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.

Friday, March 23, 2018

Grumpy Grandma

Alzheimer's is an illness with many phases.  For some, it ends with the inability to talk or do much to move from one place to another.  I think of the familiar image of the old man or woman, stooped, shuffling, wearing a dazed expression, sitting or lying in bed, feeble and quiet.  There is another side to Alzheimer's...a much uglier side. There can be personality changes in some people that cause emotional outbursts, anger, and even aggressive behavior.  After 15 years of (diagnosed) Alzheimer's, I figured that my mother was not going to exhibit that side of Alzheimer's, that we would escape the emotional outbursts, that her placid and happy demeanor would be maintained.  Sadly, that too has changed.  As she argues with us over almost everything we say, I try to remind myself to be patient, to maintain a calm and supportive demeanor, to coax rather than criticize. Then, in a moment I ruin everything with an out-of-control statement.  Today it was her constant fidgeting with her buttons.  She buttons and unbuttons  over and over, hour after hour.  She has ruined and ripped every sweater she owns as she stretches the button holes so they no longer stay closed.  Today, when I explained (for the 100th time) why she should leave her sweater alone, she announced angrily that she didn't unbutton her sweater.

"Yes, Mom.  You did.  And now, you are rebuttoning the sweater, but it won't stay closed any more."
"You're wrong!" She told me.  "I didn't touch my sweater.  This is the first time!"
(I lost it.  I had to say something.  Why?  I told myself to be silent but the words welled up inside and popped out of my mouth.)  "Oh really," I said.  "I'm wrong? HRMPH.  You think you know better?  Well fine.  Go ahead and ruin another sweater!"
Mom scowled at me and said, "I know and you don't, so I'm just going to ignore you." (She's been doing that a lot lately...ignoring anything I tell her to do.)
I muttered something under my breath "Grumpy Grandma!"  It made me laugh and lightened my own mood.  I told myself that it was okay.  I could ignore her; but a moment later she was unbuttoning her sweater and pulling at the button holes again and I found my reaction even worse.  I needed to prove my point.  I picked up my camera and recorded a quick video to show her what she was doing.  When she looked at the screen she said, "That's not me!"
"Who is it, Mom?"
"Well how should I know!  That's some old woman with white hair!"
I tried to argue but decided instead to take a photo  to show her right away.  "Look Mom.  I am taking your picture right now.  See?" I snapped the shudder and showed her the photo.
Mom peered into the screen and shrugged.  Then she closed her eyes stubbornly.  There would be no more discussion.  I was arguing with a child and there was no point in trying to present a rational argument.  I stepped back and looked at the situation.  At least she wasn't throwing things at me, flailing about, or threatening to hurt me.  Not yet...     
I hope that it doesn't come to that.  I hope that these outbursts are to remain minimal and manageable.

The diminished understanding of all things breaks my heart as I stand by helplessly trying to explain things that cannot be explained.  Yesterday, Mom had gas cramps and sat crying that she was in pain.  "Somebody help me!" she pleaded. Skip and I did what we could but there wasn't much we could do. We tried to give her water but she told us she would throw up and refused to drink it.  I poured some Milk of Magnesia but she refused it as well. I explained that she needed to go to the bathroom but she yelled from there that she needed help.  She cried and pleaded again for me to do something.  She didn't remember or even understand the problem.  Finally, in desperation,we took her upstairs to her bedroom and helped her into her bed.  I hoped that she would fall asleep and the pain would subside.

It was dinner time and I wanted to feed her but she was still asleep.  I worried about it but decided that sleep would be better and hoped that she would not awaken too early.  Mom slept until 9:00AM the next morning which told me that her body needed that rest.  It's not that this is an interesting story or an important one.  It's just the day to day stuff that we deal with.  It's that reality of Alzheimer's; and sadly, the tragic truth of a miserable disease.  It's nothing to laugh about, and yet, I do...WE do.  Skip and I shake our heads, complain to each other, marvel at our patience (when we have it!) and congratulate ourselves for getting through one more day; each minute, each hour, each day, week and month. Then we see the absurdity in all of this.  It's as if we have fallen down the proverbial rabbit hole. We laugh about the craziness and how we handle or don't handle it.  What a lesson!  What a journey!  What a challenge!

Saturday, March 17, 2018

MAN Flu...It's a Real Thing!

My husband, Skip, rarely gets sick.  He has a strong constitution.  However, the few times he has been 'taken down' by a virus he is sicker than a dog (according to him). MAN flu!  It's that condition that men get when they are sicker--in fact, at death's door with the first sneeze, the first cough, and (Heaven forbid) a fever! Skip knew that he could only push it so far since I am caring for Mom too, but I certainly heard about how sick he was!

Being that we are caring for Mom, we have to be very careful to keep his germs contained. That is no small task.  Skip is the keeper of the TV remote, opens the refrigerator, makes the coffee (because he is a 'Coffee Nazi' and no one can make it as well as he.) He opens cabinet doors, flushes the toilet, picks up the phone, turns on the water at the sink, and handles the mail.  All in all he touches things...lots of things, being unaware or perhaps just forgetful of the fact that those nasty little germs remain on all the surfaces he contacts.  Now, I don't want to appear to be a know-it-all, but when I get sick, I carry anti-bacterial hand cleaners around and whenever I touch anything I wipe it afterwards.  Even when there is no illness in the house, I am a germ-a-phobe!  Skip, on the other hand, only seems to be aware that he has germs when it is convenient for him to be.

"Hey, honey," I say.  "Can you get Mom's dinner started?"
"Nope.  Sorry.  Got germs.  Can't handle food."
A minute later he is pouring water for himself having handled the water pitcher, and fingered the refrigerator door.
"Hey, Honey, can you take the dog out?"
"Nope...don't want to touch the leash.  Germs."
A moment later he is petting the dog's fur.  He forgets that we ALL pet the dog.  She is carrying all of Skip's flu bugs right there on her soft fur coat.
I am the queen of Lysol.  I follow him around spraying and wiping surfaces.  Just when I think I have managed things well my mother reaches over and grabs his coffee cup thinking it is hers.
"NoooOOOOoooo!" I bellow.  I lunge for the cup and wrestle it from her fingers, then grab the wipes and scrub at her hands.

I am caregiving at its most difficult moments.  Mom doesn't understand that she cannot put anything in her mouth (especially now) unless I give it to her.
Skip doesn't understand that he must be extra careful and think about everything he touches.
Our dog Kira doesn't understand that she must not go to her Daddy to get petted and then go to Grandma for more attention.

Skip has been walking around groaning and moaning.  He has been describing each sneeze, each cough, each twinge of muscle aches.  He describes how much mucous has collected in his throat and how his head aches.  Last night he ran a fever and slept for hours and hours in response.  I looked at his listless body and worried that he might have to go to the emergency room.  Yet this morning he was nearly normal again.  It's a miracle!  I wonder if Mom and I will escape without catching his dreaded 'crud'.

Meanwhile,torn between my sick husband and my demented mother, I continue my care for Mom while seeing her gradual decline.  She is unresponsive to simple instructions.  I place a cup of hot tea on the table. I turn to butter her toast and tell her, "Mom, I am buttering your toast.  Please wait and don't drink your tea yet. It'll just be a minute."  Mom nods her head in response and then takes a big slurp of her tea.  I repeat my instruction and she says, "Oh.  Okay."  Then she takes another slurp.  She continues until it is finished at which point I hand her the toast and she asks if she can have some tea.  Why am I surprised by this?  It happens with regularity.

This past weekend we were babysitting our granddaughter and I decided to mix up a batch of modeling dough.  It is a simple form of playdough made with flour, salt and water.  Mom came to the counter thinking that it was time for lunch.  To divert her interest in food I told her what we were doing and showed her how to model a small dog or other creature out of the dough.  Giving her a lump of the 'clay' she took it and begin rubbing it on her arms.  I decided that perhaps she thought it was soap so I demonstrated how to roll it on the counter to form a ball.  I showed her how to fashion ears, nose and mouth, then turned away to help with my granddaughter's efforts.  When I turned back, Mom was eating the dough. Skip was the one who lunged across the counter acting as though she were eating poison and yelling "Spit it out!"  Unphased by his reaction she took another bite.  She seemed to resent his intervention.  Oh, but that is just the tip of the iceberg!  Mom has now entered the belligerent stage of her illness. She has become argumentative and petulant.  The other night, when Skip corrected her at the table telling her to stop slurping her stew (because she often inhales and chokes)  she very defensively told him that she wasn't slurping.  We both laughed and I told her that not only was she slurping but that it was so loud I could hear it from across the room.  She picked up her bowl of stew and yelled, "Well maybe I should just throw this at you instead of eating it!"
Wow!  What happened to my mother?  Where is the sweet woman who would never have dreamed of responding this way?  I actually struggled to keep my anger from surfacing.  I stepped back and saw the humor.  She was frustrated (as were we) and reacted as a child.  A moment later she left the table and sat down to watch TV.  I told Skip that she would return to the table as soon as she forgot  which would probably be in less than a minute.  I was right.  In fact, I asked her if she was ready to have dinner and she replied, "Oh?  Is it time for dinner?" Then she hurried to the table and sat down like she had never seen the bowl of stew before.

The incidents are plentiful. I laugh, I cry, I complain, I yell, and then I feel the compassion.  I am very, very sad.  But then, I know that these fleeting moments will pass and I cherish even the bad ones.  The memories, the good the bad the ugly are all we will have someday.  So, I keep swiping at the germs, run interference, endure her outbursts, collect the things that present a danger, taking defensive measures to keep Mom safe and healthy while her conscious world slowly disintegrates.

Thank Goodness my partner, my dear husband is feeling better and among the living today.  I can once again count on him to handle things when I am at my wit's end.  This is not easy and it is a lot more difficult when my guy has MAN flu.  It's a real thing. 

Thursday, February 22, 2018

Grooming for Grandma

It occurred to me today as I was getting ready for my mother's shower hour, (you might recall my description of the horrors of giving my mother a shower these days), that it would be really, really nice to take Mom somewhere for a lovely bath and hygienic pampering.  For me, it is a terrible process that I dread.  This is largely because it is unsafe, and I worry about Mom slipping in the shower even though I use all safety precautions.  Mom is less cooperative and also more intolerant of water temperature, the spray nozzle, and even the toweling off process.  She complains and flails about causing me undue stress as I watch her almost fall, almost hurt herself, almost slip, or upend the shower chair.  I end up sopping wet, with pulled muscles and unable to function for a couple of hours after the ordeal.  Sponge bathing doesn't seem to work that well (perhaps because I don't have a hospital bed, and/or all of the accessories to make the job easier.)

I don't even want to discuss toe-nail clipping!  I begin to shudder at the thought of it.  Some people have stronger dispositions than others.  My parents raised a wuss.  I am beside myself thinking about the grooming I must take over doing for Mom.  So that brings me to my idea.  I have decided that there should be a new business: Granny Grooming.  The name of the service could be anything from a genteel euphemism like 'Senior Spa' to 'Spray 'n Go'  for those more inclined to a more descriptive name.  Regardless of the name , a drive-up senior wash sort of like an automated car wash or a do-it-yourself dog wash that has sprayers, nozzles, super driers, and even a sweet smelling finishing spritz would be most appreciated.  I can see it now; I would drive up with Mom in the car, swipe my debit card, open the car door and deposit Mom on an automated chair that rolls through a warmed spa filled with soapy water.  Then, after an appropriate soak, a light spray, and soapy shampoo, the chair might move on to a rinse room  and then a drying room.  Finally, there could be add-ons of nail clipping, buffing, or moisturizing. 

I like it! Who's in?  Early response will insure the best locations.  Franchises still available.