Perspective on Respect

        Family secrets hold an uncertain power as long as they are kept secret. Fortunately there are places to share unpleasant truths, like blogs. When meeting with new medical people it is important to demonstrate that we (the children of not always wonderful parents) have sorted out what it takes to be caring human beings, whether or not our parents are difficult. Our goal is to carry out the instructions of health care professionals to the best of our ability in compliance with our parents’ wishes. Translating the Dead Sea Scrolls might be less complicated.    

      I haven’t discussed our sad family history with their medical providers. The body and psyche, though closely linked in my mind, are not always lumped together in Western medicine. It may no longer matter that Mom has forgotten booze was her best friend or that Dad is left with two basic modes of communicating; 

1) Letting someone know what he wants and 

2) Throwing a tantrum when it doesn’t happen.

      Recently my sister and I accompanied Dad to meet with a health care worker and a doctor. Somehow Dad managed to replace the good batteries in his hearing aids with dead ones so he couldn’t hear a word we were all saying. Frankly, I thought it was lucky because I needed to ask the Dr. difficult questions about how to care for him, which was painful with him there. But the Dr. pointed out that doing so lacked respect. She got up from her desk and stood in front of him then repeated our questions loudly while leaning in towards him. She smiled often, sincerely trying to put him at ease. I hoped it would work. Unfortunately Dad’s face quickly morphed from annoyed and confused to beady-eyed furious. I have considerable experience reading the nuances of his temper from dodging his swinging arm since I was three. That look meant he didn’t like what was going on, but she hadn’t quite pissed him off enough to get smacked. Dad never apologizes for saying horrible things in fits of rage nor did he before dementia set in. He acts like he has anger rights. He appears to me as a man standing on the thin crust of a lava flow that he also has the power to direct.

      He isn’t the kind of guy who jumps up for a hug and I’m certain he would prefer that doctors behave like know-it-all authorities. You know, hands clasped on the desk, serious delivery of the facts while staring sternly over half-glasses, preferably a white male because they always know best (his request, not my opinion, just to say). I’m pretty sure that felicity with the kids in the doc’s office is at the bottom of his list. I quickly put my hand over his when I saw the steam rising around his collar, something I never do. It was a knee jerk reaction to the circumstances, like throwing a lucky horseshoe on the track of a freight train of rage in an attempt to derail it. I couldn’t look at my sister because I knew her eyes popped wide open with the question “When the hell did you start holding hands with Dad?”

     I wasn’t pretending to care, obviously I do or I wouldn’t have been there, but I didn’t take my hand off his because he was slowly balling it into a fist. I gently pressed his knotted hand onto the table to let him know that retaliating was not an option. My sister and I showed up to demonstrate that our parents are being cared for and that they have the means to stay in their home. As their new guardians, walking them through the labyrinth of modern medicine because they can no longer manage it themselves requires a gallant effort. I heaved a sigh of relief when someone in the room said “You really are doing a great job.” 

      Dad griped for days and demanded bitterly, “Who was that woman who made fun of me?” and “Why did she stand there and yell at me?” Selective memory is typical of Alzheimer’s. He remembered being insulted even though it didn’t match the intentions of anyone in the office. I’ve noticed with both my parents that strong emotion has the power to embed memories, but the perception of incidents is often closer to science fiction. In his version he referred to me as “the girl” and had no memory of my sister being present. I suppose if I want him to remember me I’ll really have to piss him off.

     I told the Dr. on the phone that Dad did not feel good about the visit because she asked me. When she quickly replied, “I knew he didn’t feel respected!” I let it go. Being right isn’t always smart. I respected her for trying though.  

     I’ve considered whether Dad’s bad behavior is a reason not to help him through this difficult stage of life, but my heart is sure I need to and I don’t have any regrets. In writing about this aspect of his character I’m leaving out many good qualities, although engaging with rage takes a toll. Top of my list for staying sane is laughing with friends until my sides hurt. My brother and sister can make me howl and I could not do this without them. 

This is a link to a guy who makes millions of people smile. I’m sure Mom would love to dance with him.
http://www.wherethehellismatt.com/

This is the Photoshop retouching  job I did this week for Lively Architects in Honolulu. The top photo was taken with a phone. The bottom photo is how it could look. 

Good luck Mark!

Mark Lively, AIA, LEED AP

LIVELY ARCHITECTS

119 Merchant St # 403  Honolulu, HI 96813

Tel  (808) 523-0707

Cell (808) 226-0707     

Please, please, don't lose your teeth again

     Why did both my parents lose their minds? And will I? Is it inherited? Well, I hope not because I didn’t have kids and children are the only line of defense against the fate of people with Alzheimer’s in America. My siblings and I were told years ago that we should force our parents into a home. We didn’t partly because it was a battle and none of us wanted to fight and partly because it’s just wrong, they are not homes, for demented people they are jails. Many people our age are faced with the same dilemma, which is how to help aging parents. Most don’t choose to move in with them when they fall apart and I sometimes wonder at my sanity for choosing to. People without means don’t have much choice, but my family does. We’re making the choice to help our parents stay at home as long as we can. And while I’m here I’m going to attempt to answer the question, “Just why is it so hard?” for all our sakes.    

     My Dad is sneaky. He found where I leave the morning pills for the caregiver, took them and then put them back when I asked him where they were. I didn’t see him come or go from the room, so either I had instant onset or he is a petulant child in a 90 year old guy’s body. I get a break every day for six hours when hired caregivers arrive. The rest of the time I’m on duty and must cram in sleep and my own work however I can. I earn money designing commercially printed products, retouching images with Photoshop and occasionally selling prints and paintings that I have on display somewhere. In home care is giving me a whole range of new skills that would read on a resume for a graphic designer/caregiver like this.

• Highly experienced answering random, nonsensical questions while retouching images in Photoshop.
• Able to envision calendar designs and search for lost keys, shoes and even teeth simultaneously.
• Willing to lay out brochures and postcards while giving directions to the bathroom.
• Mentally able to track all design changes between dashing to the hall when the bathroom cannot be found and forgetting to hit save.
• Working well with others when my purse has been hidden to ensure important notes are found before deadlines are reached.
• Able to track client’s change requests with a cheerful attitude even when used diapers are flying through the air.  

     Turns out I can literally handle a shit storm, but I don’t wish it on anyone and my resume would be fudging a little. I’m not always cheerful. I have snapped a few times and must say it feels lousy to lose control of my words. Mom decided she was going to walk to Canada to see her mother who died twenty years ago. She was in the corner of the yard barefoot trying to break the fence down. I could not talk her out of it and had tried for a long time. Touching her to guide her gently was met with attempts to hit me so I backed away. I finally asked in anger, “Do you want to be remembered as an old bitch?” She wheeled on me in rage and shouted back “YOU ARE THE UGLY…STUPID…VULGAR…BITCH.”  Clearly I was never going to win an argument. Alzheimer’s folks are easily agitated, but not anywhere near as willing to just let it go. When she was finally in the house she stomped around banging things. At the risk of giving advice, if you don’t have anything nice to say to a demented person, just shut the hell up. Pin a “kick me” sign to their shirt if you must or maybe just walk away. I lock the door to my room and focus on my breathing for five minutes when it’s really bad and I reserve crying until I am alone and have more than five minutes to regroup. It is absolutely heart wrenching to witness two formerly clever, capable minds circling the drain.  

     Although, there are a few endearing moments. They often make breakfast at 2 am. Yes, they can still get in the kitchen which is close to being walled off to them, but isn’t yet. I have a baby monitor in my room so I can hear if they leave water running, attempt to use the microwave or start pulling each others hair. They can drop things, but they can’t really harm themselves. Soap and cleaning products are out of reach, the knobs are off the stove and knives are never left in sight. Mom’s round of horrible diarrhea years ago (before round the clock regular shifts) happened because she was pouring dish soap in her tea and it took a while to figure that out. The other night I checked to make sure all was well (like there really is anything close to well in this picture) and they were happily sitting behind TV trays with two heaping bowls of raw oats with milk. Technically it is cereal so there was some logic. I took it away to jeers of disapproval and brought it back five minutes later cooked, but they forgot and fell asleep holding hands on their love seat. The image of two ancient people clinging to each other after sixty five years of marriage just might be why I don’t go out the door and walk to Canada. There isn’t enough positive regard in the world, but that looked like love to me.

     Many heartfelt thanks to you Paula for stopping by my sister’s gallery with your adorable dog to give me a chocolate bar. How on Earth did you know that’s my favorite one?  I’m still smiling that you did that. And Karen, so looking forward to seeing you again!

Life is cool, mostly. It helps to remember some of the beautiful places I've been.

Moa'ula Falls, Molokai

Not Quite Out of My Mind

     There has to be a more succinct word than caregiver. It really is too much to live up to. Implied in the title is the concept that one must care AND pony up a bottomless pit of giving all the time, which is simply impossible. Genuine loving care comes and goes with the ability to endure the full range of emotions that come up while dealing with the demented. I don’t feel very caring when a used diaper is shoved at me in rage, nobody does. I prefer eldersurvivor.  At least it addresses an appropriate touch of hardship. The first time I had to buy adult diapers I cried on my knees in the drug store and that was before Mom actually needed them on a daily basis. That was in case of occasional accidents. A picture of an elderly person standing in their front yard in nothing but a diaper yelling “I’m being abducted” is not on the product package, but it should be just so kids who go to buy diapers for their parents will be prepared for what is coming down the pike. Both of my parents have dementia. Dad is nearly deaf, Mom is nearly blind. Incontinence is a dinner time topic, although I don’t eat with them anymore. I leave the room when dinner is on the table. It’s easier to clean up afterwards than police spillages or hesitate with my own fork full of food to respond to the day’s scatological reports. Eating and defecating are closely linked in a disjointed mind. Gagging over cringe worthy topics are a luxury of youth or the elite or cultures that still teach table manners and there are many moments in an eldersurvivor’s day when you just have to suck it up, but mealtime is not mandatory.  

     People told me this would be hard. “Yes”, I said assuredly,” I know.” Turns out I lied. I did not know. You can’t truly know things until you live them. I’m 55, I live with my parents who can no longer manage their own lives and I’ll stay until we can find a solution for the dilemma they face.  People with Alzheimer’s need their familiar environment for as long as possible or they become so disoriented they have no quality of life whatsoever. Babbling incoherently, drugged, strapped to a wheelchair or simply locked up in a sterile room are my parent’s options when they leave their home. Understandably it is better to prolong this fate.     

       I am amazed by how difficult it is and wonder why anyone would choose this line of work. I don’t know if the hardship is exacerbated because they are also my parents. I assume it is. I am not detached nor could I ever be. Roll reversal, becoming a parent for parents, is a challenge akin to a mandatory decree to switch political parties. Some ideas take hold like fertilized crab grass and are not easily extracted. Certainly my Dad does not want me to be the boss of him and he doesn’t often do what I ask, including giving up moving barrels of dirt with a double hernia.

I also need to care for myself and so far this is what helps:

Hiking

Chocolate

Bitching to family and friends who do not judge me when I feel more like a survivor and less like a giver

Bike rides

The new library

Travel stories

12 step meetings if I made myself go but I don’t

Searching craigslist for that perfect cabin on a tropical island to hide out and write

and,

Watching reruns of the Bachelor and Bachelorette where contestants volunteer to put themselves through outrageous, abnormal emotional situations and must behave well regardless, which is a surprisingly close parallel to looking after demented parents. 

        This is the picture of Mom’s newest cage, to prevent her from falling on the rocks in the yard. I couldn’t stand building it. I hate curtailing their freedom; which has become a balancing act between safety, their soul's well being and their rights. It is a daily dilemma and responsibility I did not expect. I have hidden a mountain of tools from my Dad and I feel incredibly sad about that, but an elderly person with balance issues on blood thinners should no longer have access to an axe collection. Before I added the boards to keep Mom enclosed even further I planted a flower pot garden so she might not see the fence as a cage and she can still make her way to her garden swing. The barren dirt in the yard will soon be full of chrysanthemums. I’m not much of a gardener, but have discovered that planting flowers helps tip the scales just slightly away from the overall picture of decay that very old age is.

     I was in the kitchen making dinner and Mom asked if there was anything she could do for me. I said I wished there was because I often feel lost in these circumstances and could use some good motherly advice even though Mom no longer knows who I am. Her answer follows word for word and honestly, it was exactly what I needed to hear. Life is astounding. 

“Sometimes we just have too many hard things at once and it feels like everything is being taken away and I know you don’t believe me but in time it will all come back and then what you’ve lost will be there for you again and the hardest thing in the world is waiting for that to happen.”

       

    

High on Hills

 

     It turns out that walking uphill is very good exercise and a lot less tedious than marching on a machine. Wind animates the vegetation, sunlight plays hide and seek with the scenery and insects aren’t terribly aggressive in California. When I quit smoking and took up hiking again it was not instantly addictive. My friend Sherry and I started walking together months ago on Molokai. We trudged uphill like middle aged broads, because we are. The days stretched into weeks, then months and we just kept going as the rewards became clear. Reaching heights with panoramic views caused a profound shift in perspective. In those euphoric moments problems became specs on the far horizon, easily forgotten bumps on the road. Driving to viewpoints does not afford the same experience. Working hard for it means something. Sherry lost weight and toned up fast, the dog drastically improved muscle definition, but for some reason I just got bigger. Not the fifty pounds I put on the last time I quit smoking, a mere ten, which is a huge improvement. Sadly even though my muscles feel ripped they have yet to emerge. If weight loss mattered above all else I’d quit, but good things have happened that I have no explanation for. I jump out of bed excited about starting the day and most people who know me will raise a skeptical eyebrow about that. I simply cannot account for excitement over plodding uphill, wheezing. We bitched and moaned a lot. And I’ll never convince anyone that a hot, dusty, steep road with scant shade was a path to enlightenment, but it was.

     I left Molokai and sorely miss hiking with Sherry, but for now I’m stepping out on my own. Yesterday on a trail high above Lafayette, after reveling in that moment of joy that makes me want to skip like a Disney squirrel, I ran into a pack of teenagers coming up the hill. They must have been forced to hike as some kind of punishment because they looked miserable. Clearly the experience wasn’t animating them. I must stop talking about it or I’ll become irksomely zealous, as if to convert disbelievers to a wacky new outdoor religion. 

     Go climb a steep hill until your heart pounds and your lungs burn day after day. Bitch loudly, throw rocks if you must. Let it all out and just keep going. Get sunburned. Reach the peak and do it again. Savor the dust. Burn your calf muscles, strain you thighs, feel blood pounding in your temples. Keep going. Find the tree line and go higher because when you finally turn around to come back down, that’s when it happens. Everything expands. Life is infinitely joyous, gratitude flows like beer at a St. Patrick’s Day parade, worries are given unlimited free parking and personal slights turn to chicken scratch. Colors, sounds and smells are suddenly enhanced. I vow to be kinder and to listen more carefully.

      I decided to quit smoking because I got winded walking up the damn driveway, but there is nothing like another chance. I injured my lungs and hindered my chances of seeing places I love and I’m sorry I did that to myself. But as long as there is another breath to take there is a chance to heal. Feast your eyes on beauty and ignore the rest, believe only the kind words, walk away from anger and give up the need to be right. Return a smile or better yet, initiate one. And if being passionate about hiking ever makes me skinny, holy cow, no one is ever going to hear the end of it.  

Lime Ridge, hiking in California

       After hiking on the dry side of Molokai the California hills no longer seem quite so bleak or harsh. I haven’t been out in nature for a few weeks. I’ve been inside a house with my parents who both suffer with dementia and I headed to the hills with a soul full of woes. I walked for miles over hills of dry, rustling grass and solid, solitary oaks. The first steep incline burned because a few slack weeks are enough to turn lazy muscles into adolescent whiners, but eventually I caught my breath and began to feel frustration falling away. A deer bounced along the trail and a pack of wild turkeys scurried into the bushes. 

     There is nothing funny about dementia and it is surprisingly irritating to be around. The rambling stories devoid of truth, random fits of rage and the thousand yard glare in answer to simple questions serve to fry nerves. I’m only speaking for myself, from a very selfish point of view. I know it is another kind of hell to be in their shoes so I make every effort to practice kindness. 

     The difference between islands in the Pacific and just about everywhere else is snakes, so I remembered to keep my eyes on the trail ahead and not skip blindly through tall grass. The scents along the trail in California differ from the tropics like the gulf between savory and sweet, rosemary and bananas, the landscape smells more like dinner than desert.  And the flowers are more demure, less inclined to blow up like party balloons. I volunteered to be here for my parents so I’ll make an effort to find places where few people go for a view that gives freeways and shopping centers fresh perspective. Vultures circling close overhead remind me to live life to the fullest, before all that remains is a house full of lost memories.  

   

Panoramas

      My camera has a panorama feature that captures close to 180 degrees. It takes 20 images in strips and stitches them together in the camera. Depressing the shutter, then sweeping the landscape by turning the camera created these images. The following are panoramas from this last year starting with American Samoa and ending up in Molokai. The camera is a Sony Cybershot DSC-HX1, which is not the latest version, but then neither am I. Sadie's Hotels in Pago Pago sells beautiful wide postcards from several of these images.

American Samoa

Fatu ma Futi

Beach fales, Utelei

Pago Pago Harbor from Mt. Alava

Pola Island

Vaitogi fale

scattered showers, which is why Tutuila is so green!

 Sailing San Diego to La Paz, Baja, Mexico

Si Bon on the high seas

Bahia de los Muertos

Cemetery, Turtle Bay

leaving Ballandra Bay

dry lake, Los Frailes

anchorage at Los Frailes

sunset near La Paz

calm overnight passage

Kalaupapa Peninsula, Molokai, Hawaii

Kalaupapa lighthouse

outskirts of town

one of 26 switchbacks on the cliff trail

backside Molokai from Kalawao

Kalaupapa peninsula in the background

Siloama Church, Kalawao

St. Damien's grave next to St. Philomena

St. Philomena Church, Kalawao

view of the Kalaupapa peninsula from the top of the lighthouse

topside Molokai scenes

rain forest road

boardwalk lookout

Humpback whale offshore Molokai

Maunaloa rodeo

empty stadium

corral

a year without rain

hiking above the tree line

deer country, far above Kaunakakai

wild deer

Thanks for looking. The wild places, the open ocean, trails not often traversed pull me to them. Six weeks ago I was having trouble catching my breath so I quit smoking and started hiking daily. Last week I was able to walk nine miles to the top of the mountain and back. Every sore muscle, every inch of sunburn and every stumble has been worth it. I hike with a friend or I might not make myself go. We are both over fifty and were out of shape when we started and now, we run part of the trail. Life is great! Thank you Sherry!!