Simply Grateful

 

     Dad was transferred to Hospice. He’s slipping day by day. I can’t talk to him much. Never could really, but there is something about the end of life that makes all the mistakes and opportunities missed roar to the surface and glare like a parking lot full of pissed off teenagers. Dad can barely hear me. I holler “I love you”, before giving him a dose of morphine, before rolling him over, before walking out of the room to cry so he won’t know. I can’t believe anyone can look so wasted and still draw breath. I can’t tell if his mind is in the room or if mercy lets him wander to a better place. I see fear in his eyes but not recognition. He is no longer capable of helping himself. He told me in a voice so quiet I thought I made it up that he wants to die now. Mom stays beside him and they hold hands for hours. When I leave the room she tries to care for him. Every pillow, blanket and banana in the house is piled on him and he lies there motionless, roasting in fruit. I never catch her doing these things. I don’t know when she managed to pull the flowers out of their pots on the patio. It looked like rage and I understood the sentiment, although I have yet to rip up flowers myself. That is the part about this that is so surprising. I’m furious. Why the hell did Dad go crazy then lie in bed refusing to move? Why does this have to happen?  It is too hard to believe. I honestly think I’ll be able to walk in the room and see him vital again, just his usual pissed off, uncommunicative self. He said something a few days ago that made the ground under my feet less solid. I have been feeling selfish for wanting anything from someone in his condition and now I almost want him to take his words back. He looked me in the eye and said “Thank you,” over and over more slowly each time and I understood. He knows. Use words sparingly and their impact will move mountains. His gratitude simply drained the rage out of me, and then grief rushed in to fill the void. I didn’t know that anger functioned as such a powerful shield. Granted I tend to learn the hard way, but next time I think he is listening I’ll thank him too. 

Many, many thanks to Ruth and Larry, you are angels.

                                             

What A Care Giver Really Wants

1. Sleep.

       I don’t know what the odds are of having two parents suffering with massive memory loss at the same time. What I do know is that the stress of helping one parent with Alzheimer’s, going on ten years now with Mom, has not just doubled because my father more recently joined her. An inexplicable mathematical leap occurred. It has squared and I know this because I am exponentially so tired it could be written in scientific notation.  I choose to be here so it’s not a rant, but a warning to line up help before you get to this point. 

     I stumbled into a coffee shop this morning to OD on French Roast so I could go hiking in my few hours off. Now there’s a clue care-giving takes a toll, when you must have caffeine to exercise. The girl behind the counter was curt and a little nervous. When I stepped into the restroom I laughed out loud. High on the list of shit caregivers do wrong is neglecting themselves for others. I had taken a late shower and gone to bed with my hair wet. Between falling onto my bed for a few hours of sleep and waking early to another diarrhea mess I had not looked in a mirror or combed my hair. What a whack job. I couldn’t have created a lopsided jet wash duck-tail if I tried. My bent sunglasses sat sideways on my nose and a curly red spaghetti noodle stain graced my T-shirt. In the overall picture that actually looked planned. I smoothed my hair down with water and checked my teeth. 

     Chances are I won’t look presentable again until I lock myself in a motel room and sleep for a month. The woman in the mirror looked astonishingly sad. If I’m depressed I’m too tired to feel it. I walked out of the can to renewed barista glares and instinctively double checked my fly. Right, I probably shouldn’t have laughed quite so loud alone in the tiny bathroom then sauntered out looking like I bathed in the sink. Fortunately there are so many coffee shops in this area I will be able to frighten scads of superior teenagers before risking a repeat performance. 

2. Absolutely no drama.

       It’s probably necessary to inform friends that your undivided attention will go walk about, although that would require believing skinny old Alzheimer’s folks could actually knock the snot out of you in the first place. I sailed through a hurricane on a small boat and would never have imagined that care-giving on this level would be more exhausting. Friends with unfettered lives will ask questions that you cannot possibly answer. They will be loaded with emotion, require a response, desire a connection and you will search your soul and find salad in a sock drawer, a used diaper under a pillow, dirty dishes returned to the cupboards, a naked old man standing in the kitchen unaware he is taking a crap while scrubbing his wife’s dentures with a floor brush*…you get the point. Your best friends will be the ones who don’t make any effort to spend time with you. And another thing, you really don’t want to know what your ass is going to look like when you are ninety.   

My sincere apologies to friends I am neglecting. I’m also weeks behind on a graphic design project that should have gone to press already. 

*This was also a touching moment because Dad still cares so deeply for Mom that he remembered to clean her dentures.

3. More time.

      A friend sent me a book about care-giving called “The 36 Hour Day” (thank you Larry!) I’ve skimmed through it, but haven’t had time to read it. The title speaks volumes. I still don’t sufficiently understand why this makes me feel like there is a drain in my soul, a dripping faucet in my brain and a fire hose blasting my heart. The statistics for caregivers are alarming at best. Life expectancy is reduced. Many die before the people they care for. I do know from experience that Alzheimer’s patients, and please forgive me for not knowing the correct medical term, are brain leeches. You will have to do all their thinking for them, direct their moves, tell them where they are and answer the same tedious questions a million times without ever letting a tiny hint of annoyance creep into your voice. Otherwise they will call you names, even bite you, and still you must be psycho nice or put up with tantrums so vile that you would choose to run through town naked in a diaper before experiencing it again. And you will have to interrupt what they are doing, after the shock wears off, to remind them they not only forgot to get dressed but they happen to be taking a crap in the kitchen. All this gives you little time for your own thoughts. You know, waking up slowly and deciding what would go good with your coffee. You will more likely wonder if there are foods you can eat while taking a shower just to save time. 

4. A long term care insurance policy that does not require skills equivalent to snake charming and pushing a large rock uphill. Or I could just drive to Colorado and drop my parents off at corporate headquarters for the day. That would be infinitely clearer than the correct number of checked boxes on cryptic forms that are often mysteriously lost in the faxing process. If you think people with dementia are hard to get answers from, just wait until you’re dealing with their insurance company. But no worries, by then you will have your fake nice voice down pat when you hear, “That fax hasn’t come across my desk”, yet again.

  

5-10. Chocolate.

Dementia as a Second Language

     Dementia shows no mercy. There is no cure, little dignity and hope is about as thick as the atmosphere on the moon. I was given sage advice by a doctor. “Don’t attempt to bring them into your reality.” After many years of coping with my parent’s dementia I knew exactly what she meant, but I wonder if people new to Alzheimer’s recognize the depth and wisdom packed into that statement.   

      Dementia as a language is usually spoken in the afflicted person’s native tongue. Context and meaning often take a walk on the wild side. For the non-afflicted who live with Alzheimer’s patients, understanding this language involves listening intently to random strings of thought and a good deal of intuition. Patience is imperative and curiosity helps. Those not comfortable with the concept of make believe are in for a rocky ride.

The following are the rules of engagement as I’ve come to understand them;

Do not attempt to be right; you cannot and will not ever win an argument, 
give up right now

Seriously, so what? Even if you could possibly win, your victory will be forgotten faster than you will be able to gloat. If pride and intellectual superiority do not allow you to just let it go you better take a long hike and not look back. Remember; being right is not always smart. If you are able to say with sincere conviction “I’m sorry, I forgot you left your baby on the moon, my bad!” then don your gorilla suit and shake your booty. You have passed your first initiation into conversing with a deeply afflicted mind.   

Unburden yourself with the concept of truth

As Americans who read newspapers and watch TV we all know that truth is a highly malleable concept. Silly putty really, an invention of those who need to be right, possibly an idea forgotten before the Bible was even finished. Demented people don’t lie, they just make stuff up. The statement, “I don’t need to take a shower since the President is on his way to get me and I can’t be late,” does not need to be corrected. That would be the same as explaining to children that the books you read to them are blatant lies. Underscore that with a promise to punish them for believing in nonsense and you’ll be well on your way to comprehending the futility of verbally disagreeing with Alzheimer’s folks. “Oh come on, you don’t even know the President,” will be met with anger or tears. “That’s right, being clean is the American way so let’s hurry you into the shower before he gets here,” is far more likely to achieve positive results.

What you know will be adamantly ruled out; in fact you are the crazy person

It’s pretty clear when you become crazy to a demented person. A long, blank stare follows what you have just said, which means your words are not computing. “Nooooooo! Did you just go number two in your pants again???” can be met with a look so full of incomprehension that you will want to pull your own hair. Dinosaurs needed a second brain to control their tails but humans don’t have that luxury. When communication between the mind and nether regions breaks down you will be the first to know, but the person in diapers may be the last. “Okay Mom, its time to meet the President, let’s get you in the shower.”

   

Zen is perfected by the neurologically impaired; the sands of reality are ever shifting 

With no way to learn anything new the past and future are compressed into the seconds of the present. “Don’t touch that or you will burn yourself” is a logical attempt to explain an unpleasant consequence. Sadly instructions are forgotten between dropping something and the time it takes the object to hit the floor. Stay in the moment. Find your center. Something along the lines of “Please go find your baby before dinner,” is more likely to keep hands away from the stove than a thoughtful lesson on the subject. When they return holding a pillow and a banana all you need to say is, “You have a very pretty baby.”

Time travel is possible

A happy pink light fills the room and memories of swirling around a dance floor wrapped in a handsome soldiers arms take center stage… seconds later, shrieking is heard. “Who is that old man?” Dad, the man she imagined she was dancing with sixty years earlier had just walked in the room, now an old, unrecognizable stranger. Mom’s time machine is currently broken down somewhere in her twenties.

 Observe the spoken word as a highly flexible concept

See words as something that can be thrown in a blender then poured through a defective sieve before attempting to discern their meaning. When the language centers become damaged speech takes the quality of Dada poetry. When Mom first started babbling incoherent ideas and could still hear herself not making sense she looked at me with sincerity and said “I can’t believe a word I say anymore!” I hugged her and reassured her that she would always be my Mom. I promised to take care of her and that is the primary reason I’m still here. She is no longer aware that she doesn’t always make sense or that she even has kids, but hugs still work.

Have fun, conversations can be hilarious, relax and go with the flow

Endlessly repeated questions can drive the most level headed person to distraction. Try to give a different but honest answer each time. This exercise keeps your brain on its toes and helps ward off the fury of supreme annoyance that lurks on the horizon most days. It is exhausting to make yourself behave cordially when a tsunami of aggravation pounds your limits. Reward yourself often for making this astonishing effort, it is one of the hardest things you will ever learn to do well. Mom asks if she can help me about 5,000 times a day, although filling a glass of water is an impossible task. Once I asked if she could give me a million dollars because that would certainly help and she said she would check her pockets. After feeling around she informed me with genuine remorse, “Honey, I don’t have any pockets.”    

Words can be devastating over and over again

If you can’t say something nice cultivate painless ways to bite your tongue. Dad cannot stand that Mom believes her Mother is alive. He definitely has to be right. Her Mother died twenty years ago, but every evening my Mom is still convinced she is going to go home to her Mother. Referred to as ‘sundowning’ the term describes heightened strange behaviors as the sun sets. Dad spends a good deal of time correcting Mom by shrieking “YOUR MOTHER IS DEAD!” As if yelling will finally get through to her. Mom collapses in a tearful heap since her mind is hearing this news for the first time. I could not convince him to stop. Moments later, all was forgotten and the scene was repeated. I used to take her for a drive and promise that Granny was away for a little while and would come to visit us soon. I told myself that Granny was a ghost who hovered around when the spirit moved her, you know, to stay in touch with reality while I was fibbing to Mom. She has finally reached the stage where she believes that Dad is a big fat liar and the news is no longer devastating. The day she announced, “That old man doesn’t know anything!” I sighed with relief. Long live Granny!  

Tone of voice is crucial

A voice dripping with honey is most effective, where almost everything else is perceived as intentionally cruel. Demented people have no problems haranguing you with guilt to punish you for causing them pain. “I should just disappear and then what would you do?”, “I know how much I’m hurting you just to be alive!” and “Who wants me anymore?” are the answers I get for rolling my eyes in a moment of frustration. Do not take words at face value, avoid getting caught up in their emotion and refrain from believing that Alzheimer’s people are evil or it will just drive you crazy.

Give up all expectations

Let them go, the sooner you send those troublesome ideas to the vapors the easier your life among scrambled neurons will be. Do not expect to be understood, remembered or thanked. Be grateful for the opportunity to learn a new language, to rise above yourself and to give unselfishly every minute of your day. Oh, and don’t forget to have a life, get some sleep and take care of yourself. That part will be a lot harder to accomplish than you think.

     The following are my favorite pictures from a hike in Las Trampas Regional Park last week, a lovely place new to me and one I’ll return to soon for necessary moments of bliss. I love my new camera! With 42X zoom so much of the world is closer. There is much in life to be grateful for. I’m missing friends on Molokai this week (you know who you are!) While there are plenty of remote trails to explore, I don’t know anyone to go hiking, out to lunch or have coffee with in this town. Actually I do, but they no longer remember me. Talk about expecting too much. 

wild mistletoe

                                               Happy 4th of July!! Keep smiling :)

   

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