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.

Friday, September 22, 2017

The Seventh Wave




When I was a young girl I remember hearing that every seventh wave at the beach was the biggest one.  For surfers this was great news as they sat and waited to ride the 'big one' in.  Later I learned that it was a myth; still, I couldn't help but count the waves every time I visited the ocean.
I haven't thought of this in many years until now as I research the seven stages of Alzheimer's Disease.  I was reviewing my mother's progression through each phase almost clinically checking off the myriad symptoms, the behaviors that manifest themselves with each phase.  I had been braced for the seventh and worst stage -- the biggest wave.  I knew it was coming, I had warnings.  Just like the girl standing on the shore watching the biggest swell form far out in the deep water then build momentum and size as it approached.  On days when the swells were especially big I would run backwards as the wave approached knowing that it might break closer to the water's edge and catch me in the tumultuous contact with the shoreline.  Too often I had been upended by a large wave that threw me down and tossed me about like an abandoned seashell.  So it was when my mother's illness reached that seventh and final stage, the biggest and worst, most destructive wave (metaphorically speaking.) 

The smaller waves hit the shore in a steady progression.  I watched and waited through the agonizing years of confusions, memory loss, physical changes and finally, finally this moment. There it was, the seventh wave building in the distance.  I braced myself.  I was ready.  It built slowly causing anguish as I watched helplessly.  No.  I couldn't hold back the illness any more than I could turn back the tide.  The wave would roll in looming larger and larger before crashing down on me.  It arched itself menacingly.  I felt the foam and spray of the warning  that it was about to pound into the sand.  My mother had been showing increasing signs of anger, inability to communicate, lack of understanding of simple words spoken to her. Now here it was spewing the foam and fury, showing the power of nature, reminding me that just like the ocean, Alzheimer's rolled in with impending force.  The seventh wave was a tidal wave.  It was destructive, horrific, and totally dreaded.  There was no life preserver to throw.  There was no way to avoid it.  

My mother sat at the edge of her bed.  She was angry.  I didn't know why.  It was bedtime and instead of putting her nightgown on she threw it in the trash can.  My husband, Skip was helping with her shoes and socks.  He retrieved the gown from the trash and told her to get undressed.  Then he left the room allowing her privacy.  I remained to help her remove her clothes.  She sat on the bed glowering.  

"What's wrong?" I asked with concern.  She didn't answer immediately.  She couldn't find the words.  She gestured helplessly, waving her arms about in frustration.  I asked again.

"I don't like it!"  She shook her head.  She looked towards the door.  "He shouldn't...I don't like the way he spoke to me."

"What?  Why?  He just told you to take your clothes off so you could go to bed."

"I don't have to, and I don't want to," she proclaimed with the petulance of a small rebellious child.

"Why are you so angry?"  It was a stupid question.  I knew better than to ask.  That afternoon I had asked her several questions, each one eliciting the same response, 'I don't know.'   Why did I think that this time it would be different?   

My mother surprised me.  She provided an answer, an insight:
"It's not nice...the way he spoke!"  

 I became defensive.  I wanted to engage in an argument to defend my husband who out of the goodness of his heart jumped in to help me -- to help Mom.  How could this selfless act be misinterpreted?  Instead, I turned away and called to Skip to come back into the room.  I explained how Mom was feeling and reminded him that his abrupt demeanor had been insulting.  Skip immediately apologized and hugged her telling her that he didn't mean anything by it.  Mom smiled and her expression softened.  It wasn't his apology that made the difference; it was the physical contact.  A hug calmed her.  I thought about the importance of this since verbal communication was so difficult.  Words were confusing and misunderstood, but a loving gesture was always appreciated even among those with the most remedial cognition.  (Often I find myself behaving as a custodian rather than a loving daughter.  Instead of a hug I  execute my duties with clinical efficiency forgetting that my mother responds to the gentle touch, the reassuring gesture more than the words.  It is easy to forget, especially when my mother is combative, stubborn or irritable.) I softened and gently chided myself for succumbing to my own reactions.  I knew that as much as I fought it, my mother had entered the final stages of Alzheimer's and I would be dealing with all of its ugliness, all of the anger, the frustration, the fear and the emotional upheaval that it caused both for the patient and for the caregiver.  

Yes, I  am now observing the seventh wave, and rather than stepping back higher up the sand, I wade into the water.  I hold my breath and dive into the crest praying that I will survive while knowing that the wave itself will soon be nonexistent as it spends itself on the beach before withdrawing.

Friday, September 8, 2017

Hallucinations

I have witnessed my mother's hallucinations over a period of time but they are increasing to the point of being alarming, sad, disconcerting and yet, absolutely hilarious.  Last night at around 1 AM she shouted out several "Hellos".  I ran into her room to see what was going on.  Evidently she was hosting a party in her room but when I walked in she wasn't clear who was in attendance.  A few days ago she began talking to someone who supposedly gave her something to taste.  She was chewing on the imaginary tidbit saying, "Mmm.  It's so sweet!"  Today she walked into the kitchen and began talking to someone who wasn't there but refused to tell me who it was.  (Does she have a secret pal?)

This evening, Mom walked to the back door, opened it and shouted out to the empty screened porch.  "There's a light on in the kitchen and no one is in there.  Someone should turn it off?"  Then she stood at the door for a moment and repeated her message.  At this point I decided to ask her who she was talking to.
"Those people out there," she replied.
"What people?" I asked.
"Them," she told me pointing at an empty porch.  "That whole gang out there."
"Okay," I said.  "So you see a whole gang of people?"
"Yes, she insisted.
Now, to be clear, I lecture others about how we shouldn't correct those with dementia.  We should enter their world instead of trying to pull them into our world. Normally I do that too.  It is crazy and totally counter-intuitive for me.  My responsible and logical self wants to point out the errors in my mother's thinking and perception but  I overcome my strong desire to be the one in control and play along...usually.  Today, was not that day.  It was the end of the day.  I had spent the entire day dealing with stressful things.  My brother was in the hospital; a brother who also has Alzheimer's and who is living out of state without a family member to help with medical decisions.  I was also dealing with a few caregiver issues that arose from a couple of the caregiver support groups. I was trying to help or find help.  In addition, my Mother-in-law on the other side of the country was injured and in acute pain. Both my husband and I were in contact with his sister, his mother and trying to assist long distance.  I will avoid listing all of the other things that were of concern other than the approaching hurricane that was threatening our area and for which we were preparing just in case it changed course and blew this way.

So, to get back to Mom's hallucination; well, I guess I was not feeling mentally equipped to handle it as well as I should have.  Instead of telling her to invite everyone inside I asked her what the people to whom she spoke looked like.  She peered intently.  Then, shaking her head she replied that she couldn't describe them.  "There are too many people out there.  They just look like a group of people."
"Yes, but can you describe them?  Are they men? Are they women?  What color is their hair?"
"Oh, you know," she answered.  "I can't tell you everything."
"Well show me one person," I insisted.
She walked out and pointed to an empty chair.  "There," she told me.  "Right there.  See?  That woman right there."
"What color is that woman's hair?"
"Green."
I looked at the empty green chair.  "Touch her," I commanded. Mom obediently touched the chair.  "So are you touching a person?" I continued.
"Yes.  Of course I am."
"Grab her hand and hold it."
"I can't," she replied.  "She just got up."
Still I couldn't let it go.  "Show me someone else," I pushed on.
"There," she pointed.  "That man over there."
I shook my head and said, "Okay.  Well let's go inside now."  I resigned myself to the fact that Mom was not going to admit that there was no one there.   

It had been that kind of day.  Mom had begun the day angry because she was sitting and waiting for someone to come get her and without calling out to us, I simply went up to help her at the usual waking time.  I found her standing in the middle of her room, naked and trying to wrap herself in a blanket.  She was tripping over it and had it stuck under the wheels of her walker.  I asked her what she was doing and why she had taken her nightgown off.  She replied that she wanted to put her clothes on but someone had to help her and she was waiting for them to come.  I reminded her that I was that 'someone.' Getting her dressed was an ordeal because she couldn't perform even the most simple tasks and I had to assist with every single thing.  (It was a new low.)

All day long, Mom walked around and around aimlessly.  When I tried engaging her in conversation her aphasia wouldn't allow for discernible conversation or answers. But this...this massive hallucination was more than I could bare.  I felt myself shaking inside.  My stomach was knotted. I tried to calm myself, to count to ten, to do some deep breathing but Mom was pacing again and finally I asked her what she was doing.  She couldn't answer.  When she sat down in the place that I usually sit, I asked her why she was sitting there and she gave a muddled response that was unintelligible.  She glared at me when I tried to provide some assistance.  Something was bothering her but she couldn't express herself.  There were two more incidents that required answers she couldn't provide.  Once more she was on the move and I asked where she was going.  She grew angry and petulant.
"I'm going to bed!" she scowled angrily.
"You can't.  It's not time."
"Well I want to," she yelled at me.  (I had pushed her over the edge.)
"Why?"
"Because I am tired of you asking me questions!"  (Hmmm...even though she had dementia and aphasia she managed to express how angry she was.  Yup!  I got the message loud and clear.)
Now it was my turn.  I'm not proud of these moments, but I lost my temper.  I told her, "Okay, go to bed...because I don't want to see your snarky expression anymore."  I stormed over to the door to open it to her room. I took her upstairs. I decided that I would get one more 'dig' in.  "Can I help you with your nightgown or is that a question you don't want to answer either?"  Suddenly I was the injured child.  My mother became the mature one. with a kind tone she replied, "I didn't mean that you couldn't ask me questions...I wasn't really mad at you. I'm just mad at the situation," she told me with a lucidity that I hadn't heard in over two years.  I was amazed.  It was like a slap in the face.  It calmed me right down and now I was apologizing to her.  I explained myself telling her that I loved her and as her daughter who cared for her I sometimes might push a little too hard.  I felt terrible.  Reminding myself that I shouldn't lose my temper, that I was dealing with someone who couldn't help herself, I had to allow for my mother's temper just as I might do with a small child who found that the only means of expressing frustration was through an emotional outburst.  I told Mom that it was okay for her to get angry once in a while.  "Neither of us is perfect," I reminded her with a smile and a wink.
Mom smiled back and nodded.  "I'm sorry," she told me with eyes filling with tears.  "Sometimes when when you ask me questions I get confused.  It's upsetting."
"I know," I told her consolingly.
My heart was full. I was so very sorry I had been angry.  How could I have lost my temper?  I berated myself.  My eyes also filled with tears as I gave her a hug.  "I love you Mom."  I turned and walked away before she could see me crying.  I stood at the door and shed my guilty tears but then slowly remembered my own words I had just spoken to her.  "Neither of us is perfect."  I could forgive myself for my lapse.  It was alright.  I walked back to her bed, straightened the covers and pulled the sheet up under her chin.  "Goodnight.  Sweet dreams," I told her softly.  She was already rolling over to fall asleep smiling sweetly.
"Thank you," she mumbled back in a sleepy voice.
I turned off the light and walked away grateful that the day ended on a good note.  There was no real resolution. However, there was solace in knowing that beneath the high emotion there was still a profound love.  The love that we shared was sometimes battered, sometimes abused, and even sometimes ignored, but still there, still in tact.

It is a strong reminder that the memories might be gone, the mind might be failing, but as long as there is a breath to breathe my mother will always know deep down inside that she is loved.  Love speaks to the part of her protected by some unseen force.  Her being...her soul will always be the part of her that time and the ravages of Alzheimer's will never touch.  That is what I speak to...it's what I will fiercely protect, treasure, and address when my words have lost all meaning, when her awareness is gone, and when her thoughts have dried up.  When her own words fail and the smile fades, she will still know I love her.


Friday, August 25, 2017

Caregiver's Support Group



Caregiver's Support Group
by Jessica Bryan
2017

Moving through time and space, doing what must be done.
Filling the moments of despair with distractions.
Reminding myself that I must engage in self-love to love another.
I know, I know.  But oh how difficult, how seemingly impossible to take the time,
To take away from the things I must do, the care I must give.
With effort I paint a vacant smile that masks the sorrow, the grieving, the pain.
I go, I gather with others. I gaze at them...the strangers who have come together to share.
They are burdened just as I am, but in their own ways.
We are standing on shifting sands,
Custodians of another's soul, as it exists in a failing body of fragility.
We observe without the power to alter the course of what is to be.
We are merely witnessing the steady progression of life.
Just as the sandcastles built along the shore in the blazing midday sun,
Are soon washed away by the pounding waves of the ocean,
We are reminded of the impermanence of the body.
But the sand...the sand that built the fortresses,
It is still there in the vast sea that stretches across the horizon.
It goes on and on and on, beautifully mixed with the living soup of creation.
We sigh, and find solace in this thought, this knowledge.
For it provides us with the strength to carry on.
Strong arms comfort, enveloping each other in understanding,
Without truly knowing.
We speak, we cry, we confide,
Knowing that somehow this will help ease but not remedy.
Too much...TOO MUCH to bear alone,
And so we find meaning,  purpose,  love, and will to continue,
As we group together in support and love.