Can You Come Here For A Minute?

Casino Royale…Pain: Pt. lll

noreply@blogger.com (Unknown) — Wed, 05 Feb 2014 17:17:00 +0000

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

noreply@blogger.com (Unknown) — Tue, 28 Jan 2014 17:14:00 +0000

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

noreply@blogger.com (Unknown) — Mon, 20 Jan 2014 15:15:00 +0000

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, conscious of her restraint I try help her scratch her gambling itch by ‘offering’ to take her every couple of months, an offer she’s yet to refuse.

Nothing lasts Forever

noreply@blogger.com (Unknown) — Thu, 16 Jan 2014 03:42:00 +0000

Not their denial

Not their forgetfulness

Not their anger, nor your frustration

Not their confusion

Not their willful obstinacy

Not their incontinence

Not their inconsistency

Not their inability to recognize you

Not their malaise

Not their depression

So, remember this as you care for your loved one

Nothing lasts forever,

Not their smile

Not their laughter

Not their wisdom

Not their courage

Not your connection

Cherish the good,

Forgive the bad

What will last is the love

And that will live on…forever

A Caregiver’s Online Guide: TyTips Pt. lV

noreply@blogger.com (Unknown) — Sat, 11 Jan 2014 16:47:00 +0000

1) 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

2) 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

3) 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

4) 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: In the interim, I welcome your comments or suggestions from your own experience

Happy Birthday?

noreply@blogger.com (Unknown) — Mon, 06 Jan 2014 00:35:00 +0000

“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

noreply@blogger.com (Unknown) — Sat, 28 Dec 2013 19:03:00 +0000

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.

Time to make the Donuts

noreply@blogger.com (Unknown) — Sat, 21 Dec 2013 20:26:00 +0000

https://www.youtube.com/watch?v=petqFm94osQ

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’.

Valley of the Dolls: Pt. l

noreply@blogger.com (Unknown) — Mon, 16 Dec 2013 22:15:00 +0000

Some days it seems my whole life is pills, pills, pills…or “dolls” as Neely refers to them in the film< “Valley of the Dolls” http://www.youtube.com/watch?v=u-TXJMKVa_g

Miss Neely O’Hara is played by a woefully miscast but brilliantly over the top Patty Duke, trying to earn some adult film role cred after years of playing a dual role as teenaged (get this) “twin” cousins on the popular “Patty Duke” television show http://www.youtube.com/watch?v=XXhiKZz0wEo

“Gimme my dolls!” she screams at one point to obliterate her pain (or the pain of screaming lines like those).

But, I digress; the pills that rule my life are not ones that I’m screaming for (although Neely may have been onto something).

No, the colorful little pellets I refer to are the prescription medications for Miss Cathy’s daily consumption.

In the mornings she takes:

1) Vitamin D3 1000iu (1 per day) For Bone Health

2) Vitamin B-12 (1 per day) Keep the body's nerve and

blood cells healthy

3) Losartan Potassium 25mg (1 per day) For High Blood Pressure

4) Folic Acid 1mg (1 per day) For Memory

5) Amlodipine Besylate 10mg (1 per day) For High Blood Pressure

6) Metformin 500 mg (2 per day) For Type 2 Diabetes

7) Escitaopram 5 mg (1 per day) For Anxiety

In the evening she takes:

1) Aspirin 81mg (1 per at nite) Prevention of Blood Clots

2) Donepezil 5mg (1 per at nite) For Alzheimer’s

3) Namenda XR 28mg (1 per at nite) For Alzheimer’s

4) Metformin 500 mg (1 per at nite) For Type 2 Diabetes

As you can see, it’s quite the list and now her neurologists want to add to it!

Time to step back and see if Miss Cathy can fit another ‘doll’ on her shelve.

Before I present the best possible options to mom for her consideration, I (along with her doctor(s) need to access the benefits, effectiveness, side effects, costs and toll of all these medications on her system.

A Caregiver's Online Guide: TyTips Pt. lll

noreply@blogger.com (Unknown) — Thu, 12 Dec 2013 16:30:00 +0000

1) 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’

2) 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

3) 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)

4) 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

noreply@blogger.com (Unknown) — Thu, 05 Dec 2013 16:41:00 +0000

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

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

noreply@blogger.com (Unknown) — Mon, 02 Dec 2013 21:21:00 +0000

The following are a few simple TyTips (suggestions for you to ponder or practice) that might help when it seems like the only light at the end of the tunnel is complete darkness:

1) Start thinking of the things that you do for your loved one as ‘work’ and act accordingly:

Let’s face it, we all have different standards (usually higher) at work than at home so why not use that to your advantage

By utilizing the discipline, skills and organization at home that you would employ at work, your days will be more productive (the things that you do will be less of a ‘chore’ and more of a ‘task’)

2) Detach:

Detachment can become your best defense against personal attacks

Separating your emotions from the task at hand when you are caring for a loved one can sometimes save you from getting hurt or feeling resentful

If you can separate your feelings from the person you’re caring for (spouse, parent, sibling or friend) then you might be better able to focus on the task at hand when they become verbally abusive or belligerent

3) Stop arguing:

Engaging in an argument with a person with dementia is about as productive as trying to milk a bull

If your loved one becomes argumentative you can listen to what they have to say without responding (sometimes they just want to be heard)

Change the subject (by not directly responding to what they are emotionally upset about you might be able to ‘shake’ them out of their agitated state ad back to rational conversation)

Walk out of the room (sometimes leaving the room and coming back gives your loved one time to calm down, and the simple fact of walking in/out of the room instantly changes the dynamic that existed between the two of you…and (better yet) sometimes gives your loved one time to ‘forget’ what they were being argumentative about)

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

A Caregiver’s Online Guide: Learning to love your loved one (even during those times when you don’t like them very much)

noreply@blogger.com (Unknown) — Thu, 28 Nov 2013 18:33:00 +0000

It’s not one long love-fest when you’re a caregiver. You can’t expect that you will be showered with thanks and praise on a daily basis.

Let’s face it, it’s hard to hold onto that warm, fuzzy feeling of knowing that you’re doing the right thing when it seems (sometimes) as if your loved one is doing everything wrong (and sometimes you get the suspicion they’re doing it on purpose).

We, as caregivers have committed ourselves to the selfless act of caring for a loved one who may or may not even know who we are sometimes or have the ability to know that they should be grateful for all that we do.

And at the same time we have to acknowledge that we are still fully formed, feeling people who (like it or not) have a response to the “who, what, when and why” of our daily lives and that emotional response can be at odds with what we’re trying to do for our loved one.

Most days you’ll be taken for granted and some will be filled with confrontation, frustration and anger.

While other times your loved one will be constantly underfoot and smother you with so much love that you think you’ll suffocate from all the attention and wish there was a place to hide.

And inevitably there will come a time when, as a caregiver, you have to ask; what do I do if I don’t like the loved one I’m caring for?

Speaking for myself, I will admit there are days when Miss Cathy drives me absolutely crazy and others still when I simply don’t like her.

That’s not to say I don’t love her, I do, but we all know we can feel more than one thing at a time for a loved one.

Remember, ‘feelings aren’t facts’ so there’s no need to beat yourselves up over any negative emotions you may feel at any given time or place during your tenure as a caregiver.

Since we’ve all been charged (by choice or circumstance) with our loved ones care we can’t just walk away when we’re angry or frustrated so we need tools to help in those moments when we’re at our wits end.

I’ve complied a list of ‘dos’ and ‘don’ts’ that I will post and that I’ve found to be very helpful when “like” seems to be the hardest word to paraphrase an Elton John lyric.

I hope that you like them and they can help you to ‘like’ your loved one.

Hair today (not) washed tomorrow: Pt. lll

noreply@blogger.com (Unknown) — Sun, 24 Nov 2013 18:01:00 +0000

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”.

Hair today, (not) washed tomorrow: Pt. ll

noreply@blogger.com (Unknown) — Tue, 19 Nov 2013 17:25:00 +0000

I find no pleasure in harassing Miss Cathy about her hair.

I know it’s embarrassing, and I know it’s a hard thing to hear, what parent wants their child telling them ‘they need to wash their hair’…never mind that the ‘child’ in question is fifty-four years old.

Mom’s issues around taking a shower (more specifically refusing to wash her hair on a regular basis) are bordering on the pathological.

She insists that “I don’t know what l’m talking about” when it comes to her hair care.

Her ‘go to’ defense is that I don’t understand because ‘I’m a man’ (as if the addition of a Y chromosome has anything to do with the maintenance of the follicles on top of one’s head, which are identical regardless of sex, but facts and science don’t seem to dissuade her from her argument-much like the Republicans members of the Tea Party).

Her other line of reasoning (if you can call it that) is that I don’t understand because ‘she has a ‘chemical curl’.

For those readers that are not African-American, think the opposite of the "perm" you went to the Salon to get back in the 70’s to make your straight hair curly, blacks go to their hairstylist to straighten their natural curl so, somehow (in her mind) the fact that her hair’s been treated exempts her from the routines of regular shampooing.

I find both lines of defense equally irrelevant because a) hair is hair-no matter on whose head it lies and 2) in my youth I’d been to more salons and had my hair “fried, dyed and laid to the side” more times than I care admit or that she’s ever likely to subject her hair to and c) who gives a sh*t if your hair is chemically treated or natural!

Hair is hair and non-washed hair is still unclean hair, no matter what a person’s done to it.

The last time we argued she told me that I don’t understand because, “black hair is different” at which point I looked at her as if she’d completely lost her mind and said,

“Just who do you think you’re talking to? What do you think I am?”

“Are you kidding me?!”

I’ve always found the ‘it’s a black thang’ a lazy (and obvious) argument between the races so imagine my disappointment (and surprise) that she was trying to play the ‘race’ card-and against her own race (not to mention her own flesh and blood…unless she forget to tell me that I’m some immaculately conceived progeny that’s been checking the wrong ethnic box on the census all these years).

Anyway, there’s Alzheimer’s and there’s just plain old “whatchu talkin’ about Miss Cathy?”

Hair today, (not) washed tomorrow: Pt. l

noreply@blogger.com (Unknown) — Thu, 14 Nov 2013 18:01:00 +0000

I’ve found that some of the most combustible exchanges with the loved one in my charge revolve around hygiene.

You'd expect this to be true if it were a child in my care but I’m referring to the seventy-five (going on five) year old Miss Cathy.

Since becoming my mother’s caregiver 3+ years ago we’ve clashed over many things; cooking (she shouldn’t) exercise (she should) and various and sundry other issues but none seem to bubble over the side of the tub of reason and burst into an argument the way the topic of bathing and washing her hair do (does).

I’m not sure if it’s the reversal of roles, the child now parenting the parent or embarrassment; although after wiping your parents’ rear after helping them in the bathroom you’d think that ship had long since sailed.

Believe me, it’s not that I want to be the “bath bully” anymore than I want to be on “poo patrol” but Alzheimer’s isn’t just about reminding your loved one where they put their favorite blouse.

It can start off that way, all clean and innocent; a misplaced book here, a forgotten appointment there, and if that's where you are in the disease with your loved one…enjoy!

In time you will look back on all the frustration and change you faced during the first stage of the diagnosis and realize that those were the “Halcyon days”.

As for my current dilemma I am at a quandary as to what I should do; ‘rinse’ (leave her alone) or ‘repeat’ (continue to motivate her to be better).

Sure, it would be ‘easy’ to let Miss Cathy have her way and just open a window while she sat around in her own funk, and look away as she scratched at Lord knows what could be marinating in her unwashed coif but who said any of this was going to be easy? And if they did-nobody said it to me.

Besides, what kind of caregiver would I be, let alone son to a mother he purports to care about if I didn’t do those things that were uncomfortable (for me) and maddening (for her) but ultimately in the best interest of my loved one.

So, I refuse to let her standards of hygiene slip (ones she instilled in me, by the way) even if she’s forgotten them.

If I can’t get her to “wash yo ass” as she so often (and not so delicately) barked at my brother and me to do when we were growing up then at least I could try to get her to wash her hair more often (‘often’ being a relative term and our current bone of contention).

Hair today-the rest of the body tomorrow……

"Sometimes you can't see the forest for the fire"

noreply@blogger.com (Unknown) — Tue, 12 Nov 2013 00:51:00 +0000

We’ve arrived at the place where simple things are becoming difficult. We no longer live on easy street where weeks go by without a visit from signs of dementia.

Where it was once a ‘some-time’ thing, now Alzheimer’s has come to take up part-time residence.

Who’s to say how many years Miss Cathy has before she lives in a permanent state of confusion.

Three years ago, long before mom’s recent decline but sometime soon after she was first diagnosed I advised her to prepare for this day (or something much like it).

I suggested that she write down lists of contacts; names and addresses of all the people (friends and family) that she talked to on a regular basis as well as her favorite TV shows; the times and channels so that she would have them for easy reference later on when her memory failed and she’d forgotten all things familiar.

I also suggested (while she was still ‘sharp’ and more or less ‘herself’) that she make a point of flexing her mind ‘muscle’ and practice crosswords or put a jigsaw puzzle together, anything that would help her mind stay active instead of just sitting in front of the television hour upon hour, day in and day out then laying in bed for the rest of the evening, letting her intellect go soft.

She had other ideas of course, as is the case with most people who are in denial and not ready to accept what lies ahead, she let my ‘suggestions’ go in one ear and out the other.

My fear was that Miss Cathy’s mind was getting soft but her head was hard and she did what she’d always done, which was exactly what she wanted, regardless of anything I or her doctors’ advised.

So, she did very little to prepare for today and today (as has been true every other day for the last several months) she cannot read a page on a book, dial a number on the telephone (usually connecting with the wrong person at the wrong number) and gets confused by the everyday routines and objects that should be as familiar to her as the nose on her face.

Today she retains less and less new information and the old knowledge she once possessed is harder to grasp.

And since she never bothered to write down the things I asked for I’ve had to become somewhat of a Sherlock Holmes to decipher “who” she intends to call, “what” she’s searching for and “where” her favorite programs are on TV.

(I’ve since started compiling some lists of my own (of Miss Cathy’s social life) to go along with my medical notes).

When these new challenges first presented themselves I tried to get her to use sense memory instead of sight or other ‘tricks’ to help her navigate through her day or operate familiar things but she was quick to anger.

“I done told you I can’t see, I don’t know when you people are going to understand that I can’t see anything!”

“You people?”

So now I’m part of the preverbal you people and she can’t see that I’m the one person by side supporting her on a daily basis.

No matter, she can’t see the irony that her protests are just validating what I was trying to get her to ‘see’ but I can.

Oh well, like Miss Cathy is want to say, “Sometimes you can’t see the forest for the fire.”

Requiem for a small kitchen appliance

noreply@blogger.com (Unknown) — Wed, 30 Oct 2013 17:58:00 +0000

Recently, I was in my room trying to write, waiting for the muse to move me when I was shaken out of my musings by a racket coming from the direction of the kitchen so I went to investigate.

It sounded like a car stuck in second gear as it ran back and forth over a body.

I walked in to see (and hear) Miss Cathy murdering (yet) another electric can opener.

I don’t know how she does it (actually I do; she presses down too hard on the handle, either in frustration or impatience, forcing the mechanism to grind to a halt) that is/was the fifth car opener to fail in three years.

Unplugging the machine; finally silencing the grinding and groaning, releasing the can of Bushes’ Baked Beans, hanging limp from the magnetic holder.

Freed from its gallows I could see that the top had been wrung a few times but never rotated enough so that the blade could do it’s job.

It was a sad sight, matched only by my mother’s perplexed face as she tried to comprehend ‘how’ it could possibly be her fault and not the machines when I told her she’d broken another can opener.

I wasn’t mad at her (for a change) so much as I was disappointed in myself because I broke my vow and hadn’t bought a second hand can opener online or one from a second hand shop as I’d done before (after wasting money on new ones the times before).

No, I was mad because I’d gone out and bought a brand new, top of the line stainless steel can opener from Macy’s at the unheard of price of $95.00 (I think it was on sale for $69.99 but, still).

The last used can opener broke after Miss Cathy manhandled it (and before you ‘ask’….it was perfectly fine and ‘gently-used’ when I’d bought it so “not” being new wasn’t the reason it broke).

Miss Cathy promised she wouldn’t use the new Cuisinart and she’d ask for my help whenever she needed a can opened and (putz that I am) I believed her.

So, I was mad at myself for:

1) Believing her and thinking she could change her behavior

b) For wasting my time (and money)

The reality is that she’s not doing anything wrong. If anything her behavior; forgetting (or breaking) her promises, mood swings and impulsiveness (to name a few) are pretty damn consistent with her diagnosis.

I realized all this as I was opening the can the old-fashioned way with a ‘hand’ opener; luckily I’d kept one ‘on hand’ for occasions such as this.

I told Miss Cathy that after five, count’m… five broken can openers in three years that at some point she has to take some personal responsibility in the matter-they can’t have all been ‘faulty’ can openers.

As I unplugged the Cuisinart I tried not to scold her or make her feel worse than she already did but I wasn’t going to molly-coddle her or let her get away with blaming the (victim) ‘appliance’ either.

The murdered appliance deserved better than that, so, farewell small kitchen appliance, thanks for trying to be of service as go off to some landfill, rest in peace can opener as you as you lie in a heap.

Je Ne Regrette Rien (I Regret Nothing)

noreply@blogger.com (Unknown) — Mon, 28 Oct 2013 18:55:00 +0000

My purpose in these posts is not to kvetch about being a caregiver.

Telling my story (by writing it down as best I can) is my way of remembering before I forget the beginning, middle and in-between of Alzheimer's and it's affects on one family.

Sure, I complain, I’m the first admit that.

I rail against the day in/day out difficulties and vent my frustrations but that doesn’t mean I ‘want out’ or that I’m not committed to caring for my loved one, Miss Cathy, the best way I know how.

And let’s face it, I’ve fumbled a few times but I’ve never dropped the ball (which in this case would be my mother when I had to carry her once) so I admit I’m a work in progress.

But, like Maya Angleou says, “When you know better, you do better.”

I might learn to do better, but I doubt I’ll stop bitching along the way.

I remember the day years ago soon after my mother was diagnosed and I decided (without being asked) to become her caregiver (something I hadn’t done since the early days of the AIDS epidemic when it ravaged my gay community and I found myself caring for someone I loved for the first (but not the last) time).

So I knew the commitment I was taking on (even though it was a different disease, a different relationship and a different time) but nonetheless my decision was as easy to make then as it was before.

We all know how easy it is to say that we love, and it’s not often in life that we are given the opportunity to show how we love and show up for a loved one, and in those moments we get to see ourselves for who we really are.

Love means being there for someone else when they need you, not when you want to be there for them or when it’s convenient for you or your life.

Love, to me, between a person and their parent, spouse, sibling or friend is defined by the depth of their willingness to give, to receive and sometimes (maybe, more importantly) their capacity to forgive.

So, if I’ve sounded as if I'm complaining (and lets face it, sometimes I am, actually) that's okay as long as I show up each day for the commitment that I’ve made (not to Miss Cathy or anyone else so much as) to myself.

I'm just letting off steam, being vulnerable, and posting questions as I stumble through what is one of the hardest things l have ever done or will possibly ever do, finding answers and support from (sometimes) the unlikeliest of people and places.

When I made my decision to leave my life to join Miss Cathy's it was so that she could live out as much of her life in the home that she loves before the disease progressed to the point where there was no more there, there.

It’s been three years and three months since I moved in with her and so far, so there.

I’m happy to report that she’s not there yet so life goes on for now, just me and Miss Cathy.

To me it’s very simple, “when you care-you come”, the rest is just words.

So, when it comes to love and my loved ones, in the words sung by the late, great “Little Sparrow” Edith Piaf http://www.biography.com/people/edith-piaf-9439893, “I regret nothing”.

http://muzikum.eu/en/127-4873-86576/edith-piaf/non,-je-ne-regrette-rien-english-translation.html

I'm late (we're late) for a very important date: Pt. ll

noreply@blogger.com (Unknown) — Tue, 22 Oct 2013 15:38:00 +0000

After checking Miss Cathy’s progress (she was so engrossed in her closet you’d think she was looking for a hat to meet the Queen of Hearts but all she usually wears is army fatigues and an oversized tee under a poly blend jacket topped with a red ball cap no matter where she’s going or who she’s to meet) I decided to “warm up the car” as we used to say in the old days when cars required such attention but nowadays it’s my euphemism for needing to get out of the house.

When it got to be ten minutes before we needed to be someplace that was less than five minutes away (but would require at least that much time for mom to get into and out of the car) I knew it was time to call the doctor’s office to let them know that we’d be late.

After an interminable period of “press one for this and nine for that” the receptionist finally came on the line and after pleasantries and me explaining the reason for the call she told me we’d have to reschedule because “the doctor is ‘on call’ today and would have to leave” if we weren’t there on time.

I told the young woman on the other end of the line (Why are receptionist usually young women? And why didn’t young men ever apply for these jobs? Is it suddenly the Madmen 60’s where clerical office work in doctor’s offices was concerned?)

Anyway, my reassurances that we’d only be ten minutes or less ‘late’ did nothing to assuage her position. She was a ‘verbal gatekeeper’ and I was being denied access, I would have liked to throw her down a rabbit hole.

“Well”, I said, “I’m calling as a courtesy really, which is more than I can say for the hour we had to wait the last time we were in to see the doctor and no one ever came out to tell us how long he’d be or apologize for his tardiness.”

“One, two, three…” I breathed, calculating how I could turn this conversation around, trying not to sound ‘too’ annoyed, lest I give away my fantasy of someone I’d never met free-falling down into endless darkness before hitting an unknown bottom which is where I felt this conversation was heading.

“Can I speak to the doctor?”

“The doctor is in with a patient now, can I take a message for him and he’ll get back to you later this afternoon?” she said. (Oh no she did-int’!)

How could he be both with a patient and getting ready to leave because we’re not there-at the same time?

I was used to putting up with Miss Cathy’s inconsistencies but I had no need to indulge this girl’s word play.

Rather than question the receptionist who was (after all) just doing her job (and apparently not being paid enough to keep track of her own contradictions).

I simply said, “Well then, be that as it may, we’re in the car and will be there in two minutes…see you soon” and hung up smiling a broad Cheshire cat grin, not having to worry about the power to disappear because unlike the cat and Alice (because of the power of technology and not magic) she could hear but could she see me.

I'm late, (we're late) for a very important date: Pt. l

noreply@blogger.com (Unknown) — Sun, 20 Oct 2013 00:39:00 +0000

I can’t believe we were late for our first doctor’s appointment in over a month.

When we finally arrived at the Medical Center I looked at my watch to see that we were 20 minutes late for Miss Cathy’s appointment with Dr K, her (new) neurologist.

It’s not like we were rushing from another appointment because of some ‘full calendar’ of places to go and people to see, we only had the one place and he was the only ‘people’ she (we) had to see in an otherwise day free of obligations.

So, there really was no excuse for our tardiness and all the drama it caused (to me, anyway).

We were going to see him to discuss the addition of Namenda XR to her drug cocktail, up till this point she’d only been prescribed Aricept for her Alzheimer’s.

I first told mom about her three month neurological ‘check-up’ the night before so she’d have (some) time to get used to the idea but not so much that she’d obsess or drive me crazy asking, “When do I see the doctor?” over and over.

The next day I reminded her again about the appointment while she was eating her breakfast in front of the television in the living room then went about my morning.

I didn’t come back out to check on her till 12:30pm (the appointment was scheduled for 1:00pm) and there she was, sitting in the living room watching TV, still in her nightgown.

“My bad”, I thought to myself, “ no reason to be mad at her for something that was totally my fault.” As her caregiver I should have checked on her earlier to make sure she was dressed and ready so we’d be on time.

Luckily her condo is only about a five-minute drive to the doctor’s office but with less than a half hour for her to dress and get out the door (and in the car, out of the car, in an elevator and walk the short distance to the doctor’s door…all of which take more time than you can imagine) I knew there was a better chance of John Boehner controlling his Republican caucus than us being on time.

Frustrated (but, I had to admit that I was more angry at myself than her) I ‘suggested’ she go and get ready so we could leave as soon as possible. I’m usually more on top of things, time management wise, but, what can I say, sometimes I think that she’s having a good day and monitor her less or (heaven forbid) get absorbed in something I’m doing for myself.

You might be asking yourself “Why didn’t he just help her get ready?”….Well, I’ll tell you.

The answer is that I’m (still) making a conscious decision to let her be as independent as possible and not step in and take over (until it’s absolutely necessary) where matters of her autonomy are concerned.

Part of what I struggle with as her caregiver (in addition to time management obviously) is the knowledge that if/when I start to do more for her (even if it’s under the guise of ‘helping’) it will send a message to her that she can just sit back and be taken take of.

So if I do 'whatever’ it is that needs to be done for her then she’s absolved of any responsibility or culpability for her actions.

She may have Alzheimer’s but there is plenty she is still capable of doing for herself-dressing being one of those things.

So, we’d be late but I wouldn’t have to add the label ‘enabler’ to one of the many (mad) hats I wear as we prepared for this very important date.

The Group: Pt. Xll

noreply@blogger.com (Unknown) — Wed, 16 Oct 2013 18:48:00 +0000

The meeting wound down and I was surprised that an hour and a half had passed so quickly.

As I packed up my things; notebook, pen, some brochures that were passed round the table containing information on Alzheimer’s, and other pamphlets written specifically for caregivers, I looked around the room and at the people in it and knew that I’d be back.

I was glad that I came and had to admit to myself that I was an ass for pre-judging these women, the process and for thinking I was wasting my time-I couldn’t have been more wrong.

The truth is that I wish I’d come sooner but no point in getting lost in “woulda, coulda, shoulda”, I came to the meeting when I did so that was when I was suppose to begin this part of my journey.

I was leaving with the knowledge that to be a caregiver, in the presence of other caregivers and be able to share information and stories is a rare and wonderful opportunity.

It was a great feeling to be ‘heard’ by those that know of what you speak, and to be part of a group that can validate one another’s experiences is truly unique (there’s nothing like be in the trenches with someone who’s fighting the same war).

And by living a common experience and coming together to share what we live and know, I saw first hand (or first ‘eyes’ to mix a metaphor but properly term it) that the comfort we provide one other (sometimes just by a wink, a nod, or a hearty embrace) can give us the fuel to sustain and maintain (self and sanity) as we go back to our lives as caregivers.

What I also realized as I looked around the room at the people in it is that we are more alike than we are different; bound by a common experience that transcends gender, age, race or class.

So, even thought there are people out there in the world (that I already know, and know they love and support me), the support group has become important to me, and it gives me solace to know that I am not alone, that there are other caregivers just like me (who just happen to look nothing like me).

Update: I’ve been back to the group more or less faithfully, twice a month for the past several months since that first meeting back in May 2013.

The Group: Pt. Xl

noreply@blogger.com (Unknown) — Mon, 14 Oct 2013 20:59:00 +0000

The facilitator said, “All of you as caregivers have to remember that your loved one’s brains aren’t functioning the way they used to so they're scared and confused half the time by the world around them, sometimes they don’t even know why they’re scared-they just are.”

“So, it might not seem like there's a reason to you”, she said to *Jane, ”but your husband is fighting against something that is very real to him. He just might not be able to articulate it.”

“That could be part of the reason your husband is lashing out.”

Like Jane, I sat back and let the words wash over me, drinking in the notion that Miss Cathy, like Jane’s husband, isn’t ornery just for the sake of being a bitch, she’s probably afraid and anger is the only emotion she can access.

There aren’t any little children running around our place like there is at Jane’s but I could relate to her dilemma when confronted with giving her husband choices.

Like Jane’s husband, my mom becomes overwhelmed in the face of what seems to me to be simple, ordinary choices but it’s gotten harder and harder (and more and more volatile) when it comes time for Miss Cathy to make decisions, so I made a mental note to whittle her options from "alot" down to two or none whenever possible.

The facilitator suggested that we always ‘check’ ourselves before we engage with our loved one (especially if they are having a bad day) and to never argue with them.

“You will never ‘win’ a battle with someone with dementia so why try, “ she said, “and do not try to engage them if you are angry yourself.”

I was reminded of a concept I learned in a 12-step program years ago when dealing with my own struggles.

It’s called “HALT” and it’s an acronym to remind oneself to stop and ask ourselves if we are “Hungry, Angry, Lonely, or Tired” before we put ourselves in the path of conflict.

And if in going down that mental check list we were to discover that we were one (or more) of those things then we should take care of ourselves first and then engage with the situation or another person.

Remember, even flight attendants advise that you “put the oxygen mask on yourself first and then on a (small) loved one in your care.”

* Names, characteristics and descriptions of people that I’ve met along my journey have been altered or changed to protect their privacy.

The Group: Pt. X

noreply@blogger.com (Unknown) — Thu, 10 Oct 2013 18:57:00 +0000

One by one, members of the group shared stories from their lives (which, when I first arrived, looking at the women in the room before me, I thought could not be farther from my life or experiences) and it was obvious (blatantly so) as they talked that I was wrong (so wrong) about what we had in common.

What I could learn from these women was a lot, from their strength, courage and wisdom. I was inwardly embarrassed that I’d been so superficial and quick to judge when I first sat down.

I could relate to their frustrations, fears, weariness and the loneliness of being ‘the one’ to care while others only professed to, well meaning family or friends ‘dropping by’ on occasion (when it suited them or fit into their schedules) or worse, gaving lip service rather than actual service.

Some of what I heard was sad, some depressing but not all of it.

As I listened and learned there were times when I was laughing out loud with the rest of the group in shared recognition of the absolute madness of the lives we lived as caregivers, ‘gallows humor’ as it were. http://en.wikipedia.org/wiki/Gallows_humor

In just little over an hour I was made to feel welcome and part of the group.

When the ‘round robin’ nested with me I found myself comfortable enough to share some of what I’d been going through, and just like that, in that moment of putting words to feelings in a room full of people who needed no explanation of ‘what I meant” or “what I felt” because they knew and they could relate, I felt as if I were no longer among strangers, accepted and part of the group.

Something one of the women said ‘pricked up my ears’. http://www.phrases.org.uk/meanings/289100.html

She said, “I don’t want him to change me into someone else.”

She was silver haired and very well dressed, she had a look and air about her that reminded me of a "Mocha-dipped" Carmen, the 50’s Dior model who in her 80’s is still a fashion icon and model to this day. http://shine.yahoo.com/fashion/carmen-dellorefice-81-fashion-weeks-oldest-runway-model-220400722.html

Although her comment was meant to express her specific inner struggle with the person that she used to be with her husband and her fear that the person she sees herself as now as his caregiver is different, her comment made me stop and wonder about myself.

“Have I changed?” I pondered, thinking back over my three plus years as a caregiver.

“Is it possible to walk through this experience and not change?”

“And ‘if’ I have changed, is that necessarily a bad thing?”

The Group: Pt. lX

noreply@blogger.com (Unknown) — Mon, 07 Oct 2013 17:30:00 +0000

The facilitator explained that people with Alzheimer's can become easily overwhelmed when presented with too much information or have too many things to pick from so she suggested to Jane that maybe she shouldn’t give her husband so many choices for breakfast.

She said that maybe we should all think about narrowing down options when the situation presented itself, to limit the choices to one or two for our loved ones to make it easier for them to make a decision.

“Scrambled or fried eggs for breakfast and that's it”, she said to Jane.

“Don't ask him to pick from what (to him) seems like an endless menu.”

She explained that having to make (what seems to us) a ‘simple’ everyday choice could cause great anxiety for our loved one because their cognitive skills and reasoning are deteriorating and they can’t process information the way we can (and they used to).

"Or you decide”, she suggested, giving Jane yet another option, “don’t even give him a choice, when he comes in to breakfast just serve him."

Sometimes, she said, as caregivers we don’t have the luxury of a discussion with our loved one (because of whatever stage our loved has been diagnosed) so, sometimes the best thing we can do is to make the best choice for them.

I have to say, I was impressed; with the honesty of Jane’s “share” and the no-nonsense practical suggestions the facilitator was giving her and to the rest of us by extension.

Although breakfast isn’t a hot spot between Miss Cathy and me, the information was still relevant and I thought perfect for Jane, so imagine my surprise when she said, "but he'll just get mad if I serve him the oatmeal, he'll say, "I want eggs!"

"Okay," said the facilitator without batting an eye, “then you eat the eggs and give him the oatmeal."

"As far as your grandchildren are concerned, you have to understand that alot if times loved ones with Alzheimer's develop very sensitive hearing and it's hard for them to understand things in higher resisters, all they hear is a lot of unpleasant high pitched noise.”

“And what do little kids have?” she asked somewhat rhetorically.

As a chorus of “high pitched” “Squeaky” and other descriptives for the immature vocal chords of small children were bandied about, there was also the sound of laughter; ‘laughing’ with each other and not at anyone in particular, a common sound that I should come to recognize (as I had from other 12 step groups) as a way of saying “I’ve been there, too” or “I thought I had it bad”.

And, as I sit in the meeting, listening to the shares from members of the group I’m reminded like John Bradfordhttp://en.wikipedia.org/wiki/John_Bradford, “There, but for the grace of God, go I.”