleeping all day and all night except when we wake her to feed her or change her. I approved bed rails so she can’t fall out of bed. If she starts moving, they’ll lower the bed and put mats on the floor beside the bed.”
My sister’s turn: “If she was at the nursing home, we wouldn’t have to pay for her apartment or the private caregiver. This is expensive.”
“Mom has money,” I told her. “She can afford to do this for quite a while. She needs familiar surroundings and faces. She needs familiar caregivers. When the night aides came in last night, she smiled at them. They talked to her. You could tell she knew them. And you could tell they care about her.”
“This is a lot of money.”
Finally, I heard my brother-in-law say, “It’s not about money.”
“Well, what if she runs out of money?” my sister said.
“She can afford this for a while,” I said. “I’ll run some projections next week when I’m back at the office.”
“Well, you should go out and look at nursing homes while you’re there and find one to move her to when the time comes.”
“No, I’m not going to do that. I have enough to do right now. Not to mention, I want to sit with mom. I want to spend time with her.”
I didn’t bother to tell her Medicare would pay for only 100 days of skilled nursing, and after that we would be on self-pay and nursing home costs are more expensive than AL costs. And with the shitty care at nursing homes, we’d likely want to pay for a private aide, just like I’d set up at AL. My sister continued to bombard me with orders, including making arrangements to move mom into a smaller, less expensive AL apartment since we now had a hospital bed in the television room. She insisted we no longer need “all that space.” I told her I’d consider that at a later time. Right now, I was focused on getting mom settled in and comfortable in the home she’s lived in for the past three years.
Meanwhile, my mother was sleeping in the next room, blissfully unaware of what an asshole my sister is. It has become more evident with each passing day why my mom made me her decision-maker. And by God, I am going to make the decisions no matter how many members of her family gang up on me. Luckily, my niece and brother-in-law both seemed to come around by the end of the call. They seemed to understand that familiarity of surroundings and comfort are key, and that even though my sister doesn’t give a damn about the cat, my mother does. Mom made herself clear on Mother’s Day that she wants to be with her cat and she wants to eat pie. I had now reunited mom with her cat. After the private aide arrived, I went to the bakery and got mom a big slice of chocolate cream pie.
And now, having made it through the transition to this new phase, we settle in and wait for what’s next. The hospice certification means they believe mom will not be with us for more than six months. My sense is, they are correct. Especially if mom continues to be non-verbal and if she is unable to begin ambulating after her six weeks of healing of the hip fracture. I don’t think she will walk again. I don’t think she’ll be with us long enough to run out of money. If she does, I’ll pay for her care. I’ll pay to keep her home at assisted living with her damn cat.
Mom petting her damn cat