Trying Times

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.

Saying Goodbye

Question: What do all of these things have in common?

  • A bottle of Purell by the front door
  • Protein bars in the pantry
  • A partially filled pill box on the kitchen table
  • Reading glasses on the side table
  • An unopened letter on the desk
  • Protein shakes on the second shelf of the refrigerator

Answer: They will inspire unimaginable waves of grief when you realize that your father will never use any of them again.

Dad went into the ICU on Thursday. And even though he had been in and out of hospitals since December 26, it was different this time. He was in pain, unbearable pain, from peritonitis. When the Emergency Department doctors diagnosed him, I asked if it was curable. They assured me it was.

Except that it wasn’t. And three days later, Dad drew his last breaths surrounded by his wife, his children, and his pastors.

Dad was the epitome of love and compassion. He thought of others and how we could work together to make this a better world. When I was in high school, and questioning organized religion because of (insert myriad of reasons), instead of forcing me to attend services, he asked me what I would like to do to help others. So from then on, we worked the Samaritan Soup Kitchen downtown on Sunday mornings. I didn’t think much of it then, but later I realized what a sacrifice he was making to take me downtown every Sunday morning. He actually liked church. He liked the social aspect of it; he liked the faith aspect of it.

I was supposed to travel to Charleston on Thursday morning for a friend’s 50th birthday celebration. As I was getting ready to go, I went into his bedroom to say goodbye and noticed he was in incredible pain. We ended up calling an ambulance because I couldn’t transport him in my car without hurting him. He apologized, saying that he always ruined my trips. I laughed and told him not to worry about it – there were more important things. On Friday, from the ICU, he told me to go to Charleston, to be with my friends, it was important to celebrate relationships.

One thing he was clear about was that he did not want to be sustained by life support, and he had documented that thoroughly. We had discussed it on Saturday morning before I left for Charleston. His doctors had come into the room and said that if the infection didn’t clear up soon, they would need to remove the Tenckhoff catheter that he used to perform peritoneal dialysis. I looked at them and asked how he would be able to perform dialysis. They said he could revert back to hemodialysis. I shared that that wasn’t an option for him, since his blood pressure was so low. They said that CCRT, the continuous dialysis (which was apparently very painful and could only be done in the ICU) was the other option. From his bed, Dad shook his head and looked up at me with pleading eyes. I told him I knew that wasn’t what he wanted, and we wouldn’t let that happen. The doctors left. I reminded Dad that he was of sound mind and he could make the decision at any point to leave the hospital and we would engage with Hospice at home. He joked that he had never been of sound mind. He also said that if they told him he would have to be in this existence for a month, that wasn’t the life he wanted. I asked him if he would agree to the treatment for a few more days, maybe a week, to see if things got better, and then we could re-evaluate. He said that sounded like a good plan. He told me to be safe, enjoy my friends, and we’d see each other the next day.

So on Saturday mid-morning I went. Early Sunday morning I learned his condition had worsened, so I drove immediately to the hospital, praying the entire four hours I was driving that I wouldn’t get a speeding ticket and that he would survive until I got to the hospital. When I entered the ICU room, my Mom, my brother, and my sister were already there. I was overcome by guilt and sadness. He was fully on life support, exactly what he didn’t want. His eyes were half open and he was gasping for breath. I was gutted.

I leaned over, kissed his forehead, and told him I was there. He opened his beautiful blue eyes and said, “No way!” I repeated that I was there, Mom was there, Greg was there, and Ashley was there. The whole family was there and he was surrounded by love. Again, he said, “No way!” closed his eyes, and leaned back. We talked to him and told him how much we loved him, how much we appreciated all that he had done for each of us and for our community, how much we’ll miss him, how we cannot imagine living without him in our lives. I choose to believe he heard us. Occasionally he would squeeze my hand, or an eyebrow would raise, or a slight smile would pass his face. My brother left to get some sleep before his night shift.

And then the nurses asked to speak to us. I went out of the room. Before they said anything I blurted out, “He’s dying and he’s on life support and he didn’t want that and he’s in so much pain and we have to abide by his wishes and I don’t want him to die and he’s going to and is there anything you can do to cause him to be in less pain?” And then I collapsed.

They tried to tell me I was making a decision out of love. I was honoring his wishes and he was suffering and if we moved to “comfort care” they would have a lot more latitude with what they could administer.

I called his pastor. They ordered drip painkillers from the pharmacy.

We waited for his pastor to arrive. We waited for my brother to return. I checked his phone to see if anyone had sent messages that I could share with him. There were a couple, as well as about 300 spam and marketing messages over the course of one day. I chided him for subscribing to so much junk, then proceeded to read the offers to him, one by one. We laughed, and I hope he was laughing, too.

The pastor arrived. My brother arrived. The painkillers in a drip bag arrived. We said a prayer, holding hands. I explained to him step by step what would happen. I reminded him the first thing he told anyone when he checked into a hospital was that he has a full DNR (do not resuscitate) order. And that he didn’t want to live a life sustained by life support.

The nurses started the painkillers. “Dad, they’ve hooked you up to a stronger painkiller. You won’t feel the debilitating pain that you’ve experienced over the last few days anymore.” They stopped the blood pressure medicine drip. “Dad, they’re stopping your blood pressure medicine drip. Your blood pressure might drop.” They stopped the CCRT process which was cleansing his blood. “Dad, they’re disconnecting you from CCRT. I know how painful this was over the past few days, and you won’t have that pain anymore. This is what you asked for, and we love you so much.” It was 3:33 pm.

I had an idea that when someone is taken off life support, they die. But they don’t. The body keeps fighting, keeps breathing. The heart keeps pumping. We continued to hold his hands and tell him how much we loved him for the next 1 hour and 13 minutes. I was watching an artery? a vein? in his neck, mirroring his heart beat. I watched it slow. And slow. And stop. And I heard a guttural cry. I wondered where it was coming from when I realized it was coming from me. There is nothing that could have prepared me for him drawing his last breath. The tears would not stop flowing as I sobbed, heaving to breathe.

The nurses told us we could stay as long as we wanted. I don’t know if we stayed a couple of minutes or much longer. I do know that when I leaned over for to give Dad one last kiss goodbye, his body had gone cold.