Tag Archives: caring for the elderly

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.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. Vb

Posted in June by

Miss Cathy was quieter than usual as we settled ourselves in Dr GG’s waiting room after I checked us in with the receptionist.

We sat in a pair of soft leather seats angled for intimate conversation and privacy accented with a small side table topped by fresh flowers in a bud vase.

Ours was one of many such groupings in the large well-appointed room. Under our feet the carpet looked to be a high-end Berber and the walls were papered in a tasteful stripe.

And instead of the ghastly fluorescents glaring down from a drop ceiling that can make any one look ill (even those that are not sick) the lighting here was a healthy soft glow emanating from sconces, floor and table lamps.

I was impressed to see original art on the walls (not the faded, dated prints one usually finds in a doctors office that looked like they’d been holding up the walls since the 1980’s).

There was also a large plasma TV and computer workstations for patients to view and peruse while they waited.

The conspicuous display of taste and wealth went a long way to make me feel comfortable and was a welcome change from the other offices where I felt like we were waiting in a bus depot in Hoboken, New Jersey (no offense Hoboken).

Dr D, the Retina Specialist told me that there were only a few Neuro-ophthalmologists in the country so I assumed that might account for the feeling of exclusivity in being in Dr GG office.

Because of a cancelation I was lucky enough to get the appointment for Miss Cathy as quickly as I did.

I’m not sure if mom noticed the change in surroundings or even cared, she just seemed pleased that I’d remembered to bring some water and snacks for her to eat while we waited. It was obvious that all the running here, there and getting nowhere was finally wearing her down.

But, as an assistant came out to walk her back for some ‘pre-tests’ (my presence was not needed just yet) I could hear her asking the young man question after question so she still had some life (and a lot of babble) left in her.

I was getting pretty worn out too but came prepared (as always) with my “Cathy Clutch” (a tote bag filled with all of her files, paperwork, notebook and the film from all her exams) so I was ready for whatever was to come, “Once more unto the breach, dear friends, once more”.

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.

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 ll #PlannedSpontaneity

Posted in May by

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.

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.

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’!

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