Tag Archives: My life

Come back Miss Cathy: Pt lll #RépondezS’ilVousPlait

Posted in May by

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. l

Posted in May by

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

Posted in May by

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’.

Lady looks like a dude

Posted in May by

We all know that Dementia is a serious and cruel disease that in time will rob a person of their memories and dignity.

As painful as it is for me to watch Miss Cathy’s confusion and struggles with Alzheimer’s it also pains me to see that she has forgotten about something near and dear to my heart (no, not me or my face)…Fashion.

I know there are worse things to deal with and if you’ve been reading along you know that I’ve shared enough Sturm und Drang and this ain’t that.

What’s maddening is that I don’t know which to blame, the Alz or old age for the fact that these days Miss Cathy looks like a suburban bag lady.

I understand that as one gets older it’s less about fashion and more about comfort but still…a little effort. Besides, the two aren’t mutually exclusive.

It’s not that she was ever a fashion plate (nor that she ever really had a passion for it) but
2 ½ years ago when I first joined her life she would greet each day (whether she had an appointment outside of home or not) with a different outfit and a smile on her face outlined by her favorite shade of red lipstick courtesy of Avon.

Her ‘go to’ wardrobe these days looks like pieces gleamed from a dumpster and not a department store.

Gone are the skirts and lightly embellished knit tops, nowadays she’s usually wearing a printed tee shirt over drab olive fatigues or cargo pants and zip front walking shoes and when we go out she’ll top off her ensemble with that damn Ravens football cap of hers.

I want to hand cuff her to a copy of Vogue and turn her into the Fashion Police.

She has three closets crammed full of clothes (some of which Joan River’s might even give a ‘thumbs up’) and her wardrobe is full of ‘labels’; unfortunately none of them read St Laurent, Chanel or Valentino.

She’s a retired civil servant so a wardrobe of couture is not realistic but a few pieces of St John…J. Jill….is that too much to ask?

Hell, I’d be over the moon if she shopped at Chico’s.

But, ‘it is what it is’ and she ‘has what she has’, the problem is she’s not even wearing any of her ‘off labels’ anymore.

Lately it’s hard to distinguish between her bedclothes and her street clothes (and I’m not talking about the lingerie as daywear look popularized by Madonna back ‘in the day’ either).

Miss Cathy will just as soon sleep in an oversized printed tee and then think nothing of wearing it over a pair of ‘man’pants and toddling out to my car to go to a doctor’s appointment.

I wonder if someday when she forgets who she is I can convince her that she’s Audrey Hepburn, or anyone else for that matter capable of wearing a LBD (Little Black Dress).

Till that day I can only hope…and hide her cargo pants and football cap.

#Relish

Posted in May by

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.

Physician, “Heal Thyself”: Pt. lVe Dr A

Posted in May by

I know that I’m not trying to ‘play’ doctor.

I’m just trying to be an informed advocate for my mother. I also know that Dr A has tons of patients…good for him. I’m hoping he’s making buckets of money and buying more Ferragamo shoes.

But, I only have one (patient-not pairs of shoes) so Miss Cathy is my one and only focus.

“She came in saying that she could not see and that is what I am focused on.” Dr A said self-righteously during our telephone conversation.

“Yes, that’s true but when she came in I also told you that she’s confused and yes, I-know-that-having-difficulty-seeing-would-be-stressful-for-anyone but this is more than that, that’s why we came to you for help”, I said.

I could not believe I had to explain myself to this asshole.

The conversation continued (and believe me) it did not get much better. We agreed that she’d come back to his office in three days time and he would examine her again and explain the MRI results.

Interestingly enough I got a call the next morning from Dr A’s assistant telling me that he wanted Miss Cathy to go back to the hospital for an MRA (something he never mentioned during our ‘chat’ on the phone).

I had to wonder if my insistence on his doing something hadn’t prompted the additional brain scan.

Back in his office a few days later Dr A told us that (unfortunately) the MRA was just as inconclusive as the MRI so he said that he would confer with Dr S, the ophthalmologist.

I (unfortunately) had the same misfortune to spend several days leaving voicemail for Dr S (these guys must be reading from the same ‘script’) trying to follow up with him.

When Dr S finally retuned my call he told me that he never heard from Dr A (quelle surprise) but suggested it was time that I take Miss Cathy to (get this) yet another doctor (this one a “Low Vision Specialist”).

So, another appointment was made for a potential addition to Miss Cathy’s ‘team’ of doctors.

As for Dr A, it was becoming very clear what roles we each played in this little ‘doc’udrama.
And if you asked me (…and you didn’t but I’m gonna tell you anyway) Dr A seemed to be missing too many of his cues.

He may be the Doctor and I just the Son of the patient but I’m also Miss Cathy’s ‘Legal Primary Caregiver’ making me the Director of this little production.

And as the director I thought it was time (way past time in fact) to hold auditions and recast some one new into the role of Neurologist.

My Life Coach back in New York said to me many years ago, “If you don’t like the story that you’re telling, you have the power to rewrite it anytime you want”…and in this case that’s just what I intended to do.

Physician, “Heal Thyself”: Pt. lVc Dr A

Posted in May by

As I suspected, the call never came from Dr A the night after the MRI.

I didn’t exactly sit by the phone like some school girl back in the 1950’s, waiting to be asked out on a date, but I did feel like an asshole carrying my iPhone everywhere I went that night and checking that my ringer was on every ten minutes to make sure that I wouldn’t miss his call (hmmm…sure reads like a young woman of yesteryear that had unknowingly given up her power to a male and to a communication’s devise invented by another man a century before, reinforcing negative gender stereotypes between the sexes).

But, unlike my unaware mid-century sister, I knew not to wait, and to take control. Why wait when u can take the action and call you?

Whether it’s a date or a doctor you should never think the balance of power only flows one way….his.

The wasted evening didn’t bother me so much (believed me I racked up more than my fair share of those on my own) as much as the fact that in the days after the test I had to chase him down (each time I left a voicemail I was starting to feel more and more like Glenn Close in the film “Fatal Attraction”, ‘I will not be ignored Dan’ (Dr A to be more precise)…now that I resented.

Dr A finally called in the early evening two days later.

After a perfunctory greeting I asked that he hold on the line while I put the phone on speaker so Miss Cathy could hear and talk to him as well.

He protested (which I thought was odd) saying, “Why can’t you just tell her what I’m saying?”

“Well”, I explained in my best teacher voice, honed over many years of explaining the obvious to college art students, “My mom has been anxious to talk to you since yesterday and she-is-the-patient.”

“Besides, I don’t like to convey information third party, it’s better if she hears whatever it is directly from you.”

I had made a promise to myself when this all began that (whenever possible) I would make sure that people talked directly to one another and not rely on me.

I learned early on not to fall into that trap, I didn’t want anyone to come back and say that I got something wrong. So my rule is part making sure nothing gets misconstrued or miscommunicated and part covering my own ass.

I could hear his accented voice protesting on my iPhone as I walked the few feet to Miss Cathy’s bedroom where she was already lying down for the night.

Unfortunately the doctor said that the MRI film didn’t show him anything that identified the cause of the problems she was having. Hearing our disappointment he said that he would gladly show us the film and explain what it all meant the next time we came into his office.

He spent a lot of time telling us what was ‘ruled out’ but nothing about what this was or what we should do.

So what were we suppose to do with this non-information?

Oye!

The brain guy says her brain looks ‘good’…the eye guy says her eye(s) look ‘good’…yet she still couldn’t see and she was still trying to wear her tee shirt as pants and in my book that’s still ‘bad’!

Physician, #HealThyself: Pt. lVb Dr A

Posted in May by

Miss Cathy has seen Dr A at least a dozen times in the last 2 1/2 years.

During her appointments he’d perform a few rudimentary tests to check her short-term memory and cognitive skills after which he’d determine that she was more or less the same…which was good news.

And so it was year after year, it was all pretty routine more or less until the last two visits.

Given that set of facts my complaints against Dr A seemed pretty much ‘surface’ stuff (like his patronizing ways (he always called Miss Cathy ‘Mom’ which I am convinced he doesn’t do out of affection or as a pet name but because he can’t be bothered to learn what her name really is).

I didn’t campaign for his removal from the ‘team’ since it was his manners and not his medicine that were in question.

We went to see him the day after our appointment with Dr S, the ophthalmologist (and we all know how well that didn’t go) hoping he’d have an explanation for her increased confusion (at least) and maybe some insight into her loss of sight.

Upon hearing about the changes in Miss Cathy’s condition Dr A seemed to rise to the occasion and focused his exam on the new information that we were bringing him but ultimately (surprisingly…not surprisingly?) he let us down when he didn’t have much in the way of answers or an explanation as to what was happening to mom.

Miss Cathy was very concerned (understandably) about going blind and made a moving plea for his help.

Truth be told he didn’t seem ‘moved’ one way or the other.

I mean, I know he sees distraught patients everyday but his sensitivity to her rapid decline was minimal at best (holding her hand and calling her ‘mom’ was something I was already doing on my own time at home-and I don’t have a medical degree).

Besides, what we (me) wanted were solutions not sympathy.

As for diagnosing her loss of vision…he simply ‘passed’ on that one, deferring to the ophthalmologist (whom we had just seen and I made a point of reminding him of that fact) and referring us back to where we’d just come from.

In the end he did order an MRI for the next day thinking it would give him more information as to what might be happening to her brain and said that he would call that night to discuss what he concluded after reviewing the film.

So, the next day Miss Cathy took a couple of Valium (even in a partially open MRI she gets claustrophobic and panicky) and took the test.

That evening we waited for a call that never came.

Therapy Pt. lV: Alz R Us #EndAlz

Posted in May by

Since Dr G’s referral for a therapist for Miss Cathy didn’t work out my next call was to Maureen Charlton, the Helpline Program Coordinator of the Fairfax, Virginia Alzheimer’s Association® National Capital Area Chapter.

The Alzheimer’s Association is a wonderful organization and I highly recommend them to anyone who has been touched by the disease. They have a wealth of resources and information.

The first thing I was grateful for was that they helped me to realize that I was not alone.

Their mission statement reads; “The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research”.

But (like everything in life) I have found it best not to depend on them completely and to think of them as just ‘one’ of your resources and not the ‘only’ one.

After talking to Maureen and explaining what I needed she emailed a list of doctors and therapists.

Unfortunately, as I learned a couple of years ago when I requested a list of ‘Elder Lawyers’ (no, not ‘old lawyers’, rather ‘lawyers’ that specialized in legal issues for the ‘old) I’ve learned that Alz.org’s information and referrals are not always up to date or current.

I found more than ½ dozen of the physicians on the list that she gave me for referrals was outdated.

Was I mad (no), did I get frustrated (yes) but considering the help that they’d already given me and the fact they were mostly a volunteer organization where everybody was doing their best I couldn’t ‘not’ cut them some slack.

Besides, they were kind enough to feature my journey with Miss Cathy as part of there “World Alzheimer’s Day Story Project” in 2011.

So, I took it upon my self to compile my own list of names that needed to be deleted from their list and emailed it to Maureen.

But, that still left me with more than enough professionals to contact so I got work.

As I worked my way down the list of doctors and therapist that were available to me I had to consider the very real possibility that this could all be a huge waste of time. I mean lets face it, I was looking for a therapist to help someone with problems that she might not remember having let alone remembering the solutions once she got up off the couch.

But, if Miss Cathy thought therapy might help then it seemed to me to be worth the effort to find her a good doctor, no matter the outcome.

Later that day I received an email from Maureen. She couldn’t have been more apologetic and wrote ”We do make every effort to keep our lists as accurate as possible, but as you can imagine, we cover a large territory and things change”.

She said that she was very appreciative of the info, but for me not to feel obligated, she knew that I had a lot on my plate already.

I wrote back that I knew they were doing their best and I was happy that I could help.

I just wanted to make sure that they updated their system so that another caregiver (or heaven forbid) a person with Alzheimer didn’t spend the day as I had trying to contact doctors that were either no longer in practice, had moved or in one other case needed to be removed for an entirely different reason.

http://www.alz.org/index.asp

#Therapy Pt. l: Old Dog, New Day, New Way

Posted in April by

One of the revelations that came out of the ‘alz-ervention’ a few weeks ago when the family sat down to talk to Miss Cathy was that she expressed an interest in therapy (I immediately went to the window to see if pigs were flying but it was just the blooms off the Cherry Blossoms).

To say I was surprised, shocked and elated (is true) but mostly I was happy that she was
ready to face some of her demons, many of which have nothing to do with Alzheimer’s but the Alz has definitely ‘heightened’ some of the parts of her personality that are….how shall I put this? …..strong (read: annoying as sh*t) but seem to me to be (deeply) rooted in some pain or past that hopefully she is ready to face.

I’m a big advocate of therapy, it’s helped me immeasurably at different times in my life but I also know that sitting across from a stranger, though a professional they may be, is not for everyone and especially someone Miss Cathy’s age (and generation).

And I know that the ‘Greatest Generation’ is not ‘great’ about ‘sharing their feelings’…especially when it involves the kind of navel gazing that my self absorbed generation (the last of the baby boomers-thus aptly named the ‘Me Generation”) is/was all to eager to explore.

We (me) grew up reading “Jonathan Livingston’s Seagull”, ”How to be Your own Best Friend” and “I’m OK, You’re OK”, while our parents still remember reading the WWll mantra “Loose lips, Sink ships” (and internalized that to inhibit introspection apparently).

But, it was because of their stoicism growing up during the depression and thriving after the war(s) that we were able to run around with feathers and flowers in our hair (be it an afro or parted in the middle and worn as long and straight as you could iron it), drink Coke (and later snort it) and ‘try to teach the world to sing in perfect harmony’.

So, giving the differences of how we learned to cope I applaud an older person, specifically my Miss Cathy for embracing self-reflection.

Who says you can’t teach an old dog new ways to contemplate.