Adding Weight to ThinLynne

On April 22nd the Hospice nurse qualified Lynne for 60 more days of Hospice, primarily because her weight continued to decline from 130 pounds to 120. She steadily lost the vigorous active muscle she had as Alzheimer’s inevitably drained her strength into fragility. Otherwise, she had minimal pain with moderate moods and no seizures.

Her weight loss left me helpless. I had fed off her energy whenever I was around her. Now I fed off her fear she would lose her balance as she had in several several falls. She was nervous about holding onto the arms of a chair to sit in it. I did not like to take photos of her because she looked like she was looked frail and fearful.

Lynne’s weight also threatened Lynne’s agreement to donate her remains to the UW Willed Body Program and the Alzheimer’s Disease Research Center for Alzheimer’s research, instructional courses, organ donations, and cellular research. She was proud of her generous contribution. However, a week earlier a representative of the Willed Body program informed me Lynne should weigh at least 100 pounds to be accepted into the program. I shuddered at the idea of them rejecting her and walking away. Their possible rejection meant we had to have a disappointing and unpleasant backup plan. More importantly, one hundred pounds loomed like a pitiless pit. The Hospice nurse was not aware of that limitation, but she was already upset with the weight loss. Lynne needed more strength and energy. Vibrancy would help her moods. The Hospice nurse had written an order to boost her calorie and protein intake three times a day. She would follow up to see if it was done. She thought caregivers had to record boosters on the MedTech’s daily report. I was thrilled. We could manage her weight instead of fearing she would totter on the edge of that pit.

On Monday the 25th I went up on Lynne’s floor when she was sleeping. I explained to the MedTech and a caregiver the importance of the nurses order to give her boosters to stabilize her weight, give her more energy and avoid 100 pounds. They were unaware of the nurse’s order and had not given Lynne boosters. I asked if they recorded boosters. The MedTech was new and not sure about recording boosters. The night nurse said they had not received an order.

The MedTech stepped back from her computer and looked at us. “I think they should give her more food anyway. She is always hungry and eats everything we give her.”

“Really,” I asked in surprise? I looked at the caregiver.

“I think she should get more food also.”

I turned to the night nurse. “How much additional food could you give her if she is always hungry?”

He shook his head in amazement. “I couldn’t give her additional food without talking to the Hospice nurse first. But I’ll look for the order and talk to her tomorrow.”

I left a message for the Hospice nurse. First thing in the morning the Aegis Medical Director waved me over. “We got the order today and sent it to the pharmacy for delivery. We’ll give it to her every day and record it. She got it today already.” The nurse and the floor supervisor said they would also give Lynne snacks when she appeared hungry.

Four days later Lynne stood in the hall looking at the wall until I called out. She turned unsteadily and uttered an “Oh,” with a smile pushing up her cheeks to chase away the sorrow as she spread her arms out to hug me. Her hug was so tight she almost tipped me over backwards. She sobbed and kissed my lips through my Covid mask.

I whispered, “It’s OK, I’m here now. Want to eat some frozen yogurt?” I wanted her to rest. She held my hand as we walked to a table in the memory care dining room. A young, spritely caregiver asked if we would like tapioca or yogurt.

“May she have both?” I wanted to get as many calories in her as possible.

“Sure. I’ll get you a spoon.”

I wanted to know if caregivers knew the boosters were delivered to the floor and whether Lynne had gotten them. “Did Lynne get her three boosters today?”

The spritely one said, “I didn’t give her one since I came up.”

The young, mobile MedTech stood at his computer on the medical cart. “I did not give her one either, but I’ll check.” He flew his fingers over the keyboard.

I wanted to learn more about what they knew. “Did the boosters get delivered?”

“Oh yes.”

“I’d like to see one. I want to know how many calories they have.” She opened the medicine refrigerator and gave me one. 250 calories.

The MedTech stared at his screen. “Yes, she was given three boosters today.”

I flexed my arms and chest muscles in a silent celebratory, ‘Yes!”

I spoon fed Lynne in between the times she gazed across the room ruminating on unknown thoughts, occasionally punctuating them with fist pumps. Other times she would close her eyes and rest her head rest on the back of the chair. She ate all 125 calories from Swiss tapioca pudding and 70 calories from Creamy Yogurt. We had boosted her intake about 1,000 calories. Success. I felt we might have the power to control her weight loss.

In a foolhardy flash of euphoria, I asked her, “Am I still the greatest dad in the world?” Long ago she had given me a t-shirt that said, “Best dad in the galaxy.” At Aegis she had told me I was the greatest dad in the world. She had told staff. Staff had told me she said it. They told me I was. But I had not heard it for a while. And I did not feel I was the best dad in the world Lynne after I had accepted her grave weight loss. I needed her assurance.

Lynne answered, “Yep,” with a firm nod of her head, emphatically emphasizing her feelings with an indecipherable exclamation while pointing upward with her left hand. The certainty of her sweet “Yep” surged through my ears to choke up my throat, swell my chest and send oxygen to warm my heart. She rekindled my confidence in Dad’s care for her. She convinced me, not with the sweetness of her certainty, but with the swiftness.

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.