Meaning Persists Despite Seizures

Lynne with her 3 sons

We had two pleasant visits with Lynne in her new memory care floor without the anxiety she had felt earlier in the week. Thursday she was joyous as she recognized and hugged each son. Simon and Christoph spoon fed her lunch. At one point she saw me at a separate  table and smiled, “Oh, my Dad is here too.” On the way down in the elevator, Christoph said, “That’s the best I’ve seen her in quite a while. Friday I joined her to watch a game show on TV. I said, “By the way, I have some brownies for you. She surged forward with a nod of her and said, “Get to it, huh!” We laughed. We walked to the aquarium room with deep armchairs where we sat quietly. I watched her face go through one emotion after another: a light smile, a frown, an emphatic gesture to finish an unrecognizable statement, concentration as she scanned the area, and softening her muscles when she laid eyes on me. I remember loving to watch her emotions surfacing and vanishing across her face as an infant. She looked alert, loved, and relaxed.  I wondered if she enjoyed the companionship as much as I did. I stood up. “I gotta go,” and kissed her on her head. She tipped her head. “OK.”   

Saturday the Head Nurse woke me up at 7:45 am. They found Lynne lying on the floor in her room with a golf ball sized bump on her forehead, blood from a cut on the skin of her nose, and a cracked cartilage in her nose. Lynne probably had an epileptic seizure early that morning.  She had probably laid  there for half-hour before staff found her and put her in bed. The head nurse and the doctors believed she could not break her fall with her  hands because she had an epileptic seizure. Ambulance drivers took her to  Virginia Mason Hospital, during which time they witnessed a second seizure. As Carol and I stood by her in the emergency room that afternoon, she was thrashing in bed to get our the restraining cords on her wrists. Suddenly she yelled in a third seizure which lasted a few minutes while 3 nurses attended to her. Last year Lynne had seizures in June and August, after which doctors prescribed a minimum of Keppra. She had no recurrence for over a year, so we thought it was controlled.

I have read that approximately 10-22% of  patients with Alzheimer’s have at least one seizure. Seizures are more likely to occur with early-onset Alzheimer’s in the later stages. Carol and I saw her Sunday when she was still thrashing against restraints to keep her in bed. We will meet with her neurologist and Lynne’s Head Nurse on Tuesday to consider new prescriptions and their likely side effects.

Monday The VM doctor called me to say Lynne is resting comfortably. She’s pleasantly chatty. Keppra, Lynne’s epilepsy medication to prevent seizures, was seriously below expected levels in her blood stream based on her present dosage. Apparently she had not swallowed the prescribed dosage for unknown reasons. I’ll talk to Quail Park about why. The VM doctor and neurologist have prescribed the next level of Keppra which they believe will avoid future seizures. They will probably discharge her Monday afternoon after arranging delivery details to return her to QP.

We must wait to see how we might be able to care for her in a comfortable, meaningful life without seizures and unpleasant side effects. I am much more encouraged than I was late Sunday afternoon that we can maintain Lynne’s reasonable quality of life for the near future.

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.

Can I Do More?

I continually evaluate my responsibilities as Lynne’s primary caregiver. I want to give her the best possible care with her limited functional abilities in the terminal stage. Our caregiving team of family and friends try to minimize her malnutrition, pain, loneliness, and anxieties.

We have reversed her malnutrition dropping her 114.7 pounds two months ago and raising her to 131.4 pounds on July 22. She weighed 165 when she moved in. She eats double the proportions of meals for sedentary residents, four calory boosters per day and snacks in between. We are taking a blood sample to see if visible winces of pain are caused by nutritional deficiencies and a scan to see if she has fractures in her feet or planter fasciitis.

Visits erase her loneliness so I maximize the times family and friends can be by her side when staff leave her on her own. Caregivers spoon-feed her for breakfast, lunch, and dinner, so I visit with a Starbucks Frappuccino after breakfast, cut-up pieces of banana nut bread after lunch, and a cup of ice cream after dinner. She desperately reaches out and rushes to embrace me with outstretched arms amid smiles or sobs. We hug tightly as I whisper in her ear, “I love you, you’re OK now, you’re safe.” She releases her hold and looks me in the face as she holds my arms. She usually wants to sit and eat my treat. She calms down more. We walk up and down the hallways as she grabs and releases my hand over and over.. She no longer responds to photographs, cards, notes, stories, or news about anyone. I talk quietly about family as if she understands. I clip on her fanny pack with her cellphone playing Pandora music lists from family and friends.

I see her as she is: hair disheveled, focused eyes scanning the area with lips sealed, or whispering something to make a point she emphasizes at the end. She turns her blue eyes on me for confirmation, so I agree, “OK, we’ll do it.”, or I’ll take care of it.” She nods as if to say she appreciates my promise. She or I spontaneously laugh, a strong full-bodied laugh and we laugh together and it goes on longer. When we walk

I see her as she was: hosting parties, playing with her sons, climbing steep trails, talking with Karen. I feel as I did when Karen and I sat together at a peaceful time of day, sometimes talking, sometimes quiet, or on walks holding hands. When Lynne and I share dad and daughter love, connected, and without worry, I believe we have the same fulfilling connected life of love we had before her diagnosis. When Karen and I shared our love near her end, I believe we had the same fulfilling connected life of love before her diagnosis. It drives me to visit Lynne often.  

Her friend Nancy and friend LynnR brought her treats and loaded her into a car for nature time walks at Woodland Park. Lynne enjoys them because they bring sunglasses and hats, or what ever. “When we left, Nancy said, “Lynne gave us hugs and then was off to check on other residents.” God bless them. Lynne’s three sons visit her a couple of times a week and describe similar visits.

After 30-45 minutes of my visit, she is calm. I kiss her on her head and say, “Gotta go to work. I’ll be back after lunch.” She says, “OK,” and walks away as I slip away. I always wonder how long she’ll be OK, and whether I could have, or should have, stayed longer. I tell myself I visit her more than most caregivers, but that doesn’t relieve much of pain from her condition.

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/

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

Memories from Miles Away

Even though Susan lives thousands of miles from Lynne, she shared personal stories deep from her heart as a gift for Lynne. I shared the stories with Lynne and her boys, wondering how much Lynne would remember in her dimming light. She remembered Susan and so did the boys. We caregivers benefitted from those stories more than I expected. I have edited the three stories for brevity and clarity for you readers. After the stories I’ll summarize what they meant to us.

Lynne’s Office.  Early days working at Microsoft as recruiters, Lynne and I took an extra hour at our desks after the frenzy of candidates had left for the day to celebrate a hire or commiserate a no-hire. I would find myself walking to Lynne’s dark office with only her desk lamp on. It looked really calm in there. Her desk was always cleaner than mine. She was surely on top of it all. I wanted to be with her in her office in the soft glow of calm and confidence. She always greeted me with a smile for a quick chat that sometimes turned into an exceedingly long chat. We mostly laughed and talked about the “big nerds” we loved and how overwhelmed we were.  That shared experience proved foundational over 30-plus years. Somehow recently, I remembered to remember that gift, her gift, just down the hall from me day after long day.

Baby Roses. Early in 1997 Lynne shared she was pregnant with Henrik and Simon. IShe was in the very early days when doctors tell you not to tell anyone. She told me in the strictest confidence. I was overjoyed for her and Clemens. Lynne was beaming with happiness. It was contagious. I bought them flowers, baby roses to be exact, because Lynne always had a batch of fresh flowers from her garden, so another fresh batch would not indicate any celebration. I remember being proud I found a way to celebrate with her while not projecting her secret. It was our “inside joke.” What strikes me today is I didn’t care if my gift was premature. Her smile when I delivered the flowers said Lynne was delighted someone could simply join her in her joy. Not overthink it. Just enjoy that moment.

Saving a Stranger Dog. One day Lynn and I came across a large shepherd mix awake but not moving in the middle of a dirt road. We were on a hike, a girls getaway. Our heart sank when we realized this dog would likely die. Lynne got her car and together we loaded it into the back of the van. It had hundreds of ticks in its skin. I asked Lynne if she wanted a tick infested dog in her car. She looked at me and said no problem. The shelter tried to find the rightful owner. A few days later I called Lynne and much to my surprise, she was seriously considering adopting this dog, from a rural existence with so many ticks. I thought, Of course Lynne wanted this dog. This was one of those times that as Lynne’s best friend , I forcefully shared my concerns given her full house with kids, dogs, and cats. She was frustrated, maybe at me, I don’t know. I don’t recall speaking of that dog again. It never moved in with her.

I’m not sure Lynne remembered those stories, so it was a blessing for her to to hear them again. The boys enjoyed the memory of Lynne’s friendship with Susan through a lasting relationship, secret pregnancy celebration, and protecting Lynne’s family from self-inflicted trouble due to her overwhelming compassion. Those memories now live with her boys. I have vowed to share those stories with the boys. I don’t have those stories, friends do. And by sharing them in a network of sharing and posting, friends can see ways to care for all of us by sharing memorable stories with Lynne.

Lynne’s Crowded Table

The Sweet Savor of a Garden
Lynne’s Garden
Lynne When the Day is Done

Sunday Nancy and their friends drove Lynne through the red, white, and pink cherry blossoms in the Arboretum. She got in and out of the car more easily since she has gone for more rides. She talked. She expressed interest in going back to the Volunteer Park Conservatory. They walked through the green ferns and red flowers crowding the path with the sweet savor of nature compared to the sterile walls of Life’ Neighborhood.

Sunday Edith sent a song called Crowded Table written and performed by Brandi Carlile and her group the Highwomen. Edith was listening to music as rode her bike at the base of the Three Sister’s Mountains in central Oregon. “The lyrics remind me of the friendship shared and the journey with Lynne. That’s all I want,” thought Edith, “a crowded table. I was sobbing so hard I had to pull my bike over.” She sent the title of the song and lyrics to their friends and me hoping Lynne could hear it.

Our Thin Strong Lynne

The boys take her for drives daily now to get ice cream according to the concierge. They remark about presence is memorable compared to frail octogenarians surrounding Lynne in the lobby. Lynne’s thin body strengthens with the movement, hugs and talks with her boys.

She is blossoming with it. Sunday night she greeted me with a smile and reached out. She said, “I am happy.”

I choked up instead of saying something like, of course, or wonderful. Aegis activities and friends visiting fill me with deep appreciation compared to my solo activities. They’re more creative and the multiple bodies make it more comfortable for Lynne.

Nancy sent us all a cheer. Great Job Team (Lynne’s crowded table)!

Monday morning my eyes had tears when I read Crowded Table lyrics and pictured Edith sobbing on the side of the road. I downloaded it to Lynne’s Pandora song list. Crowded Table was the first song Lynne heard Monday when I put on her headphones.

Lyrics for Crowded Table by Brandi Carlie and the HIghwomen

You can hold my hand
When you need to let go
I can be your mountain
When you're feeling valley-low
I can be your streetlight
Showing you the way home
You can hold my hand
When you need to let go

Yeah, I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done.

If we want a garden
We're gonna have to sow the seed
Plant a little happiness
Let the roots run deep
If it's love that we give
Then it's love that we reap
If we want a garden
We're gonna have to sow the seed

Yeah I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done

The door is always open
Your picture's on my wall
Everyone's a little broken
And everyone belongs
Yeah, everyone belongs

I want a house with a crowded table
And a place by the fire for everyone
Let us take on the world while we're young and able
And bring us back together when the day is done
And bring us back together when the day is done