When we are touched by something it’s as
if we’re being brushed by an angel’s wings.
— Rita Dove
On Kate’s last morning in Idaho, after spending three and a half days with Marlene inhabiting her former bedroom, she came into my room, wrapped her arms around me and said, “Do you know you’re a saint?” She also said, “The house smells like an old person.”
“I’m old,” I said, having just celebrated my 64th birthday the week before.
“No,” she insisted. “You don’t smell like an old person.” I realized that the house did smell differently: it reeked of unwashed hair, perfume and urine from the pads Marlene was wrapping up and placing in the bedroom waste basket. I was in the fog of what I had committed to, so didn’t notice the odor of my new housemate until my daughter pointed it out.
It has been nearly eight wild weeks since Marlene moved in and I have had to face the vagaries of Alzheimer’s care. The first time I heard her laugh — after nine days of rage, I thought, “We’re going to be okay.” I have discovered that she loves romantic comedies. I am slowly going broke renting movies on Amazon because we’ve exhausted most of the free movies worth watching on Prime and Netflix. If we’re too tired to sit through a movie, we laugh our way through Big Bang Theory reruns, except on Tuesday nights when she watches the CBS lineup of NCIS, Bull and NCIS New Orleans. It’s a life, though certainly not the one I was living prior to May 15th.
I haven’t owned a toaster in over two decades. On the rare occasion I make toast, I make it in the oven, saving myself from having yet another seldom-used appliance on the kitchen counter. After showing Marlene how to make toast in the oven every day for a week, I came out to the smell of burnt toast only to discover she had attempted to make toast over an open flame on top of the stove. I bought a toaster that afternoon, removing the appliances that I do use to make room for the one I will likely never use.
I have a 25-year old clunky Sony in my bedroom that is far too heavy for me to move. Only some of the buttons on the remote work. It does not get CBS, ABC, or NBC without snow and static that escalates after you’ve watched any of those channels for longer than 15 minutes until there is nothing but static and snow. After the temperature in Idaho decided it really was summer, the outside temps have vacillated between 85 and 103 degrees. I have been keeping the house at a “balmy” 74-75 degrees, but Marlene still sits here like Nanook of the North complaining about the cold, so I bought her a brand new smart TV for her room so she can cocoon herself in there and crank up the space heater while the temperatures (and my irritation) soar.
Regardless of the temperature, Marlene bundles up in layers, always carrying her fuzzy black hat. If we are out in the heat, she starts peeling off layers of clothes and is exasperated with me, as if I am Mother Nature pushing up the thermostat out of some fiendish spite. Once we get back to the house, she complains that she didn’t know it would be so cold here (as in Idaho–not my house) and re-bundles herself. If a restaurant is too cold it is somehow my fault. If the car is too hot–my fault. Like Goldilocks, she is rarely “just right” and I am pretty much always wrong.
Toward the end of May, we put in a change of address at the bank so her statements would arrive here. It was after the closing date, so I had explained that the current statement would go to California, but the June statement would come to Idaho. The statement would have been here by the 26th of the month, but she was anxious because the last statement she had in-hand was from April. Reminding Marlene that she would have a new statement within five days did nothing to appease her.
“Would you like to go to the bank and get a printout?” I finally asked in a spirit of détente.
“Yes.” So get a printout we did. The next morning she came into my office very upset. “The doctor took out $4600 from my account. Why did it cost so much?”
I looked at the bank printout. “Those two charges aren’t from the doctor, Marlene. You had one bill for $504 and another for a little over $200.” I studied the bank notation, but couldn’t figure out the meaning of the alphabet soup.
“See: ‘DR’,” she pointed underneath the transactions. “Doctor.”
“That doesn’t stand for doctor. It’s some kind of bank notation,” I explained.
“I know what DR stands for,” she said indignantly. “It’s stood for doctor my entire life!”
I explained that they were NOT doctors bills, that we did not go to any doctors on June 1st. As I looked further, I realized the two transactions had been made within four minutes of one another. Marlene’s son is on her account. When I suggested that he had withdrawn the money, she refused to believe he would do such a thing. I phoned the bank and they explained that DR stood for “direct withdrawal.” By that afternoon it was sinking in that her son had likely taken the money. She was furious.
We went back to the bank only to discover that the only way to close the joint account (that only her money was feeding) was if she and Eddie were together at the same branch and both consented. The banker suggested she could, however, transfer the money to a new account as the sole account holder. So that is just what she did. By the time we got back home, she was back to disbelief that her son would have taken money without talking to her. I phoned the bank again and they looked up the specific transactions. It was her son. She was livid, stating, “I am done! I never want to see or talk with him again!”
To ensure that her son hadn’t phoned her to discuss the withdrawal and she had simply forgotten, I had pulled her cell phone records and my home phone records. There was not a SINGLE phone call on her cell from her son in the 6-1/2 weeks she had been living with me. She had not phoned him. From the home phone, there was the initial message I left to discuss the biopsy results and how to best handle getting the MOHS procedure done (her insurance was still in California). He phoned me back after 11:00 pm the next day and on one other occasion a couple of weeks later — again, to speak with me, mentioning they had “taken some money to pay for storage.” I did hand the phone to Marlene after saying, “Why don’t you talk to your mom?” They spoke about a minute and a half–that was the entirety of their communication since she had moved here.
I was on a mission to protect her even more than I’ve already been doing. Her son and daughter-in-law were in Cabo on vacation (presumably, Marlene paid for the trip). By that Friday I had changed the direct deposit information to the new account for Social Security and her pension. I had also “divined” the rental company that was leasing her condo in Vegas from a Zillow listing (the info on Zillow wasn’t accurate, but it led me to the right rental agent after a dozen calls) and ensured that the rental monies were also deposited to the new account. I changed all of her automatic payments to the new account.
There was no information on who she paid the HOA fees to, and all I had to go by was a board member named Ruby. As we looked at the building on Zillow, she said, “There’s my condo, and Ruby lives back there,” pointing on the monitor as if that was going to reveal the necessary information. Apparently, I am part Columbo, because within a half hour of sleuthing online, I had found an old listing of board members and discovered Ruby’s last name. I then went on to search until I found various phone numbers and addresses. I cross-checked addresses with Google maps. Miraculously, the first number I phoned was correct. Ruby was able to give me the number of the management company that had taken over the HOA from her, and I was able to set up payment to the correct entity. By Friday afternoon, I had also spoken to an attorney and had meetings set up with him and an insurance agent to transfer her healthcare to Idaho.
I spent three full days that week working on nothing but Marlene’s care and well-being. I then took off the following Monday for the meeting with the attorney. I had to wait in the car for nearly an hour and a half while he spoke with her privately. He was content with her competency. She was giving me power of attorney and leaving everything to her son Greg — whom she has not heard from in a year. I have been trying to reach him since she got here, to no avail.
After we left the attorney, I took her to lunch. She has been wanting to get her nails done, so I took her for a manicure. It was a long day. We got home about 6:30 pm and she said, “What’s on the agenda for tomorrow?’
When I told her we were seeing the insurance agent, she adamantly blurted, “I don’t WANT insurance.”
“Then you can’t live with me.”
“Fine,” she said, “I’ll go back to California.’
This began a two-hour convoluted conversation wherein she reiterated that she didn’t need insurance because she wasn’t going to take any pills and I reiterated that insurance has nothing to do with pills — unless a doctor might prescribe them. We were equally frustrated with one another. She had realized that she didn’t want to go back to California, but kept insisting she could move back into her condo in Vegas. I kept reminding her that the condo was rented until the end of September AND that she couldn’t live alone.
“Why not? I lived alone before.”
“Because you don’t even know what day it is,” I explained. “You won’t know how or when to pay your bills, or take out the trash. You can’t drive anymore. You can’t get groceries or go to a doctor”
“I’ll figure it out,” said the woman who made toast over an open fire and can’t remember what year it is, let alone anything else. I finally wore her down and she said shed’d meet with the insurance man. The next morning I told her we needed to leave at 12:30.
“For what?” she asked. Oy.
After two hours with the insurance man, as it came time to sign the application, she pronounced, “I don’t want insurance. I don’t want to take pills.” You can fill in the next few minutes of the round robin, can’t you?
Bottom line: she has Medicare Advantage. I made the appointment for the MOHS procedure to have the basal cell carcinomas on her forehead removed. The uninsured cost of $2500-$5000 was reduced to a $35 co-pay. I also made an appointment with a primary care physician as her blood pressure has been high. Chances are, of course, she will need pills for that. Wish me luck.
Later that night she wanted to go over her financial papers (again) and her anger toward her son’s $4600 withdrawal was renewed. “He’s dead to me. I never want to see or talk with him again.”
The following evening, her son started calling: first my phone and then his mom’s cell. He started by saying that they were back from Cabo and wanted to check-in on how his mom was doing. I figured they got back, went to cover some trip overages and discovered the money was “gone” and had developed a sudden interest in his mom’s welfare. The phone calls escalated with our respective phones ringing every few minutes over the next couple of hours. He ended the night with an email expressing his “concern” for his mother. There was no mention of the money. Marlene was resolute in not wanting to speak with him.
The next morning, we were sitting in my office chatting when her son phoned again. I could see his name on my caller ID. “I’ll talk to him,” she said. At first, it was as if nothing was amiss, then the conversation erupted until he asked to speak with me. I served as her advocate for the next 45 minutes. He kept insisting that he had been paying for her storage and had a “right” to the money. I kept insisting that he should have “squared” the account with her while she was still living with him. His wife was twirping in the background because she usually tells him what to say. I told him I KNEW he hadn’t phoned her because I pulled the phone records. His wife had to confirm that you can see all calls made and received on your phone records. For once, Marlene had her own ally and wasn’t being double-teamed. Yesterday I noticed he has taken another $244 in the past few days from the money that was left in the old account to cover the last few outstanding checks. It is clear to me where his concerns lie.
Later that day she burst out, “Let’s go paint!” I have no idea what placed that bee in her bonnet (or fuzzy black hat).
“They have a place where you can paint and have wine,” I said brightly, thinking we would have an activity we could do together out in the world.
“Let’s go do that,” she said merrily.
On Friday afternoon, I had no work, so told her we were going to go paint. She had no idea what I was talking about and was not excited. It cost $27 and change to discover that: a) she has lost her spatial sense (her small painting looked like chicken scratches), and b) that she could not follow the clear written directions on what she was supposed to do to create her floral masterpiece. As I worked on my painting, I asked her if she was enjoying herself. “Not really. I am happy going to the center and watching movies”
That evening I rented the first Harry Potter film for her to watch while I started an archaeological dig through my studio (I am desperate for a creative refuge). Afterward, she said, “Let’s go to breakfast tomorrow. Can we also go to the library so I can get Harry Potter?”
“Sure,” I said.
“Let’s go early,” she smiled.
The next morning I got up early, showered and knocked on her door. “Are you almost ready?” I asked.
“For what?” I could see the storm clouds forming in her face. It was going to be another dark day.
“”You said you wanted to go to breakfast and to the library to get Harry Potter.”
“I don’t remember that,” she answered in a sullen tone suggesting I was lying and about to force her to do yet another thing against her will. Earlier in the week she had also said she wanted to get a pedicure on Saturday. I told her we needed to get her flip-flops to change into afterward so she wouldn’t mess up the polish. She told me that she didn’t have any. “Yes, you do,” I said, three pairs staring at me from a shelf.
As we drove to the restaurant, she was even more sullen — as if I was taking her for a root canal instead of those stuffed crepes she is so fond of.
“Marlene, we don’t have to go anywhere if you don’t want to,” I said to break the tension.
“You want to go,” she said, staring straight ahead, as if she was doing me some huge favor.
“Marlene, you are the one who said you wanted to go to breakfast and to the library today.”
“It’s Saturday. I would rather do it during the week when it’s not so busy.” (This is a common refrain).
“I can’t take the time to take you to breakfast during the week, Marlene,” I explained (also a common refrain). ” I have to work. I am already taking off too much time taking care of you. We can only go out for breakfast and run errands on the weekend.”
“What do you do for work?” she said more as an accusation than a question.
This week she also stated: “I’m not all good, and you’re not all bad.” She also said that she thought I was going out with my friends while she was at the senior center having lunch, laughing, reading and attempting to play cards or bingo. I am actually working during those times, only made more difficult because I am traipsing her back and forth in an effort to keep her engaged. Sigh.
This past Wednesday, I knocked on her door to see if she was almost ready to leave for the dermatologist (another day off) to have the MOHS procedure.
“I’m not going,” she announced, curled into a bundle on her bed. “I’m cold.”
“Marlene, you cannot live with me if you don’t take care of yourself.”
“Fine. I’ll go back to California.”
“Fine. I’ll call Eddie and make travel arrangements,” I said, weary of the constant proclamations that she is going to run away from home.
I phoned her friend Terry instead. Terry spoke with her briefly and Marlene came into my office and said, “Fine. I’ll go.”
Once again, we drove in sullen silence, I finally said, “You know the reason I want you to do this is because I love and care about you, right?”
“Yes,” she said. I reached over and squeezed her hand.
In spite of the morning’s drama, we were only 15 minutes late. I made sure they brought her a blanket and I brought her hot tea and snacks since she had missed breakfast due to her shenanigans. The whole thing took about three hours and I was able to stay with her throughout. The aftermath was rough because the pain pills weren’t strong enough and she couldn’t fathom why her head was throbbing. She wouldn’t go to sleep, but was almost catatonic save for small whimpers and plaintively asking if I knew there was going to be pain. Later that night she started vomiting. The mix of worry, exhaustion and guilt settled between my shoulder blades. I almost wished I hadn’t forced her to have the procedure because she truly didn’t know why she was in so much agony.
Last Saturday, after Marlene had blown up at me over the fact that I didn’t know where she had put her financial papers, I phoned my daughter and said I just needed to speak with someone who liked me. As I regaled her with all the effort I’ve made to take care of Marlene and all the rebukes I’ve received, Kate said, “You’re not a saint, you’re an angel, Momma.” I told her that maybe I was a dark angel, at best. But then I looked it up — and I am certainly not creating the chaos — although I did throw down the welcome mat, hang curtains and clear out the closet, inviting the chaos into my home
I have been fighting the inclination to give up and return to serenity and peace, wrestling with the very real fact that she is NOT truly my obligation. She has two sons, a brother, a sister-in-law, a daughter-in-law and a granddaughter (albeit she is only 17). The cruel things Marlene says to me, the cold shoulder I’m shown for her own lapses, the constant battle of wills — all unwitting, to be sure — hurt nonetheless. She may not remember any of it, but my memory is just fine. Her behavior pokes at the vulnerabilities instilled by my mother’s rages when I was a little girl, even though my mom’s problems were self-inflicted and Marlene’s rages are out of her control. But then, I remind myself of what I would be sending her back to, and I take a deep breath and carry on. Not saintly, nor angelic, just a simple act of caring for someone who has lost the ability to care for herself.
The day may come that I have had enough, but that day is not this day. For now, I will keep whatever dark angels that loom in the recesses of my psyche at bay, relying on those better angels to see me through this crazy labyrinth of lost memories and rabid emotion.