Friday, July 27, 2018

A Short Conversation with my Mom

Several of my friends have suggested that I have a conversation with my mother about, um...well... transitioning. It's not an easy discussion.  I mean, I wouldn't want anyone to think that I was encouraging her to go towards the light.  However, she does seem a bit stuck here.  She's not having fun but doesn't know how to exit.  Mom goes through the day, a zombie.  There is little cognition and no interaction.  However, this afternoon she seemed to have a lucid moment so I seized the opportunity. Mom was sitting on the porch rocking.  I stepped outside to have a little talk and maybe get some clarity on 'why' she feels the need to hang around even if her spirit seems somewhere else. I don't know what I was expecting but thought that it was worth speaking those words often left unspoken.  I figured that she, who was closer to communicating with the great beyond might have something profound to say.

Me:  Do you ever think about dying?
Mom: No.
Me: Why not?
Mom: I'm too busy.  I don't think about those things. (I had to laugh since she does nothing but stare at nothing, eat, and sleep)
Me: Are you afraid of dying?
Mom: NO.
Me: What happens when you die?
Mom:  Shrugs
Me: (changing the subject)  Do you  ever see your husband, Nick?
Mom: No
Me: Where is he?
Mom: I guess he's in Heaven.
Me:  So does he come visit you?
Mom: NO
Me: Where's your mother?
Mom:  Maybe in Heaven.
Me: So does she come visit you?
Mom: No
Me: So does anyone in Heaven come see you?
Mom:  Shaking head.
(This is not going well.)
Me: Where do you think you will go when you die?
Mom: I don't know.  I don't think about those things.
Me: Why not?
Mom: I'm too busy to think about those things.
Me: What keeps you so busy?
Mom: (shrugging.)  Whatever is going on.  You know, lots of things.
Me: Okay then, I can see you're busy sitting on the porch, in the chair and rocking right now--staring at the trees.  I'll go back to work inside.  Thanks.  Good talk!

Mom returned to her rocking and staring.  Maybe that is why I don't hear her talking to 'unseen' people anymore.  She's just way too busy.

Wednesday, July 18, 2018

Blank Screens and Striptease Sundays
 Mom has supplied me with enough material to fill a book this past week.  Late stages Alzheimer's provides us with quite a challenge, lots of mess, plenty of difficult moments, and more and more that we can shake our heads at. I am finding that every day she has at least one outburst, stubborn, or agitated moment.  She ignores, plays deaf, scrambles her words and thoughts, misunderstands, does something unprecedented, does something unsafe, and throws the house into turmoil.  She's just one little old lady but my oh my can she create drama! 

So...this week when I was mentally and physically exhausted and wanted her to go to bed I announced cheerfully, "It's bedtime, Mom.  Are you ready to go to bed?"  (I shouldn't have asked.)
Mom's answer was a definite, "NO!"

"No?" I replied a bit dumbfounded.  "Aren't you sleepy?  I thought that you wanted to go to sleep."
Mom didn't reply.  She turned to watch TV.  Evidently there was a commercial on that held far more interest than human interaction.
"Mom?  Can you answer me please?"

Mom continued to stare at the television even leaning forward to feign far more interest than usual.  (Now, I must take a moment to clarify that Mom never follows anything that is on TV.  She watches but doesn't know what she is watching and has no comments about anything that is on.  If I ask about something like, 'Did you see that cute dog?' she stares without comment and if I continue to ask, she tells me that she wasn't watching.) So, I knew that the TV was not something that was distracting her with a riveting message.  "MOM!  Pay attention to me!" I insisted.  "Did you hear me?"
(No answer.  Not even a twitch.)
I could feel the impatience welling up inside.
"Mom!  MOM!  MOM!  M-O-M!!!!"
Still nothing.
I tapped her on the arm.  "Mom can you hear me?"

"I don't want to go to bed," she answered.  

(AHA!  She did hear me!  Now I knew for a fact that she was simply choosing to ignore me.) "Turn the TV off," I told Skip.  Then I stepped in front of my mother and lectured her like she was a small child.  "You're being rude. When people talk to you, you should answer."   
Mom looked past me to the blank TV screen and remained silent.  I sighed deeply and sat down relishing the quiet in the room with the TV turned off.  "Okay, we'll just sit here then.  I went back to my laptop where I was editing something and Skip went back to his laptop to read a news article.  The fan overhead continued to click as the blades circled around and around rather like a clock...'tick, tick, tick, tick.'  It was making me sleepy.  Minutes passed and I looked up to see my mother staring blankly at the TV.  I couldn't help myself...
"How's that show you're watching?" I asked.

"It's okay," she answered without enthusiasm
"What's it about?"

"Oh.  I don't know yet,  I just sat down."

"Well let me know if it's good," I continued cheerfully. She leaned forward as if to see the screen better.  I waited ten more minutes enduring the frustration of watching my mother stare at a blank screen until I finally had enough and got up, took Mom by the hands and led her to her room.  "You're going to bed now," I told her kindly but firmly.  Mom followed like a dutiful child.

Fast forward to Sunday when the weather was warmer but not as hot as last week . That's when I had  the unfortunate encounter with Mom (when I tried to bring her inside from the screened porch because she was frying her brains out there. )  She had a tantrum and lashed out at me yelling that she wasn't hot.  Well, this week and particularly Sunday when it was at least 8 degrees cooler, I looked up from my seat in the family room where I can keep an eye on Mom just outside the window.  I noticed her moving around in her chair. I thought that maybe she was getting ready to come back inside.  Skip was sitting across from me and blocking a complete view so I asked if he could see what she was doing. 

"Oh no!  She taken her blouse off!" He announced with a groan.

I too groaned audibly.  Needing to save my work on my laptop, I put off going outside for a minute.  Meanwhile Skip decided that he needed to be anywhere but where he was and made a quick retreat to his office.  By the time I stood up Mom was bending over and wriggling about.  I rushed to the door in time to catch her taking her pants off and about to remove  her bra.  "STOP!"  I told her.  "What are you doing?!"

"It's too hot!" Mom complained pulling at her bra.  

" uh.  These stay on!"  I began to put her pants back on and Mom threw a fit.  

"It's too hot!  Stop it!!!"

I strong-armed her back into her clothes and took her inside explaining fruitlessly that one doesn't take one's clothes off in public.  (In fact, with the new construction going on next door to us if it had been a weekday Mom would have caused some poor workman to have nightmares.) 
When Mom walked back inside I could detect the familiar smell of wet diapers and told her to go to the bathroom.  

"I don't have to."

Hmm.  I guess I had to agree that the horse was already out of the barn so to speak.  I looked away for a moment and Mom sat down on Skip's chair.  "Don't sit there!" I yelled as I turned back.

"Why not?" 

"Because you're wet and smelly," I mumbled.  I knew that she couldn't hear me and that made it okay to verbalize.  While she waited for an answer I did what I try not to do.  I let my inner child out deciding  to give her a taste of her own medicine.  I turned away from her and averted my gaze. I acted like I never heard her question.  She stood there waiting for me to answer but stubbornly I refused.  Then I noticed that there was a TV commercial  on.  "Yep," I told myself. "Two can play this game."  I walked over to the TV and stood there totally engrossed in a toilet bowl cleanser commercial because, well, you was just so very interesting!!! 

Thursday, July 12, 2018

Better Late than Never!

Today I posted something on Facebook...a confession of sorts. Here was the post:
"Well evidently before I get all full of myself for keeping track of everyone's birthdays, I should double check for accuracy. So, I had the gift, the greetings, everything ready to go and waited for the right day to celebrate the birthday. She (you know who you are!) thanked me as I gushed over the greetings, the moment, the day. I told others to wish her happy birthday and we sang our best and loudest 'Happy birthday to you...' only to find out it was the day before. Oops. To make matters worse I insisted that I was right because it was on my calendar! Hahahaha. Just a little embarrassed."

There followed  comments about similar faux pas moments among my friends along with a comment that resonated with me, "Well, better late than never!"
BETTER LATE THAN NEVER.  Hmm...I wonder if that also applies to the time my husband and I got all dressed up to attend a party at his coworker's home. It was kind of quiet when we approached the house and we thought that it was strange that the attendees were so 'orderly' and also wondered about the absence of cars parked on the street. I asked my husband if he was sure of the date and time and he repeated the information back to me. Okay then...we knocked timidly on the door and waited. Finally, the host peaked around the small crack in the opened door and looked at us inquiringly. We noticed that his hair was tousled and he was wearing a pair of lounging pajamas. (I wondered about the kind of party this was!) Our bewildered host asked what we were doing there and when we appeared surprised by his question the 'host' added, "You're not here for the party, are you?" 

 "Why yes, we are," Skip replied. 

His co-worker laughed and said, "Well, you missed it. It was yesterday!" 

I shot one of those 'If-looks-could-kill' glares at my husband, handed off the present we had brought and made a hasty retreat to the car vowing that I would never rely on Skip to make any social arrangements again! However, I always get in trouble when I take on the holier than thou persona.  I must continuously remind myself that I too am capable of small slip-ups. (Please don't tell Skip.  I will never actually admit this out loud.) 

Parties seem to be the areas of the most errors.  I'm not sure why but this is our biggest failing.  Wrong times, wrong addresses, and wrong attire are among the biggest blunders.  

I am reminded of the invitation for a Halloween party where the call came to me and I told Skip that it was a costume party. (The hostess said that we should come dressed metaphysically because she was having a fortune teller come.) It goes without saying that Metaphysical wearing apparel is not something one finds in a special section of the department store but knowing that the hostess was a bit bizarre I figured that she would be done up in something outrageous, and we as her guests could not be party-poopers.

Okay then, an appropriate Halloween-type costume seemed in order.  I planned what we would wear putting together my mid-eastern 'swami' like look while leaving Skip to figure out what he was going to do make himself look appropriately clad as an oracle. As the day of the party wore on, Skip was still not home from work and I thought that slapping together a costume for Skip was becoming less and less a possibility. When he finally got home there was only time for me to suggest that he wear a black turtleneck, black pants and I painted a THIRD eye on his forehead. (Get it? A third eye as in psychic!) Anyway, off we went to the party. As we approached the door I checked my robes, my jewelry, my headdress, and my heavy exotic makeup. I looked at Skip's simple but effective psychic self and congratulated myself on the paint job I did on his third eye. Smiling broadly the hostess opened the door. She was dressed in a pretty silk shirt and deep navy blue skirt embellished with embroidered moons and stars. I looked past her to see a room full of guests in cocktail attire. Puzzled, I asked, "Um...isn't this a costume party?" 

"No!," she answered. "It's just that I was having a Fortune Teller so I thought that you might want to dress in more mystical kinds of clothes,"she explained laughing. "Oh!" she hastened to add.  "You look fabulous.  Why YOU could be our Fortune Teller too."    I turned to look at Skip to see how he was reacting and all I could see was that darn third eye glaring at me!   Quickly, Skip raised his index finger to his forehead and began scrubbing roughly at his painted eye. By the time he stepped inside he looked perfectly acceptable while I looked like some bizarre demented psychic. All night long, the guests asked if I was the Fortune Teller and after a while I grew weary of explaining the mistake.  Meanwhile the REAL Fortune Teller was downstairs struggling with her readings.  It seemed that our hostess had found someone who was less gifted in that department than the party guests would have liked.  A few women confessed that they were offended by her readings and one guest actually burst into tears.  That's when I made a decision to save the humiliation I was feeling and told people that I was the 'Upstairs Fortune Teller' and proceeded to tell fortunes all night long.  "You will be taking a much-needed trip next year," I told a young man.

"Oh that's wonderful news.  Where am I going?" he asked.

" will be traveling many miles.  It is somewhere you really want to go.  You will make this plan later."  (How ambiguous was that?!)

All night long, people told others, "Oh, that lady is amazing.  You should get a reading."

"I see money coming to you.  It's not much but it will make you happy to have it.  It will be sometime in the late Spring or early Summer of next year. You will be expecting it."  (It was a safe bet that income tax refund will come through then!)

Ah.   The moments of brilliance often overshadow those moments of humiliation!  They do, however remind me that I have more funny stories of embarrassing moments than anyone I know.  Don't get me started...I could be here all night!!!

Friday, July 6, 2018

Grilled Grandma

It has been a while since I have posted a blog.  Perhaps it is because I didn't have anything to say that was fit for publishing.  We hit the 'Dog Days of Summer' early this year, and it has put everyone in a grumpy mood.  Mom has been worse than usual (if there is such a thing as usual).  Certainly, the slow progression of her Alzheimer's makes EVERYTHING worse.  Mom has become more and more apt to act out negatively when she 'perceives' that we are out to get her.  From asking her to sit down on the automated chair lift, to putting on her nightgown at bedtime she is just as likely to scream and pound her fists in derision as to comply.  I feel like we are always walking on eggshells.  If there can possibly be anything uglier than what we have experienced thus far, this is it!  She has hit me, yelled at me, thrown things, and threatened me in violent outbursts.  Five minutes later she is docile and sweet. As I experience these changes I am also noticing some physical changes.  While the elderly tend to be cold all of the time and require a sweater or heat when the rest of us are uncomfortably warm, my mother has graduated to FREEZING.  So, back to the earlier comment about 'Dog Days of Summer' that implies that the heat and humidity have hit us; we have been hiding inside during the day because of the unusually high heat indexes.  The other day the thermometer registered 101 degrees and that wasn't even taking into account the humidity factor that made it feel a great deal hotter.  The Meteorologists on the local news stations warned of taking care of our pets and children and to check on the elderly. Clearly they don't know my mother!  From 8:30 AM Mom insisted on sitting outside on the screened porch which we let her do since it was only a mere 82 degrees at the time.  However, as the sun began to rise higher in the sky and the temperatures began to soar, we urged her to come inside.  She had no interest in complying with our wishes and when we insisted she became belligerent.   I tempted her with food and that moved her inside momentarily but soon she was headed back to the door.
"No, Mom.  It's too hot outside," I told her.  "Why don't you come sit in the family room and watch TV?  Within five minutes of sitting in the slightly cooler family room she announced, "It's FREEZING in here!"  Mom walked back outside to bake in the hot mid-day temperatures. I glanced at the thermometer.  It was 92 degrees and climbing.  By 1:00 I insisted that she come inside but that's when Mom decided to take a nap and there was no waking her.  I watched from inside the family room as she alternated cat-napping and rocking.  I tried again to coax her inside but she was adamant that she wanted to remain outside.  I checked her for heat stroke and decided that she was still okay so I left her for another half hour.  It was somewhat like cooking chicken on the grill.  She wasn't quite done yet so I left her on the grill for another few minutes.  When I came back a few minutes later and poked her, she was well done and grilled to perfection.  "It's time you come inside," I told her with a no-nonsense voice.  When she protested loudly I told her that she couldn't stay outside any longer...."People are dying in this heat!"  She looked around as if to spot others who were sitting outside and then back at me like I was crazy.
"It's not hot," she announced.
"It's a thousand degrees!" I corrected while silently excusing myself for embellishing the facts.
"Oh," she said not terribly impressed with this new information.
She stood up, grabbed her walker, and followed me inside.  I watched her take a full turn around the house.  Her walking path went from back door to kitchen to hallway, to front of entry, then looped back to the back door.  Mom had one hand on the back door when I called out, "NOOOOOO!  Stay inside."
Mom ignored me and tugged on the door.  "You're gonna kill yourself!" I warned.  Mom blinked at me in confusion.  "It's too hot," I clarified.
"Oh." She said, and then without understanding , she walked back outside.
I followed her out and turned the overhead fan up a notch to High.  Mom immediately shouted, "It's FREEZING" and I turned it back to low.

A little later I tried another approach.  I took some ice cream outside to help her cool off.  She ate it up greedily. I thought that put her in a good enough mood to get her inside but when I attempted to help her get up she pushed me away.  "I'm fine," she said with a slight slur.  "Just put the white ryan."  She gestured towards the screen.  Her aphasia had kicked in and so there was no telling what she was saying. I wondered if the heat was worsening the problem.  Maybe her brains were baking. I pictured the last few functioning brain cells sizzling in the heat. This was not healthy and I told her so.  That was too much for her and she told me to "Shut up!'  That was Alzheimer's Brain for sure.  She had never told me that in my entire life!  I walked back inside with a heavy sigh.

Right now, as I write this, the temperature on the screened porch is 100 degrees.  Mom is rocking lazily and staring at the trees.  She has been sitting out there for hours.  I have brought her water, which she refuses to drink. I have tried to physically remove her from her chair and she has protested loudly.  I have tried to bribe her with sweet treats inside. "Maybe later," she has told me.  I have even offered to take her upstairs to her room (something she always wants but never gets during the day, since it will only encourage her to stay up there and sleep all day and then not sleep at night.)

Perhaps I will go back outside now and offer a basting brush with some bar-b-que sauce since she is clearly going for Grilled Grandma of the Year.  While I'm at it I might as well don a prison suit since I will undoubtedly be arrested for elder abuse.

Sunday, June 10, 2018

The Memory Keeper

Available Now on Amazon and Kindle

I am a writer.  That's difficult to say when I'm so busy being a caregiver for my mother who is 99 years old and has had Alzheimer's for 15 years. Mom lives with us.  She is in advanced stages now but was exhibiting signs of Alzheimer's even while my husband and I cared for my father who also had Alzheimer's.  No one...NO ONE is prepared for this!  There's no caregiver's manual that tells us how to do this job.  I decided that as a writer it might help others  to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way.  I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration.  I've discovered so many things to help me through the most difficult job I have ever experienced.  How could I do anything BUT write about this to help others? My latest book, The Memory Keeper, is the fourth in a the series of our journey and experience  dealing with the devastating disease and condition. It was a cathartic process to share my words, my thoughts, my emotions.  They are sometimes raw, sometimes irreverent, often loving.  I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there.  Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn't discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues.  One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions.  Many have thanked me for giving them permission to laugh through their tears.
In my book, The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her.  Her memories are lost...imprisoned in the disease-ridden brain that doesn't allow for thoughts, speech or even physical control.  I alone must pass down the family stories.  I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding.  The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment.  We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can.  I am resolved...yes.  It is too late for tears.  It is time to smile about my mother's  life well-lived.

Monday, May 7, 2018

Dear God; I've been meaning to ask you....

Dear God;

I have been meaning to talk to you for a while now but recent developments have pushed me to finally do it!  I have a few questions for you.  I thought that I would wait and ask you when  I get to Heaven (that's assuming I will go to Heaven., and, uh, I guess I shouldn't presume to know that.  Oh, and I don't mean that I will actually get to talk to you; and if you are busy and stuff with running the whole Universe I can just talk to one of your assistants; but...well, never mind.  I'm just gonna lay it all out on the table now instead.)  

Anyway, I thought that maybe I could trouble you to talk about this--what with the immediacy of the situation.  Again, I understand that you are a little busy so I am happy to get the answer from one of your assistants.  But you know, it would be nice to talk to you if it's not too much trouble.

Oh, that's really nice of you to say it's no trouble at all.

So, here's the thing; I have been saying for a while now that I should ask you "What's the deal about mosquitoes and ticks? Why them?"  I mean, I can understand snakes and spiders and even some disgusting parasites,  but ticks and mosquitoes are a whole other thing.  They don't seem to have any use at all.  I usually think about this when I'm kind of busy and maybe a little annoyed. I just never seem to get around to asking though.  It seems like a kind of small thing to bother you about. But events of late have really gotten me thinking about you...wanting to talk to you.  I guess that you must have a quirky sense of humor.  I think that it can seem kinda funny when you stand outside and look at things from your perspective. But I am having some trouble seeing the humor right now.  

So, can we discuss this...Alzheimer's?  Why is that funny?  I know that my patience is being tested but honestly couldn't you just get me stuck in heavy traffic, or make me late for an appointment every once in a while?  How about letting the dog tear up the lawn or maybe just keep pestering me with random robo calls? You can add a healthy dose of gophers and voles eating our plants.  Yeah, that would be fine too, but when it's about dealing with my mother 24-7, when I am changing sheets and night clothes, when I am having to sterilize her entire room every morning; when I am dropping everything to stop her from doing something awful, eating her hearing aid, causing herself some injury, keeping her from choking on her food,  blowing her nose in her clothes, throwing up on the carpet, going to the bathroom but not going in the bathroom; yeah, that's really a test of my patience!

 Look, we already know that I'm flawed...deeply flawed.  So what are we doing here testing me?  Is it just for kicks and giggles that you gotta rub it in?  I'm sorry.  I mean no disrespect.  I accept that this is not my forte.  I am horrible at this caregiver thing.  I am learning as I go but I don't have it in me to be good at it.  I know this.  I acknowledge it.  I could tell you stories and cite examples but of course you already know.   This is all so stressful and as I am told over and over, stress kills.  

What?  WHAT?!  Are you just waiting to see how long it will take to get me to crack?!  What then?  Who takes care of Mom then?  Look, she's almost 99 years old.  Oh yeah, sorry, you know that.  I don't need to remind you.  So she deserves a nice peaceful life and not have someone pestering her to eat her veggies, drink some water, do this and don't do that.  I feel awful about telling her what to do every minute.  But without me reminding her to move, she just sits in one spot shuffling her placemat back and forth on the counter.  So what's the purpose with that?  Oh, and as long as we're on the subject of purpose, what's up with my purpose?  I'd really like to know because every time I get focused on one thing, one direction, one path I get diverted.  My days are crazy enough without constant changes, challenges, and upheavals.  Oh, sorry.  I don't mean to complain.  No, no I mean I'm really grateful to you for all you have given me.  It's just that I can't seem to see the direction all this is going and why.  

What's that?  Huh?  Ohhhh.  You mean that I don't need to figure this out alone, that we're partners in this.  Just trust in you.  I remember now.  Trust that it is all good.  Okay.  So what you're saying is to allow this to happen and the purpose will reveal itself at the right time.  Hmm.  I think I understand.  I don't need to appreciate or even know the plan.  Just like I don't need to know why the sun shines and the Earth rotates on its axis.  I just trust that it will continue and it's all good. 

Okay, Yeah. I guess that makes me feel a little better knowing that you're in charge. I'm not alone here.  No, come to think of it, actually it makes me feel a lot better...a whole lot better!  Wow, I...I feel like a heavy weight was just lifted off my shoulders.

Thanks God.  Good talk. We can discuss mosquitoes and ticks some other time.