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.

Sunday, February 18, 2018

Jury Duty or Jail?

You know how you get things in the mail that require your attention but you just don't have the time to deal with it at that moment; so you stack it on the desk to attend to later?  Well, for me, pretty soon (and much to my dismay) those bits of mail build up to a large stack and I begin to feel overwhelmed.  Yesterday I began to wade through the most pressing of these 'to do's' and whittled down the pile.  I registered for classes, RSVP'd to events, and sent payments that were needed on bills that were almost due.  At the bottom of the pile, I found the piece of mail that came last week.  At the time I remember shaking my head, laughing, and saying to myself, "I have got to write a full explanation on this form; but I don't have time right now."  Today, I finally got around to writing it.  I'd like to add that I have been accused of being irreverent and sarcastic in my writing.  Sarcasm is my form of humor and I don't want the reader to think that I am actually serious...okay?  With that disclaimer, I hope you will enjoy the letter I sent to the Clerk of the Superior Court:

To Clerk of Superior Court:

We received the Jury Summons for my mother last week and my first reaction was laughter.  I had to share this with you since clearly, she will be excused from jury duty; but I felt a NEED to explain further.  Whoever reads this, I hope that you laugh along with me.

My mother is 98 1/2 years old.  I would have to say first and foremost, at that age one would hope that she is not driving!  That alone is enough of a reason not to report for jury duty unless of course there were some sort of transportation that would take her to and from the courthouse.  The fact that there was (in bold numbers) a note of her date of birth on the upper right hand corner of the summons gave me a moment's pause, since there are probably other potential jurors of a certain advanced age being summoned to serve who may not be of sound mind.  Why oh why would these elderly folks be summoned to serve as jurors?

That brings me to my second point: statistics show that approximately one out of every two people in America today who are over the age of 85 years old have Alzheimer's or some other form of dementia.  So I can safely assume that when a summons goes out to an individual over 85, the person is most likely not capable of serving on a jury, nor would we want them to!  My mother is no exception.  She has advanced Alzheimer's. I am caring for her full time; and that brings me to my third point: the stress and frustration, the exhaustion and the mixed emotions of a caregiver providing care for someone with cognitive dysfunction is extremely high.  There are days when I dream of respite...somewhere I could send my mother to give me a break.  Unfortunately, most respite care is not affordable for us right now and so day after day, I must maintain a cheerful disposition in spite of the overwhelmingly sad situation.   

At the risk of sounding a bit irreverent, I began to muse humorously and with an ample amount of sarcasm.  (I have found that humor is a great coping mechanism.)  How tempting it was when I saw this summons to say to myself with a wry smile, "Hmmm...maybe I will drive Mom to jury duty every day and let them babysit her for a week or two. "  Then I had another darkly comical thought.  "If I don't reply on Mom's behalf, I wonder what would happen?  Perhaps they would send someone for her.  Maybe they would cart her off to jail for ignoring her civic duty. "  I could see myself waiving good-bye calling to the Sheriff  "My mother goes to bed at 8 PM.  Oh, and don't forget, she takes her tea with sweetener and a cookie at 3:00!"  That made me laugh out loud and so I want to thank you for indirectly providing a little levity in my otherwise difficult day.  I truly wish I could share this summons with my mother who would have also had a good laugh over the situation if she still had a healthy mind.  (She always found humor in irony.) 

Wednesday, January 10, 2018

A Bitter Pill to Swallow

I have not been talking about it...I prefer not to think about it. My mother's condition has been steadily deteriorating and while I have written about the myriad incidents that send me into a tailspin, I have spared the reader the ugly details.  There are things about which one does not (politely) write or discuss.  I edit my writing and my conversation.  I even try to edit my memories.  I search for the humor and when it doesn't present itself I try to erase the memory.  It is too ugly, too difficult.  It is the most bitter  pill to swallow.  Memory loss and lack of cognitive ability, lack of recognition, lack of understanding is all part of the process -- the brain-killing disease that has stolen my mother from me.  I have accepted this as our fate.  I have strengthened myself and grown as a result.  I have done things I never thought I could do. I have dealt with certain tasks in order to spare others as well as to protect my mother's last shred of modesty.  I would like to think that part of her, deep down in her being, in her soul, knows that I am doing this for the woman she used to be.  I still respect that person who had dignity, who had manners, standards and decorum,  modesty, cared for her appearance and never ever left the house without lipstick on and every hair in place.  She was the mother who wanted to raise her daughter to do the same and so she scraped together enough money to send me to finishing school to learn etiquette, comportment, elocution,  and any number of other skills long since forgotten.  For my mother, it was important. So, how can I abandon her now as she has forgotten these practices herself?  

Within the past several months many of my friends have lost loved ones.  It is always difficult news, but particularly right now as I prepare for my own mother's inevitable demise. I think that it is not too long from now.  A dear friend whose mother had dementia and was closely  following the process in my mother told me that since her mother was about three years behind my mother she would learn from me.  We talked often and shared stories.  This past week her mother passed away and when I spoke with my friend offering comforting words, she told me that she had thought that she would be the one (first) to be offering comforting words to me.  How could this be?  How is it that my mother is still hanging on?, I am not wishing her gone!  I am not complaining; not really.  Except...well, I wonder about the quality of life, the degradation, the humiliation of the body giving out, losing control, no longer a useful vessel but a trap -- imprisoning the eternal soul.  I want to protect that beautiful and loving part of her -- that part that saw a need to send me to finishing school.  Instead I am dealing with reality, with the ugliness that dementia creates.  In an infant, these things are not considered ugly but in an adult it is so different.  When an infant spits up we tsk, tsk and swipe at the mouth casually.  In an adult we are repulsed, avert our eyes and pray that someone else will clean up the mess. Human excrement is a necessary mess to clean in a baby but disgusting in the elderly. Bathing a little one is a joy but a detestable job with an old person.  Why?  Why are our standards so different?  I grapple with this knowing that logic dictates that there should be no difference but finding that my emotions disagree.  The things I must do, I do; but, yes,  it is indeed a bitter pill to swallow.