Tag Archives: My life

Water off a Duck’s Back: Pt. l

Posted in July by

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.

Guess who’s coming to Breakfast: Pt lV

Posted in June by

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

Posted in June by

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

Posted in June by

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

Posted in June by

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.

Physician, Heal Thyself: Pt.Ve

Posted in June by

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.

Physician, Heal Thyself: Pt.Vd #WhiteWall

Posted in June by

I thought what Dr GG had just said to me, that ‘ruled out’ didn’t necessarily mean that there wasn’t a ‘possibility’ was some sort of word play and ‘doctor logic’ that was bullshit.

“Forgive doctor”, I said, weary of word games and tired of being made to feel like I wasn’t keeping up.

“I’m only repeating what I’ve been told and to the lay person, this person anyway, ‘ruled out’ means ‘not a chance’ and since I’ve been ‘put in my place’ and told that I am not a doctor it’s not for me to decipher the subtleties of what another doctor says to me. I can only take what l’m being told at face value.”

By way of a response he pulled out the MRI film again that I’d handed him from my “Cathy Clutch”.

Dr GG studied the film for a moment then motioned us closer to the light-box that he’d turned on and attached the large black Mylar film, revealing a reverse black and white graphic of what could only be Miss Cathy’s brain glowing back at us.

The doctor pointed out an area on the black film and told us that it was the “White Matter” located within the ‘Gray Matter’ (confused…so was I but hang in there with me).

He said that it was so thick that a small stroke could be hard to identify so if was possible that it wouldn’t show up on a scan.

I think I understood what the doctor was saying (in his round about way) and I could tell that he being diplomatic (by trying his best not to compromise a fellow physician) but I wanted to be sure of what I was hearing (after all, we’d heard so much and from so many).

Besides, I’d been building a case to persuade Miss Cathy to switch from Dr A to a different neurologist. This just might be the ammunition I needed to pull the trigger with some facts and not just feelings.

So I asked him if he was saying that Dr A had been wrong to say what he did.

Dr GG pulled the film from the light-box as it turned it off, turned to me and said, “I didn’t say that exactly, but I’m not saying that your question isn’t valid, I’m just saying that I deal in discretion.”

Great! Who was this guy…Gollum? Now I have to read between the lines and play word games!

It was obvious he didn’t want to betray some “white wall” of loyalty doctors must have for one another.

“I’m sorry doctor but I don’t have time for discretion, I just need a solution to this problem.” My brain was about to explode. I just wanted some simple, declarative statements (forget about implicating Dr A) and was hoping we’d finally met a doctor that could provide some straight talk.

I told him that I ‘live’ for subtleties, that discretion was my middle name and any other time I would be right there with him, ready to bat words around high above the heads of whomever was in the room about whatever subject was really the topic but I was too tired to decipher coded language and I was doing my best not to get worked up and pissed off.

Physician, Heal Thyself: Pt.Vc

Posted in June by

Miss Cathy was taken for a series of pre-tests alone while I gladly lounged in the reception area that felt more like an upscale hotel lobby.

I rejoined her when she was taken back to another exam room for a more extensive eye exam with (yet) another assistant (assistants, assistants, everywhere but nary a doctor to doc).

We’d been forewarned that our visit would take a few hours. At just about the two hour mark the doctor came in to greet us.

Dr GG was personable and polite, as inviting and elegant as his outer office.

He made Miss Cathy feel at ease, which in itself made the long drive worthwhile.

And more importantly he didn’t seem as perplexed as the other doctors who’d been confronted with her dilemma.

He asked Miss Cathy pointed questions and answered her queries, which were many.

I told him about our meetings with all the various and sundry other doctors, our ‘long days journey to sight’ as it were.

He listened intently as I went through my notes, telling him that ultimately all the doctors seemed confounded and perplexed, each kicking the (eye) ball down the road to the other for diagnosis.

As for the cause of her vision loss and confusion he said, “The good news is that there is a possibility that her condition was related to having Alzheimer’s.” From what I could gather he was saying it seems that sometimes the brain can trick perfectly healthy, undamaged eyes into thinking they can not see.

Then he went on to explain that the bad news was that if this were the case there was no way to reverse the damage that’d been done or prevent further deterioration.

He also theorized that she could have suffered a series of small strokes that had gone undetected.

I mentioned that Dr A, the neurologist said that he ‘ruled out’ the possibility of a stroke, and that he made the statement on two separate occasions.

Dr GG ‘pricked up his ears’ upon hearing this, saying that just because a physician stated that something was ‘ruled out’ didn’t mean that there wasn’t a ‘possibility’ of its occurrence.

“Uh?”, was all I could think to myself.

He had me at “good news” until he switched gears and decided to give me a lesson in semantics.

Physician, Heal Thyself: Pt.Va Dr GG, #NeuroOphthalmologist

Posted in June by

Dr GG, Neuro-Ophthalmologist, was a recommendation from Dr D, the Retina Specialist who was a recommendation from Dr S, the ophthalmologist where this daisy chain of doctors all started.

Each experience began differently but ended up pretty much the same; lots of tests (which came back normal and/or inconclusive) and with no definitive answer as to what was causing Miss Cathy’s loss of vision and confusion….hell, I would have settled for speculation but we usually got the verbal equivalent of a head scratch.

After a week or so of back and forth with the neurologist, Dr A (and no answers), I found myself back to square one with Dr S, asking him who he suggested that we see next. He told me to make an appointment for mom with Dr D, a Retina Specialist, thinking there might be a problem with the blood flow to the retina but (true to our track record thus far) Dr D could only report that her retina was healthy and the blood flow was normal (which would be great news under normal circumstances but as we were not living in normal circumstances).

The best thing I can say about the time we spent with Dr D is that he recommended Dr GG.

And his office was close to Miss Cathy’s condo (which was a good thing because we spent five hours, yes I said five hours in his office one day and after it was all over it was all I could do to see straight to drive the mile (or less) home where we both collapsed sitting around waiting after so many tests and disappointments when it all added up to nothing as usual…and not knowing was getting to be pretty exhausting.

I thought I was pretty well versed on all that Alz had to offer (at least during Stage One) but now but it seemed the disease had us chewing over something not on the menu.

It’d been about a month of ferrying mom from doctor to doctor to doctor and my expectations were getting pretty bipolar; swinging from manic high with optimism that the next physician would have answers (and better yet a magic pill to solve everything) to depressed low when it turned out the doctor had just as many questions as I did and the cycle would start all over again with the next doctor.

Miss Cathy alternated between a state of quiet panic at the thought of what to do if she were going blind to raging against the doctors whom she felt had let her down. I couldn’t imagine what she must have been feeling, all of a sudden not being able to see and she couldn’t trust her mind with the information it was giving her eyes with what was visible, it was truly a strange circumstance compounded by the doctor’s inability to help.

So, after many doctor’s appointments and disappointments and it was with low expectations and trepidation that we arrived at Dr GG’s well-appointed office in an upscale part of town very near the urban center.

Update 6/8/13:Dr Brian Ragsdale PhD,a long time reader of the blog, sent the following after reading the post:

VISION PROBLEMS ASSOCIATED WITH ALZHEIMER’S DISEASE

Come back Miss Cathy: Pt. lV

Posted in June by

I called my brother, Tony (second on the Phillips Lifeline emergency contact list) after talking with Miss Cathy.

It was somewhat of a comfort to hear him say that he didn’t pick up the call (for the same reason that he didn’t recognize the number) either.

“Jeez!”, I thought, if this were a DC comic we’d have made shitty superheroes because neither of us was there to answer the “Bat call”…. Oh well, at least my misery has company.

Tony knew that I was prone to beating myself up for things that went wrong so he was especially compassionate (which is not his ‘go to’ emotion being a product of our upbringing and a former career Marine and but he can be counted on to provide a shoulder when needed).

We talked for a bit, letting each other off the hook as only people in a situation like ours can. As the conversation was winding down and I knew that I had to get to the others on the list I decided to ask him for his advice before I let him get back to his life.

Should I continue with my evening or go back to aid and possibly enable Miss Cathy?

Should I call Ron, the upstairs son (and the one who thankfully answered the distress call) and ask him to go down (again) and do battle for me (knowing that’s not his role, his job or his responsibility)?

I was (after all) trying to have a life of my own, outside of her many needs, thinking that I could (hopefully) address some of my own.

But now I couldn’t help but wonder about the validity and timing of the crisis.

While I always take mom’s condition seriously I couldn’t help but wonder out loud if sometimes her confusion and panic were ways to get attention. The number of times that she seemed perfectly fine (fine being a relative term when you’re dealing with Alz) before I left home but after I was gone was another story (usually ending with my premature return).

And (interestingly) after I returned (and she calmed down) she was (back to) as she was before.

Whether this was conscious or not I couldn’t say, nor could my brother but he’d noticed the same thing himself when he had to care for Miss Cathy. There did seem to be times when her reaction to a situation seemed to spiral out of control and stabilize only after she got what she wanted.

Tony agreed that it was a conundrum and said that I could go back and do what was needed or I could stay out for the evening. But, if I did stay out, I’d have to find a way to make peace with my choice and not feel guilty.

I realized after talking about the situation that it didn’t matter if the crisis was manufactured or not, the end result was that she needed help and I needed to respond.