Better Environments Help Lynne

Two friends and I made inexpensive and simple changes in her environment that enriched the life experience of Lynne, my daughter with Alzheimer’s. They enriched me as a caregiver.

Dad arrived. Staff had propped open her apartment so Lynne could walk in and out. One of the residents was chanting loudly repeating a guttural sound in the dining room. His rants have bothered Lynne for months. Lynne was in the hallway past the dining room, bent over, hands on her knees, sobbing. She reached for me and hugged me. I put on her headphones as we headed to the lobby where we could walk through the dining area.  

In the lobby she saw a staff member working in a room where I tried to guide Lynne. She resisted. No, I can’t go in there.

Lynne, it’s OK.

No.  In her room. It’s not going to work.

She thrilled me. The change in meds seemed to make her more alert. We walked toward large leather armchairs where I pulled one in front of the other because her eyesight is limited to tunnel vision in front of her. I sat down. She eventually sat down on the other, face to face. She scanned the lobby, quiet with few people. She watched the cars, buses, and pedestrians. Her blue eyes landed on my eyes, then continues to scan more. She points at a 95-year-old resident with her walker. She’s a really ni … Lynne scooted her chair toward me. I scooted my chair closer, and her eyes brightened up a little bit, with part of a smile. The rapid improvements in her mood came from the change from the environment on her floor compared to the lobby without having to medicate her.

I watch every move as closely as I watched her as an infant, loving her as deeply as I did then, and intrigued by the mysteries going on inside her. Her body twitches slightly in her chest and arms. Her hands have mild tremors. She crosses and uncrosses her legs. Her lips are turned down like the sides of a steep hilltop

I repeated tunes in her headset four or five times if she was tracking the lyrics or the beat. She was thinking about something all the time with a running soliloquy that I did not interrupt. Oh. That’s right. Where? Wow. I remember that. Oh nice. OK. The walk more. (Whispered) I don’t want the …. There’s going to be a big riot, or a fire. Yeah.  I need to go up. There. (she pointed with her finger and stood up.)  Yeah, I think so.

She joined a conversation of two staff members in a standup meeting. When they thanked each other, Lynne said, Yeah, thank you.

I talked with several staff about the problems with furniture in the hallways on her floor because she cannot sit and rest, so she bends over and puts her hand on her knees to relieve the pain. The chairs are too small for her. She is afraid to sit down in them because she has fallen several times when she tried. She tenses strongly when two people assist her into a chair. I have given up trying to get her in my car.

Staff has opened her apartment door to at least let her sit on the bed. I re-arranged her room where she has a big armchair at the end of her bed with blankets and pillows on it. I pushed the armchair to the wall and useda black table chair for the blankets. Now Lynne has an open door to a refuge with a comfy arm chair. I urged a couple of staff to get a sofas or large armchairs in the hallways for resident rest stops. I asked staff on the second floor to check with the concierge if Lynne could wander alone safely in the lobby with healthier residents. She walks out of sight into the nooks and crannies on the second floor.

I am immensely pleased I had the time and the ideas to give her a little better life. I feel more meaningful.

And then I get a call from Nancy today. She and a friend took Lynne outside this afternoon for a fantastic time compared to the sedate visit I had with her. Wait until you read Nancy’s post on this blog about the fun Lynne had in their car, Volunteer Park, a donut shop and the Broadway market. Lynne reportedly commented on the young hunks strolling by compared to obsterorous octogenarians she’s running from. I was humbled and thrilled to hear the excitement from Nancy’s voice.

Visits are Meaningful

Visits witih Lynne can be hard when we see her less vivacious than our cherished memories of her. Understandably people are afraid to visit, including me, when I don’t have a way to cheer her up, so it’s easy avoid it. And yet her condition nags at us because we love her. I have learned that my times, or family times, or friends times, are always meaningful for the visitors, and almost always meaningful for her. They are meaningful for me and others because we tried to give Lynne a better time than she would have had without our visits. Below are stories of simple visits that demonstrate visits are almost always meaningful for her. Lynne told one of her friends told her to go away, so she did, and came back the next day to share a cheerful visit. Imagine how meaningful it was for Lynne’s friend to have the courage to immediately visit again when Lynne was glad to see her.

The good news is Lynne is more responsive and walking more upright since we changed her medications. Last Sunday friend, Lynn, sent me a message. I helped Lynne eat lunch and gave her a cinnamon roll which she ate as we walked outside. We laughed quite a bit and complemented each other on excellent hairdos. She was in good spirits. Obviously friend Lynn was in good spirits about her visit.

Her boys and Pam, my other daughter, saw improvements for an hour-and-a-half lately. She pointed at me and told them. That’s my dad. She pronounced the title on a poster:  Mardi Gras. We sat in the lobby and talked. I called out a to resident close by,  Hello. How many boys do you have? Lynne answered immediately, Five. I have rarely seen visitors with her. She sits with other residents in the lobby. They tell Lynne, You’re lucky. Your dad comes to visit you.  I know those statements make her happy. They make me feel more meaningful.

Today when I met Lynne she was sobbing, tears flowed down her cheeks. She wrapped her arms around me, saying, She took it all. She took everything.

Really? Everything?

Yes, everything.

I pulled back and looked her in the eyes. Hon, I was just in your room. She didn’t take it all. It’s all there.

It is? Well OK. I lifted her mood and made me feel meaningful. I put on her headphones and backpack to hear the Sister’s Music list from her sister Pam. Lynne gazed up and nodded her head. She mouthed some words. Her body slightly swayed to the music. I was glad I brought the headphones and Pam sent a list. It kept her mood mellow. Pam and I both feel more meaningful about her music. I am grateful for Pam’s care.

I walked beside her, slipped my hand under hers and left it open. Sometimes she moved her hand away. Sometimes she let our hands touch. Sometimes she grabbed my finger, three fingers, the whole hand. Sometimes a grip. Sometimes gentle. It made her more connected, secure, stable. I felt more meaningful. I steered her up to the 6th, 5th, 4th, 3rd floors and the lobby. She studied photos revolving across television screens on every floor. She often turned to smile at me. We were both getting some exercise. I felt more meaningful. I waved to her when I left her floor before lunch. I felt I improved her feelings for a little while. I felt more meaningful. Don’t let fear keep her from giving her a more meaningful journey.

Lynne Can Have Visitors

Lynne’s Aegis community is open fully for you to visit or take her out. A gentle reminder that all visitors will be required to show proof of receiving a COVID booster prior to entering and masks must be worn at all times please.

Lynne loved the sun on her face and closed her eyes for the sweet dreams she was having on Sunday when her brother and sister-in-law took her for a walk outside, after a long wait.

Updates Under Hospice Care

Lynne and an oncoming hug

Lynne’s bumpy trip through her first week in Hospice and Palliative care led to adjustments made by the work of her new nurse in consultation with her entire medical team, caregivers, and me. I had become concerned by the declines Lynne showed that week. Lynne was minimally responsive on a sofa in front of the fireplace as she concentrated on the music in her headphones. Lynne walked leaning to the side and backwards with a very stiff back. She fell onto floor near a chair, but no harm. She sat with her head looking up at the ceiling in a rigid position at an ice cream social where I spoon feed her. One morning she had returned to bed with one leg hanging over the side and kept dozing off as I stayed briefly. The floor med tech decided she was in a lot of pain from walking and leaning backward one day, so gave her morphine, which scared me.  Yesterday morning when the floor manager observed after being gone for a week, she said, “This is not Lynne.”

The new nurse calmed me down. I was worried at what I saw in comparison to my unrealistic hope she would show immediate improvement. I felt derelict as caregiver because I did not get accurate information from the beginning. I am pleased with nurse’s response and expect I’ll be updated on her care.

I contacted her new nurse yesterday and passed on my experience and what I had picked up. She called back after supper with her report. She had seen Lynne one-half-to-an-hour after the of morphine, which is during the peak time for its effect on the resident. It was a very low dose and Lynne was fine at that time. She informed me about Lynne’s new prescription of Tramadol twice a day and cut-in-half her Seroquel dosage at bedtime. She also clarified misunderstandings I had from incomplete  information in my talks with staff

Yesterday morning she stood rigid listening to the music director lead us in floor exercises. She sang lyrics with from Love is a Butterfly. Lynne enjoyed watching the musical director and me as I led us in stumble dances through two-steps, tango, and east coast swing under the direction of a resident trained as a dance instructor. We can still have active fun.

Gems of Joy

Today’s post is from a longtime friend of Karen’s and mine who shared with me after my post about shifting my care during frequent mood changes (1/5/21 Shifting with Her Moods). Her sharing from her experience helped me, and I thought would be helpful for readers..

“ I read your Facebook post on shifting moods and it took me back to the 3-4 years we spent with my mother-in-law who had advancing dementia.  I’d like to share with you some of my ‘learnings’ during that time—some from reading, some from learning from my communication mistakes.  I hope they can help you realize that you are doing the best you can under constantly changing circumstances.

“I found that I had to give up my ‘teacher and reality orienting’ roles that I thought were so helpful.  I read an article that reminded me of what I knew worked so well with children: meet them where they are, go into their world and let them lead you.  I thought of that when Lynne said, “I hate this place.”  Letting her know that “I hear you,” or “This is hard, painful,” or something to that effect helps validate what her reality is for that moment–she’d rather not be there.

she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment.  “My MIL’s mood swings were a challenge for me—until I realized that I was taking them personally, thinking there was something I could do to make them better.  My presence was my gift to her, whether her mood was positive or negative—I tried to be a sponge and just absorb and accept and witness them.  It helped me that I knew she would quickly change, and, better yet, would not remember or “accumulate” these unhappy moments as memories.

I had not helped her.” I cannot fathom how painful it must be as a parent to be unable to take away my child’s pain, the one thing (after unconditional love) that we see as our role.  But then I reviewed your description of your time with her.  You gave her nourishment when she couldn’t do it herself, you danced and laughed with her when she felt like it, you accepted her following you in and out of her apartment— all with love and acceptance of the moment.  It all helps—but those times cannot be exchanged like green stamps (if you remember them) to lessen those painful times for her.  I will pray for more joyful times than painful ones, more movement and engagement than withdrawal — perhaps that is all that can be hoped for.  Gems of joy to be gathered and returned to when times are tough.”

Care for Dad

caregiving

I received a care call after dinner last night from Luna, the Director of Operations at Lynne’s assisted living. She says, and most staff say, caring for a family caregiver is as important as caring for each of her 120+ residents. She wanted me to understand Lynne is much improved since our drive her last Monday. She ate her full meal. She is agreeable, not aggressive; calm, not anxious. She sleeps better. Her feet don’t hurt. She likes her shoes. She helps residents but worries they don’t respond. Luna said, “I say, ‘Lynne, you have to remember, they have dementia.’ Lynne says OK and continues to help. It’s a marked change.”

The Boys and I saw similar responses an hour earlier in Outdoor Living. She welcomed me with a strong hug. She giggled to see them, talked, remembered, laughed. She wants the Boys to visit her room. The boys want to. We were encouraged.

She was excited about a thank you card, but when she read the cover that said ‘Cougars,’ she said, “She’s from Washington State.” When we left had to remind it was her card.

She remembered a South Eugene high school friend who contacted me. The friend had a riotous time with Lynne at the last reunion and plans to connect with her. The Boys reminisced with her because she took them with her for one of their driving trips. 

Staff are eliminating tranquilizers to get a new baseline and phasing in new ones, but Luna didn’t have the details. She promised information about her medications when she went back to work.

Let’s hope she is comfortable in the baseline and any replacement medications help her felicity. We know Luna’s care call helped my felicity.

Still Stumbling over Footcare

Caregiving

New slip on shoes and color matching socks

We are still stumbling forward on her footcare. Last Thursday with her sons Lynne told us her right foot hurt. I took her boot off. When I walked her inside she had put her boot on and zipped it up. She’s persistent and inconsistent. I decided to replace the boots.

Lynne wore socks in her Velcro shoes and brought her boots to the shoe store. When we took her shoes and socks off, the heels and ankles on both feet were bleeding.

The store owner stopped the bleeding and put band aids on both heels and ankles of her feet. The owner refunded the boots because they were inflexible for the foot size she wears. We bought new socks for her black shoes.

I was furious about the bleeding and wrote an email that her foot care is unacceptable.

Pam said bleeding was completely unacceptable. Keith said, “Pops, this isn’t Aegis fault. New shoes and no socks make no sense. Of course, she is going to blister. Wearing socks just needs to be the new standard. She needs comfortable shoes and socks.”

Luna, operations manager, (not her real name) set up a family conference on foot care and medications. Luna acclimated us to the new world of Lynne’s moods. She gets frightened, anxious, aggressive, and angry. Once she gets angry, there is no talking her down. She will not stay alone in her room more than a few minutes. Staff calls to cheer her up with calls to me, friends or family work until she hangs up and reverts, which explains why I‘ve had fewer calls.

She walks constantly around the lobby where she can be observed, or where staff lead her to other areas such as Life’s Neighborhood, outside garden, and sixth floor outdoor patio. She says hello to people she meets. She won’t sit long enough to finish a dinner, so staff give her snacks between dinners. We’ll have to watch her weight. Luna warned us that their plan to eliminate her current medication for a baseline usually takes 30 days, and another 30 days to find a new level. Luna noticed she leans to the left when she walks, which may mean an inner ear infection. She’ll have nurses check on her.

Then Luna reviewed the condition of her feet and shoes. Lynne pulls off her shoes and socks and puts them on perhaps 30 times a day. They can get lost, so Luna says she has a black marker to write the name on the shoes. We need to replace those shoes every 6 months. Luna said the reason Lynne had blood on heels was because she had blisters from wearing the boots without socks for two days and then wearing them other times. The blisters ruptured on Friday when we took her to the shoe store.

Aegis staff, nurse and a podiatrist have checked the pain in Lynne’s foot. A nurse and the podiatrist used a technique of comfortably holding her feet while chatting until she’s distracted before pressing all toes, bones and soles. She didn’t wince either time. The X-Rays did not show any reason to cause pain.  

Pam and Luna recommended we buy slip on shoes for the summer, so Pam ordered the ones she likes at the shoe store. Lynne liked the fit. She also liked how easily she slipped them on and off in the store. Afterward we drove around Lake Washington listening to Bruce Springsteen, which gave her time to take her new shoes on and off often. When we returned, the concierge suggested we put her names in all four shoes. His black marker did not work in her black shoes. So, he used a machine that printed stickers with her name. We pasted them on the leather and edges of the cushion with the hope the stickers will stay on as her shoes come on an off.

Caring for her distress is getting harder. Feeling her in distress is getting sadder. Doing the best we can do as a team makes it easier.

We’re So Blessed

fun activities

A Caregiver Reading Lynne’s Poem

Lynne joined me for our visit in a private room. She wore black and gray cotton sweaters, summer red and yellow capri pants and flip flops on bare feet. We had 11 inches of snow outside her window. She said, “There was so much snow. … You couldn’t go.”
I had decided to amicably encourage her by quietly listening to every word, if she was in a good mood. I want to know her thoughts when she spends hours alone, or absorbed in thought around other people, and when staff doesn’t need to call me because she’s anxious.
Quiet smiles amid slurps of our strawberry and vanilla milkshakes.
“They’re going to get someone new. … Not yet.”
She looks at the floor. “We had it all. We have family. We’re together.”
I nodded, “We are.”
She squeezed her hands. “And they’re so good. … We’re so lucky. … We’re so blessed.”
She sat back. “That’s why they say, ‘I’m uppity’…. Because we have it all.”
We opened her 55th birthday album of family photographs. She paged through it, stopping with a laugh and a point. “They were so little. … I loved that shirt.”
She’d follow a thought in silence until she noticed the album and flipped another page. “There she is.”
I read her the poem, I’m From Mom, which she wrote for Karen on Mother’s Day in our fiftieth year of marriage. She laughed, repeating phrases.
After half-an-hour, she leaned forward. “I think I should probably get back. I don ‘t want to overstay. Or they’ll think I’m uppity.”
We showed her poem to the concierge, who read it along with her. “It sounds like Mary Oliver,” he said.
He made a copy for the Activities Director, who promised he’d read it in poetry class the next day.
I slipped out.

Visits and Guilt

caregiving

Lynne’s three boys, mostly men now, over 18 and 6’ 3” tall who wrap me in their arms, visit Lynne an hour every Thursday when they are together between fulltime schooling and work. Lynne squeals with joy when they sit down in the outdoor living room at Aegis.
They share and laugh for an hour over memories and current stories. Rides on her scooters. Scary rides at theme parks that stopped at the top. Cars they liked to drive or were afraid to drive. Lynne burning up her Mom’s car engine in high school. Lynne pumping up her ballplayers by urging them to visualize themselves making a great play.
It worked, one said.
The older twins describe a neighborhood playmate who towers over them now. One remembered the playmate’s mom, a friend of Lynne’s, would criticize him as if he was her kid. Lynne telling them to write down goals. They never did it but they agreed research shows it works better if you write them.
Agreeing, You could talk to her about anything, everything.
It’s taken a long time for me to get her brotherhood into a regular schedule on topics they would enjoy. At first irregular visits were awkward with uncomfortable silences. I reminded them dementia wipes out short term memory and language skills first, leaving her able to recall long-term memories. Plus, she is interested in whatever interests them. They keep her animated. They look forward to it, arriving early the last two visits.
I worry they will forget. I remind them. I worry the boys will feel guilty they didn’t visit more, like I feel guilty about my mom when she had Alzheimer’s. I worry once a week is not enough. Lynne said recently, They don’t have to do that. They’re so busy.
The whole family worried as the boys’ school performances deteriorated during their shock over her diagnosis. The twins left college to come back together to support each other to support her.
She frequently remembers them when people ask her about them, they are all doing exceptionally well. Now she falters to find words to name them even as she shakes her smiling face in bliss.
I worry I should do more. I should visit outside more. I should call her on video chat more. She rarely answers because staff says she stays in the shared living area. I reason if she’s not calling me, she’s happy with some other activity. I hear her ringtone on my cell which usually means she or staff want me to cheer her up. Sometimes I ignore it because I can’t find the courage to help her. I feel guilty. I tell myself about all my other responsibilities as a widower, writer, investor, father, grandfather, and sharing her story with friends. I have to exercise and stay active for my mental healh.
But I still feel guilty when I remember I visited Mom less and less as her awareness drained out of her. I might have done more.
For now her boys love their visits, and are busy doing well, which is Lynne’s ever accessible joy. And if they feel guilty in the future, I hope they can forgive themselves. I can ususally forgive myself, but there is always the residue of doubt about what I might have done.

Happy on a Simple Sunny Drive

fun activities

Lynne settled into my new red Mazda CX-30 for a sunny afternoon drive through her old neighborhood listening to songs from her playlist of favorites. We drove past the Greek Orthodox church.
I asked, “Did you ever go there?”
“No, it would feel like I was intruding.”
We drove down the alley by her house where she raised her newborn sons. Blossoms still towered over her tall fence. She recognized the ballpark and Montlake elementary and the playground equipment where I played tag with her sons.
The late afternoon sunlight blinded us as we drove past houseboats, prompting me to tell her a writer in my class is working on a memoir of living on a houseboat for 20 years. We stopped at a waterfront park to see squawking ducks and a fearless pigeon that posed for a photo with Lynne. A daddy chased his laughing children as landscapers said they were planting 3,000 plants, so we thanked them. Kayakers on the water reminded us when Mom loved a lake where our camper trailer perched on a bank above a muddy shore.
Lynne laughed. “The Mighty Muck Monster.”
That was our kids’ favorite of many stories I told around the campfire. The Mighty Muck Monster rose out of the muck, so I warned them to stay away from the shoreline muck day or night. I needed an ending, and it came to me from somewhere.
“It was afraid of nothing,” I paused. “Except, for one thing.”
“What was that,” they asked?
I leaned forward for my hushed answer with complete conviction, “A mad mommy.”
Oh, yes, they could imagine their mad mommy protecting them from the Mighty Muck Monster.
We drove around Lake Union for an hour to arrive in line for shakes at Dick’s Burgers in the gloaming. We were cold by the time we got back to the car. We headed home as The Judds sang their song, Love is Alive. She mumbled something, so I patted her knee and asked, “A little cold?”
“No, I’m happy.”
That thrilled me. It awakened me. I was happy. For the most part we were as comfortable a couple as Karen and I would have been — there were exceptions of course, like when Lynne tried to take my strawberry shake after she downed her vanilla shake.
I constantly search for different ways to make her happy. At times it seems simple, and at other times, hopeless. Maybe I make it too complicated.