Hospice & Palliative Care

On Tuesday, January 18, our family enrolled Lynne in Hospice and Palliative Care with Continuum Care of Washington. The goal of palliative care is to help manage Lynne’s pain and reduce the side effects of medication required for her treatment. The goal of Hospice care is to treat Lynne as a whole and manage her symptoms rather than treating Alzheimer’s. Continuum will provide resources for medication management, skilled nursing care, medical supplies and equipment, and spiritual and emotional support. Continuum was recommended to us by the Aegis medical director based on their relationship with Continuum Care for current and former residents.

Lynne will remain in her apartment at Aegis receiving its current hospitality services with the added support from Continuum services already provided to current residents. A Hospice nurse will visit her once a week and a home-care-aide two times per week under the direction of a new primary care physician and liaisons who can assist us when we need more help.  The Hospice nurse and home-health aide know Lynne and are excited to care for her, so Lynne should welcome the continuity in her new plan.

Continuum responded effectively and thoroughly since late last week to complete approvals and assign staff on Tuesday. We are pleased with the extra care Lynne will receive in her current stage and her new team. Continuum prepared a 90-treatment plan based on their current examination and will follow up with a second 90-day care plan, followed by successive 60-day plans.

Continuum accepted her for care because of concern for her weight loss, frequent wide emotional swings, and two epileptic seizures last summer. Continuum hopes their additional services could reverse her weight loss and stabilize her moods to permit taking her off Palliative and Hospice Care. Aegis staff confirmed other residents have been taken off. If Lynne is removed from Continuum Care, it would only be temporary because she is in the last stage of Alzheimer’s.

Lynne’s brother, sister and her boys support the extra services she will receive. Lynne continues to welcome phone calls and cards, and visits when we return to post Covid restrictions.

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.”

Shifting With Her Moods

Happy at 6:00 pm

At dinner Monday night Lynne was lackluster, listening to music on her headphones and verbalizing a few verses with her lips. She ignored her plate of gravy, beef, noodles and green beans, so I stabbed a bite of beef with a noodle which she let me put into her mouth. She let me feed her every bite. Staff gave both of us a slice of carrot cake for dessert with my own fork.

We walked to her apartment to watch TV, but after we watched repeated ads of Medicare Plan C, she said, “I can’t stand this,” and left the room. We laughed when we danced a little bit. We walked the halls as she went through multiple moods with tears, pushing me away, shouting at me, then smiling, focused, following me in and out of her apartment. She says, “I hate this place.” I tell her “Lynne you are safe here. Everyone loves you.”

Sad at 6:00pm

Finally, I turned her over to the nurse who said she had had a pretty good day, but she’d get her ready for bed. As I slipped out the door to the stairs, I heard her in the hallway sobbing and yelling, “What did I doooooo?”

That yell drove me to the edge of despair. What could I do? I had not helped her. I felt helpless. I expected and hoped she would switch moods again. And the nurse would help her, even sedate her. I closed the door and walked down the stairs. Her cry kept haunting me.

When I returned late that night, the caregivers said she had a pretty good night. They had the pack and headphones ready for me instead of having to look for them as we often do. With those readily available, them watching me feed her, offering me cake and my own fork, and now their assuring me they calmed her down, I felt like we were a team to give her care in this more depressing part of our journey. Her determination inspires us all  

Sad and Happy Times

Sunday night she was wearing her cotton salmon sweater and tights with both shoes on and matching green socks. Her face was deadpan. She sat in a chair next to the large TV Screen facing the residents who were watching the TV. She had on her fanny-pack, but her headphones were on the medicine cart. I put them on her, and she focused her eyes as she adjusted the fit until she smiled. I am not sure how often she enjoys them. She kept them on while I was with her.

She likes to go down to the lobby. I hugged her in the elevator and told her she was beautiful. She grinned. I said, “That was good. Can I give you another? “ Yes.” I hugged with my head on her other side. “There, that’s my left side hug.” She laughed, pushed me away. “Dad, stop.”

We had to eat dinner in her room with the new Covid- Omicron precautions. I took up the dinner with two small plates of shrimp and noodles, two chocolate marshmallow ice creams, and two cokes. Her two-person black table only held two small plates and the drinks. Lynne sat with one knee crossed over the other without eating before leaving to walk. She roamed the room until she opened the door and left. She frequently walked away from dinners in the lobby where I could watch her until she circled back to sit down. I wondered what to do up here? Walk with her as the food got cold?

I decided to brace the door open with a hand weight. I ate a few bites and decided to move my chair out to the doorway where I sat until she walked toward me. When she saw me, I invited her into dinner, but she sat on her bed. I was upset she was not eating dinner because her weight has dropped by over 20 pounds. I wanted this to work.

I stood over my plate to demonstrate eating the tasty shrimp, which lured her to the table to eat with her fingers until I got a fork inro hand.  Then she left the room, and I went back to my seat in the doorway. I got some funny looks from caregivers, who helped point Lynne toward me. She returned and sat on her bed until she got up to sip her coke and left again. She came back to eat half of her ice-cream and later I spoon fed her the rest.

I wondered if she would watch TV, so I moved her table to where the stationary bike was located and moved it beside the window. I scanned channels until I got the Time/Life ads for 10 Bob Hope CDs with jokes, celebrities and beauties galore. She ignored it. Nothing worked, but I could not quit.

Sometimes she returned to sit on the bed calmly and sometimes in tears. I held her hand and said, “You’re safe now, you’re OK.” And she would settle down until she left again.

I took the tray out and shut her door. She and I walked, sometimes letting me hold her hand, sometimes folding it on her stomach and not letting me nudge it out. She had tears, turned down mouth and sagging face. She would purse her lips, grit her teeth, and pull away from me, saying, “I can do this.”

Finally, she returned to the chair by the TV with her arms folded and one knee crossed over the other staring in the distance with an expressionless face focused on the music in her headphones. She ignored an inappropriate savage war movie.

When it ended the nurse switched the channel to a peaceful video of Northern Lights to blend with the classical music from the Aegis hallway music. Lynne stood so I slipped off her headphones as she headed to the nurse who hugged her and said, “I’m always so happy to see you.” Behind Lynne’s back I waved thumbs up to the nurse and she nodded goodbye.

My thoughts are spinning around the increase in Lynne’s sad moods, restlessness, and awkwardness. I was disappointed, upset with myself. Why? I knew this was coming. I expected it. What did I expect of me? I expected, maybe hoped is a better word, to find ways to rinse away her sadness at every passage. I don’t like to feel like I’m failing. She’s failing, but I have trouble failing her. I’ve got to find news ways to help care for her. And give myself some grace, I guess.

True Influencer at 12

Lynne holds an unseen photograph of Katie’s two grandchildren from Katie’ son, the boy Lynne babysat.

Lynne’s 6th grade teacher, Katie, was so wonderful Lynne wrote notes and announcements to her over the last 40-years. Katie sent this to Lynne and all of us for Christmas 2021.

“Lynne, I was just thinking about you last week when I saw a young girl winning a spelling bee. Back in your 6th grade the Lansing School District decided to hold a district wide spelling bee. In our classroom you and Jeffrey were the last two students standing, and with the next word Jeffrey misspelled it and you won.

At that point in time you were so disappointed that Jeffrey lost — you had been coaching him and he was working very hard on the spelling list — that you came up to me and asked if you could pass the win to Jeffrey. Long story short. we called in the Director of Curriculum who ruled that you were the winner according to the rules.

That day was a day when you became a teacher of the year in a room with 28 other people. You taught all of us the beauty of a perfectly unselfish decision. There are so many wonderful memories I have of you during the last year you were in elementary school, all of them delightful.

However, that one memory will always stand out: you were a true influencer at the ripe age of 12. After your example of kindness, the entire classroom became a team of one, more careful of each other’s feelings and less quick to tease.

The curriculum director had a second thought about a district wide spelling bee and simply let classrooms have the national list if they wanted to participate as a classroom.

So, Lynne, just another reason to love you and thank you for all you have done for other people everywhere. Love Katie.

P.S. Lynne’s Alzheimer’s had not erased her memory of Katie and the spelling bee.

Christmas Visits

Christmas Visitors. Yesterday Nancy reported they did a short walk outside in the fresh air and inside at Aegis. She saw many friends followed by a little chocolate goody and looked at mountains on the top floor for a nice visit.

Lynne told Nancy her foot hurt a little bit and at lunch today told me her toe hurt, so I took off her sock and there’s quite a crust underneath her nails on two toes. We showed them to staff, and they’ll call for the podiatrist to clean that up. WeI think keeping her shoes loose she’ll be OK. She wasn’t wearing her shoes this morning.

I shared a Christmas card from Susan, a former caregiver at Aegis along with Pam’s (Mom’s) fudge. Last night we listened to Christmas stories from Craig and a nice dinner.

Tomorrow I ordered a birthday cake for the Life’s Neighborhood residents to celebrate Lynne’s Mom’s birthdate.  Thursday her brother and his family plan to come down Thursday when the weather is better.

Breakout Visit

Lynne and I broke out of Aegis to go to Cafe Flora, a vegetarian restaurant on Madison. We ate artichoke and spinach dip with sourdough bread and a polenta with mushrooms entree. It took a while since Lynne wanted to explore a few times without her mask, making it an interrupted, but satisfying dinner.

We also celebrated a Christmas party at the Social Hour with a performance from the Aegis resident thespians.

Lynne is free to be visited in the facility or take her out for a walk or visit. You need proof of vaccination and picture ID to see her or take her out. She’s holding up well, considering.

Covid at Lynne’s Facility

One (1) staff member at Lynne’s assisted living facility  tested positive for COVID who was fully vaccinated and had received their booster shot. The staff member was appropriately health screened prior to each shift. Tuesday, 12/21, Aegis will complete molecular testing on every resident and staff member. They will inform everyone when results are available.

My search of the Internet says it takes days and depends on the lab schedules.

Birthday Party with Covid

Lynne, Photos, Pam and Covid

Ten of our family members and a colleague threw a superb birthday party for Lynne at Aegis assisted living on Saturday the 11th, less one granddaughter who joined us by cellphone from her campus in Montreal. Each person shared fond memories from pictures and cell phones to mix into a swirl of celebration as Lynne and everybody recalled old haircuts, dresses, skirts, outfits, hairdos and bodies from birth to motherhood. Lynne stayed engaged in her chair for an hour-and-a-half as she felt everyone else having as much fun as she did.

On Tuesday Pam called from Chico, California to say she had Covid, and her husband had symptoms that were later confirmed to be Covid. All party goers have tested negative, including Lynne who had to go into quarantine from external visitors until her second negative test this coming week. Pam’s fever broke last Thursday, and her husband is recovering from his symptoms.   We feel blessed and fortunate we have contained Covid.

A Bumpy Ride

Caring for Lynne with her Alzheimer’s can be a bumpy ride to be sure she is well fed, cheerful, happy, safe, pain free, and enjoying love from Aegis caregivers and friends staying in contact.  #Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #endalz @ALZAUTHORS @james_s_russell

Caregiving for Lynne has become a bumpy ride.  A few nights ago, I arrived at 5:45 pm to see Lynne leaning backwards, tilting to her right with her right hand on the small of her back. She looked calm until she saw me and broke down in tears pleading, “I want to go home.”  I hugged her a while.

“He kicked me.” Who? But she did not answer. I said, “You’re OK now.” She stopped crying. A little while later she turned to me with wide eyes, “He kicked me hard.” A caregiver said no man on the floor could do that, and I have not seen one. Staff agreed she had been leaning backward since this morning. Another caregiver told me she saw Lynne leaning and guided her back to her bed to avoid another fall backward. Staff, including the head nurse, did not know what else to do. I suggested they find a gait belt used by physical therapists to hold on to unsteady walkers. I hugged her and pulled her forward on her feet and I think she walked a little straighter when we went to dinner.

I read her notes from friends and fellow students who earned their Masters at Seattle U when Lynne was attending. A professor had contacted me and helped link us together. She remembered Katie, her 6th grade teacher, JT and Terry, students who remembered her fondly. I hope to get us all together.

She ate little but finished her diet coke. Said she was in pain and said it was her foot, so I took off that shoe, but a short time later she wanted to lie down because “it hurts.” Caregivers and I can’t find the source of her hurts, but that day she may have had lower back pain from leaning backwards. When I returned at 10:00 pm to pick up her headphones to recharge, Lynne had stayed in bed for a while until she walked out of her room to say her feet hurt. The med tech massaged them and put her back to bed.

The next day I arrived at 5:50 pm I was told Lynne did not lean backward that day and had a pretty good day. She was in the Life’s Neighborhood dining room without her headphones and scared of somebody. I put on her headphones, and she settled down as she listened to The Chicks. We walked the floors a little while until we ate dinner in the lobby. We had two dinners of chicken cordon bleu, peas, rice and apple pie with ice cream. I sliced her chicken and when I finished mine, she said I could eat her chicken until I had three small bites, when she finished them with her fork. We ate our pies and ice cream. We had a mellow time as she nodded her head to the music and mouthed some lyrics.  A few people came by to say hi.

We joined a party on the sixth floor where we drank pomegranate cocktails as we chatted with other residents. We walked down each floor meeting caregivers and people until we reached her floor. By that time, she was cheerful, sang, smiled, said I love you, looked at TV and said out loud, “Call the Midwives, which we watched we until she asked to go to bed at 7:25 pm.