(In)Dependence Day


The snap, crackle and popularity of fireworks going off a night early here in the suburbs on the 3rd (and very little activity on the actual holiday which is strange) put me off my game and cereal when I awoke on Independence Day.

So, it would seem only fitting that I should walk into the living room and find that mom had already worked herself up about the “state of dependence” she (thinks) she’s found herself in (once again).

We’ve come to that place (once again) where Miss Cathy is in a state of denial, or should I say she’s remembering that she’s in denial about having Alzheimer’s since the last time when she must have forgotten that she’d reconciled herself to accepting her condition.

I spent the better part of my morning explaining to her (once again) what her diagnosis means and what the definition of dementia is.

What fun….all this while my head throbbed from all those damn fireworks blasting into my dreams the night before.

(Question: why does all the drama seem to greet me in the a.m.?…Possible answer: maybe it’s because Miss Cathy sleeps (on average) fourteen (or more) hours a day so she’s razor sharp in the post dawn and ready to rumble, as long as it’s before lunch when she’s about to tumble back into bed for the day)

So I stood behind a wingback chair (why I didn’t just sit down I don’t know, maybe I thought by standing the conversation would feel as if it wasn’t going to drag on for hours, or maybe I needed some barrier between me and her denial).

No matter, here’s a sample from her “Greatest Hits of Denial”:

1) She still doesn’t think she has Alzheimer’s:

Her new neurologist mentioned “no one with dementia could have passed the test he performed in his office”
(I tried to explain that she’s just one of those people that gave ‘good test’ but it’s her day to day life that she’s trying to put her tee-shirt on as pants and the doctors aren’t testing her for that, and it’s not like she offers up relevant information like that when they doctors ask her “what brought you in today?” her response is to talk about here knee usually, so its up to me to fill them in on herstory)

2) She can’t accept that because she has Alzheimer’s that she’s a danger to herself and others:

She’s bemoaning the fact that she can’t drive anymore which she immediately equates to her ‘loss of freedom”
(I reminded her, in no uncertain terms, that if she can’t see clearly or have the cognitive skills to put the silverware back in the drawer correctly then how the hell does she think she should ever be in the driver’s seat of a car…ever again)

3) She can’t accept that since she’s a danger to herself that she cannot live alone:

She says she feels like a prisoner
(I told her that it seems to me that she’s in a prison of her own design; that there are plenty of people in the world, her age and older that take the bus, hail a cab, or call a friend to get them anywhere they want to go. Besides, she has me as a personal chauffeur to drive here around. So, if she wants to sit on her ass in her condo that’s her choice and her’s alone)

And on and on it went, listening to her tilt at imaginary obstacles to happiness Miss Cathy reminded me of Don Quixote, but instead of chasing after windmills she’s searching for a prognosis that she’s been misdiagnosed and she can get back to the life she led before.

So, long before night would fall and the rest of America would rise to set off fireworks in celebration of the nation’s birthday I could already see the bombs bursting in air (in my mind’s eye actually) as I settled in for a conversation about (in)dependence.

Happy fucking Fourth of July to me!

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Guess who’s coming to Breakfast: Pt lV


Once inside the foyer, Aunt Dorothy made a big show of taking off her shoes (which was kinda sweet actually) even though Miss Cathy and I both tried to insist that she didn’t have to participate in the custom that we adopted from my sister-in-law’s Japanese traditions.

“No”, she insisted, demonstrating flexibility worthy of someone decades younger than her eighty-four years, smiling all the while as she bent down to unlace her shoes.

“I know what to do”.

It seemed to me that Dorothy wanted mom to know that she’d been listening during all their conversations since Miss Cathy became ill.

And that she remembered all the stories she’d heard about all the redecorating I’d done to the condo and the wall to wall carpet Miss Cathy was so proud of and how determined she was to keep it looking as new as possible for as long as possible (believe me, if she could have wrapped it all in plastic as was the trend in so many lower middle class households in the 60’s I’m sure she would have).

They walked arm in arm into the living room, comfortable to be in each other’s company again.

For the briefest moment I could see the girls they once were together, while Aunt Dorothy pointed out the various changes that had been made since she’d last been ‘up north’ as if she were the guide and Miss Cathy the visitor.

With everyone settled around the two matriarchs, mom in her usual spot at one end of the sofa nearest the windows and Dorothy across from her, to her left in a wingback chair, my cousin, Dennis in the wingback next to his mother and Darlene, his wife next to mine, I went off to gather drinks and start the meal.

I decided on a red, green and yellow pepper omelet stuffed with cheese, bacon on the side and toast, nothing fancy, just colorful.

I forgot to garnish the plate with one or two strawberries (always thinking that a ‘pretty’ presentation goes a long way in balancing ‘so-so’ cooking) because I was too busy trying to get the plates out as soon as I could to feed our guests, still not knowing how much time they had to spend with us before getting back on the road.

Laughter from the living room where Miss Cathy held court drifted into the kitchen and mixed with the sounds of the eggs cooking and bacon sizzling.

She’s never been at a loss for words and after years of hearing most of what she has to say, I smiled to myself as I folded and flipped an omelet, happy knowing that she had a new audience that she could entertain.

Guess who’s coming to Breakfast: Pt. lll


My cousin phoned early the next day to invite Miss Cathy and I out to breakfast.

Neither of us acknowledged that strange sensation of hearing someone’s voice that you knew as a child but was never introduced to as an adult so we both feigned familiarity.

I thought the ‘plans’ (such as they were) was for them to come visit us at home. I’d stocked the fridge with food for breakfast, lunch or a light supper since I was never told when they would arrive.

I insisted that they come to us from their hotel nearby whenever they were ready.

Over my relative’s many objections when I said that I would cook for them he finally relented and I made sure he had the address.

I thanked him and said that they would be doing me a favor. Because of mom’s condition it would take a lot of effort and energy for her to navigate the crowds, noise and unfamiliar surroundings if we had to venture out to meet them in a restaurant-especially on a Saturday.

It seemed no sooner had I hung up the phone and started to prep in the kitchen that I heard a knock.

I’d expected to greet a gaggle of people that might resemble me in some fashion but there was only one person at the door, Aunt Dorothy.

My mother’s favorite sister in law and possibly my favorite aunt stood there, smiling up at me with open arms welcoming me into her embrace. As I leaned down to hug here I was amazed at how is it that a relative can loom large in our childhood mind’s eye of remembrance which is in stark contrast to the reality of the diminutive elderly relative standing before the adult me.

As I hugged here I saw my cousin’s wife, (whom I’d never met) and cousin walking up behind her explaining that they’d sent Aunt Dorothy inside while they parked the car.

Hearing the frackus of introductions and hugs in the hallway Miss Cathy toddled up to join in the hootin’ and hollerin’.

She’d waited a long time for a family reunion of any kind so it was nice to see her swallowed up in their embrace.

I’m sure to Miss Cathy that even as she invited them into her home it felt a little more like home, surrounded as she was by her kinfolk; their smiles, their touch, and their speech with it’s familiar southern singsong that must have been music to mom’s ears.

Guess who’s coming to Breakfast: Pt. ll


It’s not easy watching Miss Cathy carry her anger and hurt about her family around like a wounded bird, gently tending to what’s broken yet ever ready to wage war lest it be taken advantage in its weakened state while trying to make peace with the damage done.

And just as sure as the sun follows the moon you could count on a diatribe whenever the tender subject of her families absence from her life comes up.

“I’ve been running up and down the highway for years taking care of them, taking time off from work, leaving my kids when they needed me”, she’d say, working herself up then her voice would calm down and her anger would turn wistful, “if I knew that this is the way that they would treat me….”

When her anger was spent she’d confess that she wouldn’t have done anything differently; she would still have gone to care for her mother when she was alive, even though there were siblings living right there in the same town (and on the same street).

She’d do it all again for any one of her three sisters or two brothers if they needed her.

Such is the nature of families, a conundrum wrapped in an enigma.

I can’t imagine how she feels.

She just always assumed her family would be there for her in kind.

Looking in on her life as I have the past three years, I can see that they care (evidenced by their phone calls) but no one seems to care enough to make time to visit.

That’s why I always refer to her family as ‘relatives of unknown origin’.

To me they’re not worth identifying or remembering as individuals when (for years now) the lot of them have displayed the same disappointing ‘group think’ and continue to offer up excuses and indifference instead of showing up.

In my book, it’s very simple “if you care-you’re there”…period.

Family is made up of more than blood and the happenstance of kin; family isn’t just order of birth and it isn’t a birthright.

‘Family’ are the people that love, support, and nurture each other. Family are the people that you can turn to, lean on and you always know that you can let down your defenses because they are there to defend you.

So, with the arrival the next day of mom’s sister in law, nephew and his wife it was gratifying to know that someone(s) in her family was finally making an effort.

Regardless of how long it’d taken or for whatever reasons they stayed away so long, the simple act of showing up is a powerful first step toward making themselves worthy of relatives being known.

Guess Who’s coming to Breakfast: Pt. l


Not too long ago Miss Cathy received a telephone call from her sister-in-law telling her that she was coming north from the Carolinas for a visit.

This would be the first time any of her immediate family has come to see her since her husband died fifteen years ago and her Alzheimer’s diagnosis almost three years ago.

Mom was so excited to have ‘company’ that she was bathed, powdered, hair coiffed and anxiously waiting on the living room sofa early on a Friday morning dressed in a cream colored top with applique at the sleeves and a pair of slacks in a festive red color (so much better than her almost daily uniform of an oversized tee shirt over army fatigues).

She was like the first kid up on Christmas eagerly waiting for everyone else so they could all share in the magic of the day together.

Her favorite sister in law (widow of her oldest brother) was being driven North by one of her sons and his wife. They were stopping for a brief visit on their way up the East Coast to New Jersey to see other relatives.

“So”, I thought to myself when I heard the news of the impending visit, Miss Cathy was only the appetizer and the relatives further up the Northeast corridor the main course but, hey, “a visit is still a visit”.

Her family, mostly all of who live ‘Down South’ consists of three sisters, a brother, their spouses and offspring. And for whatever reason they’ve kept in touch pretty much the same way through the years, regardless of what’s happened, via telephone and the occasional holiday or birthday card till now.

Since I’ve lived here I’ve overheard promises from her family to visit and plans being made but for whatever reason the rubber never hit the road and they never come.

The only family she has seen since her diagnosis is her cousin, Mary and Mary’s two grown daughters who live here in the same state as mom.

But, I don’t think the reason they come is because of proximity, the come because they care.

Believe me, I am just as grateful for Mary and her daughter’s visits as Miss Cathy. They come with love and leave love behind.

It’s my firm belief that at the end of the day ‘people do what they want to do’; so wind, nor rain, nor front row tickets to a Lady Gaga concert could keep someone away from whatever it is that they really want to do.

So, the fact that not one of her siblings has come to see her is an on going source of pain, anger, disappointment and bewilderment for Miss Cathy.

But she was obviously ready to let all that go as she sat, barely able to contain herself every time she ‘thought’ she heard someone at the door, waiting for a familiar face from home.

When I walked into the room to help her with her morning meds it almost broke my heart to have to tell her that they weren’t due to arrive till Saturday.

Come back Miss Cathy: Pt lll #RépondezS’ilVousPlait


After listening to the voicemail from Phillips Lifeline my first instinct (like any good doggie) was to abandon my evening, turn tail and return home.

But, since I’m a person and not a dog I sat in my car for a few moments to ponder the situation. Before I went anywhere I knew that I needed to call mom (and hope she wasn’t too freaked out and had her shit together well enough to answer the phone) and find out what was going on and get a feel for where she was emotionally.

I had just enough time as I waited for the call to connect (or not) to beat myself up alittle for not picking up the unknown call earlier and for not having the number in my contacts in the first place! (I have since added the name/number to my phone contacts list).

The names of the people on the emergency contact list that Phillips Lifeline had contacted were also running through my head.

I knew that I needed to call them back asap…including Phillips Lifeline…Oye!

To my relief (and surprise) mom did pick up the phone. She said that Ron, our upstairs neighbor and her unofficial third son, had come down to reset the alarm then gone back home.

She was clearly agitated, sounding like ‘fragile Cathy’ and said that she wanted nothing more to do with setting the alarm after I suggested she try again and then go back to bed.

I told her that I would walk her through the steps (something she’s done a thousand times but because of the Alzheimer’s each time is the becoming the first time) and tried to reassure her that she could do it but she was having none of it.

“Do me a favor and breathe with me”, I suggested, her anxiety growing when it should have been dissipating.

“I know you, if you don’t set the alarm you’re just going to lay awake and jump all night every time you think you hear something…you won’t get a wink of sleep.”

“Yeah, well”, she lamented, “then I-just-won’t-sleep-then. I’m not fooling with that damn alarm thing again tonight!”

“Okay then, if that’s you decision…” It was no use arguing with her so I said good-bye and hung up.

A deep breath then it was time to call everyone else that had been invited to this little ‘panic party’ and tell them thanks for the rsvp and that they could all go back to whatever they were doing, all the while parked not two blocks from the restaurant where I should have been répondez s’il vous plait for my own evening.

Come back Miss Cathy: Pt ll #PlannedSpontaneity


While mom was settling into therapy with a couple sessions under her belt my thoughts turned inward.

I was thinking that with her ‘team’ in place (doctors for the body, brain and mind) I could start to put together a life for myself outside of Miss Cathy and caregiving.

So, a couple of weeks ago I ‘planned’ to be ‘spontaneous’ for a change and go into the city to see a new friend and hang out.

When the day arrived I was ready by late afternoon so I went into Miss Cathy’s room to tell her that I was leaving. It’s not the norm for me to ‘report’ my comings and goings but I usually like to give her an idea of what I’m doing if I’m out of the condo for more than four hours…especially at night.

I told her that I’d probably be late getting back or may even stay overnight in the city so she shouldn’t wait up for me (as she is want to do as if I’m a teenager but…hey, ‘whatareugonnado’).

Knowing that she would be anxious as soon as it grew dark outside I suggested that she arm the security system after I left and I would turn it off when I came back.

I set out for my evening feeling very grown up and almost like the unattached and carefree bachelor that I used to be, responsible for nothing more than my own path and pleasure.

Somewhere in the midst of my car ride away from the burdensome-burbs to urban-unencumbered, with the music cranked up while I sang along to my favorite pop tunes my phone rings and I decide not to answer (not because it’s against the law in the state where I live) but because I don’t recognize the number.

Arriving at my destination, relaxed and ready for my night on the town (which at my age was probably going to be nothing more than dinner and a show, but still…it was a far cry from spending the evening listening to Miss Cathy’s TV through the walls as I tried to watch my own, write or read a book).

I take a moment before I get out of the car to satisfy my curiosity and listen to the voicemail. Turns out the call was from Phillips Lifeline telling me that Miss Cathy had pressed her medic-alert button.

The Lifeline operator said that she called in a panic because she’d messed up settings on the alarm and was afraid it was going to start screeching at any moment if she touched it again.

The operator finished by informing me that she would move on to the next person on the contacts list since I did not answer the call (was it my imagination or did I hear disapproval in her voice because I’d not picked up, or was I just calling into question my choice as first on the list in case of emergency).

“That’s gotta be a land record”, I thought to myself. I’d barely begun to taste freedom when it seems my parole was being revoked.

Looks like it was time for ‘little Sheba’ to come back.

Come back Miss Cathy: Pt. l


The 1950’s stage play (and later film version) of “Come Back Little Sheba” was a story of a housewife in crisis heartbreakingly portrayed by the late great actress, Shirley Booth.

Her character stands just outside her kitchen door (and her life) late at night where she can be heard calling for her lost dog.

During the course of the drama it becomes evident that she’s longing for the return of more than just (wo)man’s best friend.

This morning it struck me that the same could be said of Miss Cathy.

While she rarely stands anywhere for long these days she does seem to be lost in thought a lot and more often than not looking out the window as much as she’s looking a the television.

Her introspection led me to wonder…do her anxieties and nervousness go deeper than the dementia? Does the fact that the ‘present’ confuses her open her up to see the ‘past’ more clearly? And if it does, what does she see there?
Is she looking for something other than what that she’s lost since her diagnosis…her independence, freedom, sense of self?

She’s just started therapy recently and I am hoping it will help.

After her first consultation I went in to talk with the therapist for a moment, she warned me that sometimes (depending on the trauma or issues uncovered) an elderly mind can be determined to be too fragile to confront whatever has happened (this is especially true of some dementia patients) and if that’s the case then it might be best to let the past stay unexamined.

I know some of Miss Cathy’s past troubles and hardships but it’s not for me to say, nor for me to judge how she’s walked thought her life, her choices and what she chooses to talk about.

Everyone’s life contains pain and it’s up to the individual to bare witness (or not) to his or her own emotional holocaust.

With that in mind I’ve encouraged mom to continue therapy (she was questioning whether or not to go back after only one visit) and to give time time.

My hope is that in time she may feel safe enough (and comfortable enough) to finally talk about what’s been unspoken for so long.

#AromaTherapy


I feel as if I have failed Miss Cathy.

This thought comes to me as she and I sit next to one another in her therapist’s office. In these closed quarters there is the distinct odor of… how shall I put this…body odor.

But, is it body or booty? I can’t be sure which but what I do know is that it ain’t me and there ain’t nobody else waiting to get their head shrunk so it’s gotta be Miss Cathy.

With all that she’s going through it’s definitely not her fault. It stands to reason that if she’s trying to put her tops on as bottoms that she might not be as attentive to her bottom bottom during her ‘toilette’.

If anything I was remiss in not considering the possibility that even very personal routines might be affected by her recent confusion.

I guess I’m still a work in ‘caregiving’ progress because I (thought) I was ‘allowing’ for her independence and personal space by not policing her personal hygiene but I should have smelled this coming once things started to go south mentally.

I really shouldn’t beat myself up (it’s not like that’s gonna freshen up the air around us) the thing to do now is to focus on making sure that this never happens again.

So, after we leave here I will need to have a conversation with her about hygiene in the car on the ride home.

Since I’ve been her caregiver there is little I haven’t done already (including bathing, clothing and feeding her) during those times when things were really bad but those times are few and far in between and there seen to be different levels of boundaries and intimacy depending on how sick or well your loved one is at any given time.

Hygiene is a difficult subject to broach with someone, no matter how close you are or how boundary-‘less’ you seem, there comes a time when the conversation turns to cleaning.

We decided to add ‘moist-towelettes’ to her routine and to always have a small bottle of mouthwash and spray perfume in her purse so she can freshen up.

It seems to me that this is yet another ‘marker’ on the great ‘slide’ downward.

Just when you think its ‘one’ thing, another ‘thing’ pops up to remind you that your loved one is slipping away.

Things may be difficult and we’re juggling a host of issues from cognitive, visual and emotional, but she’s still Miss Cathy, a woman of great dignity and it’s my job to make sure that dignity stays intact, even when she’s not aware of it’s absence.

Be that as it may, if she is slipping from now on she’ll fall into therapy smelling baby fresh with just a hint of her favorite ‘Oscar De La Renta’ perfume.

Update: This post was written on April 14th during a challenging time that has since improved, yet another example of the ‘up and down’ nature of this disease.

I’m happy to report that (for now) Miss Cathy’s does not need as much supervision or so close a scrutiny as to have to pass the ‘smell test’.

#Relish


Noun: means great enjoyment, delight, pleasure, glee, satisfaction; humorous delectation.

“I appreciate everything you’re doing for me but I’m tired of going to all these doctors.” Miss Cathy said as we walked off the elevator in route to her latest appointment to see her new therapist.

Walking behind her (less like a Sherpa and more Bodyguard-meaning ‘guard of her body’ if she happens to fall) I thought to myself that I find it interesting that she forgets the day of the week, how to operate the can opener and whether or not she’s taken her meds but she never seems to forget how to complain.

But, for all her complaining before the thereapy sessions she seems and says that she feels better after.

It wasn’t exactly a fragile day (“fragile” are those days when she’s especially tired, confused and she looks as if the entire world is against her) but I could see that all the appointments of late to the various doctors were taking a toll on her.

My problem with her complaints (which are numerous and often) is that she just seems to be negative for the sake of being contrary.

No, it’s more than that, I get that she feels powerless; she can’t live alone, make decisions, drive, cook or even plan her own day for the most part, so I understand that the only thing she (may) feel she has control over is the ability to say “No”.

But, I also see (more often than not) that she’s not doing anything positive or constructive with her day (like exercising, going to adult daycare or anything else except lazing in bed watching TV and napping all day) that would prevent her from whatever it is that I’ve scheduled.

She may talk a good game about how she ‘loves to go places, talk to people, laughter, blah, blah’…but given the opportunity to engage with others (outside of talking on the telephone in her condo) and she will usually find an excuse to stay home and not participate.

Her therapy appointment is a good example.

She has an opportunity to talk her head off (to a captive audience no less) and after two sessions she was grousing that she didn’t want to go anymore.

“Well,” I replied, closing the door after we’d entered the office, relishing the opportunity to parrot back to her something that she’d said (and I loathed) my entire childhood, “Sometimes you have to do things that you don’t want to do.”

You’ll understand that someday when you’re a parent and You have a child she always said.

“Yeah, well I know that.” Her voice trailed off as she plopped into a chair, unaware of the irony in the reversal of roles.