Water off a Duck’s Back: Pt. l


At what point should a caregiver ‘give up caring’?

When should you abandon a course of action that (you know) will benefit your loved one but they simply don’t want to do? When should your hopes and dreams for their wellness take a back seat to their fear and inflexibility?

These questions (and more) seem to swim around in my brain more often these days.

When I moved here to take care of Miss Cathy one of our first battles concerned the amount of exercise she was (not) doing. I’d already waved the white flag of defeat over her doing any sort of strengthening or toning exercise and decided to focus on walking.

I tried cajoling her, offering to walk with her (which believe me was no easy offer to make considering that she wobbles along at a pace that a turtle could easily overtake).

And I told her that I would help her by maintaining some sort of schedule but after one or two short (I’m talking less than an eighth of a mile short) walks, she simply wouldn’t go outside with any regularity, no matter what sort of ‘schedule’ she’d committed to.

Whenever I reminded her or prodded her to ‘take her walk’ she would let out any number of reasons why she ‘couldn’t’ (not that she wouldn’t, it’s just that there was some impediment in her way); it was (either) too cold, too hot, too late, too rainy or she was just too tired (from what I have no idea when her day consisted of moving between sitting on the living room sofa and laying in bed).

She got more mileage out of here excuses than her walking shoes would ever accrue.

I quickly found out that if I pushed her too far she had no trouble exercising her tongue and telling me to ‘back off and where I could get off’.

Miss Cathy could and would curse me out (not often but with enough regularity to warrant my being very aware of how far to push).

And the language…..Wowsa!….. Miss Cathy can swear like a sailor during a perfect storm without a wit of regret or worry that her ‘sweet little old lady’ card would be taken away if the ‘Old people potty mouth police’ could hear the vulgarities coming out of her mouth.

“Like water off a duck’s back”, I’d mumble to myself, a phrase I learned much to late from Jinxx Monsoon, the recent winner of RuPaul’s Drag Race. She’d use the phrase like a healing chant (and invisible shield) whenever some insult was hurled her way by one of the vicious queens competing against her.

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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.

Physician, Heal Thyself: Pt.Ve


Miss Cathy sat in the chair in the examination room and (for once) just listened (instead of interjecting herself into the conversation) as Dr GG and I squared off.

To be fair, we were talking about her just not to her, an unenviable position I’m sure but it’s more efficient for me to speak on her behalf (as it would be for any caregiver) than for the doctor to play twenty questions with the patient and have to try to interpret every answer for truthfulness and accuracy.

It wasn’t that the doctor and I were at odds, or having a disagreement really, we’d been in synch pretty much from the minute he walked in the room, it was only when I tried (and I knew better but couldn’t help myself) to get him to talk ‘smack’ about another doctor that I hit the ‘White wall’.

So, it was just a matter of me not having the energy to read between lines any more than mom could read the large capital letters projected on the wall that caused a kerfuffle.

I shouldn’t have tried to pit one doctor against another, but (after being exposed to a doctor that knew what he was doing) I didn’t need Dr GG to corroborate my suspicions.

I knew that it was time to bid adieu to Dr A and his fawning ways.

It was one thing to keep my opinions about Dr A to myself (or try to anyway) when her condition was more or less stable and quite another when she needed more than just someone holding her hand and calling her ‘mom’.

By the time we left his office alittle while later Dr GG had concluded that there was a possibility that mom’s confusion and loss of eyesight might be related to her Alzheimer’s but he couldn’t be sure.

He also suggested that we seek a second opinion from a Dementia Specialist (a ‘specialty’ that I did not know existed until he explained it all to me and it makes sense given the rise in diagnosis each year) and he said that he would consult with a colleague to get me some names of someone we could see.

It’s funny, all this time I thought I was doing the right thing by taking mom to a ‘neurologist’ but now I was wondering if I’d dropped the ball wasting my time on the ‘GP’ of the brain when there was someone out there skilled in her disease specifically….I felt like a yutz.

They say ‘hindsight is 20/20’ which Miss Cathy no longer had so I guess it’s better to look forward than back.

Before I could fall too far down the rabbit hole of ineffectiveness Dr GG (true to his word) emailed me a few days after our visit with the contact information of a prominent doctor that specialized in Dementia who headed a top University clinic not far from us in the Nation’s Capital.

Dr GG wrote that there were only a few Dementia Specialist in the country so I should be aware that the demand to see this doctor was high and that he rarely took on new patients.

Sounded like a challenge and if it was, I was up for it.

Come back Miss Cathy: Pt. V #CarefreeToCaregiver


I found myself back on the road, headed home.

I’d been parked the entire time I was having this internal debate just a few blocks from the restaurant downtown that was suppose to kick start my evening.

I was too embarrassed to walk the short distance to cancel in person so I called from the safety of my car.

As soon as I’d hung up I wondered if I’d have changed my mind and stayed if I’d gone inside the restaurant. Would I have sat down, ordered a drink, engaged my date in conversation and been able to be the person that I once was and longed to be again (at least for one night)?

The answer to that I will never know but my actions told me that it was time to stop looking back, longing for the life that I had and focus on how to create more balance in the life that I have now. Sometimes the greater challenge is accepting what is instead of expending energy trying to recreate what was.

I also made a promise to myself not to be angry with Miss Cathy.

Going back home was my decision and there was no reason to pout or act as if she’d done something wrong, she hadn’t, she was just being who she is, which is unpredictable and I was just going to have to accept that fact, too.

Once I was back at the condo I walked in, checked on her (as predicted she was back in bed wide awake and still agitated) so I sat with her for a moment so she could talk about what had happened.

In no time at all I could see that she was settling down and more relaxed because she was no longer alone.

I changed clothes (goodbye ‘carefree’ and hello ‘caregiver’) and in no time I was back into my nightly routine of washing dishes, straightening up the kitchen and setting the alarm, signaling that all was well and everyone (everyone meaning me) was in for the night as if just an hour before I hadn’t been out in the night.

As I often do, I walked through the apartment ‘fluffing and tucking’ stopping at the sliding glass doors that lead out onto the balcony.

I leaned my head against the cool glass and looked out over the complex, past the apartments across the parking lot, up to the sky, and it was then that I realized, agitated or not, confused or focused, in the past or present, manipulating me or being manipulated by her mind, Miss Cathy may be searching but she was always here….it was I who had to come back.

#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.

Do I look fat in this life?


There are a lot of things that go into being a caregiver; some you know (and are prepared for) and there are other things you learn as you go.

I’ve found a lot of support these past two years from Alz.org, chat rooms and support group meetings but one thing that surprised me about this experience that seems to be overlooked and never really talked about (at least not to me) is the tendency for the caregiver to get FAT.

I look around at a lot of the caregivers that I’ve met and I see a lot of lard asses-mine especially. As Whoopi Goldberg quipped, “Once I thought someone was sneaking up behind me and when I turned to look I realized it was my own ass.”

I bring this up not to say that this happens all the time to everyone in my situation. No, there are a lot of caregivers who have been able to balance the enormity of their new roles without becoming enormous themselves.

But it did get me to thinking about the connection between the stress we’re under and obesity.

We all know that obesity is rampant in our society; poor diets and lack of exercise being two (obvious) reasons but stress has been linked as a contributing factor as well. For me, and I’m only talking about my own tonnage here, I found that there was so much to do in the beginning and so much change occurring that once I had my routines set up for my loved one and I had a chance to catch my breathe and focus on myself what I saw surprised me.

How did this happen and when did I let myself go?

I began to wonder, like the “freshman fifteen” that some young people gain during there first year of college; due to the change in environment, the stress and the anxiety of being on their own for the first time, is there a similar correlation for caregivers as we transition into a new environment, as well as the stress and anxiety of “Not” being on our own for the first time as well?

If freshman can be forgiven for their “fifteen”, is it possible for me to get a little understanding for my “Alzheimer’s eight” or the “Dementia dozen”?

Believe me, I take full responsibility for my rotund-ti-ty, as my role as caregiver has expanded so has my waistline. And while I never had Paul Ryan’s abs (and thankfully I never had his views on restricting women’s reproductive rights either) I would like to see my feet again some day.

It’s nobody’s fault but my own and intellectually I know what needs to be done to return to my former svelte self-eat less and exercise. But, that’s easier said than done when you’ve stressed, often lonely and lack the motivation to give yourself the time and energy you’ve poured into your charge.

It’s not that I’ve been “so” selfless, I’ve just been too tired to care and being out of my own environment and routines I’ve found that I’ve developed some really bad habits-namely eating too much of the wrong food and not moving my body any more than is necessary.

The reality is that at the end of a day running around looking after someone else the last thing I want to do is run for myself.

I used to go to the gym, walk (I’m a former four mile a day runner but I blew my knees out years ago and switched to walking long distances instead) and maintained a rigorous stretching and exercise routine.

I ate a healthy, varied diet of vegetables, fruits, chicken, fish, some red meat and low fat or sugar free desserts. It was satisfying, I didn’t feel deprived and it gave me the energy I needed to fuel my life.

Unfortunately, it seem that these days I’ve pretty much abandoned anything that’s healthy for whatever is quick and easy (which mean it’s usually something frozen, processed and full of sugar and/or sodium). And I greedily grab for any and everything that can give me a moment’s comfort or (faux) sense of relief from my daily life’s stresses (read: junk food and sweets).

This is a classic case of emotional eating and sublimation.

Think of it this way, while the anorexic or bulimic denies themselves food or regurgitate as a way to control one aspect of a life off-kilter, (maybe) my eating and sloth like existence is my way of “not” having to be in control when I have to be responsible for someone else all the time-for the first time.

Hmmmm, maybe I’m onto something here….but, like the person who tries to commit suicide-you’re trying to kill the wrong person….so, maybe I’m force-feeding the wrong person, too (metaphorically).

No, I’m not saying I should be strapping Miss Cathy to her bed and feeding her color coordinated food nonstop till she fattens up like a piece of veal (not to say that she’s not doing a pretty good of that all on here own)…but I digress.

No, what I think my “light bulb” moment is telling me is that what I’ve been doing by engaging in behavior that I know is bad (and bad for me) is that I’m punishing myself instead of expressing the anger I feel toward my charge and the difficult situation I find myself in but was unprepared for emotionally (unknowingly).

So, I turn to food (that tasty panacea) and inertia; depression, denial and frustration all seem to more palatable when you’re prostrate with a plate.

Great, now that I’ve acknowledged the obvious I hope it’ll help when the cookies are calling me at midnight when I decide to stay up and watch “Shoah”.

While I seriously doubt that anything will change overnight with this revelation I do know that the first step to solving a problem is acknowledging it. I didn’t exactly work up a sweat thinking this through but I do think it was an exercise worth pursuing.

Who knows, now that the mind has been stimulated maybe I’ll surprise myself next by moving my body…….even if it’s just to push back from the table.

Doppelgang-ette


It’s been said that every one of us has an identical twin, a “doppelganger”, walking amongst us somewhere on the planet. Your replicant could be in the next town or in Abu Dhabi, looking like you, sounding like you and living exactly the way you do here and now.

Lately though I’ve been seeing a variation on the Doppelganger; women that don’t look exactly like my mother but they posses her essence and a lot of her physical characteristics-a “Doppelgang-ette” as it were.

And they are everywhere it seems, in the Malls, downtown, in restaurants, but mostly I see them when I’m in the grocery store. I see little old women wobbling along behind their carts as they push them through the aisles. I don’t know whether their gait is because of bad feet, arthritis, having walked a lifetime of working and caring for others or if (at this stage of life) it’s because of a knee replacement (or two), or from carrying a lifetime of extra weight and worry.

The way these women walk, rolling from side to side as they move forward, reminds me of a popular toy for toddlers that was advertised on television over and over when I was a kid. I see these women and I can’t help but hear part of the jingle in my head, “Weebels wobble but they don’t fall down”-only most of these wobblers need the same medical alert necklace that Miss Cathy wears (Help! I’ve fallen and I can’t get up!) Because unfortunately, unlike the toy- they will fall down.

It doesn’t matter their race or color, they all share the same “old” DNA, a penchant for loose comfortable dresses or elastic waisted pants of a non-porous material and makeup that has evolved from wanting attention in youth to commanding respect in their golden years.

I watch them as they make their way to the cashier to check out and some are pulling out their coupons (as I’ve learned to do) while others look worried as the register totals an amount that may exceed their budget for the week.

I applaud them being self-sufficient, by necessity or design, because they are usually alone, no husband, friend or adult child to reach for something on a top shelf, or to bend waaaay down for something they need but have to decide if it’s worth the effort or not.

A little over a year ago Miss Cathy was one of them, wobbling along, up and down the aisles marking time and making do as her memory started to fail and daily life became harder and harder. I can only imagine how hard it must have been for her to shop; never knowing that when she returned home only to realize that she forgotten what she really went to the store to buy or came home to discover that she’d already purchased the same items just a few days before.

What must she have said to herself when she found that her world was getting smaller and smaller and that within the year she’d soon “choose” to stop driving long distances to visit her son in Virginia or travel to a casino for an afternoon of her beloved game of quarter slots and that the market a mere mile away would be about as far as she would venture from home.

I watch them; the doppelgang-ettes and I wonder, “Who is home waiting for them?” Do they have any maladies and if so, is someone there to care for them? As they drive away do they worry that this may be the day that they get into a car accident or forget the way home? And when they make it safely to their destination is there someone on that end to take in the heavy bags that the clerk wheeled out to her car and placed in the trunk for her?

I see these women and I see Miss Cathy.