Moving Caregiver Stories

We have agreed to move Lynne to a care facility dedicated to residents with Alzheimer’s and other dementias because we believe it would be more comforting for Lynne. We greatly appreciate the current care she is receiving and we know staff will miss her and she and we will miss them. We have visited three facilities, two of which rejected her, and one which has accepted her for care.

  1. The General Manager and a RN observed her behavior and reviewed her care from professionals and medical records. care M/ln approved Lynn for Care on floor.
  2. He agreed to accept her on the floor with the most advanced residents in a quieter environment on conditions we switch her care to a nearby visiting physician from Swedish, agree to changes in medications, and adding podiatry visits.
  3. We reserved and individual room for Lynne.
  4. The GM/RN went the extra mile to thoroughly review Simon’s records and question Simon on his knowledge before signing off on his paperwork for the CNA exams. gave him a questioning and signed off on all his paperwork for CNA.
  5. Simon plans to apply as a certified CNA at Lynne’s new facility.

Nancy Hilpert, a BFF since the 1980s, and another of Lynne’s friends have been frequent visitors with an aggressive style of care Lynne has enjoyed. Her story below gives you an excellent view of similar caregiving I have been involved with for months. It’s a compelling, loving story, and I urge you to read it for inspiration it offers for any caregivers for persons with dementia.  

The Buddy System

Nancy Hilpert

A Sunday at Lynne’s assisted living begins with Linda and I meeting at the lobby around 11:45, in time to feed Lynne her lunch. We talk about taking her to the north end of the Lake Washington Arboretum today, there is a nice shady path that leads out to the water, and I’m hoping she’ll be able to make it all the way to see the blue tones of the lake, white capped by the breeze.   We enter the elevator and punch in the code to access the memory care floor.  When the doors open, Lynne is straight in view, she’s hunching over, as if in pain, a posture we see her take frequently. We’re not sure what its about: back pain, catching her breath, restabilizing her emotions? Maybe it’s a bit of all.  As she looks up and sees us, her face becomes a screen displaying a range of emotions rapidly arising and passing: surprise, joy, fear, shame, anger, disgust, sadness, desolation. She emits a sound that seems to be both a cry and a laugh, simultaneously arising. Once that would have been a moment of philosophical recognition, about the ever-changing nature of our emotions, how we are just cell sacs, walking electro-chemical reactions, how it’s a miracle that we can communicate, commune at all.  But the time for those conversations has passed: now we’re just living in the shit of it together, seeing how we eat what we’re dished out.  Somedays we take that knowing with the lightness that frees us from the mental burden; somedays, like today for Lynne, it’s a heavy weight to carry, and it drags us down to our lowest.  She is cycling, and the emotions are strong, she’s pushing us away, and telling us ‘go away’ ‘go home’ ‘not today’ in a tone that tells us she’s had it, she’s already blown her top and there is still more to come. Linda and I both look at each other and share an empathetic shrug–it’s just a sucky day and we will do our best to help our friend through.  We could just turn around and say it’s a bad time to visit, we’ll come another time. We could decide to just let the caregivers deal with the challenge of settling and feeding her. We could just hang back and wait, talking amongst ourselves.  But we soldier on, encouraged by the company and commitment of the other.  

I head down the hallway to check on the status of lunch and see that everyone is still milling around the cafeteria waiting for hot food cart from the cafeteria, the MedTechs hanging around the counter, getting the more docile residents (of which almost all of them qualify, the average age on this floor looks to be 80+ if you take our young friend out of the calculation).  Their bodies just don’t have the strength, balance and energy that Lynne’s still does, even as much as she has declined.  She is tall and strong, and today, Linda and I feel just how much the weight gain has helped–she pushing us and pulling our arms, twisting our bodies, almost pulling Linda’s shirt off at one point (I told her to make sure she wears a good bra on Sundays!), and at one point had me in an arm lock so I couldn’t move.  She comes charging around the corner and whips through the small aisle between the dining tables, grabbing things, touching people, at one point making an aggressive gesture toward a resident who is wheelchair bound. The floor nurse sees this, and I make eye contact with her and nod, gesturing to her that we’ll pull Lynne away from the residents, and back into the hall.  A few moments later she’s there with us, chasing an avoidant Lynne down the hall w/ her syringe loaded with some kind of psychotropic, something to calm her down, she says.  The floor nurse is our size, and we watch her tiny form try to subdue Lynne long enough to get the tube in her mouth. Lynne is pulling away hard, shouting: No, no, no, never again. I won’t. Stop.  And she’s cry-shouting, her face melting into tears and redness.  Linda and I are worried that Lynne is going to take this resistance too far and I say in an assertive tone: “Lynne, she’s trying to help you. Please cooperate.” Linda is muttering under her breath: “She’s gonna kicked out. Or drugged.” And we both commiserate, this is exactly the kind of behavior that we’ve read about, and it gets people kicked out of care homes and blackballed as Aggressive and Uncontrollable. Just then she aggresses toward The floor nurse, and we see her hands grab at her throat, and we both move instinctively to grab her arms and pull her away; we can’t help but chastise Lynne with a warning tone in our voice.  But The nurse is as tough and gentle as her job demands, and she is neither frightened or deterred by Lynne’s aggression, as we turn back toward the cafeteria, I apologize on Lynne’s behalf and ask her if she managed it. She says, no worries and confirms with a sly smile, she’ll feel better soon. I thank her and count this blessing: an angel and a true professional in our midst.

We make it our goal to keep Lynne away from the other residents until the meds kick in or lunch arrives, but she doesn’t want us near her either, so we just follow along behind her and use our bodies like curbs to get her to change course.  We take her outside on the deck and get her to walk out there. She’s cursing and I join in Fuck this, and fuck that too! I make a joke about how nice it is to have her saying my favorite word unfiltered. We have a little conversation with her about what is going on and how confusing it must be and that it’s OK to have shitty days–we all have them–and remind her she doesn’t need to fake it around us.  Out there in the relative silence we can suddenly hear the music coming from Lynne’s fanny pack — it’s Olivia Newton John singing something from the movie Grease.  Fuck, Lynne, no wonder you’re cranky, If I had to listen to ONJ’s whiny falsetto before lunch I’d be angry too, and this makes Linda laugh and then Lynne laughs too. She’s laughing and sobbing at the same time and it occurs to my inner stoic that’s pretty much life: I was sad, I cried and then I laughed about the futility of it all and became happy, the end.

Back inside we can hear the tinkle of metal on porcelain signaling that lunch service has begun. We walk with her around the square hall to the main dining/living room and I arrange three chairs around a table in the side parlor, where no one else eats. Then I speak with one of the staff, to let them know where to bring Lynne’s food, which is a special plate, today puréed pinto bean patties and pureed sweet corn.  We get her into the quieter room away from the others and corner her into the center chair, but at the last moment she shifts her weight and moves to the next door chair. We go with it, and shifting direction, I grab a spoon and Linda holds the plate nearby, while I position my body right in front of Lynne, so as to block her movement. I offer her spoonfulls, which she accepts distractedly.  She’s fidgety and keeps trying to get up, and so we let her stand and then maneuver her into the center chair again. More food shoveled in. She’s now grabbing at it with her hands, and Linda holds the plate close to let her take a fist full, which she shoves into her mouth, chunks falling off onto us and her clothes.  Linda disappears for a moment while I hold the cup of water up for Lynne to drink, then she’s back with a stack of paper towels.  By the end of the meal, the towels have been fully deployed, her pants and top look terrible, full of brown and yellow specs of mush, but we don’t care. Lynne has cleaned her plate and we feel triumphant!   She’s still cycling, but not as fast and furiously, and she’s very verbal–lots of talking in angry tones about ‘what she did’ and ‘they’ and “he didn’t tell me” and other crimes against her agency. We feel for her and we know it’s a risk in her current state to try anything more, but we also know that the antidote is getting her out of here. 

We ask he if she wants to go somewhere and she answers with an urgent Yes!  I stop by the dining area to find The nurse and let her know we’re taking Lynne out. She has a worried look and tells me softly that she is still agitated and that she doesn’t recommend the trip.  I tell her that we understand the risks, but our experience has taught us this will help.  She gives a hopeful nod as I walk away.  Downstairs we have a smooth check out: I walk behind with Lynne and Linda races up to the front desk to sign her out on the kiosk. The dear Concierge is ready at the door to punch in Lynne’s code and as we stride out into the fresh summer air and Lynne feels her relative freedom, and I watch her posture change, her mood shift and the stress creases relax in her face as her whole nervous system resets. “It’s nice out here,” she says and we can’t agree more.  She’s moving well. I say to Linda, “I feel like she could use an outing.  Let’s start with some food and then see how it goes.” We agree on this tentative plan. Lynne gets into the car with a bit of coaching, and then we head off to Macrina Bakery listing the items we want on the way. Linda will do the procurement while I hang out with Lynne in the shade of the car.  With the windows down and the music on, a calmness settles over her and she starts to take in her surroundings: she points out a cute dog, and giggles at a little baby being carried in her fathers arms. She hums and clucks and whistles and giggles at my silly jokes. We lean in and talk and she tells me in broken sentences and half-uttered words what’s going on for her and I respond with encouraging words like, tell me more and that must be difficult, and you are very strong. We sing some songs together and hum along when we forget the words and it feels like old times, like a normal hangout, until I look down and notice that she’s got one pink sock and one blue, that she has a long crinkly hair growing out of the middle of her chin (is it more cruel to cause the pain of pulling it out or to leave it there to be noticed, I wonder), and she smells a bit like sweet salty sweat and something more musty, (maybe feces?) and her shoes give off the odor of gym sneakers.  I scratch my leg and come back with some yellow powder in my fingernail: “Lynne, I think I just scratched some of your lunch of my shin,” and she gets a big laugh out of that. It feels good to smile with her.

When Linda returns with her hands full, I jump out to grab the iced latte and water, while she gets in the backseat with the food.  Lynne reaches for her coffee and I move the straw to touch her lip, and she takes a long happy draught.  Pretty soon the hot quiche is passed up in its box and I take a bite to taste it before Lynne voraciously consumes it w/ great pleasure.  Linda and I both love this quiche but we don’t indulge it much with our middle-aged metabolism, so we take delight in the fact that our girlfriend can scarf down all the high fat food she likes.  Linda likens the treat to an egg and cheese pizza, and that’s about right.  More coffee to chase it down, and then the apple fritter is passed forward, and I rip off a piece for Lynne to try. Its made in a soft croissant dough that is easy for her to chew, so I hold the pastry up to her mouth and invite her to dig in…she’s not sure at first, but then gets her mouth open wide and pushes the sweetness in and takes a big bite. Oh yeah, that’s good stuff she lets us know, and Linda and I shine with pleasure at seeing her chewing until she swallows. 

Things are going well, so we decide to roll the dice and head to the arboretum, where we can park and take Lynne on a short walk across a pedestrian bridge to Foster Island.  Lynne is moving well and we have a good walk over. She handles the gentle incline well, and again oggles at all the babies and doggies, paying little attention to anything else.  Linda gets into one of her stories, dramatically toning the events. Lynne having had enough, turns sharply toward us, saying loudly, ‘talk, talk, talk!’ and then turns as if to walk off in a huff. That’s the reminder we need to pipe down and be less verbal.  She does well, but tires before we get to the lake–I urge her, “Just a bit more so you can see the water?” But she has become a bit cranky, and we notice she’s not walking as well now, and confer that her bunion is probably bugging her and that we should turn around. Now, the difficulty begins because she refuses to be directed or bossed, and when she revolts, her reaction is to turn around, and head back toward the lake, in the opposite direction of our car. This has become a common challenge when we walk with her. The trip back becomes a circular path, she heading opposite, us trying to turn her around, her resisting our control, us giving in but then drawing the line when it gets to futility. If we take a stern tone she rejects our paternalism.  If we pander and try to sweet talk her in our little kid voices, she mocks us with embarrassingly accurate likeness to our voices.  We own it, and say, “OK fine, we’ll talk to you like a friend then.  You need to stay on this path with us so we can get to the car. Otherwise, you will be in more pain.”  Some combination of persistence, patience and trust works together to help us on our way and we do get back to the car.  She is antsy as I drive home, and draws my disapproval when she slips her seatbelt off her chest.  I tell her, “No Lynne, that’s not safe, and you need to keep it on.”  She complains and acts like she doesn’t know what I’m talking about, and I invoke my inner mother, by somehow safely driving with one arm while using the other to put the belt back in place. At a stop sign, I look her in the eye and tell her I need her to be good in the car and leave her belt alone.  She drops it after that and alternates between putting her feet up on the dash, which I remove with a swipe of my hand.  We get her checked in and back to her floor with relative ease and even though her moods are still swinging a bit, we have returned her in much better shape than before.

We are both relieved and a bit surprised at how well things went given where we started the afternoon. As we check out at the front desk, I see The nurse in the lobby and approach her and say, ‘we made it!’ with a chuckle, acknowledging our good luck. She smiles with relief–I know she was truly worried about what might happen and whether Lynne was stable enough. We saw that as a possibility too, but we also know, through at least 50 different experiences over the last 14 months that going outside, getting out of assisted living, helps Lynne, that she reconnects to herself, as if her nervous system responds and finds a new equilibrium.

 I ask the nurse if Lynne has been generally expressing agitation or if it’s just a bad day. The nurse indicates that the condition is progressing and her mood swings and aggressive behavior are increasing. I thank her for her patience and understanding and apologize for Lynne’s earlier transgression. She comments that her behavior is expected and not a problem with staff, but when she starts aggressing toward other residents, then that will require a response. I ask her if they will have to increase her anti-anxiety meds and she mentions consulting the psychiatric nurse. She is eager to remind us that, ‘None of this is Lynne’s fault, we know this is the disease.’ I’m so happy to know Lynne is held with such compassion and skill.

Linda and I debrief for a few minutes in the driveway–Lynne’s family are frustrated and looking to move her.  We had a fire drill last weekend, where Jim texted us the day before and told us he had found a nice quiet home and requested our help to move her there the next day! Wow, I thought and wondered whether this choice would work out, and how Lynne would handle the confusion of the transition.  It turned out to be for naught becuase the nurse/manager of the home decided overnight that Lynne was too much for her team to handle (big surprise!). Linda and I heard this news with relief. We have done our research and we know our friend. A quiet home with physically subdued and cognitively unavailable people will drive her nuts. And she needs space to roam and stretch her long legs and work out her nervous angst. She needs to be in an active yet quiet place with lots of cognitive well caregivers. She’s treated like a rock star and a special person, partly because of her young age compared to the rest of the residents, but also because the staff respect her as one of them.  They know she was a skilled caregiver and special education teacher.  They respect the resilience and self control she has demonstrated all these years. They have skilled and compassionate staff. They know her and everywhere she goes, no matter what floor, people, staff and residents and guests alike greet her, want to speak with her, treat her with honor.  We doubt any small private facility will have the space and stimulation that she needs.  We hope together that she will stay here where it is familiar and safe and caring. Or that Jim can find another place where the staff will love her and are not shirk from her condition, where she can get better meds and therapy for her current state. 

And we are not afraid of her either. We know it will be challenging as cognitive decline progresses, but Linda and I are strong, we are durable, and we are united in our commitment to help Lynne have at least some semblances of real living every week. The Girl Scouts are right: the buddy system works.

Lynne’s Weight Loss

Lynne weighed123 pounds today. 😂😂😂

123 reverses a frightening weight loss. On April 22nd the hospice nurse fought back against Lynne’s apparently irreversible weight loss from 130 pounds to 120 since January with an order for. three Ensure calories booster per day. She ate it all. 👌 Visitors added snacks. Lynne ate it all. 🤞Lynne’s weight declined to 114.7 pounds in May. Lasts week I asked if she could get a double dose of the prescribed portions because she is an athlete compared to sedentary residents. They immediately doubled her portion. 👍Today on June 22nd they weighed her again. 123 Pounds. We reversed the decline. 👏👏Staff on her floor were celebrating. 💕 We shared hugs.

Visits: Ups Downs & Ideas

Karin Lynne Nancy

These are experiences from recent caregiving with Lynne over the past week, starting from the most recent. They are glimpses into the current caregiving for my ever-loving daughter, Bless you, all of you who care.

A friend who worked at Aegis sent me a card with a favorite story for Lynne. “I loved it when you always stopped at my office when you went looking for your favorite coffee cup.” I have the cup. It is a double sized cup with a message to “slow down, calm down ….” I am showing Lynne the card and the cup when I see her today.

Last night as Lynne and I sat in the lobby after ice cream, I learned my beloved older sister was found on the floor of her house after a stroke. The left sides of her face and arm drooped. They flew her by helicopter to have brain surgery to stop the bleeding. Her daughter is a nurse. She was not worried about her surgery, but was worried about her quality of her life. I told Lynne. She gasped and raised her hand to her face. “Oh no.” The concierge got her upstairs while I called my children. This morning I heard the surgery cleared my sister’s clot. She shows some deficits in her left leg. There is hope for a strong recovery.

At lunch yesterday, I brought Lynne a Starbucks vanilla Cappuccino. She downed it with the rest of her meal.  Staff is trying to keep her seated because she continues to lose weight from her walking. Staff and I reviewed a problem earlier in the week when she did not get her calorie booster because the supply in her apartment ran out. The Med-Tech had not been told how to reorder it. I told him to use the Aegis supply because it is a prescription. That worked, but it did not solve the organizational problem that staff did not know what they were supposed to do. “I told everyone,” said the supervisor. I suggested a sign on Lynne’s cabinet. The head nurse said she will reorder it herself.

When lunch was over, Lynne’s friends, Nancy and Karin, showed up with a large cup of coffee and lifted her out of her chair to take her outside for a walk. She went willingly. They had a hard time keeping up with her because she was ready to go. Good walking, balance, good talking. Lynne told Nancy off a couple of times including, “You go do your own thing.”  

Wednesday, Lynne’s friend Sandy from the neighborhood, walked with me though the Arboretum as she shared some alternatives to visits. She and another friend believe their current visits upset Lynne. She doesn’t recognize them and tells them to go away. Sandy is a speech pathologist who works with people in assisted living. She had some ideas from her experience. Since Lynne has tunnel vision and cannot distinguish details, Sandy suggests we show her a large blossom like a Peony in one hand without a stem. She may be able to hold it briefly. Another idea is to give her something with one of her favorite colors (blue, red) such as a piece of paper or a small pillow. She recommended a small toy breathing dog she has seen soothe one of her patients. I ordered a breathing German Shepard puppy.  Sandy will keep thinking.

Tuesday night Lynne was agitated when I visited her. We walked around the floor as she talked aggressively from random thoughts in her mind.  She pointed at a display of family photographs on the door of a resident. I turned my back on Lynne to look at them closely. I said it was a nice way to decorate her door. She said, “No,” and shoved me toward the door. I was off balance as I stumbled to my right, but she shoved me again so hard I fell backward into a cabinet on the wall. My forearm bled from a gash two-inches long and one-inch wide. I wrestled off her headphones as she walked the other way toward the dining area where staff could care for her. I could not. I slipped away without saying goodbye.

I am grateful for all the support she and I receive. We persist.

Dad in Live Interview

JOIN US FOR OUR UPCOMING LIVETALKS
A Daughter’s Alzheimer’s Diagnosis
Being Patient.com will speak with James Russell about his daughter Lynne’s early-onset Alzheimer’s. As part of our LiveTalk series, James will share the ways Alzheimer’s has affected their family, and his gratitude for all those who have supported them along the way.
RESERVE YOUR SEAT: Thursday, May 18th at 2:00 p.m. PT / 5:00 p.m. ET

Being Patient is the leading online community for Alzheimer’s & dementia patients & caregivers. https://www.beingpatient.com/

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.

Podcast about Lynne’s Care

I hope you will be interested in an interview with Jim Russell for a Podcast about all the care Lynne receives. The Podcast is a production of the University of California Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND). They are the University’s center for aging and dementia research, with our faculty seeking to understand the causes leading to neurological disorders such as Alzheimer’s disease. They had thoughtful questions added information for me. I hope you enjoy it.

https://www.buzzsprout.com/1589794/10294312-caring-for-a-child-with-early-onset-alzheimer-s-disease-with-jim-russell

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.

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.”