Lynne’s Sense of Self

When my mother was in the end stage of Alzheimer’s I believed she was blissfully unafraid behind a veil of ignorance about her disease. She had anosognosia, a symptom of not knowing she had a disease, which is different from denial. Lynne and I had hoped she would have the bliss of ignorance. Yet Lynne has had sixty days of Hospice care during which she has lost weight and trouble chewing food. She is aware she has limitations.

She has a strong sense of self relentlessly driving her behavior with meaning.  She knows she is a sapient body in space with words like “I’, or “me,” or pushing Dad away. The downside is she wants to get her body home. She gets depressed, anxious, lonely.

She also values her virtues as a mother, educator, daughter, sister, colleague. She wields a slightly smug smile when I read her notes from a grade-school teacher, Lynne’s co-teachers, fellow recruiters, neighbors, and fellow graduate students. She glows when she sees her boys, together, towering over her, coming to care for her week after week.  She responds to social communion with others who give her dignity, her worth as a person, valued, included, and not ignored. She feels pride when people compliment her on the streaks of gold in her healthy hair. She shows concerns about residents and embraces caregivers. Friends validate what she is feeling by amazingly walking her through Volunteer Park to eat a donut and people-watch at a market.

Lynne does not have my mother’s ignorance of bliss from Alzheimer’s. She has awareness for which she pays a price. In return she has meaning, dignity, and love confirmed and sustained by those who cherish her.

I hope I would have her valor and similar caregivers to sustain me.

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.

Friends Can Care More

Nancy and Lynne in Sunshine

Nancy and Lynn, friends of Lynne’s, sent me this message. “We took her over to the Capitol Hill farmers market (which she always loved) and enjoyed some spicy street food, hot Chai tea, and a Valentine’s cookie while we sat out in the sun in the park. She enjoyed the sun on her face and watching the dogs playing. She kept pointing, “Look at that one.” and so on as we sat there together.

“She was very verbal again and stringing a few broken phrases together. Her body awareness continues to be a challenge, sitting down is harder now. She was happy and talkative.”

I responded, “Nancy that sounds tremendous. It’s a far better day than I’ve been able to give her for months. What jewels you two people are. I hope you can appreciate how much joy I got out of this message.”

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.”

Never Run Out of Smiles

caregiving

Thin smile with a warm wrap

Lynne called. You said I’d like this place
I do. Activities, care, safe. Staff love you. You’ve got a hard job to walk — can’t remember, find words, figure things out. You’ve got to fight through it. You’re strong. You can do it. Where’s your smile? Everybody..
always loved your smile. You used it all the time. I was afraid you’d run out of smiles. I checked, though. You can never run out of smiles. Go give ‘em one of your smiles.
Slight chuckle. You always make me feel better. OK.
She stood up in a warm shawl, hair neatly parted, framing her face with a thin smile and walked out.

I can make her feel better, for a while. I can’t make her think better, ever. Nobody else can either, for a while.

Special Caregiving at Thanksgiving

Fun activities during Thanksgiving

Lynne and her friend the Thanksgiving Turkey

Aegis reported they kicked off the week before Thanksgiving with a little fun in memory care. The Health Service Director dressed up as a Turkey and spent some time with Lynne and other residents. Lynne’s the one on the left in the photo. 😊 Holiday decorations should keep up the spirits during the upcoming “Week of Thanksgiving.” Staff will deliver different types of deserts for the residents and visitors every day on the Outdoor Living.
Lynne has been active with weights, a hair cut and shampoo and outdoor walks. One day, she came back from her walk and entered the daily stand-up staff meeting. They were pleased to see her and gave her a chair.
Lynne’s still caring for staff. She saw a caregiver have an incident with a difficult resident and said to her, “You’re having a bad day.”
A nurse told me about another bad day for Lynne. A resident hit her in the chest, hard enough to have her chest looked at, but there wasn’t a visible injury. When she was shaken by another incident she witnessed, caregivers led her onto her bike. After she pedaled herself into recovery, they asked Alexa to play Madonna so they could dance with her until she felt safe and settled. Caregivers continuously resolve such disturbing behaviors.
We have a lot to be thankful for, including caregivers in tune with Lynne during the loneliness on holidays. Bless them.

Lynne’s Joy on Her Bike Ride

Fun activities

Lynne’s joyous on her first ride with her stationary bike. You can hear Dad cheering from her Facebook portal and the caregiver urging her on.
Special thanks to the concierge last night after I told her the bike had been assembled for use. She immediately went to the basement immediately and wheeled it up to Lynne’s room while the caregiver covered the concierge desk. Oh, joy!

Deciding to be a Hopeful Caregiver

video chats fun activities

Lynne called me to video chat because she was bored. Her caregiver was standing by.

”I’ll be back in a little while to see what you want to watch on TV.”

That was encouraging to know. I suggested we dance to music from her Alexa dot. She liked that idea. Then a resident slowly walked behind Lynne to sort through Lynne’s bedding. Lynne turned around to see her. She said hello and called her by name, “What are you doing here?”

She silently continued browsing. I suggested Lynne help her leave the room. Instead of walking over to guide her out, Lynne walked out of the Portal camera view toward her door. Meanwhile her friend continued sorting through the bedding until she found two books. She lifted them up to eye level with one hand and shuffled away toward the door. I heard no sound. I waited and hung up.

I felt helpless. I couldn’t help her help another resident. I couldn’t help her protect her books. I couldn’t talk with her. I couldn’t help her dance.

I decided to believe in hope. Lynne was no longer bored. And she was helping a resident; and she found her caregiver to help her; and they convinced the bargain hunter to return Lynne’s books; and Lynne could browse through other residents rooms to replace her books; and by this time she was watching her favorite TV show; and we’ll dance another time.

I also decided we need to keep sending her paperbacks because we’re stocking Lynne’s whole floor.

At least I cared for me as her caregiver under Lynne’s COVID-19 quarantine.