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.