life choices

COVID, Quarantine, and A New House

/ Lori McLeese / 10 Comments

She stood over the large grate in the bathroom, reveling in the warm air blowing on her legs. 

I was transported back more than 45 years ago. My parents were frugal. Or maybe it was the 70’s energy crisis and they were patriotic. Whatever the case, the heat rarely was on in our lofty, barnlike house. When we heard the rumble, indicating heat would soon blow through the ducts, my sister and I ran to the one vent we were aware of. Thinking back, there had to have been other vents. It was a huge house. But the only vent easily accessible was the one in the hallway. It was large, maybe a foot or two squared. And when we heard the heat come on, we ran to the vent and curled up next to it, laying on the floor, balled up as tightly as possible so the heat would blow over as much of our bodies as possible. 

Mom lives with me now. Over the holidays, she developed COVID and wasn’t able to quarantine on her own in the facility where she lived. She simply didn’t understand why she couldn’t leave her unit. Or be alone all day. Or why her caretaker (also in quarantine) couldn’t come to visit. Or how to turn the tv on. So, in a somewhat spur of the moment decision on day two of her quarantine, I moved her to my house, thinking we would quarantine together for 14 days or until neither of us no longer had symptoms. Even before she moved in, I assumed I had been exposed and decided to self-quarantine in order not to inadvertently spread the virus.

About four days into quarantine, I realized she needed round-the-clock care. I’d hear her shout from the bathroom, “What do I do now?” I’d walk in and she’d be standing in front of the sink, knowing she needed to wash her hands, but not knowing how to turn the faucet on (my sink is exactly like hers in her apartment). I’d turn the water on and she’d just look at me. “What do I do now?” I’d gently pull her hands under the water, squirt some soap in her hands and rub them together. 

“Lori, come here!” I’d enter her bedroom, where she was choosing clothes to wear in the morning. She needed help choosing pants, a top, and a sweater. And underclothes. Sometimes she would put on a turtleneck and walk out of her bedroom. I’d jokingly ask if she were cold, and turn her back around to choose a few more layers to wear. 

“What can I do to help?” she’d ask as she wandered into the kitchen as I made dinner. Once I asked her to cut the vegetables for the salad. “This is just not working!” she exclaimed with a huff. She was using the wrong edge of the knife to try to cut carrots. I asked her to set the table instead.  

Once I came to this realization, I had a choice to make. Moving to the wing that provided round-the-clock care at the facility where she currently lives would mean no visitors (now due to COVID, however, possibly in the future). No walks. No balcony gardening. As I was weighing the options, she started telling me stories about how she could never go back there, thinking that was where Dad died. My heart broke. I listened, nodded, and hugged her. I reached out to her memory doctor to discuss options.

My house has one bathroom, with a 100-year-old clawfoot tub that is difficult to get in and out of. It sits on a hill, with multiple steps to the front door. It’s perfectly cozy for one person. It’s challenging, but not impossible, for three adults to navigate (me working from home, Mom, and her caregiver). 

I called a realtor friend, warned her I was looking for a unicorn house, and asked if she would like to work together. Thankfully, she agreed, and a couple of weeks later I put an offer on a house. It’s a couple of streets over from where I now live. It’s not my dream house (my dream house is where I live now), but it has enough of what we need. I can make it a house that I love. That we love. Mom viewed it and said she loved it. She liked the space, she liked the light. We came home from the viewing and I found her in her bedroom putting clothes into a totebag. I explained that it would take a month to close and she was not happy. She didn’t understand why it wasn’t our house right now. 

Not the January I planned for, but it’s the January I got, and here’s hoping February is even better. 

PSA – COVID is real. For everyone out there who thinks it’s not, or jokes about it, I beg you to socially distance, wear a mask, wash your hands, or better yet, stay at home. One of the most difficult parts of quarantine/treatment is the stress of knowing that the disease can turn on a dime. One day you may be slightly coughing, the next you could be in the ICU. We’re both out of the quarantine period, and I’ll often wake during the night, hearing Mom coughing from the other bedroom. For people with Alzheimer’s, any illness exacerbates a decline in cognitive ability, and that cognitive ability often does not return even once the illness is over. Mom was most likely infected by someone who was asymptomatic. The facility she lived at had strict guidelines about temperature checks, screening, limited visitation, etc. Even if you’re feeling fine, please limit physical interactions, socially distance, wash your hands, and wear a mask (or two).

Trying Times

/ Lori McLeese / 34 Comments

This has been the most difficult twelve days I’ve ever experienced. My Mom has Alzheimer’s. My Dad was her caretaker and they lived at home together and basically didn’t share anything about her condition with others outside the family. Before he passed, Dad and I talked about care options for Mom and decided the best option would be to move her to a community in Asheville where as her Alzheimer’s progressed, they could provide more and more care.

On a Monday, Mom’s pastor and I told her that we found her a new home in Asheville and we’d be moving her.

A full twelve hours, non-stop, of her crying, me holding her, and saying, “I know. I know.” “But Jerry promised me I could live here until I diiiiiieeeeeeddddd.” (he didn’t) “But this is my hoooommmmmmmeeeee.” “What about all my pretty things?” “Why can’t I live by myself here?” These weren’t soft tears. These were heart-wrenching, full of pain, break-your-heart-in-a-million-pieces tears. I couldn’t argue or reason with her; I simply listened and held her and gave her Kleenex.

Then the anger. I had mentioned that Dad had left money in his estate for her to make this move, so that she would always have a home for the rest of her life. She then cried angry tears, screamed and cursed my Dad and said she hoped he was rotting in hell, and threw her wedding ring across the room. I listened, held her (when she would allow me to touch her), gave her Kleenex, and picked up her wedding ring for safe keeping.

Days later: “I can’t find my wedding ring.” I mentioned she took it off and she asked why. I said she was mad at Dad and she didn’t want to wear it. She asked why. I simply said, “You’re angry he died.” She nodded in agreement and I gave her back her ring.

She wanted to visit the new unit before we moved in. My sister met us there six days before the move-in. We pulled into the parking lot. “This place is so ugly!” We entered the lobby. “Why would anyone paint the walls such an ugly color?” We entered the unit. “This? This is where I’m moving? It’s so small!” (it’s larger than any of the places I lived in San Francisco). She collapsed in the middle of the empty living room floor, crying, “It’s so smaaaaalllllll. I’m embarrassed to live here.” I sat down next to her, held her and asked her to tell me more. Why would it embarrass her to live here? After much holding, and comforting, and tissues given, she told me people would think she was poor. My heart broke again. Both she and Dad came from modest backgrounds. They both worked so hard to both live comfortably and provide for us, their three children. I remember Mom clipping coupons and rationing food as we grew up – money was always a source of concern.

As we started packing up her condo in Winston-Salem, she insisted she would take everything. I encouraged her to pick out her favorites and we would pack those first. After she had gone to bed at midnight each night I packed up everything else. When she was out of the house, we would take boxes to Goodwill to donate. We packed her favorites during the day. She labeled boxes and my heart broke again. Once a voracious reader and writer, she had trouble spelling words, and sounded them out like a first grader. “Br..” I heard her saying. I returned to the living room and saw the word “bricle” (breakable) all over a box, written a dozen times in combinations of capital and lowercase letters. She put pieces of blue masking tape on the furniture she wanted to go to the new unit. Each day, more pieces had tape on them. I’d take tape off. She’d put tape on.

She continued to worry that the new place was too small. One night, after she had gone to bed, I marked off our living room with masking tape of the dimensions of the new living room. I rearranged the furniture, based on where windows and doors were. When she woke up, I asked her how she liked the new arrangement. “It’s great.” I explained that was the size of the new living room. She nodded.

“But it’s such a drab color. I want it the color we have here (a super pale yellow).” I confirmed with the new place that it was okay to paint walls. They said they’d call an outside vendor to get it done before Mom moved in. My sister, in Atlanta, bought the paint and dropped it off in Asheville, on the way to Winston-Salem, the next day. Move day was four days away.

By Tuesday night we had everything packed up. “Why are we still here?” I explained the movers were coming on Thursday; that we couldn’t move everything ourselves. “It’s a wasted day. When we leave here, I never want to return. Too many bad things have happened here.”

She saw neighbors in the hall, who said they were sad she was leaving and they would come and visit her in Asheville. She told them that she and Jerry had always planned to retire to Asheville, and sadly he died before he could get there. I didn’t correct her.

The morning of the move, she said she couldn’t find her purse (a normal occurrence). We walked through the condo. It wasn’t in any of the usual places. She started crying hysterically. I feared she packed it in one of the boxes when we weren’t looking. “Why did you pack my purse?” she hurled at me, accusingly. I shrugged and said, “I thought it’d be safe.” “I’m not leaving here until we find it!” She cried for hours and I asked her caregiver to take her to her favorite bakery. She returned and wasn’t crying anymore.

The movers loaded the truck. When they arrived at the new place and did a walk through, the head mover looked at me and said, “There’s no way everything on the truck will fit in here.” I told him I understood and would they be willing to take a few pieces ten minutes down the road for an extra generous tip. They said they’d be happy to. I thanked whatever being is looking over us a million times for small acts of kindness.

I had carried all of Mom’s plants in my car. We set up her balcony, overlooking the Blue Ridge Mountains, first. Her rockers, a small table, and dozens of potted plants with brightly colored flowers. She sat and rocked as the movers worked.

That day, the facility let us know the painters had a three week delay and couldn’t paint her unit before move-in. My sister and I asked the movers to put furniture in place, but not up against the walls. We would paint that night. I went to the hardware store and bought tarps, paint rollers, and masking tape. I returned and Mom came into the unit to see how far along the movers were. She mentioned that they did a good job on the paint job. My sister and I exchanged looks. “You’re happy with this color?” my niece asked. “Yes, it’ll do.” We started moving the furniture against the walls and hid the painting materials. I felt pangs of guilt in my stomach. I didn’t do what I said I would do. I hated accepting that Mom couldn’t process events any more.

We started opening boxes. About 20 boxes in, we found her purse. My sister and I did a happy dance, and brought it to her. “Look what we found!” She cooly looked at us and said, “I knew where it was.”

We entered the dining room. All the tables were full, so we sat at a four top by ourselves. Other folks came in after, but no one joined us. I felt madly protective of mom. Would the other residents be nice to her? Would someone join her when she was at a table by herself? Would they overlook her lapses in memory? Or shun her?

We needed to buy a bookshelf. All of her bookshelves in Winston-Salem were built-ins. She has so many books. She reads the same one over and over, but it’s a comfort to have hundreds of paperback novels. As we walked through the antique store emporium, I asked “What about this one?” and she would say it was too narrow, or not the right type of wood, or didn’t have a back. We found a couple that were okay, not great, and I said, “Okay, well let’s remember this, and we’ll keep looking.” She laughed and said, “You can remember it, but I won’t.”

We were getting off the elevator as other residents on the hall were waiting to get on. We stopped to exchange pleasantries. They asked Mom if she was new. She said yes, she had just moved in. They asked when; she looked at me. I explained that we moved in on Thursday. They asked where she was moving from, and she said Winston-Salem. She mentioned that her husband had recently passed away from cancer. They said, “Cancer is a horrible disease, but you know what’s worse? Alzheimer’s. I hope I never get that.” Mom’s response? “I agree. I hope that I never experience that.”

I returned to her new home in the morning and found her sitting on the balcony, rocking and reading the newspaper. “Isn’t this just beautiful?” she said, as she motioned to the mountains. I nodded, and said it was.

I’m hesitant to believe that she’s happy, permanently happy, in her new home. Just as she forgets bad things, she also forgets happy things. I want her to be as independent as possible. I worry I’ve made the wrong choices. I miss my Dad so much and wonder what he would have done in this situation, what he would have said, what decisions he would have made.