Nevertheless Dementia, We Persist

Short Story 3086 words

Two days after nothing could go wrong about moving Lynne to Life’s Neighborhood, Skylar, a caregiver on the night shift, called me at 9:00 pm because Schmitty the Kitty was out of cat food. She said, “Kim had noticed it a few days ago. Luna was going to call you, but I guess she forgot. I’ll go get some food.”

No, no, no. I had ordered a specific diet from Mud Bay for that unfortunate cat and gave staff instructions for a regular, high quality diet.

“Skylar, I’ll get it, but what should I buy?”

She had no idea.

“Check the bag.”

“Good idea.” She went back to the room and called to say the bag was gone, but Kim said it was green. “It was grain free,” she added.

I was mired in silent self-muttering. Not only had I planned a healthy diet, I passed on the sanctuary’s instructions for care. I did not organize a plan because I’m paying hundreds per month to care for the cat. They told me they take care of cats all the time, staff love cats, he’ll be fine. I was assured someone would look at the cat conditions every two hours. I’d heard nothing except Lynne has a tendency to throw away uneaten food and leave the bowls empty. If anything, the cat was probably overfed.

I dressed for the grocery store, deceiving myself that I’d remember the bag when I saw it. Or, I’d buy a small bag and resupply it.  

Safeway had five long shelves of cat food. Very few green bags. None looked familiar, most much larger than I wanted. I found a lime green one, grain free, healthy fish, etc. I delivered it. A night nurse was waiting to get the food and talk with me.

She explained she is a cat lover. She thought the cat hadn’t been fed in three days. It was not being taken care of and hid under the bed. She’s not sure if the cat will eat new cat food very well at this point. It was not healthy for Lynne the way it’s being treated. She asked, “Are you taking care of the cat?”

I confess I vented about my disappointment. none of it her fault. She settled me down and said she’d talk to management tomorrow.

Her gentle touch allowed me to calmly compose an email about what I expected: a shopping list to resupply, confirmation that instructions are being followed and the name of one person who would be personally responsible for the cat’s care.

My closing line was, “Finally, “I’d like to hear why I should pay for the cat care since I delivered the cat on May 12 based on what I’ve heard.”

Expunged, I went to sleep and woke to a phone call from Lynne at 10:30 pm. She had escaped to the lobby so the concierge turned her over to me for a video chat. Lynne walked around until I got her to sit down. The “cat thing” bothered her. She was lonely in the apartment, “It is hard.”

She kept repeating  “I’m not part of the crowd.” I didn’t understand that so I attempted to cheer her up with all the improvements we wanted for her care even if the felt we were moving too slowly. Afterwards, I wrote another email to let staff warning them I’d ramped Lynne’s hopes for a move despite our belief we needed to go slowly. I held it to morning, since I’d already sent the cat missive. These are excerpts:

 “After our encouraging and exciting talk last Tuesday about a move for Lynne, we agreed we’d get on it right away. Since then Lynne’s called me several times with help from staff.

1. I’ve told her I want to get her a smaller apartment.
2. I’ve told we will get her a tour of different living options. She liked that.
3. I told her there are places where she could walk outside. She liked that.
4. I told her I thought she needed to be in a place where she could be more social. She liked that.
5. I told her she would get a tour soon. She liked that.
6. I told her I learned she can come and go from Life’s Neighborhood with an escort. It’s not a lockdown. She liked that.
7. I told her she could find a new apartment on Life’s Neighborhood. She liked that.
8. I told her I believe she needs to be in a safer place.
9. I asked her if she could live with a roommate. She said yes,
10. I asked if she’d like a roommate. She said it would depend on whether it was a good match.

What is the status of giving her multiple tours? Has she had them and not remembered them? Could I come in and go on a tour with her?”

At 5:30 the next morning I broadcast that email to everyone making plans. Boy was I misinformed. Staff swept away my misinformation and replaced it with their action plans. Unfortunately, I’d probably ramped up Lynne’s fears.

Bless Kim, who defused everything I might have enflamed by 7:13 am:

“Jim: This is all a great start! And I get that with a decision made you would like to see some action-fast.   I believe that Lynne made a trip to LN yesterday, and I will go there with her today and we can tour the apartment we have in mind for her!  I will report back…. and we will make a point to at least drop you a note after each visit, so that she doesn’t have the weight of self-reporting. All my best, much love, Kim”

At 9:02 am Luna followed up with an update on the cat’s status because, she said, “The information I had was filled with inaccuracies.”

The bag of cat food was moved to the Associate Director’s office so Lynne didn’t try to refill the bowls after she threw out food. The cat ate last night at dinner time, three hours before Skylar called. Skylar didn’t know about hiding the cat food. The cat did get out of the room once. Luna believed Lynne is busy taking care of the cat.

Lynne was equally busy rearranging everything in her room to its proper place — for her. For the rest of us, it looks like chaos, but Luna said that is our problem. Staff clean the room as necessary for health and safety, which at times causes Lynne to ask if she had done something wrong. They assure her she did not.

Lynne visited Life’s Neighborhood yesterday to walk around the floor and into the outside courtyard where they enjoyed the sunshine. Lynne was scheduled yesterday to sing in a musical activity with the residents, including her potential roommate.

By noon Kim had completed the apartment tour. She quoted Lynne: ‘This is gonna make my dad so happy!!!’  

That sounded like Lynne would give me credit for the move.

Kim reinforced Lynne’s freedom to move around more and socialize with the people who live there, and most likely assist them at times. “She truly seemed SO excited, Jim. I think this is going to work out well.”

Whoa, that felt too fast. Were we really ready? 

Her sister and brother liked the news. Pam said, “I like the idea of this being a slower, thoughtful move where Lynne feels ownership.”

Keith wrote: “Thanks Kim and Team Aegis. Journey of a thousand miles begins with one step.”

Nevertheless, that night Skylar called on her phone with Lynne crying and heaving for breaths of air. I sought help and added Pam to the call for three-way therapy. Lynne was awash with emotions and information. She wanted to see her former home caregiver, Abby, who had become a friend. She wanted to go home. She wanted to help people on the Life’s Neighborhood floor.

Pam shared a comforting story about Lynne shortly after she moved into Aegis. They were riding up an Aegis elevator. Lynne said, “I know what my purpose is now. My purpose is to make people smile and make people laugh.” Lynne remembered it.

She remembered her visits to Life’s Neighborhood that day. She liked sitting outside in the courtyard. She remembered singing: “It worked fine. It felt good.”

She didn’t remember the tour of the apartment.

Everything seemed fine until the next afternoon’s lobby call from Lynne, who promised not to cry. We reviewed her day which included a walk and activities in Life’s Neighborhood where she helped out other residents again. She really liked it up there. Then her fears slowly wove together until I finally saw the mosaic of her fears threaded between her excitement about a move.

1. “I’m not part of the crowd.” What that meant was she wasn’t sure if the people in Life’s Neighborhood liked her. She liked them. She feels like a stranger who has to fit in, restoking fears from changing schools several times during elementary and junior high.  
2. She was afraid she would get “kicked out.” Kicked out by Aegis? “No, the people on the floor.”  
3. She doesn’t like to eat by herself in the apartment. I said there are some advantages and went over people she avoids in the main dining room. She laughed and admitted that was true.
4. I asked if there were people in the Life’s Neighborhood that she would like to eat with. “Oh yes, there are…. not everybody.”
5. I assured her they wanted her to move in. “They do?”
6. She was quiet. “Well there may not be room to move in.” No, there is room, they have rooms.
7. She was quiet. “Well, that may change.”

We switched to good fun when I added Simon and Christoph into the conversation. Then her food arrived for another lonely dinner.  

I sent these notes to the tour team and said she is prepared to the point where she has obliterated any fear of moving.

“You all, we all, have overcome her fears of the move to the point where her greatest fears are that she may not be good enough or there’s no room. She’s ready as soon as you all, we all, are ready. So is Schmitty, in her opinion. ‘He’s so mellow.’”

Everything was fine until the next afternoon’s lobby call, with tears, and her promise not to cry. She’d been thinking her friend, Abby, could help her. I promised her I’d look into it, although I wouldn’t. She felt lonely in the spacious lobby with nobody around.  I talked about whatever until my brain went blank and said it was her turn. She said, “I like the other floor.”

Her next lobby call was a few hours later. I got a little edgy. “Look, I know it’s hard, but we’re working on it.” I impatiently implored her to be patient and she quieted down and I got control. She caught the tone of my voice.

I was torn up afterward. Did I build up expectations too fast? Is she more seriously depressed emotionally than I realized?  What?  What?

This was my email plea to staff Wednesday morning.

“I’ve already burdened you with you too much about how excited Lynne is about the move. Now I need help.

“She called in tears Sunday and twice on Monday. Skylar and Charlie end up with Lynne in the lobby or her room because they need help cheering her up, so they call. That’s fine every time. But last night I got a little edgy because she’s way out ahead of us in being ready to make the move.

“I said, “Look, I know it’s hard, but we’re working on it.  We are going to get you in a new room. We are going to move Schmitty.  Everybody wants to make it happen. Everybody loves you. But it’s complicated — moves, rooms, other families, care plans, room preparation.  I told her she has to believe. Be patient.

“She caught the tone of my voice. And I could feel her sucking it up, getting control. I think it helped, but I don’t know. Is she also suffering from raging hormonal changes at her age? Did we build up expectations too fast? Is she more seriously depressed emotionally than I realized?

“Is there anything else, we, I, should be doing to calm her down? Is there some project we could give her that she has to do before she can be ready — read all her books? Sort all her clothes? Decide what furniture she wants to take? Decide what to do with all her pictures?  I think she likes eating up there with the residents, sitting in the courtyard.  I don’t know. Help me say the right things, but keep sending the phone calls.

I’m sorry I am adding to your burden with all these emails.”

Luna cracked the whip that Wednesday. She called with Lynne in her office to state her plans and Lynne moved in Friday. These are my notes:

1. Luna has scheduled Lynne for all day today in Life’s Neighborhood. She is free to go back to her room and come back at will.
2. Luna has reserved a room for Lynne that is the roommate-sized room, which needs the carpet replaced.
3. We don’t know if she has a roommate or not; nevertheless we’ll be able to find another one that Lynne will find a good match.
4. Luna has ordered a contractor to install the Aegis standard replacement carpet. He is looking for work and usually finishes in a few days.
5. Luna and Lynne are going to sort through her clothes, which include the summer clothes, thanks to Sheri.
6. Luna organizes moves to new rooms so they happen in one day.
7. Luna is arranging a 2^nd meeting with the Aegis medication prescriber, although Lynne didn’t connect with him the 1^st time. Lynne can reject him.
8. I told Luna Lynne has an appointment on Monday at 3:30 pm with her primary care physician to get a checkup and discuss his recommendations for medications with me and Lynne.
9. Luna was transparent to both of us that this stage is the hardest one for Alzheimer’s, because there are times of lucidity and times of forgetfulness, which Lynne remembers from her Grammy Helen.
10. I ordered a bookcase to arrive Friday, and I’ll assemble on Saturday.
11. Luna warned she can be bossy.

I shared my notes with family, copying Luna. She told me she laughed because she felt she did such a good job covering it all. She had given the orders off the top of her well-organized head. Luna has also told me she considers Lynne one of her family, and me too. They consider the caregivers part of their care responsibility. I need it.

My son supported me. “Thanks for sharing pops. Anytime there is a shift she rolls through her emotions. With all of the other noise in the world right now, I can’t imagine she is not overwhelmed and anxious. We all are. I think patiently checking in, reassuring, with a consistent message, like you do, will help get her though this.” That was kind, but I’m hope I can avoid getting edgy with her.

Luna got the carpet replaced Thursday.

Jessica’s crew moved Lynne Friday, with one major change in the plans.

Jessica’s crew didn’t move Schmitty the Kitty. He stayed in the room. My bookcase arrived.

Friday night Skylar called. Schmitty the Kitty was growling and meowing alone in the apartment without the bed he always hid under. Jessica and all her staff thought the cat should not be moved after the three-week trial with Lynne and Schmitty. The staff were united that the cat was not being cared for, so Jessica told Luna they didn’t want to move him. Luna said they’d know best. Skylar didn’t think Lynne remembers she has a cat. The care team wanted to see if Lynne misses Schmitty the Kitty. The care team left him in the bedroom this weekend and hoped he’ll be glad to be alone.

Skylar said, “That was not the right plan.” She had him in her lap for half an hour. She was willing to take him home with her and her partner for the weekend. I called Patricia the Cat volunteer to make it a three-way call.

Patricia was sad. Lynne had told her she loves him and he sits in her lap all the time. Skylar was willing to adopt him if Lynne didn’t want him. We talked out the details for his care and feeding.  

Saturday morning Lynne and I talked on the phone. She liked her room. Her bed was there. Her chair. She didn’t have a roommate. I asked about the bookcase? What bookcase?  Oh, there it is. It’s nice. She walked over and picked up a book. She liked the title. It looked interesting. We chatted about our upcoming Zoom birthday celebration with the whole family for Keith’s birthday. She didn’t mention Schmitty the Kitty.

Saturday afternoon, I visited Lynne in a tent outside separated by a plastic screen.  “How are you doing?”

“I’m scared. [Pause]. I remember Grammy. [Pause]. We had some good times too. I’d go over and she’d make some food. [Pause] I want to be here. [Pause] I don’t like it when they tell I don’t have to carry a book all the time.  Reading is my escape.”

She didn’t mention the cat. She cheered up when Pam showed up on my video screen. We had a good chat. She likes Life’s Neighborhood and helping residents, although “…sometimes they don’t have many skills.”

It has been a tumultuous time. I felt drained. I couldn’t keep the blog current. I worried about how I cared for her. When Pam came on the phone that afternoon, I watched how much easier Lynne shares with her sister, brother, sons, friends, and care givers. She encouraged me as she thought through her thoughts, got frustrated at times, but steadily persisted until she articulated another thought and kept thinking.

Maybe she worries about caring for me. She should.

I emailed the family and told them Lynne was happy in her new room, but don’t ask about Schmitty the Kitty at the Zoom celebration tomorrow.

It is time for me to get this story posted, sit back a little, read more about caregiving and get into another strong support group.