Casino Royale…Pain: Pt. lll


Once inside the casino I could see that (much like my life) things hadn’t changed since the last time I’d brought Miss Cathy to gamble.

For an early afternoon on a week-day the place was kinda full; the elderly, retirees (or people who may have been unemployed for all I know, taking a risk with the last of their savings), tourists and a gaggle or two of folks my age or younger, all looking like they’re the ones that are going to ‘beat the house’ and leave with more than they came.

Still, I could smell the desperation waffling off people as I slogged through the noise and smoke (thanks to Maryland’s Gov. O’Malley for not pushing a ban on cigarettes in establishments such as this) with mom toddling along beside me, each step a declaration of war against gravity.

For Miss Cathy, walking has become a battle she looks to be losing but is denial as to how badly things are going, surrender not an option, very much like George W. Bush’s wars in Iraq and Afghanistan when he was Commander in Chief (except in mom’s case, ‘surrender’ would mean giving up her cane for a walker and not admitting that thousands died in one war that was unnecessary to protect our country and the other failing if that was indeed the mission).

The fifty-cent slot machines that she loves to play were positioned off to the left where the main thoroughfare split, near the new blackjack, craps and roulettes tables that were recently added to the casino to attract even more patrons with a dollar(s) and a dream.

The slots weren’t far from the entrance but they may as well have been the length of a football field for all the time it took us to get there.

When I first started bringing mom to the casino more than three years ago I felt like her chauffer and body guard; standing nearby (but not too close as to make whomever was sitting next her feel nervous by my presence) as she concentrated on indulging her gambling addiction. I would people watch; collect her winnings (if there were any) play games or text on my iPhone.

Over time I found that I was needed alittle more and then a lot.

It’s gotten to the point that I’m now sitting next to her; loading her club card, feeding the money into the machine and instructing her as to where the buttons or levers are and the monetary risk involved and where the various cherries and bars line up above or below the ‘winning line’ each time she plays.

She’s like “The Who’s” Tommy, who ‘sure loved to play pinball’ except Miss Cathy can hear the buzzers and bells.

Watching her as she’s playing; spellbound by the swirling colors, the lights, the Muzax playing overhead and sounds coming from the slot machine itself, she looks to be as happy and ‘herself’ as I’ve seen her since the Alzheimer’s diagnosis.

So no matter the outcome of the game she’s already won in my eyes.

Casino Royale…Pain: Pt. ll


Miss Cathy hadn’t been gambling in awhile so the other day I asked, “Do you want to go to the casino?”

To which she queried, “Do YOU want to go to the casino?”

Oh great, answering a question with a question, my favorite way to start the day.

I’d rather poke my eyes out with a dull butter knife, but, instead I replied, “No, I don’t but YOU want to go so I’m saying that I can take you if you want.”

Of course ‘she want’ so as soon as she could put her walking shoes on, get her cane, toddle out to the car and fumble with her seatbelt we were off to her version of Paradise off the Baltimore/Washington Parkway.

She lit up like a Christmas tree in the car, absolutely giddy with the prospect of ‘hitting it big”.

Unfortunately, ‘Giddy’ didn’t translate into Miss Cathy moving any ‘faster’ so she moved at the usual snails pace once we arrived even though she was actually excited to going out amongst’m.

Mom recently said that she had a ‘feeling’ she was going to win a lot of money-not unlike countless other seniors who wind up leaving much more money than that came with but I kept that factoid to myself as I steeled myself for the outing and steered us toward Live Casino.

After dropping her off at the entrance with instructions to wait while I park, we entered together, me looking as if I’d rather be anywhere than here but focused on getting her to her beloved fifty cent slot machines without a mishap and she like ticket holder to Willy
Wonka’s Chocolate Factory.

We approached the entrance, complete with a waist high glass and chrome gate with separate doors designated for coming ‘in’ and going ‘out’, manned by not one but at least three people (kind of like the casino’s version of a Wal-Mart greeter-times three).

If you’re lucky it’s ‘Hello” or “Welcome to Live Casino” but more often than not it’s a nod, grunt or ‘Wassup’ substituting for a civil salutation.

To my surprise one of the greeters looked at me and asked, “Do you want me to get you a wheelchair?”

I was touched by the offer, but declined because lets face it, walking through the casino presented Miss Cathy with the most ‘exercise’ she’s had in months.
The bewildered look in his eyes said “your life would be a lot easier if you put her in the chair”.

I thanked him again as we toddled onward, walking arm and arm slowly but surely toward the sound of “faux coins” dropping and the whirling and spinning lights announcing another big win as if to say, “Hurry, this could be you, take a seat and claim your prize!”

Casino Royale…Pain: Pt. l


Miss Cathy barely wants to go out anymore.

Not because she can’t, far from it, she’s just been isolating lately (and by ‘lately’ I mean the past couple of years).

Hey, I understand not being a social person, I’m pretty anti-social myself, preferring my solitude over the company of others usually (guess the apple falls from the tree to get away from the others) but I do make an effort at social intercourse and realize the value that being amongst my fellow man brings, physically and mentally.

But not mom, nope, she’s inside breathing the same air (did I mention she has an aversion to opening windows-“let’s the dust in”) and her only companions can be found on the television.

She cancels more hair salon appointments than she keeps (and those are only every six weeks) and she breaks promises to visit or go out with her girlfriend as a rule and not the exception.

I’ve written extensively about her refusal to go to a Senior Center, shopping, Community center, etc. so no need to bore you and infuriate myself by recounting any more of that here.

Maybe it’s a combination of illness, depression, inertia and the slowdown that affects most elders but in her case (not to generalize or speak to anyone else diagnosed with Alzheimer’s) it’s as if she’s taken the ‘living’ out of her life.

Suffice to say Miss Cathy is an island unto herself, the land mass is slowly sinking and being taken over by the seas of dementia.

And even though she doesn’t want to do much of anything related to leaving her condo the one thing she’s always ‘up’ for is a trip to the casino, specifically “Live” Casino which (conveniently) opened up a coupe years ago about twenty minutes drive down the Parkway from us.

She might (occasionally) forget to wipe herself but she never forgets that place.

Thankfully she doesn’t pester me to go play the fifty cent slots as often as she used to, like some junkie needing to score at a crack house.

So, I try help her scratch her gambling itch by ‘offering’ to take her every couple of months, a ‘reward as it were for here restraint.

And it’s an offer she’s yet to refuse.

A Caregiver’s Online Guide: TyTips Pt. lV


12) Don’t parent your parent the same way they parented you

Now that you have assumed responsible for the care and protection of your parent doesn’t mean it’s time for you to work out (or take out) any negative childhood grievances you may still harbor as to the way you were raised

“If” you feel you were mistreated in your childhood now is not the time for pay-back

Being a caregiver does not give you license to administer retribution for any transgressions that may have occurred

You have been entrusted as their caregiver-not judge/jury presiding over the past

Treat your loved one with the respect, love, consideration and care that you ‘wished’ you’d received or that you would hope to receive from YOUR loved one if/when (heaven forbid) you are stricken with the disease yourself

13) It’s not all about ‘them’, Carve out some ‘you’ time during the day

Take the focus off your loved one and putting it on yourself

We (as caregivers) have a tendency to make it all about our loved one 24/7 but it’s just as important to find time during the day to take care of yourself

Do something for yourself, even if it’s just for 1 hour a day; go to the gym, take a walk around the park or go to the mall for some retail thereapy, visit a church, temple or mosque to just sit, pray or meditate

14) Driving

As caregivers we are the people that are around our loved ones the most and we are best in a position to determine whether or not they should continue to drive

If you do not trust your judgment to be impartial (thinking you may be disloyal or fearful of your loved ones wrath), take your loved one to their geriatrician or primary care physician and let them decide if it’s still safe for your loved one to drive

Remember, if your loved one gets behind the wheel and has an accident, they could not only get lost, they could harm themselves and others as well (potentially fatally) and YOU may be legally held responsible for whatever occurs if you knowingly let your loved one drive knowing were a danger to themselves and others

15) Join a support group

Make sure that you have someone (or a group of people) that you can go to for help and support

Your loved one is not the appropriate person to turn to when you need to vent your frustrations or have a question regarding their care

Alz.org is great resource to find help wherever you live as well as community newspapers, newsletters, and blogs

To Be Continued: I welcome your comments or suggestions from your experiences

Happy Birthday?


“Happy Birthday Son!”

Miss Cathy said the words with love and affection as I walked into the living room on Saturday morning with the cup of coffee that she’d forgotten in the kitchen.

“Thank you”, I said, smiling down as I handed her the cup.

“That’s sweet of you to say except today’s not my birthday.”

“Todays the fourth isn’t it?”, she stated rather than asked, looking very self-righteous as any woman who was present at the birth would.

“Yes,” I replied, “today is the fourth.”

“And no mom”, I gently reminded her. “My birthday is on the eighth.”

“You’ll be fifty four?” she asked, alittle less sure of herself.

“Close”, I said,” fifty-five.”

We went round and round a couple times before she was convinced that I was right (which meant that she was wrong) and then there was a moment or two of silent recognition before the expression on here face seemed to say, ‘this is one more of those things that she was sure of that she’s not so sure of anymore’.

I sat next to her, not saying anything (after all, what is there to say really, in a moment like that? Personally I think it’s best just to be there but let her be).

We sat for a moment or two in silence while she’d collected herself and then she told me that she appreciated everything that I do for her (a much appreciated sentiment but an odd segue nonetheless).

She said she’d been meaning to tell me that my moving in to take care of her allows her to sleep peacefully at night in her own bed so she’s not afraid and that meant a lot.

Then she handed me a small stack of bills and said, “Here, I’ve got alittle present for you,”

The non-sequiturs just kept coming.

“Happy Birthday!” she said again.

I thanked her for the present and hugged her, not quite sure if she’d forgotten the conversation we’d just had about ‘when’ my actual day of birth was or if she was just acknowledging my birthday in general.

When your mother is convinced of the wrong date for your birth, not to be confused with being ‘wrong’ about the age of your child by a year (which is more or less understandable).

Hell, sometimes I forget how ‘old’ I am.

But, to not know with certainty something as fundamental as the day of the month to which you gave birth (to one of your two sons-it’s not like she’s Mrs. Duggar of “19 Kids & Counting fame) portends other ‘knowns’ to become ‘unknown’.

I just sat there, counting my money and smiling, thinking, there are so many things wrong with that exchange; suffice to say no more evidence should be needed as proof that Miss Cathy’s Alzheimer’s is advancing.

Prisms


As the year draws to a close it’s time to take stock and take inventory of all that’s past.

About a year and a half ago I felt as if a bomb had detonated internally that set off an explosion of emotions affecting my role as caregiver, son, friend and lover.

It was as if everywhere I looked all I could see littered before me was the damage; like shards from a broken glass, no longer able to discern if it were half empty or half full before the blast.

At the time I wondered how I would survive it all, was I strong enough? Was it my fault somehow that I’d attracted so much negative energy into my life?

And as I look back through the kaleidoscope of compartments that I’d lived my life at the time, coloring my world from light to dark there was alot of fault to go round but now I realize that dwelling on assigning blame serves no purpose.

So, as much as I twisted and turned from relationship to kinship, after l looked past the hurt (real or imagined) and disappointment (past and present) what was obscured was the love that should have colored it all.

I firmly believe “that which doesn’t kill us, serves to make us stronger” and I’m still here.

The ‘who, what and why’ of what’s happened aren’t as important as the lessons learned.

I’ve made mistakes and now I’ve made amends.

I’m reminded of the words of a kindly doctor whose books are prescriptions for how children’s (and the child in us all) should heal our lives; “No matter where you go, there you are”.

I remind myself moving forward that there will be bad days but at any moment I have the power to ‘start my day over’, to change my mindset and make my experiences work ‘for’ me and not against me.

If I can accept the negative that comes into my life then I also must embrace the positive that can be made manifest through thought and action.

What I’ve learned is to embrace the life that I have and not covet the life that I thought I’d be living. I can’t long for the fantasy of what might be because then I’d miss the reality of what’s happening in the here and now.

My time here is hardly over, if anything it’s just beginning as I enter my fourth year of caregiving.

On the eve of 2014 my life might not look like what I thought it would be but when I open my eyes each morning who I see reflected back at me through the looking glass is someone that is finally at peace with his time in this place.

#TimetoMaketheDonuts


Time to make the Donuts

My day is not unlike that of Fred, the dutiful baker who goes off to work in the pre-dawn hours to shove dough in and out of the ovens (long before most people are awake and craving their daily doze of sugary pasty) only to come home in the dark of night and do it all over again the next day, and again, and again….well, you get the picture (rather, you’ve just seen the classic television commercial thanks to youtube).

But, instead of donuts my days and nights begin and end in the darkness working for Miss Cathy.

I rise around five a.m. to start my day (for her) by turning off the alarm system located on the kitchen wall and then pulling out whatever breakfast meats or leftover’s she’s going to eat; then into the living room where I turn on the TV, open the blinds and double check that her morning meds are in their container.

This wasn’t always my routine, and Lord knows I haven’t gotten up this early since I was in high school, living at home and part of my chores was to get up (long before I needed to for school) and go out to start my mother’s car to ‘warm’ it up, turn o the heater or a/c for her drive into work….. And irony of ironies, here I am almost forty years later getting up early on mom’s behalf as well….I guess there is a sort of symmetry to that, but I digress.

I’ve learned to do this after many morning where I was startled awake (more than once) by the sound of either the alarm going off (when she’s opened the front door and forgotten the alarm was still on) or it’s the electronic ‘beep-beep’ sound her frantically pushing buttons as she tries to remember and enter the code to disable said alarm system.

Other times I’ve been rudely awakened by the harsh, static noises emanating fro the television when she hits the wrong buttons that have me up with the bakers to get things ready for whenever she starts her day.

I make sure everything is ready just in case she stirs before me, then it’s back to bed for a couple hours before I get up to start ‘my’ day around eight thirty (I have the luxury of being an artist and have spent the majority of my career working for myself so I don’t have to report to an office).

I’ve don’t mind really, it’s quiet and peaceful, much like when she takes a nap in the afternoon or goes to sleep at night.

That’s when I find I can get things done around the house like cooking, laundry, cleaning, making phone calls to set up appointments or paperwork (I call those “administrative days”) without her being underfoot, needing me to any number of little things that add to distracting me form whatever I’m trying to do for me (or for her on her behalf).

At night, after I’ve given her evening meds and a few hours later turned out her light, I cook for the next day, straighten up the living room, clean the kitchen and then I get to have ‘my’ evening; to go for a swim lesson, read, write, watch TV or a film and occasionally to go out for a bit to remember what it feels like to have a life independent of being a caregiver.

Then, all too suddenly it’s time to turn on the alarm and it’s light out for me around midnight or so and before you know it, it’s time to get up to ‘make the donuts’.

A Caregiver’s Online Guide: TyTips Pt. lll


8) Never lose your temper:

Find a response other than anger if/when your loved one does something that makes you angry

I know, “easier said than done” but practice makes perfect so ‘practice’:
a) Deep breathing
b) Counting to ten (or one hundred)
c) Walking out of the room
d) Telling yourself over and over that its ‘The Alz’ and not your loved one making them act the way they are (which in turn is making you mad)

…Doing whatever you need to do to squash your anger is as individual for the caregiver as the progression of the disease is for your loved one

Remember, anger only begets anger so nothing positive will result from indulging this negative emotion. Besides, your loved one will probably respond in kind or become confused or hurt, none of which should ever be our ‘intention’

9) Not everything your loved one does ‘wrong’ is an opportunity for you to show them how to do it ‘right’:

If your loved one is repeatedly engaging in the wrong behavior then they are probably past ‘teaching’ for the most part (sometimes this change in behavior can be an indication that the disease is progressing and/or other neurological changes are at play.

If you notice that they are starting to get more things ‘wrong’ or different activities/behaviors are becoming a challenge it may be time to take them to see their neurologist for a check-up)

Some behaviors can be modified or re-taught but people diagnosed with dementia have short term memory issues, impaired cognitive skills and decreased problem solving abilities so depending on what stage of the disease they are and their individual manifestations of the disease you (as their caregiver) should adjust your expectations accordingly regarding what they are capable of doing and learning

10) Never scold or chastise your loved one:

Every time something happens that is aggravating, annoying, surprising or disruptive does not necessarily give you license to ‘dress down’ your loved one using harsh words

After you have calmed down, take the time to either explain why their behavior was inappropriate, wrong or upsetting (knowing that they may or may not understand or retain what you have just said and repeat whatever has just happened)

11) Your safety comes first (yes, even above your loved ones):

Do not underestimate the power of the disease by thinking your loved one would never harm you. Do not think that your experience with their ‘non violent’ past persona has anything to do with what they are capable of in the present

If/when (heaven forbid) they become violent, it’s not the time to discuss, negotiate or make the mistake of passively thinking, “They would never hurt me” and not take steps to insure your own safety

Never hesitate to leave the room and lock the door behind you if you feel physically threatened in any way

Remember, even the airlines suggest that you ‘put the breathing device on yourself first, then on your little (loved) one’…translation, if you don’t put your safety first-then how are you going to be able to help some one else

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience

A Caregiver’s Online Guide: TyTips on how to care for your loved one: Pt. ll


4) Don’t ask your loved one to do something that you know they cannot do:

Sometimes we think that a loved one is being ‘lazy’ or not living up to their potential but the reality is that when you see that they are struggling to perform a task (that was previously not a challenge to them) it may be a sign that their disease is progressing, instead of insisting that they ‘can’ do whatever it is that they cannot, accept this as fact and move on

Do not berate them or think that you can turn this into a ‘teaching moment’, in most cases this exercise will only end in their frustration and your anger and disappointment

5) Find a space that is yours:

It’s important to have a room or place where you can go to relax, unwind or decompress from the stress of caring for a loved one

It’s important to create a space that is yours alone to retreat to is yours alone

6) Say good-bye to ‘who’ they used to be and hello to the person they are now:

Trying to get your loved one to ‘act’ or ‘react’ the why they did before they started on the spiral down into dementia is futile

Make peace with the person they are ‘now’ and adjust your expectations and requirements accordingly

Best to mourn the loss of who they used to be and be grateful for the moments when there is a flicker of their former selves

7) Keep to your schedule:

Loved ones with dementia respond well to structure and routine

Do your best to be consistent in your actions and deeds

(For example:

If you say you will take them somewhere at a specific time-do not be late!

If they are used to bath time being at 7 pm-don’t start turn on the shower at 7:30pm!

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience

Hair today (not) washed tomorrow: Pt. lll


Arguing with Miss Cathy about washing her hair was about as useful as ‘tits on a bull’.

After weeks and days, and years and months of trying to convince her to do something different about caring for her ‘do’ I’d exhausted all reason and patience; if I weren’t already bald I’d have pulled my hair out.

My frustration was only topped by my disappointment in myself for arguing with her about the subject in the first place.

I (thought) I’d learned from my caregivers support group that you should never argue with someone with dementia, you’d never win so what’s the point.

Oh well, those fights are all ‘hair down the drain’ so there’s no sense dwelling on the past.

I realized that what I needed to do was ‘something different’.

After all, Einstein said, “the definition of insanity is doing the same thing over and over and expecting a different result” and all my haranguing Miss Cathy about washing her hair definitely qualified as ‘insane’…100% justified, but still….

I knew I had to try a different tack and it came to me when I realized that she hadn’t been to the hair salon in quite some time.

In the past I let her make all the arrangements to ‘get her do did’ but we see how well that’s not working so it was time for me to add ‘grooming secretary’ to the ever-expanding list of things I do for her because she can no longer do for herself.

I called the salon to make an appointment and it was then that I realized the solution to my problem.

When the appointed day arrived I drove Miss Cathy (as usual) but instead of just opening the car door and leaving her to her own devises I went inside with her; 1) to handle the business transaction because she’s now at a point where money confuses her so I don’t want her to be taken advantage of and b) to speak with her stylist for a moment.

When the hairdresser came to the reception stand I introduced myself and before handing off Miss Cathy to her care I asked how often ‘one’ should wash their hair after having a chemical curl?

Her reply was “whenever you want but at least every two weeks” (which surprised me that one could go that long without shampooing but that’s besides the point).

The point was that I knew Miss Cathy has great respect for ‘professionals’ and now she’s heard from a hair-care professional about what was acceptable hair care (and not from me-her son, a ‘lay-person’).

And the stylist just so happened to be African-American (so mom can keep the race card in her deck and save it for some other argument).

I thanked the hairdresser for the information, and didn’t say a word to Miss Cathy except to tell her what time I’d be back to pick her up.

Two weeks to the morning after she’d been to the salon I announced that it was ‘wash day’, she acknowledged that she heard me but with about as much enthusiasm as if I’d said it was ‘enema day’.

When it got to be afternoon and time was fast approaching for her to beach herself in bed I had a ‘light bulb’ moment and instead of reminding her of what she ‘didn’t want to do’ I offered to wash her hair for her…and she accepted!

So, now I have shampoo days on the calendar along with all her other appointments and reminders.

Now, if I could only get the rest of her body immersed in water more often than her hair…oh well, there in lies the rub, “a dub-dub”.