Tag Archives: observations from an outsider about someone with dementia

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 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.

#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.

#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.

#Physician, “Heal Thyself”: Pt. ll

Posted in April by

As a caregiver I’m responsible for all aspects of my loved one’s care, and as Miss Cathy’s son I feel doubly responsible for her physical and emotional well-being.

To that end I have tried my best to work with doctors’ that she’s had relationships with for years as well as those that are new to both of us since her Alz diagnosis in 2010.

It’s my feeling that at the end of the day she is only as healthy and happy as her ‘team’ of doctors has helped her to be (and that means if it’s a regular check up or when she is in crisis).

My opinion(s) of her ‘team’ (of doctors) shouldn’t matter one way or another (you know what they say about ‘opinions’…) butt, of course I have one (some) and here they are:

Dr S, The Ophthalmologist

After her (seemingly) abrupt loss of vision and increasing confusion, the eye specialist was Miss Cathy’s first request of a physician to ‘see’ and it made sense since ‘suddenly’ she couldn’t.

Miss Cathy has been going to Dr S for years; a birth defect took away the sight in her left eye so she’s been dependent on her right eye her entire life.

We waited almost a week for the appointment because the receptionist said, “that was all they had” and my explanation of her situation didn’t move her to get us in any sooner.

The doctor’s assistant brought us back into a room where she performed some preliminary tests. Dr S came in soon after to take over the exam when it was clear to the assistant that Miss Cathy’s condition was anything but preliminary (and above her pay grade).

He asked her several questions, had her hold a Victorian looking contraption and told him what she could (or could not) see through it, the after some other optical tests he rendered his opinion.

He ruled out a stroke, then he said that he saw no blood behind the eye so he could only conclude that the eye was ‘healthy’ and he seemed just as puzzled as we were that she couldn’t see clearly….literally and figuratively.

When Dr S confessed that her problem might be “outside of his area of expertise” I wasn’t happy that he didn’t have a solution to the problem but I was impressed with his honesty and humility. While I find doctors to be honest I’ve seen more hubris than humility from most.

He suggested that she might need to consult a neuro-opthamalogist to determine if there was a problem between the optic nerve and the brain.

After finishing up my copious note taking I told him that she already had an appointment to see her Neurologist, Dr A next.

He asked who her General Practioner was, recognized the name and said that he would confer with him as well as the Neurologist.

“We’ll take it from there” were his parting words as he offered us his hand but no solution before saying goodbye.

We left his office knowing no more than when we first arrived but after hearing how long it took us to get an appointment Doctor S said that they were upgrading her chart to “priority” (kinda like being bumped unexpectedly to Business Class from Coach).

I walked out feeling as if he was either trying to express some sense of urgency for her condition or that it was just some bullshit gesture for a flight (diagnosis) delayed.

Miss Cathy has left the building: Pt l

Posted in April by

This morning a woman that I could hardly recognize greeted me at my door.

“Can you help me find my pants?” She said as she started to put the yellow tee shirt in her hands on as if they were trousers.

Today was the second morning in a row that Miss Cathy was having this particular problem.

Even after I pointed out the obvious to her she didn’t really seem to comprehend what I was saying.

“What is that in your hands?” I asked, ” No……..don’t try to your leg through it, just tell me what it is.”

“This?” she said holding up the tee as if it were something new that she’d discovered, “It’s a shirt.”

“Right… and we put shirts on to cover up our tops and pants to cover our bottoms. So where does the shirt go?”

“On top.”

“Exactly! Only let me find you a fresh one”, I said getting up and rubbing the sleep out of my eyes. “I think it’s time we gave that one a break for awhile.”

She went to her room and sat on her bed to put on the blue top that I found on a pile of clean clothes near her bed looking perplexed. She said that she still didn’t know where her pants were as she started to pull at one of the other tops (in yet another pile) on her bed.

“Are these them?”

Into the breach once more to discuss breeches (what was and what wasn’t).

I rummaged round in her closet and finally located a pair of lightweight pants appropriate enough for her to wear during the unusually warm weather we’re having (94 degrees in April).

I also made a mental note to block out some time (soon) to clean her out her closet; I couldn’t believe how much of her clothes were scattered on the floor, the clothes were strewn about like something out of the mind of a heroin addict.

I looked back to see what progress she’d made dressing only to see that she was laying back in bed with the sheet pulled up around her shoulders saying she was tired as if she’d just worked a long hard day and it was bedtime.

Clearly, the ‘pant/shirt’ lesson had exhausted her but I had to remind her that it was only 8:30 in the morning and she needed to get up, have some breakfast and take her meds.

Before she’d agree to get out of bed she looked up at me and asked, “What’s wrong with me?”

“You have Alzheimer’s.”

The other #”F” word: Pt lll

Posted in April by

Back in 2010 when it was discovered that Miss Cathy had first stage Dementia with an Alzheimer’s diagnosis, I asked Dr Alemayehu, her neurologist what to expect.

He said something to the effect that “each patient is different and their mental faculties diminish differently at varying rates, some deteriorate rapidly while others can remain relatedly stable for years ”. What I remember most clearly was that he sounded about as matter of fact and dry as if he were talking about actuarial tables.

He couldn’t and wouldn’t give me a timetable for progression of the disease (and rightly so). The control freak and planner in me would just have to sit tight.

As my mother used to say, “You can’t set your clock by crazy”.

It was going to be a game of ‘hurry up and wait” (for what who knew and how much care she’d need was a question mark). There’s not much one can do to prepare except avail oneself of books, support groups, websites, et al so that’s what I’ve been doing.

Then, that day not long ago, the clock chimed ‘Koo-coo” and the alarm bells in my head went off, time to put all that ‘book learnin’ and research’ to use.

The slide downward had begun again and it was obvious that the doctor was right; her disease was just on holiday….much like I was.

It’s not like I thought there was a “sell-by” date on Miss Cathy’s sanity but I couldn’t help but be surprised when the time came and things started to change.

I found that I’d started to live day to day much like the characters in the movie “Groundhog Day”, on a calendar that doesn’t change and if/when it does its only toward a future grounded in the past.

I’ve also realized that caregiving is a marathon and not a sprint.

Unlike a disease where you can have a nice hospital stay where friends and family can come visit to feel better about themselves (in-patient treatment for Alzheimer’s is few and far in between-and are usually the result of a fall or some other by-product of the disease) or get an operation for a cure (there isn’t one) or take a pill to put your illness in remission (it doesn’t exist).

So, it’s not about the ‘quick fix’ because there isn’t one, buying a helium “get well soon” balloon is well intended but not what’s needed to tend to your loved one’s well being.

It’s about living close (or in close proximity) and day to day care, teaching the same things over and over, aiding and guiding your loved one through simple tasks that they’ve performed thousands of times before but now are as foreign to them as you will one day become.

It’s also about being available 24/7 for comforting and empathizing, explaining the same questions and correcting the same mistakes again and again, day after day, after day.

So, Miss Cathy and I are joined, hand in hand, walking through the valley of the shadow of decline.

For her, the loved one, the one with Alzheimer’s, her “F” word may be “Forgetting” and, for me, the caregiver, the one that has chosen this journey my “F” word may be “Frustrating”.

But, at the end of a long day, when your loved one is tucked away, and there is peace and quiet in the home, one might just think of the other “F” word……“Faith”…….faith in the knowledge that tomorrow is a new day, and with your loved one, a new chance wipe the slate clean and to start again.

Postscript: Since this posting Miss Cathy has undergone an MRI (which was non conclusive) and is scheduled or an MRA and a Diabetic Retinopathy while her ‘team’ continues to find an answer for her sudden loss of vision.

The other #”F” word: Part ll

Posted in April by

It’s common knowledge that “forgetfulness” is part and parcel of an Alzheimer’s diagnosis.

I’m finding that the collateral damage; anxiety, fear and depression (to name a few) that accompanies the “when”, “what” and “how much” Miss Cathy forgets to be very debilitating as the disease progresses.

The “When” took me quite by surprise because we hadn’t had an incident (or much of one) for quite a while then (seemingly) overnight things were different.

I was in a place where I started to second-guess (again) her diagnosis and wonder “why am I here?” because she seemed to be doing so well…..and for such a long period of time.

The “What” that was confusing her wasn’t just that she suddenly couldn’t remember things; she told me that she was having trouble ‘seeing’ as well.

To hear her explain it, the letters and numbers on the remote, telephone and alarm system weren’t just indecipherable; they seemed to be “moving” too.

Logic and reason did little to help her ‘see’ past what appeared to be true to her eyes.

I tried to reassure her that I was not being dismissive of what she saw. What troubled me was that she so readily accepted her new reality.

I was trying to get her to realize that regardless of what she was ‘seeing’ she should have been able to deduce that buttons do not ‘move’ and numbers do not ‘float’.

“Nope”, she said, “I understand what you’re saying, it just seems to me that my brain just doesn’t work that way.”

So, she would stare at imaginary moving numbers and push at buttons that weren’t where they were supposes to be.

“How much” she forgets and the price she pays for the loss varies from day to day; laboring over changing channels on the television or contacting someone on the phone (and being unsuccessful more often than not) she is absolutely spent, angry and/or highly agitated.

After one or more of these episodes I’ve watched as she toddles off to her bedroom to lie down, as quiet as a child in a ‘time out’, life punishing her for something she doesn’t understand that she didn’t do and is not her fault.

The other #”F” word: Part l

Posted in April by

“Well!”, Miss Cathy said.

I could hear her voice as she walked closer to where I was working in my room from where she had been in the ‘Living’.

“I fucked up the TV again!”

And sure enough, upon closer inspection I could see that the TV screen was blue where there should have been the antiseptic smile of Bob Eubanks, Dick Clark or some other (g)host from the GameShow Network that she watched at that time of day.

She had somehow hit a combination of buttons on the remote that switched the TV to “Video” mode and had no idea how to get it back.

I’d been home just a day or two from a short trip to NYC when Miss Cathy first “forgot” how to use the remote. Then the next morning she had trouble disabling the security system and problems with the telephone; each day seemed to bring more memory lapse and confusion.

Part of me couldn’t help but note that she presented with these new challenges after I’d been gone for a while and before I was scheduled to go away again……..was…is there a connection?

Part of what keeps a person with Alzheimer’s stable (though there is no guarantee) is to feel safe in their surroundings, continuity and routine.

Had I triggered this step back to her future by going away?