Holding the Net
Page 17
Just a few days after I left, Barbara took Mom to Dr. B.’s office for the follow-up appointment about the pacemaker. A medical technician did a chest X-ray to make sure the leads were positioned correctly, and an EKG to check overall heart function. Then Mom and Barbara met with a representative from the pacemaker company. She conducted a computer test to make sure the pacemaker was performing as expected, and gave Barbara the “other half” of the pace-maker—a device the size of a cell phone. This receiver was designed to sit next to Mom’s bed and pick up signals from the implanted device. If a problem was detected, an email would go out to the doctor and to the pacemaker company’s monitoring center.
“She wasn’t scheduled to see Dr. B.,” Barbara told me when we talked later that evening, “but I asked to meet him. He was very nice, but it was clear Mom did not remember him.”
“Oh, well, he probably didn’t remember her, either.” Dr. B. would never get a fair shake from me. He was too wrapped up with my remorse about the pacemaker.
Barbara said she had planned to take Mom out for an early dinner, but had changed her mind, because Mom seemed so tired and confused.
“She kept asking me if I had her purse, if I had checked the mail, paid the bills. Then she apologized for being all at sixes and sevens, and asked where we were going. She asked, ‘Where is home?’”
“Was she like that at the doctor’s office?” I asked. “Actually, she was pretty charming, like she always is with doctors.”
“Maybe she felt confused because there was so much information. Complex discussions really upset her, and then she feels bad about it.”
“All I know is, from the time I picked her up around 2:30 to the time I took her back, she really seemed to decline. I don’t know if it was exhaustion, or what.”
“It sounds like sundowning—it happens with Alzheimer’s patients. They often get agitated or confused toward evening, as it gets dark outside; but Mom doesn’t have Alzheimer’s.” I could feel my forehead wrinkling as I tried to puzzle out this new development.
“Anyway, I took her back to Beechwood and got her settled with one of her shows. Then I asked the nurse to let her have dinner in her room.”
“Look, it always takes her a long time to bounce back from any trauma, and this was a big one. She probably just needs some time,” I said.
“I know, but I don’t have much optimism right now,” Barbara replied. It was not what I wanted to hear.
Mom’s confusion, combined with her minimal gain in strength from the physical therapy, turned out to be a recipe for danger. Now she could stand up on her own, but she didn’t remember that she couldn’t walk without help. She’d get up from her chair or bed to go the bathroom, and promptly half-fall, half-sit on the ground. Barbara talked to Geneva, the night nurse at Beechwood, to see if Mom was using the call button and not getting a response.
“Geneva said Mom thinks she can get around by herself. Although one time Mom claimed to have pushed the call button, and it turned out she was pushing the TV remote control,” Barbara told me. “They’re going to put an alarm on her bed and her wheelchair. It makes a terrible noise if she gets up, so it reminds her to sit down, and also alerts the staff that she needs help.”
“Ugh. It sounds like Pavlov’s dogs. I guess if it keeps her from falling, I’m okay with it,” I said. “I feel like this is our life now—finding ways to keep Mom upright.”
“The good news is that Geneva and the other nurses think Mom is an absolute dear,” Barbara added.
We agreed that Mom would need twenty-four-hour care once she left Beechwood, and we discussed the options: let her go back to McCarthy Court and get round-the-clock caregivers, or convince her to move into assisted living at Homeplace.
Barbara told me she had recently reminded Mom about Homeplace.
“She quickly protested that she’d have to live in only one room,” Barbara said. “Even with her raisin brain, she remembers that!”
“I really hate this,” I said. “Maybe it will come down to the rehab people: Diane at McCarthy, and the nurse at Homeplace. Maybe they’ll take the decision out of our hands. Plus, I would think Dr. S. will weigh in when the times comes.”
“The thing is, I’m not even sure what Mom can afford.”
“I’ll work on that,” I said. “I got some of the costs for private care-givers when I was there, and I have info for Seniors Choosing. I’ll call Homeplace and get a list of prices, then do a comparison,” I said. My left brain perked up at having a concrete task that would be helpful.
When I talked to Kathy, the director at Homeplace, she reminded me that “assisted living” isn’t, in fact, very assisted at all. Though there are staff on duty all the time, and three meals a day are served in the dining room, residents have to get themselves dressed and down to the dining room on their own.
“You can buy ‘extra-care points’ if your Mom needs help with dressing or medication, but if she needs twenty-four-hour care, you would have to pay for that privately,” Kathy explained.
I built an Excel spreadsheet comparing the cost of McCarthy Court, a double room at Homeplace, and a single room at Homeplace, plus various add-ons (Dena, the additional “care points” available at Homeplace, more help from Seniors Choosing, and private caregivers) to give Mom round-the-clock coverage. Factoring in the additional caregivers took her monthly costs from her current level of about $3000 per month to as much as $15,000 per month in a private room at Homeplace. Since the base price at McCarthy was much less than Homeplace, it made financial sense for Mom to stay in her apartment if she needed total care.
Barbara sent daily—and often twice daily—updates:
Mom walked the length of the hallway from rehab to the nurses’ station and back, but Kristin (the therapist) steered her and supported her the whole way with the big belt, and she stopped two times to rest. They want her to stay three more weeks!
Even when Mom is confused about her own situation, she still knows who the president is and who I am; it just seems to come and go.
I saw Mom right after lunch. I borrowed a walker from rehab, and she walked almost as well as she used to, which means slowly and erratically—but anyway, better than yesterday. She asked me when she could get out.
Dena called me this morning to report on her visit with Mom yesterday afternoon. Mom was more “down”—she really fades in the late after-noon/early evening.
I talked to one of the therapists who fills in on Saturday. She didn’t know Mom, but pulled her chart and told me her “mental scores” are 50% to 60%. I don’t know what that means, but they want her to be around 80%.
All the references to Mom’s mental state unnerved me. I Googled “stages of dementia” and sent one of the many lists I found to Barbara.
“I’m trying to get used to the idea that Mom is really getting worse mentally,” I wrote.
Barbara sent back the list with her comments typed in italics. Her assessment was Stage 1: Early difficulties. That didn’t sound so bad to me. I wasn’t ready to think about the fact that dementia is almost always progressive. And I wasn’t ready to think about the new option for Mom’s care that presented itself a few days later.
“I saw Rose today. She’s the rehab therapist who also works weekends at Homeplace,” Barbara said the next time we were on the phone. “She suggested we consider Seasons, the memory unit at Homeplace, for Mom.”
“No way,” I said. “That’s for Alzheimer’s patients. Mom would be having dinner with a bunch of zombies. Anyway, it’s just over a month since her fall. She’ll bounce back. You’ll see.”
“Mel, she’s already had almost three weeks of intense therapy. I think we have to be realistic.”
What was she saying? Mom was still “with it” in so many ways. But then again, she did need the alarm on her bed. My cheeks were tingling, and my eyes felt hot.
“Mel?” Barbara said. “Mel?”
“Yes, I’m here.”
“Look, let me find out more about
it. I’m going over there to see what’s available at Homeplace, and I’ll get more information about Seasons, too.”
“Okay. I guess that makes sense. Get some cost info, and I’ll add it to the spreadsheet.” I must have sounded as defeated as I felt.
“I’m sorry,” Barbara said. “The thing is, I can see how much she’s declined. She might get better, but she might not.”
“I know,” I said. “I just don’t want to know.”
There are four main stages of dementia. It should be noted that the stages of dementia can progress at different rates, and carers should not see initial symptoms as predictors of end stage incapacity.
Stage 1 - Early Difficulties
May be characterized by the following symptoms:
Forgetfulness - YES
Reduction of attention span - YES
Lack of spontaneity - SOMETIMES
Lack of initiative - YES
Disorientation of time and place - SOMETIMES
Depression and fear - NOT MUCH
Anxiety or suspiciousness about possessions, or about the behavior of other people - NO
Stage 2 - Emergence of Significant Difficulties
May be characterized by the following symptoms:
Problems recognizing close family and friends - NO
Difficulties dealing with money – SHE JUST DOESN’T. WE DO IT.
Restlessness and agitation - NO
Repetitiveness in conversation and actions – YES, BUT MAY BE DUE TO FORGETFULNESS
Increased disorientation and forgetfulness - SOME
Stage 3 - Confirmation of Diagnosis
NONE OF THESE, EXCEPT ONE?
May be characterized by the following symptoms:
Uncharacteristic mood swings and outbursts Speech impediments
Wandering around home and away from home
Impaired judgment – YES, SOMETIMES
Increased disorientation of time and place
Stage 4 - Dependency and Incapacity
NONE OF THESE, EXCEPT SHE DOES NEED ASSISTANCE WITH DAILY LIVING BECAUSE OF PHYSICAL LIMITATIONS
Assistance with all the activities of daily living (washing, dressing, feeding)
The person may no longer talk
The person may no longer recognize family members
Inability to make decisions
Coexistence of other medical and physical conditions
This is the list of stages of dementia I sent to Barbara, with her comments added in italicized capital letters. This is just one of many similar staging systems.
Over the next week, Seasons rose to first place on the list of possibilities for Mom’s next home. The ten Seasons rooms, all the same size as the “regular” assisted-living rooms in Homeplace, were arrayed on one hall that was separated from the rest of the facility by a locked door. Entry to Seasons was controlled by a big red push button on the wall. Exit from the locked section required keying a code into a number pad. Though the Seasons residents had their own shared living room and dining room, they could participate in all the Homeplace activities, including field trips. Okay, she won’t be too isolated, I thought.
A Seasons room cost more than a Homeplace room, and for good reason. Like many memory care units, it came with a lot more services. What made it particularly attractive was the twenty-four-hour nursing station and the certified nursing assistants. Mom would have help dressing and taking her medications. The staff would check on her frequently, even at night, so while we would still want to have Dena visit, we might not need to hire any other additional caregivers. Barbara met with Kathy, the director of Homeplace and Seasons, toured both sections, and talked to some of the staff and residents. The next time she and I were on the phone, she sounded almost giddy.
“I’m telling you, Seasons was a lot more lively than McCarthy. I guess it’s because the residents don’t tend to stay in their rooms. Anyway, Kathy showed me a single room that’s available now. I think it could be perfect,” Barbara cooed.
“Can Mom roam over to Homeplace by herself, if she can remember the code?”
“I don’t know. Probably not, but the Seasons residents go over there for activities every day.”
“What about the people? Are they fairly sharp, like Mom? I don’t want her to feel like that guy in One Flew Over the Cuckoo’s Nest.”
“Mel, it’s not an insane asylum. Anyway, I walked around, and the residents seem a lot like Mom, and they looked good. I mean, they were well-groomed, not unkempt. One of them is a former French teacher, and sang Happy Birthday to one of the aides in French. Kathy said the woman is often very sharp, except, of course, when she’s not.”
“Sounds like Mom, I guess. What’s our next step?”
“I put Mom’s name on the list for both Seasons and regular Homeplace. There’s nothing available at Homeplace right now, which is another reason I like the Seasons option. Kathy will call me if anyone else expresses an interest in the single room in Seasons.”
I hung up and checked the clock. Not quite 5:00, but I was ready for a glass of wine. I poured some Chardonnay, grabbed a sweater, and headed for the back porch. September was my favorite month on Cape Cod. The cool mornings warmed up quickly, and the afternoon sun reflected bright greens and golds off the trees across our backyard pond. I stared at those trees, knowing I had just rained on Barbara’s parade. She had said Seasons was perfect, and I tried my best to shoot holes in the plan. She deserved better. In fact, if I were honest, she probably knew better—what was better for Mom. What were my motives? Was I trying to protect Mom? From what? From dementia? From being old? Or was I trying to protect myself from facing the magnitude of Mom’s decline?
Here I was, a recognized expert in quality of life at the end of life, and a daughter who had vowed to give her mother the best life possible until she died. So, what was quality of life for Mom? Above all, she prized her independence. She’d said it over and over again: “I just don’t want to be a burden.” Anything that made her less of a burden on Barbara was good. At Seasons, Mom could have her own space with 24-hour care nearby, but no one would be “living with her.” And at Seasons, she’d be encouraged to participate in activities every day, whereas at McCarthy, she’d be left alone in her apartment.
I felt like it was too soon for Mom to go to Seasons. She still had most of her faculties. On the other hand, I could see how current circumstances made this a good time for the move. So often, with older parents, it seems like it’s too soon for the next step—like you have a little more time—until suddenly, it’s too late. Maybe, for once, we would beat the clock.
I went to my desk and wrote an email to Barbara, telling her that Seasons was probably a good idea.
It reminds me of when Mom would buy our shoes or clothes a little larger, so we could wear them for a longer time. I feel like Mom has one more move in her, but only one, so maybe we should get her something she can grow into. This is really hard.
It fell to Barbara to broach the subject of Homeplace—actually, Seasons—with Mom. She told me she watched for openings, then snuck up on the topic a little at a time. When Mom mentioned, as she did almost every day, how much she liked getting three meals a day at Beechwood, Barbara said she could still have all three meals if she moved to Seasons. Mom didn’t jump at it, but said she knew she might “have to make some changes.” That was serious progress.
The next day, Mom said something about how much she appreciated the extra help she was getting at Beechwood, and from Barbara and Dena. Barbara took up that thread, explaining to Mom that the rehab therapists felt she would need to have a lot more care when she returned home, probably someone living with her full-time.
“You mean someone like Dena?” Mom asked.
“Yes, but it wouldn’t be Dena. Of course, if you moved to Seasons, you would have a lot more privacy, because you would have your own room,” Barbara said. I marveled at how she emphasized what Mom would get at Seasons, rather than what she might be giving up at McCarthy.
“No, but she’s not really protesting anymore. The thing is, we need to make a decision. It’s almost the end of September, and if she moves out before the end of the month, she can stop paying for the McCarthy apartment.”
“You think we can just take her straight to Seasons from Beechwood?”
“Truly, I think that would be best. I think it might help her adjust to Seasons more quickly. She’s been out of her apartment for six weeks now, and she’s asked me more than once where she lives.”
“What do you say when she asks?”
“I say that for now she is staying at Beechwood. I avoid naming any place as ‘home.’”
“I am promoting you to Senior Saint,” I proclaimed. “I wouldn’t know what to say. It makes me want to cry.”
Barbara and I agreed that we needed to get all the right people on board—the rehab staff, Diane at McCarthy, Kathy at Homeplace/Seasons—and then present the move to Seasons as “what everyone agrees is best.” It turned out they had already talked, and were way ahead of us, worried that we would need to be convinced.
“I’m so relieved,” Diane said. “Kathy and I really feel your Mom will do well at Seasons—much better than coming back to McCarthy.”
I was finally beginning to see the pattern. After an illness or injury, Mom would lose ground both mentally and physically. Over time, she would regain some, but not all, of the lost territory. At each new and lower plateau, the space around her contracted, and Barbara and I would weed out what no longer fit.
Barbara signed all the papers, wrote the check for the deposit, and measured the room at Seasons. She sent me a proposed layout for some of Mom’s furniture, and included a new single bed—the double bed we had bought for McCarthy Court was now too big.
I stared at Mom’s downsized life. It seemed small and eminently manageable. It contained exactly what she would need to feel at home—her bed table and lamp; her bureau with the little gold tray on top that held her perfume; her two favorite living room chairs and the small round coffee table; the entertainment console where we would place her new flat screen TV; and her beloved glass étagère. I still had the picture showing exactly how to arrange the items on each shelf.