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.
Early before Lynne’s 2nd birthday party, she was crying, anxious, didn’t want to go. Why? Confined? Lonely? Isolated? Trapped? Embarassed? Caregiver Dorothy and I encouraged her. Dorothy escorted her. We had fun.
7/18/20 Christine, an RN on Lynne’s memory care unit sent me a message that “Lynne was having pain and discomfort in her left foot and first couple toes, and she thinks she has a hammertoe. I approved treatment with their podiatrist scheduled for a visit.
I was pleased. Lynne has mentioned foot pain periodically during her stay and we had frequently alerted revolving staff in her old apartment. We’d traveled to Bellevue to buy new tennis shoes that she loved for CrossFit workouts. In her new memory care unit we alerted staff about her favorite tennis shoes and red clogs. Her red clogs were fashionable and easy to slip on. A nurse told me the heels on Lynne’s black clogs were unsafe. They were from a different manufacturer from her red clogs, so I bought black clogs that matched her red ones.
Karen had always helped with her foot pain because, as she said, “Lynne’s got my feet.” That’s a bad inheritance. Karen had four foot surgeries, none completely successful. I watched Karen struggle with hers and she managed Lynne’s. Lynne had a podiatrist who helped her.
I didn’t know if Lynne’s pain was shoes, a hammertoe, a bunion, other toes, pain from a prior surgery, nails or whatever. Now we had a podiatrist scheduled to deal with it.
7/22 A friend of Lynne’s sent me a note that Lynne complained about pain in her feet. Others had also told me she’d complained it. I assured her friend we were aware of it and a podiatrist was scheduled to visit next week. It seemed solved.
7/26 On Sunday night, eight days after Christine’s email, Lynne called in tears about missing Mom and “…they they think I’m crying like a baby.”
Ever since her move, I was getting these calls even though she and staff seemed happy with the move. She was more engaged, perceptive and helpful. However, her medical care assessment indicated her mood swings were still severe. I focused on that becase I believed she was improving. Her moods swints were natural when adjusting to a location.
Over a series of emails and calls staff and Lynne’s sister and brother convinced me her sadness and anxiety are severe. She was facing residents whose minds and bodies were in worse decline. She had said, “I’m afraid.” Counselors at Aegis told me, “This is the hardest time.” We talked and I finally got a few laughs out of her. At the end I asked about her toe.
“Oh, it comes and goes.”
“How about now?”
“It’s a go.”
“Is ‘go’ a hurt, or doesn’t hurt?”
“Oh, it hurts.” She was in her black clogs, which was often when she complained. Why? They matched the red clogs. I was frustrated. I thought we solved that. Eight days and nothing changed even with a podiatrist visit? What did I have to do to stop it. I decided to calm down before venting and write this email in the morning.
7/27 6:53 am “I’m not sure who to write to, but I want better care for Lynne’s toe.
Even after all this time we’ve worked on her toe, she called last night because it hurt. I get the feeling that caregivers who dress her are not fully aware of the pain in her foot and which shoes she should wear.” I added that I highly respecdt their care.
7/27 The Medical Director responded that the podiatry visit was rescheduled because of a new lockdown from COVID-19 infections in Lynne’s memory care. That explained why Lynne felt such tearful loneliness Sunday night—nobody was there to talk to when she leaves her room.
7/28 9:35 am The next morning I emailed Duke, the general manager, copying the other managers. I used Ben Franklin’s technique of asking questions rather than ranting. I asked:
“Why wasn’t I informed Lynne didn’t have a visit from Podiatry?
“Why don’t we have recommendations to limit Lynne’s options for shoes that work with her current pain problem? Why isn’t there an understanding somewhere in the room, or reports, that Lynne has ongoing toe pain that needs to be monitored by everybody?
“Who should I count on for communications about her care?
“I’d like to have an explanation of her pain and her treatment as well as guidance for dressing her.”
Shortly after I sent it, Lynne called me through her portal because she was lonely and her toe hurt. I called the concierge and asked him to get someone up there to help. Very soon a caregiver arrived who took off her black clogs and put on blue tennis shoes.
Almost immediately a new care giver arrived, Renaldo (not his real name), under orders to examine her feet. As I listened through the portal, Lynne explained she had surgery on her right long toe and that’s where it hurt. He kept questioning and listening to her. He comforted Lynne. He comforted me. A med tech arrived with pain medication.
Renaldo left and came back after reporting to Sheila. Boy, was I uninformed. Lynne had pointed to several different toes on both feet as the source of her pain. He had squeezed every toe and checked every nail – no pain. He asked Lynne to show him which toe had the surgery. He squeezed it again and Lynne didn’t react.
Renaldo, Lynne and I developed a plan to replace her clogs. Lynne liked flip flops even though both of us recommended open toe sandals as an option. I gave up and ordered two different cushioned flip flops. They cost a lot less than black clogs.
Renaldo mentioned foot baths and Lynne said she loved those. So I splurged on a foot soaking basin and a supply of tea-tree-oil-foot soak with Epsom salts. If staff could keep her feet in that tub, she and all of us would feel relief.
7/28 12:29 pm Sheila thanked me for sharing my email to Duke and sent me a plan that shared my email with caregivers, required caregivers to report signs of pain to med techs and nursing, and reminded them Lynne must wear footwear that doesn’t rub her toes. The clogs were removed from her access.
Wanda called and introduced herself as the direct manager of her caregivers. They expect to receive COVID-19 test results in a day or so and be able to schedule podiatry.
8/1 Wanda sent me the attached photograph of Lynne loving her foot bath. She loves the flip flops.
8/2 Last night was I wondered why I was inattentive to her pain? Why did I brush aside comments from friends without looking into it more? How long did I let her suffer without finding relief. I reviewed my emails and realized I was focused on her severe moods and cheering her up. I felt staff was caring for her feet.
I’ve got to be more attentive and assertive about her pain management, actuallly all of her care. I knew that. Why do I have to remind myself of that at 79 years old?
Loneliness from isolation causes brain change that appears to speed up the progress of dementia symptoms, according to Teepa Snow, a world famous educator on positive approaches to dementia care www.teepasnow.com. Loneliness brain changes increase chemicals for stress responses and reduces chemicals for mental acuity, immune responses and breathing. Those were the symptoms that worried me during Lynne’s isolation: decreases in acuity to make decisions, remember names, and understand jokes, and increases in anxiety, stress and paranoia.
Teepa Snow explained these brain changes in a short podcast about loneliness and dementia. Better yet, she recommended practical care behaviors to overcome those declines. It was powerful. She relieved my anxiety about Lynne’s decline and gave me skills I could use.. They worked.
I used her lessons to create a customized “automobile restorative therapy” to relieve her negative brain change when I drove her to an appointment with her doctor the weekend after she moved in to her apartment. When I picked up, I shared my excitement about Teepa Snow with Curly, the Activities Care Director. He also thinks she is marvelous.
Encouraged, I followed her directions. First, be energetic to uplift her when you greet her. Second, pause, to let her respond with social skills to strengthen synapses idled by loneliness.
Third, make her laugh watching a funny video of dogs and cats escaping isolation that appeared inescapable. Fourth play music, Cat Stevens is who she likes, and pause as she sings the lyrics. She started slowly, but increasingly sang more lyrics as she listened to every song over the 20-minute ride. She said she didn’t recognize some of the songs and I didn’t either.
We socialized with staff and her doctor whom she’d known since before she was a mother. I asked both whether she was experiencing menopause and learned that ended years ago. I had no idea. Her doctor is satisfied with the low prescriptions of her antidepressant medications given her likely improvement after isolation.
We walked outside for over a mile in the sunshine to eat frozen yogurt. I reviewed the good news from Teepa Snow that isolation was affecting her depression, memory loss, anxiety, etc. She liked what she heard.
On the way home she listened and sang along with Cat Stevens. She asked, “Is this all Cat Stevens?” She was processing and generalizing. Good synapse exercises.
“ Yes, do you want to switch?” Pause
“No, I like it.” I stayed silent — steeped in a Teepa Snow pause cause.
I told my grandsons so they’d use the skills with their mother, particularly pause. Her son Simon said, “Yea, did you notice Curly use it when we had the Zoom conference on Sunday?”
He paused. I needed it — I was embarrassed. He was better trained. He plans to be a nurse and has worked in assisted living.
“Do you remember when they logged into the portfolio of participants? Curly pointed to each person on the screen and asked Lynne if she knew who that was. He paused after each one. She named them.”
I have so much to learn.
By the way, Teepa Snow’s care behaviors helped me, because the brain changes depressing me were the sames brain changes depressing Lynne.