Lynne studied my wedding photo the 29th. She had adored it countless times. I said, “I miss mom.” She teared up, sorrowful, “I miss Mom.’” We repeated it. I said, “She loved you so much.” She heard it. Alzheimer’s caregiving includes sharing sorrow.
Lynne Mom Dad Memories
Lynne’s mom and I married 11/29/63. After Lynne’s diagnosis they loved, disagreed, & agreed daily. Mom’s hospice was moved to Lynne’s facility to be with Lynne. Seeing us together, Mom said, “I am seeing a miracle” Lynne still says, “I miss my mom.” #alzauthors#endAlz#caregiver
Reduce Lynne’s Unrealistic Goal
Lynne loved visiting my mom for hours and hours in Mom’s early Alzheimer’s. Lynne set a goal to be as happy as Mom for my sake. Mom was retired. Lynne lost her sons’ futures, friends and a career. Happy led to failure. I regret not helping her understand that #alzauthors#endAlz
Podcast About Lynne’s Care
Part 1 of at two part interview on the Rodgerthat.show about my caregiving for Lynne is on the Podcast at the URL below. I’d welcome any feedback. #endalz#endalz
Understanding Why Lynne’s Upset
22 I believe Lynne always communicates when upset. She shook her fist at a chair seat pointed to a dining room wall. I turned it around and put it at a table. Lynne nodded her approval with nicer phrases. I listen, yet understand only a fraction of what upsets her. #endalz#alzauthors
Let It Be
#Alzheimers #Alzwa #alzauthors #alzheimersSpeaks #caregiving #endalz
A week ago I received a report that the pain in Lynne’s left foot showed great improvement: she was wearing the black shoe I bought in a little bit bigger size than her other shoes, her fluffy socks that were in the drawer instead of tight pull-ons, and a bandage on the bottom of her foot staff. Staff said she had left it alone. The swelling had gone down. For the hour I was there she never once winced in pain or tried to work with her foot or her shoe. I hand fed her bites of mini-Reese’s peanut butter cups. She drank all of her Frappuccino so fast I switched to water, but she made an ugly face and looked at me. I apologized. She nodded her head.
I finally said I had to go. She said OK. I felt good when I left her in her reclining chair with a peaceful face. On the way home I thought of what her life was like after I left. Did she spend hour after hour dozing in that chair? Did she strain against the invisible barriers that weigh her down, confuse her, anger her, and terrify her, hoping to break free to find human touch, connection, clarity, love, or meaning?
That night I listened to Let It Be by the Beetles, over and over and over, hoping for an answer.
When I find myself in times of trouble Mother Mary comes to me Speaking words of wisdom Let it be. And in my hour of darkness She is standing right in front of me Speaking words of wisdom Let it be And when all the broken-hearted people Living in the world agree There will be an answer Let it be For though they may be parted There is still a chance that they will see There will be an answer Let it be. And when the night is cloudy There is still a light that shines on me Speaking words of wisdom Let it be Let it be, let it be Let it be, yeah, let it be Whisper words of wisdom Let it be
Enjoying Times of Normalcy
I had heartwarming caregiving yesterday afternoon with Lynne, an experience I am convinced she enjoyed as much as I did. I also found out I had checked up on weight later than I did.
She welcomed me in surprised relief with a hug so strong I had to brace my feet to keep from tipping over backwards. At the same time, her body felt thinner, triggering my worry that I had not check with caregivers about her weight and whether she getting more than the traditional portions. We strolled back to her room where I told Alexa to play music from Elton John. Despite Rocket Man soaring in the room, Lynne sat quietly focused on the floor more subdued than typical. She quickly sucked up apple juice and we opened the picture book of our trip to Alaska. Soon, she had the energy to aimlessly roam out of her room to the general meeting area. I suspected the sugar had picked up her mood.
We sat at a table where a caregiver thoughtfully stopped to tell me she was doing very well with help getting dressing, bathroom, shower compared to earlier resistance. I asked him how much she weighed and how often they weighed her. He left to bring back a chair with a scale on it. Lynne willingly climbed in and weighed 126 pounds. I said she weighed 134 when she entered, so she’s lost eight pounds in a little over a month. He said she eats everything, so I explained she had double portions because. He said, “She’s like an athlete. Exactly what I wanted him to understand. A Med tech joined the conversation. After the same explanation the MedTech said that she would make a note in the file to feed her more. I felt pleased the caregiver and MedTech responded immediately to get the scale and make a note in her file. And got over my guilt at not paying attention.
I told the receptionist about the good meeting and she asked if I had told the general manager. No. Well, he’s in his office so you should go tell him. When an experienced receptionist tells me to talk to a manager, I do it.
We had met when he interviewed Lynne at Aegis where assured me she would get extra portions, adding they have no limits on portions. I had not known what I was going to say because it’s delicate to tell him he and his staff were not feeding her enough, but by the time my butt hit the chair I said, “I want to talk to you about a fantastic experience with your staff.” He thanked me profusely and turned to send a note to the staff and head nurse when I got up to leave.
I believe Lynne enjoyed our experiences getting energy from treats and help from caring people. I saw a sparkle in her eyes before I left, and she casually accepted our time was over. I always wonder if she enjoys our times as much as I do, and she enjoys them as much as she did long ago before she was diagnosed. I believe those visits can make feels normal with me, her dad, her sons, and her friends like Nancy. I pray I am right.
Lynne in a Better Place
On Thursday, September 1, we added sons Herik and Simon to be durable powers of attorney for Lynne. Afterward, we moved Lynne to a new home at Quail Park Memory Care.
Henrik and Simon agreed to be co-DPOAs if I was unable to perform. A Notary had to be convinced Lynne understood the changes and approved of them by signing the documents. I believed she understood and wanted the changes, but wondered whether she could sign the documents. If not, Lynne would have to convince the Notary to sign for her. So I enlisted the help of Nancy, and friend LynnR, to help Lynne get approval and be witnesses. They have had consistent success enlivening verbal statements from Lynne.
I had prepped Lynne the night when we had walked the halls. I asked her, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. Five minutes later I asked her the exact same question, “Do you want Henrik and Simon to have powers of attorney to help Dad take care of you?” She listened but kept walking. I asked her the exact same words after another silence. She immediately said, ”Yes.” I texted Nancy to give her the exact words to use.
I had wrestled with questions the night before. Could Nancy and Linda get her to the building? Would she sense something and resist? Nancy had told Lynne she would be moving to Quail Park and drove past it. I had promised her night after night, “I was going to get you off this floor.” She always accepted it in silence. Would she resent being in a different setting? Would she miss the staff who had told me for two days they would miss her because she was a caring, active, courageous person?
On Thursday morning Clemens, Simon and I met in Lynne’s room after she had left. Clemons and Simon broke down Lynne’s queen bed for shipment to her cousin. We loaded all of Lynne’s clothing, teddy bears, dolls, painting, photographs, and toiletries and drove to Quail Park to get there before Nancy and Lynne arrived so we could prepare her room. Lynne had arrived before us. Nancy and LynnR kept her entertained while we hung up her photos, placed dolls and teddy bears on shelves, organized her clothes in her dresser and closet, and hooked up her echo so Alexa could play music for her.
“Oh, by the way,” Nancy turned around to say. “Lynne signed the documents.” I was ecstatic for Lynne. She was still in control of her life and we had made her feel that. What a glorious satisfying feeling that was for me.
She ate lunch with Simon and me and then watched a TV program with other residents in the TV nook. After a couple of hours Lynne began to get anxious and aggressive. We called for the Heard Nurse who met with Simon and me about her care. She indicated Lynne was following a normal pattern. A visiting physician would provide advice on medications to continue calming her. The head nurse usually doesn’t recommend family visits soon after the move, but Lynne , so the nurse encouraged us to continue because Lynne welcomed visits from all of us
Today is Monday as I write this and Lynne continues to progress through the ups and downs the head nurse described. Nancy, LynneR and I have had to remind staff Lynne needs puree’ food, medicine crushed in puree or Applesauce, pants that stay on, and pain in left foot from sores. At times she has vigorously resisted help getting clothes on and going to the bathroom with caregivers she does not recognize. I helped Lynne permit a caregiver to take her shoes and socks off to change her pants because they needed a belt.
Lynne and I rested on a quiet patio Monday afternoon as she sipped on a Starbucks Frappuccino. I said Quail Park was in a quieter neighborhood with less construction equipment, trucks and sirens. Care would be better, the residents on the floor were more tranquil and fewer of them. She ate a nice full lunch. I walked up the street and bought her a belt for her pants and looser socks for her feet.
Nancy called to say their visit was similar, but Lynne needed new shoes. Then she said, “Oh, and I asked Lynne if she liked it. She said, ‘Yes I like it.’”
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.
- 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.
- 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.
- We reserved and individual room for Lynne.
- 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.
- 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
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.