Sunday, October 29, 2017

Undercover Scones



I was baking some scones yesterday.  My mother was very interested in what I was doing.  She sat at the counter watching, waiting and salivating.  For her, the best thing in life is sugar; yes, sugar in any form, served in any way and at any time.  If I want her to smile all I have to do is provide her with a never-ending supply of cookies, cakes, chocolates, and creamy, sugary delights. I have tried to cook healthy foods for her but  alas, she rejects all things nutritious.  In fact, I have found her picking and eating only the craisins out of a chicken almond salad and then flattening the rest of the salad with her fork in a show of derision.  "I will not eat this!" she complains.  If I were to give her a piece of broccoli covered in chocolate then rolled in sugar crystals, she would remark, "This is DEEELICIOUS!"

The more her Alzheimer's Disease progresses, the more displays of avarice for confections I see.  Okay, okay.  She's 98 years old and in good health (other than being in late stages of Alzheimer's) so why do I insist she eat her veggies?  Why do I peddle protein like a wicked Nutritionist?  In my defense, I am not alone.  My husband scolds her for ignoring her protein in favor of a syrupy morsel.  She scowls and complains.  She pushes her food around her plate like a petulant two year old.

But I digress.  Back to the scones I was baking: they were lovely little bite-sized treats that were coated with a sugar glaze guaranteed to send her blood sugar levels soaring.  I finished dipping and glazing the last scone when I looked at the clock and realized that I needed to leave for an appointment.  About the same time, my husband, Skip went outside to meet with a man from Critter Control about our problem with voles and moles.  (Yes, we have pests running rampant among our plants chewing roots and digging tunnels in the grass.  To be clear, the moles dig the tunnels and eat insects and worms while the voles borrow the tunnels to find their way to the roots of plants.  Their penchant for devouring all edible greens is truly legendary.  I wish that they could teach Mom to enjoy greens as much as these small rodents!)  Anyway, as I was saying, I had just finished my job of baking the scones and realized that the drying rack was too tempting to leave out.  As soon as I might exit the kitchen my mother was sure to be all over these morsels like  flies on flypaper.  I began to look around for how to hide the drying rack.  It was too large to place in a cupboard.  Skip suggested I put it on the washer in the laundry room and close the door.  I laughed sardonically.  Mom had not met a door she couldn't open.  In fact, she was a known escape artist.  She even managed to figure out how to get baby locks off of cabinets.  A closed door was certainly not going to keep her away from the scones.  I decided to place them in the cooling oven even though I risked a slight drying or melting and compromise of texture.  I couldn't risk leaving my mother alone with the scones.  So under cover they went.  Hidden from my mother's search and discovery I could safely leave home to make my appointment.

One might think that this is quite petty of me. If Mom wants a scone why not let her have a scone?  I hasten to remind the reader that a person with advanced Alzheimer's doesn't remember things from moment to moment; so as soon as Mom eats a scone she will reach for another thinking it to be the first one she has sampled.  This will continue until she gets sick to her stomach often resulting in what I delicately refer to as tossing her cookies!  So I control the amount of food intake and sugar she has.  Oh, and one more little fact; sugar gives my mother horrible indigestion.  We are constantly administering antacid tablets.  (We buy them in bulk!) I really do try to keep some semblance of balance while still giving Mom what she loves.

Over the years I have received supportive comments from friends who tell me I am a good daughter.  I am always happy to hear this when I am struggling with the issues that I have as Mom's caregiver.  This week, for example, I yelled at her when she blew her nose in her sweater.  I had the option of responding the right way or the way I wanted to respond.  My two mini selves (the good mini-me and the bad mini-me) sat upon my two shoulders.  One cautioned me to think carefully how to react. "Just hand her a tissue and then take her sweater off and replace with a clean one."  The other told me "Go ahead.  Tell her how you feel! You know you want to.  It's not good to suppress your feelings!"  Guess who won?  I shouted, "MOM!  What are you doing?  Why did you blow your nose in your sweater?!"
Mom replied, "It wasn't a big blow.  It was just a little blow."
I felt steam coming out of my ears as I bellowed, "I don't care about the amount of blowing.  I still have to wash the sweater now!"  (I said a few other things too and Mom turned around to face me indigently complaining that she did not like me yelling at her.)  I continued for another few seconds until my anger subsided and then left the room.  To those dear friends who think that I am a saint; I confess I am most definitely not!

So, here I sit with the knowledge that it is nearing my mother's tea time.   The angelic side of me says, give Mom as many scones as she likes while the devilish side of me says to give her one bite-sized sample and remove the rest.  What to do, what to do. I am still ruminating over the nose-blowing incident.  I am also reminded that my mother (who never ever goes into our inner sanctum -- the master bedroom) found her way to our bathroom instead of using the one which is designated as hers and which has her toilet chair and easy access.  I looked up from my work and saw that she was M.I.A, called for her, walked around the house looking for her, becoming increasingly worried as to her whereabouts, and then finding her wandering out of the bathroom. She had not flushed the toilet.  She had not used the toilet paper.  She had been less than careful.  (I will not go into details.)  I was livid.  My mini-me's were both screaming in my ears. When confronted she was defensive and irritated with me for being upset.  Yes, I was thinking of the other incidents and how difficult things were becoming. Mom's attitude was far more argumentative after tea-time. Suddenly, I had an epiphany and at that moment I made the decision.  Sugar makes Mom happy but too much sugar makes her cranky. What I did was obvious. The answer could be read as a news headline: Scones Stashed in Effort to Save Survivors! 



Saturday, October 21, 2017

Emotionally Detached




I do a lot of research on Dementia and Alzheimer's.  Most of the information is clinical rather than anecdotal.  There are a few things I have come across that delve into the caregiver's perspective and how to get past negative feelings to be more effective in caring for loved ones.  However, the overriding body of work on the subject approaches it with dos and don'ts.   'Do speak gently, slowly, simply.  Don't accuse, question, correct...'  Do this, don't do that.  On and on it goes with the dispassionate how-to approach to caregiving.  I could write a book on the dos and don'ts.  It's fine for caregivers who have no emotional attachment to the patient. Oh sure, they may grow to like someone but it isn't their mother or father, husband or wife.  A caregiving worker is there to provide care professionally.  He or she is paid to be nice and to do the 'DOs' correctly.  At the end of the day a professional caregiver can go home; eight hours on and 16 hours off.  No emotional attachment.
Doctors, nurses, social workers, and others engaged in advising family members tend to focus on the things they see when patients come to them.  They teach family members about the illness, what to expect, how to handle it.  But...  (and here is where I will now step upon my soap box) who is caring for the Family Caregiver?  You know who you are.  You are the one who is providing caregiving in the home, the one who is there 24/7, who gets no break, who cooks and cleans, who worries and frets, who deals, and deals, and deals, day in and day out.  You are the one who repeats the same instruction over and over, provides the same answer, who leads by example, who calmly, quietly, gently coaxes, who diverts rather than corrects, who smiles rather than frowns, and who watches, hovers, 'mothers', remains alert throughout the day and night.  You are the one who (might) get a few hours of respite to run errands but who remains on call -- the go-to person for all things related to the loved one for whom you are caregiving.
When the caregiver slips up, when it becomes overwhelmingly difficult,  when the rules get broken and when the Dos and Don'ts get thrown out the window, what happens?  I looked at this and began to see that there is no safety net out there.  When we fall off the 'perfection platform' into the dark abyss of impatience, frustration, and even anger there is no lifeline thrown to us.  We are on our own.  We claw our way back to self-composure. 
This is where we are missing the mark.  We need to approach this whole caregiving thing differently.  Instead of DOs and DON'Ts how about replacing them with WHENs and THENs.  Allow me to explain further with an example:  My mother just blew her nose in the shawl I had painstakingly knitted for her.
Scenario I:  "Wait. Stop. Here's a tissue,"  I tell her in a calm and cheerful manner.  I hand her the tissue, take the lovely shawl and throw it in the washer.  When I return to the room where my mother is sitting she is taking the tissue and shredding it.  "Oh my!  That looks like fun.  Perhaps you would enjoy shredding more tissues,"  I suggest as I hand her the box so that she can enjoy the fun activity.  Later I am on my hands and knees picking up small bits of tissue all over the carpet and the rest of the house where she has tracked shreds as she has wandered about the house.
Scenario II:  "No, NO, NOOOOOOO!," I shout loudly.  "What are you doing?  That's not a tissue, that's a shawl!"  I am angry and disgusted.  I have just finished cleaning up after my mother has made myriad messes in the powder room, the kitchen and family room.  She has left masticated food she removed from her mouth and put on the counter for me to clean up, and ground in the remains of a chocolate muffin on the carpet.  Her used tissues have been left on the table, her soiled undergarments have been stowed in drawers with linens. I won't even begin to describe the 'joy' of finding excrement on doors and walls.   I have had four hours of sleep because Mom was wandering around all night, and am competing with the constant noise of the TV broadcasting loud enough for her to hear.  My nerves are frayed, my body is tired, and my joy and love is running on empty. 
Scenario III:  "Mom?  Perhaps you would like a tissue," I tell her gently but firmly.  I feel my blood boiling and am trying to keep a lid on the angry outburst I would like to have.  I remind myself of what I should be doing...how I should be reacting; but it's not working.  I am rapidly approaching that out-of-control moment when I act out inappropriately by yelling or accusing, by blaming, by babbling angrily, by showing disgust.  "Uh oh," I tell myself.  "WHEN I find that I am about to lose control THEN I need to take a moment."  I remove myself from the room and sit down in my favorite chair.  I count from 1 to 10 paying attention to my breathing.  I tell myself my favorite mantra.  I repeat it over and over, "Calm and relaxed.  Calm and relaxed.  Breathe in and out slowly.  Calm and relaxed."  It's working.  A minute or two later I am able to rejoin my mother with a smile on my face. 
So, let's look at the three scenarios.  The first is the pie-in-the-sky scenario that the professionals would have us believe we can do and should do.  The second is caregiving gone awry. That's the one I believe we all tremble over, worrying that we will become that person and often do!  That's the caregiver burnout scenario that signals it's time for a change.  The third scenario is the most practical scenario.  It is the one that caregiver support groups should focus on, and the one I believe more books and articles should address. 
When this happens, then look at how to change your own behavior.  Look for the things that will calm you down, Look at the reasons (the buttons that get pushed, the motivations, the sensitivities, the triggers) and find the solutions based on your own wants and desires.  For example, if cleaning up vomit makes you gag and triggers the kind of behavior that will humiliate your loved one for whom you are caring then look at a way to remove your loved one while you are cleaning up the mess.  (Okay, I confess I am that person!  I remind myself that it isn't my mother's fault that she has done something that disgusts me.  It is my personal trigger based on some really awful stuff from a long time ago.  I acknowledge this.  I allow for the fact that I am having a blown-out-of-proportion reaction.  But I don't let her see this.  I muster as much control as is humanly possible and put Mom in another room while I proceed to bluster and blow, gag and show my disgust in the room where the mess is.  Meanwhile, from the other room, Mom is unaware that anything has happened.  There is no humiliation, embarrassment, or shame.  By the time I am finished cleaning up, my immediate reaction of disgust or even anger and blame has dissipated. )  It is just another event in the many unfortunate events that occur when a loved one is ill.
Caregiver support groups and those who are involved in caring for caregivers need to be cognizant of this when advising or listening to their stories.  It is tempting to provide the should and should nots, the dos and the don'ts.  I beg...I beseech, please try harder to address the whens and thens.  That is so much more effective in allowing for a successful home-caregiver experience!

Saturday, October 7, 2017

Good Morning, Good night






The light creeps across the dresser slowly illuminating the ghostly shadows of the night.  Outside a chattering nut-collecting squirrel heralds the morning.  I arise knowing that there was so much to do even before I begin.  Beginning...that was how I view my day; to prepare to begin, to plan on beginning, to make motions to begin.  

The coffee mug is placed on the counter, the two napkins (one for my mother to use as a tissue and one to fold under the cup, then use as a tissue, leaving none to use as a napkin), the plate, the tea bag, the packet of sweetener.  I fish the unmatched socks out of the dryer and curse the fact that the missing partners are once again lost in the hem of a pair of pants, in the lip of the washer, or mysteriously floating in the cosmos never to be seen again.  I manage to pair two socks and congratulate myself.  The shuffling sounds from upstairs alert me to the fact that I only have a few more minutes.  Soon she will call to me...or maybe not.  Soon I will discover what kind of day I will face.  Soon I will learn if Mom is more or less cogent today.  I grab the miscellaneous laundry items awaiting sorting and dispense with them efficiently while straining to hear any sound that might indicate Mom's impatience.  Lately she doesn't call out.  She waits for me to figure out that she is awake and if, God forbid, I don't arrive at that conclusion she bounces around on her bed, opens and closes drawers, tears apart the covers and bed sheets, until I hear her and come upstairs.  Then I might be greeted with a scowl, a lack of recognition, and a snide comment about waiting for someone to come get her.  One morning I found her sitting and staring at her closet.  When I entered her room she said, "Oh, hello.  Do you know where my shoes are?"
"Yes.  They're in the closet."
"Well my daughter needs to get them for me."
"Your daughter?" I asked. "Where is she?"
"I'm not sure.  She's around here somewhere."
"Hmmm," I played along.  "What does she look like?"
"Well," she answered, "She's very pretty and very nice." (Her words, not mine!)
"Oh, well then, if I see someone that answers that description I'll send them in," I promised.  "Meanwhile I'll be happy to help you get dressed."

So this is the beginning of my day.  This is how the tone is set that will carry through from the first thing in the morning until at last I fall asleep.  I am not complaining. In fact, most of the time I feel...um...well not happy exactly...more resigned, I guess.  What would I change if I could?  I would probably pay someone to be with my mother to provide care for her 24/7.  Yes, that would be ideal.  In absence of that I am the 24/7 caregiver.  When I am tired, when I am grumpy, when I am stressed, miserable, sad, angry, frustrated, negative, or impatient I remind myself that right there in the name 'Caregiver' I care and give.  Yes, admittedly I am not always happy and loving on the surface but, all I have to do is think about the chair in the family room -- Mom's chair.  It is vacant while she sleeps but I know that it will be occupied the next morning.  Someday, it will be permanently vacant...empty and devoid of her presence.  I feel the tears well up and my throat constricts.  Then I understand what it means to love.  I also understand that my day begins when I greet my mother.  My night begins when I put her bed.  Then I become a wife and partner to my husband.  He and I have sacrificed so much of our time together, and yet feel grateful that we can offer a safe and loving environment for this woman who remains with us, who lives out her last days in relative comfort.  

Day by day.  The light illuminates and then retreats.  I say 'Good morning' and I say 'Good night'. The cycle continues until...until it ceases; and OH!...oh how sad it will be when I no longer have this job to do, this subject of love and care, this moment.

Sunday, October 1, 2017

Dom P, Ancestry, and Me



























They were gathered in the kitchen, each with a special task.  I was told to sit outside on our porch and await my birthday surprise.  Yes, this was my birthday weekend.  I was so happy to have the family here even though I was stressed and tired.  Caring for my mother had worn me out. More than anything, I just wanted to sleep undisturbed and unfettered by my caregiving duties.  While I waited, entertained by my two delightful granddaughters, Mom wandered in and out, banging her walker against the door jam and table.  She was hungry.  Dinner was taking too long to prepare.  My son mixed a cocktail for me...the best Long Island Iced Tea ever!  Mom eyed my drink jealously.  "Oh no," I thought.  "You mustn't have this."  I sneaked inside avoiding the bustle of activity as plates and forks clanked on the counter, buzzers sounded, pots bubbled, and meats sizzled.  My daughter and son-in-law were busy elves preparing a feast of flavors in the kitchen.  I found some rum and Coke and mixed a drink for Mom, careful to go heavy on the Coke and light on the rum.  My son and his girlfriend were encouraging me to add more rum but I didn't think it wise to get someone with Alzheimer's tipsy. I laughed to myself devilishly thinking "What difference would it make?"
"This is delicious," she announced as she gripped the glass in both hands and downed the drink with a rare gusto.  Knowing how difficult it was to keep Mom hydrated, I mused that this was obviously the way to get her to drink more fluids.  Wait...she was drinking on an empty stomach!  The Responsible Me kicked in; "Have some chips," I suggested, hoping that they would absorb the alcohol.

When at last the meal was ready, my daughter appeared at the door smiling broadly.  She and the rest of the family had pulled it off.  They had brought a birthday to me since Skip and I couldn't do much in the way of celebrating my birthday elsewhere; not with my mother's condition.  I had said it.  I told them that we couldn't leave Mom alone now.  No...not now.  She was too confused, too easily agitated. Surprisingly, she proved me wrong.  She was in fine form.  She remembered who we were, little facts about the family, and even managed some quick repartee.  Was it the rum?  Maybe it was helping.

We dined on wonderful food as we crowded around the table in merriment and celebration.  Then came the birthday toast.  A bottle of Dom Perignon (provided by my son-in-law and daughter) was brought to the table.  Okay, I've got to admit that this was really special.  I waited with growing excitement as they popped the cork and handed it to Skip to pour. I watched the bubbles (the tiniest ones) floating to the top of the liquid and remembered that the finer the Champagne the tinier the bubbles.  "Savor this," I reminded myself. Skip lifted his glass to wish me a happy birthday in a clever and loving toast.  We all sipped from the fine Champagne.  I took a small taste feeling the sparkling liquid gold tickle my throat and tried to decide if it lived up to its reputation. Yes, I decided.  It definitely did!  It wasn't so much the flavor but the aftertaste.  There was a certain smoothness, an elegance of flavor, a quiet assertion that fine grapes and warm sun had joined together to make an intoxicating refreshment that was to be relished. 
Even Mom was given a small glass."This is strong!" she remarked.  "It's gone right down to my garters," she quipped and then beamed as we all laughed boisterously at her joke. It was a rare moment to cherish -- a 98 year old still able to engage in the merriment.

Cake, Champagne, flowers, and then presents filled the night.  My daughter announced that we would be attending the ballet. Our son and his girlfriend gave me a kit to check my ancestry with a quick saliva test -- something that was non-existent when I was born. (My how times have changed!)  I was thrilled with the prospect of finding out about my ancestry even though I was already certain that I was a confusion of myriad countries and races.  

The party had moved outside to the fire pit.  The granddaughters had been promised this traditional end to our cooler evenings but slowly they began to hang their heads sleepily. With Mom tucked in for the night, I returned to the dwindling numbers around the fire.  I was determined to party into the wee hours but I too became drowsy.  I struggled to make these fading moments last for just a little while longer. The light-hearted chatter almost masked the depth of emotion I felt.  I looked at their faces...each of them so special, so dear.  I listened to their voices; I watched the firelight  reflected in their eyes, and wanted to capture each smiling face in a memory.  This night, this celebration, this shared love; how special and yet how fleeting it felt to me.  I wanted to hug each of them to my heart and cling fiercely.  I suppose when one reaches a certain age sentimentality dominates all family gatherings.  Our numbers are not so large, and we are separated by miles but it is always the same.  We gather for occasions and enjoy.  We laugh, we talk, we share, we support one another.  This enduring bond of love is ever-so-important to me now more than ever.  I am so deeply embroiled in caregiving and finding that stress has become a way of life; and yet I know that my family will rally round and help when help is needed.  It is the best birthday gift of all! 

When the last dish was dried, the last glass placed back in the cabinet, the last surface freed of crumbs and spills, all without my assistance, I thanked everyone and went to bed.  I thought that I would go right to sleep but instead I reviewed the day, the comments, the moments.  Was it possible that my heart was actually glowing?  It certainly felt that way.  Then I remembered the Ancestry Kit.  What would it reveal?  I already knew that it would report in a clinical fashion and would satisfy the question of familial backgrounds but it would not tell me what my ancestors thought.  It would not show how they felt about each other, what emotions were when they gathered together, how they laughed and cried together.  The births, the illnesses, the inevitable passings of one generation after another; this would be understood but not explained; yet here I was, the embodiment of all of this history, all this love.  Now, on my birthday I reviewed this and smiled with a deep satisfaction. They slept -- the whole family...the eldest to the youngest, oblivious to my overwhelming gratitude and affection.