Tag Archives: Life

The Group: Pt. l

Posted in September by

I knew pretty much from the start that I was in over my head with this whole ‘caregiver’ business.

But I’d made a promise to myself that I would take care of my mother and see to it that she could stay in her own home until her dementia progressed to the point where it didn’t really matter where she lived (because she’d forgotten her surroundings) or that I could no longer keep her safe and care for her.

It was a tall order (for sure) and my heart was in the right place (of course).

It seemed that almost overnight I’d gone from years of just caring for (and about) myself to committing to what could be (and has turned out to be) years of caring for someone else.

I knew I needed to gather the proper tools to help me in my new role and time to adjust to my new life.

One of the tools available to me was Alz.org; the National Alzheimer’s Organization with local chapters that puts family, friends, and those diagnosed with the disease in touch with information and services close to home that can help as they and their loved ones deal with their diagnosis.

They turned out to be a wonderful resource for me.

I logged onto the site often (or called the local chapter) for answers to questions, referrals to doctors and lawyers; whatever I needed they seemed to have.

They even had a ‘hot line’ that provided someone to talk to when all you needed was someone to listen.

But, the longer I was here, finally comfortable in my role as caregiver, providing Miss Cathy with all that she needed, the more I realized that ‘I’ needed ‘more’, that what I was at a place where I wanted to “not feel so alone” in my life and the choice that I made to care.

Going through all of this alone was proving to be as challenging as caring for Miss Cathy, as time went by I found the weight of going through this experience by myself almost too much to bear.

What I realized (and was surprised by) was the fact that the process of caring for and watching a loved one lose themselves to a disease (that is ever changing and ever demanding) is just as hard on those of us that bear witness as caregivers as it is to the person afflicted (different of course, but just as difficult).

It was time for the caregiver to seek out some care.

#CommonSense….anybody got change?

Posted in September by

One day Miss Cathy was trying (unsuccessfully) to perform some ‘everyday’ task so I went over to help and to talk about her mounting frustrations.

I suggested that instead of getting all Meta and complicating what (is usually) an easy problem to solve that she (first) calm down, take a breath and use “common sense”.

“Thanks the problem”, she lamented.

“I haven’t got any.”

“My parents were illiterate and they never taught us anything. They never took the time to explain anything to us. That’s why I could never put two and two together.”

I could hear the contempt in her voice, for opportunities missed and a childhood best forgotten. Unfortunately her dementia (for now) only affects her short-term memory, leaving old hurts and memories very much intact.

But, before she could embark on the oft-told tale of her upbringing (one that I’d heard and knew all too well) I reeled that boat back to shore and refocused the conversation on the “here and now” before she set sail on those troubled waters.

“Common sense”, I said, “is a way of saying that there is a certain amount of knowledge that most people take for granted that we all share…’common’….meaning ‘everyone’…and ‘sense’ …meaning ‘things’ that we all probably know”.

“It’s not about intelligence or ‘book’ knowledge and what you’ve learned so much as it’s about trusting your instincts to tell you what to do.”

I told her that Alzheimer’s had nothing to do with her parents; what “Mama did” and “Daddy didn’t” doesn’t matter a whole helluva lot anymore.

She listened (she usually listens) and this is where I have to admit that she’s a pretty good listener (which is not to be confused with comprehending).

As soon as I finished talking I realized that what I was asking of her was probably unfair.

What might ‘make sense’ and ‘sound reasonable’ to me (or anyone else without Alzheimer’s) is quite different from what a loved one with the disease ‘hears’ or comprehends.

I was asking a person with diminished reasoning and cognitive issues to ‘think’ differently.

So, in the end, I realized after talking to her that it’s probably best if I’m the one to change-my expectations if not my approach.

75 going on 7: Pt. ll

Posted in September by

I walk barefoot whenever I’m inside so I can usually ‘feel’ before I ‘see’ crumps or other debris underfoot, a tactile reminder that I have to be on the lookout ‘below’ as well as on ‘top’ of surfaces, you never really know when/where Miss Cathy might make a ‘deposit’.

Not to long ago I walked into the kitchen and there were ‘mystery’ spots all over the floor, it looked like the floor had broken out in measles. Granted the linoleum is old but I wasn’t expecting it to visually discolor as if it were disintegrating right before my eyes.

After some sleuthing I deduced that it wasn’t the flooring that was causing the discoloration, turns out Miss Cathy had been spilling instant coffee flakes whenever she made her cup of coffee, sprinkling the floor till it looked like brown colored confetti.

To her credit she will try her best to clean up her mess and I applaud the effort but unfortunately (sometimes but not always) leaving a bigger mess for me to come in after her ‘cleaning’ to ‘clean’.

Other times she’s blissfully unaware, moving from room to room, leaving behind one stain (spill or trail of crumbs) after the next; on countertops, carpet, floor or furniture, wherever she happens to be, there’s usually evidence that she’s been there.

Usually I clean up behind her, sometimes during the day but more often than not after she’s gone to bed and I can take my time in the quiet of the evening to cook, clean, get her meds ready and prepare the apartment for the next day.

Since I’ve never been a parent I find myself in a quandary as to what my reaction should be; should I just ignore the incidents or bring them to her attention as they occur, but if I do then what? And for what purpose?

Should I use those instances as a ‘teaching moment’? Should I take the time to show where she’s erred and/or how she might have gone about solving the problem or using a better solution to clean what’s been dirtied?

But, (selfishly I have to think about myself here) would making her aware of her actions just increase my frustration because lets face it, once the ‘moment’ has passed she’ll just forget till the next time and I’ll be explaining the same thing to her again (leaving me to feel like Bill Murray in the movie “Groundhog Day”).

Her reactions vary whenever I bring a spill or stain to her attention (much the way a child would react come to think of it), sometimes she’s surprised, other times she’s disbelieving that she could have been the culprit.

So, it’s a crap shoot whether or not she’ll take responsibility so ultimately it’s up to me to decide if I want to play a game of ‘there’s only tow people in this apartment and I know I didn’t do it so who might have spilled, stained, broken, smeared whatever, wherever’.

Is it to her benefit to know that she’s done something wrong (not ‘wrong’ as in ‘you stole a diamond necklace’ wrong, nothing on that scale but spilling coffee on the carpet isn’t exactly right either) or is it better (and more efficient) for me to leave her aware and just make things right?

I’m not looking to play a game of “gotcha” either; I’m just trying to navigate an age appropriate (and consistent) response to a loved one that’s (sometimes, because of her Alzheimer’s) acts like she’s seventy-five going on seven.

75 going on 7: Pt. l

Posted in September by

It is true that Miss Cathy is a septuagenarian but her behavior is (at times) more like that of a seven year old, due to the unfortunate fact of her Alzheimer’s.

And while Alzheimer’s (in and of itself) is hard enough to get used to, what with the short term memory loss and decreasing cognitive skills, I’m finding the act of ‘parenting a parent’ challenging since I’ve never had a child myself.

It’s not all bad, sometimes I look at her face after she’s correctly identified what time it is from a clock on the wall or figured out where the silverware goes and she has the joy and glee of a young person just discovering the world, finding happiness in the simplest of things that most adults would dismiss as irrelevant.

But, the quandary for me as a ‘new parent’ is what to do with her during those ‘other times’ (more often than not) when she’s less a ray of sunshine and more a downpour of chaos and frustration.

I mean, it’s not like I can put her in a ‘time out’, (1) she wouldn’t cooperate and b) what’s she gonna do sitting all alone in her room except forget why she’s been sent there in the first place.

It’s not as if she’s indifferent or doesn’t ‘try’ to clean, she does (mostly) but sometimes her ‘cleaning’ leaves a bigger mess than was there originally.

So, whether it’s peanut butter fingerprints on the stainless steel refrigerator door handles or strawberry juice from cutting up the fruit on the Formica countertops there is always some sticky surface to clean.

Her actions are well intended, and it’s obvious that she’s unaware of some the mess(es) she makes but like most children her ability to properly follow through outweighs her desire to perform if/when she tries to clean up after herself.

I vacillate between being super supportive (“Good effort”) to mildly critical (“You’re using the wrong product to clean up that stain”), it’s a balancing act, and I know from watching movies and friends with kids that consistency is the key but who knew it would be so hard to unlock.

There are times when I envy (the fictional) Maria from “The Sound of Music”, all she had to do to keep her brood of Von Trapps in line was to sing, “Doe a deer, a female deer”, they knew their wrong from Reich.

I only have one (very real) charge and it’s all I can do in a day to carry out the garbage let alone a tune.

Besides, my hills would be alive with the sound of screaming from a day of constant cleaning.

…”That’s what I’m here for”

Posted in August by

“Can you come here for a minute?” Miss Cathy called out the familiar refrain.

I’ve heard that phrase as a preface to many a request in the last three years.

“Can you help me hook my bra, I can’t seem to get it on.” (Which usually means it was on backwards, inside out or both and is followed with a litany of expletives of how much she’s always hated being ‘busty’)

“What day is it?” (She asks this almost daily now, which is understandable for someone (anyone really) who doesn’t have a job, deadlines or have to rely on a schedule or clock any longer. But what I find troubling is that there are days when it’s after dark and she can’t distinguish whether it’s day or night)

“How much is four times twenty?” (This usually happens when she’s trying to count money)

“I can’t find a can of soup in the pantry, can you look and see if we have any.” (The pantry is stocked full of canned, paper and other goods that she can never seem to ‘find’)

“This TV is messed up again, I can’t get it to work right.” (This usually means that she’s pushed the wrong button or any number of random buttons on the remote causing the TV to either shut off, switch to DVD, Video mode or have to reboot itself after so much activity)

“Did I take my medicine? Is it time for me to take my medicine?” (Since I’m in charge of dispensing her meds I can usually remember if she has and if not, looking at the weekly pill dispenser easily solves the problem)

“Can you dial (insert the relative or friend’s name here) for me?” (Unfortunately she lost the ability to remember telephone numbers she’s known by heart for decades along with the loss of her short-term memory)

And so on and so forth, that’s just a sampling of what she asks and what she needs, not all at the same time and not everyday (Thank God) but so goes the dialogue and familiar ways and days of living with Miss Cathy.

“Can you come here for a minute?” she’ll ask.

“Of course”, I reply, “that’s what I’m here for.”

Another day, another Doctor: Pt. Vl

Posted in August by

“That other doctor didn’t know what he was talking about”, Miss Cathy said, after Dr G decided to reject the suggestion of adding a statin to her daily medications.

“He was just generalizing, he didn’t know me.”

“Well, yes he did”, I piped in, not so much in support of the vascular surgeon she just saw so much as defending doctors in general.

I sat there feeling as if I was under attack for (“heaven for fend”) not only suggesting but also encouraging her to go the doctors and specialists we’d seen in the past several weeks and months-regardless of the outcome of their findings.

Believe me, I understood her frustration after schlepping to more than six doctors in a two week period with no hard diagnosis but what she couldn’t (or wouldn’t) appreciate was the fact that answers are not always guaranteed when you have questions for a doctor.

Sometimes they just ‘don’t know’ and the best they can advise is to monitor the situation or seek a second (or third) opinion.

“In Dr M’s defense”, I continued, ”He was just making a recommendation. He did say that the final determination would be up to Dr G so I wouldn’t just dismiss him. He was looking out for your best interest.”

“Yeah, well….”, she said dismissively, “I can understand that too but I don’t want to take anymore of that medication.”

“All dem pills!” began her familiar retort, followed by, “I don’t see why I have to take’m.”

And so the broken record continued…..

“I’m gonna die anyway, like everybody.” “Nobody is going to live forever.”

Apparently the good doctor and I were to be subjected to all her greatest hits.

Before my ears started to bleed I said, “Then stop taking all of them, don’t come to the doctor and you’ll be dead that much quicker.”

“Will that make you happy?” I asked, not quite rhetorically but not expecting an answer either.

“No, not all of it” she said thoughtfully, “I’ll take some of it, but not everything.”

“Well, actually, that’s the problem, you see, we’re here so the doctor can make the ‘call’ on the medications, it shouldn’t be up to you to decide what you take and don’t take.”

“What’s the point of having doctors if you’re not going to listen to them?”

My question evaporating into the sterile, antiseptic air in the examination room as Dr G closed his notepad, having already said that he wasn’t going to make any change in mom’s meds (or get in the middle of our “George and Martha” act) then got up to leave while Miss Cathy looked around, not for an answer but for her purse and cane before wobbling off to the phlebotomist.

And so ended the appointment, just “another day, another doctor”.

TyTip: Carry your own version of a “Cathy Clutch” (a tote bag filled with all of your loved one’s doctor’s files, paperwork, a notebook and pen for taking notes and film from any/all exams or tests, plus their identification, medical and insurance cards) to all of your doctor’s appointments, you’ll never know when you’ll need something!

TyTip too: Type up and print out a list of your loved one’s medications (be sure to include the dosage(s), what the medication are used for and what condition they are to treat) as well as medicines they might be allergic too

Your “Medications List” can be attached to medical forms and can also be handed directly to doctors and nurses who may inquire about your loved’ ones medications as well.

Having this document will save you a ton of time! Don’t forget to update your list whenever there is a change (addition or removal) of a medication or change in dosage

Another day, another Doctor: Pt. V

Posted in August by

“Yeah”, Miss Cathy said, agreeing with me as if I’d been serious when I’d said, “From your lips to God’s ear”, this in response to her saying that “I could die before her”.

”Nobody’s time is guaranteed in this life you know.”

She continued as if we were really having a conversation about mortality instead of verbally sparring with each other.

The fact that I’d just ‘wished’ an early death on myself to get away from her completely going over her head.

“You don’t have to be a certain age to die.” She said, quite please with herself, looking to the doctor for a visual ‘high five’ as if she’d just ‘nailed it’ with her observation.

Dr G was sitting between the two of us, poor man (Switzerland between France and Germany) awkwardly trying to find some neutral place to gaze upon.

“Oh my God!”, was all I could think. “Shoot me, shoot me now!”

“Mother” I interrupted her before she could continue gloating about the possibility of my early demise.

“I was being facetious.”

“You know what” Dr G said, having found a safe spot near the door to focus on, “I’m not getting in the middle of this one.”

Miss Cathy shrugged and changed the subject.

“How is my cholesterol count?” She queried, showing no signs that she’d forgotten the other subject at hand, which was whether or not to add a statin to her daily medications (which total 12 pills at last count…..8 in the morning and 4 at night).

“All medications have side effects you know.”

Dr G opened up what is turning into a volume of notes worthy of a JK Rowling’s novel and after a careful review said, “Last time we checked it wasn’t that bad at 218, which isn’t too bad, but the LDL was 107 which is spectacularly good…so on second thought I’m going to say ‘No’ to the Lipitor.”

“Her protected cholesterol is really so good that I don’t want to do it.” He said to me.

“Yes”, Miss Cathy said, as if she was being vindicated that she was right all along (when actually she wasn’t right so much as just argumentative and stubborn).

Another day, another Doctor: Pt. IV

Posted in August by

Squeezed onto a faux banquette that must have been intended for a toddler, I tried my best to sit quietly in the corner and not listen to Miss Cathy and Dr G debate the merits and side effects of statins, focusing instead on my ‘happy place’ (which at the moment was anywhere but there).

As part of my (self assigned) duties as ‘caregiver’ I’ve trained myself to be as unobtrusive as a butler (or how I’ve perceived one to be), fading into the background after I’ve chauffeured her to the appointed destination but available if need be.

I do this so that Miss Cathy can feel free to have whatever exchange she wants with whomever she’s meeting with, without a care or thought as to what I may think (and believe me, this works just fine for someone as self righteous and self absorbed as she is….she could give ‘two hoots’ what I think or how she’s being perceived…..I’m just saying).

I will say though, it’s hard to listen to the same questions and answers over and over.

But, they are her doctors; her meetings and appointments so the focus should be on her, I’m just the ‘transporter’.

And this works out just fine for the most part; at least it does on the days when she’s lucid, heaven help us all on the “off Alz days”.

I try, let me emphasize the word ‘try’; meaning I make and attempt or effort to do something (like keep my mouth shut), so my objective is to ‘try’ not to interject during Miss Cathy’s exchanges unless she’s misspoken or given the wrong answer to a question (and I do not hesitate to jump in when her health is at stake).

It’s my (self assigned job) to give factual answers and to fill in the background for whatever the doctor may have asked, hopefully without any sarcasm or added editorializing on my part.

But, it’s not easy to sit idly by when (I know) she’s fudging the facts (insinuating that she’s exercising when she’s not or being faithful to whatever she’s been told to do) or being obstinate (which is usually any statement that starts with “I’m not” doing, taking, making, reading, eating, or ingesting).

That’s when I have to take the “Hoke” hat off and put my caregiver bonnet on before my chauffeured ‘busy bee’ can verbally run too far afield.

“Why don’t you just give it a try”, I interjected, exasperated by all the pointless back and forth.

“We’re here after all, if all you’re going to do is question and then end up doing what you want to do anyway we could have just stayed home!” (Yeah, I know…not very ‘faded into the background’ of me)

“Yeah, well…what do you know, you’re just a layman, too!” she said.

“You’re not going to be the one taking the medication.” (Touché!)

“I know”, I said (and she was right)

“But I am your caregiver and I’m with you 24/7 so I can see the benefit of what you do and don’t do…what you take and don’t take.”

“Yeah well…” was her response, her voice trailing off in defensiveness.

“Whether you believe it or not, we’re all on your side here, nobody is trying to make you take anything that’s going to be harmful to you.”

“That may be, but what do you know”, she sneered, unaffected by my attempt at a kumbaya moment.

“Besides, nobody lives forever, you might drop dead before me.”

“From your lips to God’s ear”, I said.

Another day, another Doctor: Pt. lll

Posted in August by

One of the benefits of having Dr G as Miss Cathy’s Geriatrician is that it’s like ‘one stop shopping’ when we go to see him.

Whenever there is a problem or question (and mom has many) we see Dr G first, and if he doesn’t have the answers he’ll know the appropriate specialist who does.

Case in point, we were back after about a month (it felt like longer) of schlepping around from one new doctor to the next, to discuss their various findings.

The good news was that (other than not remembering what day it is) mom is basically ‘fine’ (a very subjective word these days but considering the alternatives, we’ll go with ‘fine’).

Dr K, her new neurologists, added Namenda to her daily medications, Namenda is a dementia drug that is thought to work well in conjunction with Aricept (which she’s been taking since her diagnosis in 2010) to help sustain memory and issues of confusion.

One of the other specialists she saw was Dr M, a vascular surgeon. I took Miss Cathy to see him regarding the five ‘episodes’ of fainting that’s she’d had over the course of the last three years to get to the root (hopefully) of why they were happening; was it a stroke? Were they seizures? Up till now nobody could say for certain.

He determined that the problem was not the blood flow to her corrated artery (so the ‘why’ and ‘how’ of the episodes is still unresolved but luckily there haven’t been any recently).

After his examination the doctor did recommended Lipitor or it’s generic equivalent to help reduce the possibility of a stroke given her age and all she’s been through.

As we sat with Dr G in one of the (very small, very cramped) examination rooms, he went over all the notes from the other doctors, the things put in place and their recommendations moving forward.

There was a little debate (more between Dr G and himself than with either of us) as to whether or not to put mom on the cholesterol-lowering drug.

Dr G said that while Lipitor is a valid recommendation his concern was Miss Cathy’s various other health conditions; diabetes, Alzheimer’s, high blood pressure and anxiety. So he wanted to be careful that any new drug introduced into her system wouldn’t have either a negative effect or counteract the effectiveness of a current medication.

It seemed at first that he was considering adding the ‘statin’ to mom’s meds and said as much.

Miss Cathy’s response was, “I don’t want to take that. I’m taking too many pills as it is.”

I sat in a corner of the room on what looked like a banquette built for a child or as an afterthought next to a small sink and supply cabinet. There was barely enough room to contain my ever expanding ass and irritation as I eavesdropped on their tête-à-tête.

Dr G smiled and said, “Of course that’s what you say about every one of these pills that we give you to take, so lets just consider this for a minute.”

‘Points’ for Dr G! It may not sound like much but that was one of the rare time that he didn’t just acquiesce to her protestations…..we might just be getting somewhere today.

The Meds discussed in this Blog Post were:

Aricept: is used to treat confusion (dementia) related to Alzheimer’s disease. It does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to function. This medication is an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain.

Namenda: is used to treat moderate to severe confusion (dementia) related to Alzheimer’s disease. It does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to perform daily functions. This medication works by blocking the action of a certain natural substance in the brain (glutamate) that is believed to be linked to symptoms of Alzheimer’s disease.

Lipitor: is used along with a proper diet to help lower “bad” cholesterol and fats (such as LDL, triglycerides) and raise “good” cholesterol (HDL) in the blood. It belongs to a group of drugs known as “statins.” It works by reducing the amount of cholesterol made by the liver. Lowering “bad” cholesterol and triglycerides and raising “good” cholesterol decreases the risk of heart disease and helps prevent strokes and heart attacks.

Another day, another Doctor: Pt. ll

Posted in August by

It was evident long before we got to Dr G’s by the way Miss Cathy was acting that it was going to be an ‘off’ day (and I didn’t need to check the cutlery drawer, either).

The ride to his office wasn’t so bad, no rumpling through her purse or rambling about the weather (and thanks to a slight increase in her Lexapro) she’s not as jumpy during the car ride-but that’s probably due more to the fact hat she’s being chauffeured around while she sits in the back seat like her fictional movie contemporary ‘Miss Daisy”.

Anyway, I noticed when we arrived that she was slower than usual getting out of the car, which is hard to imagine since she’s usually moving about as a fast as a turtle and just as interesting to watch.

So, instead of hanging back to see her wrestle with unbuckling the seatbelt I walked ahead, went into the doctor’s office, dropped my ‘Cathy Clutch’ on a chair, signed in for her, then went back to the door to see where she was (or if she was a heap of little old lady bits piled on the pavement).

When I cracked the door open I spied her about fifty feet away from the steps to the entrance at a turn in the sidewalk. For whatever reason she chose to (try) to walk around a garage can (placed near the edge of the sidewalk) by going ‘nearer’ the outside edge of the sidewalk where the concrete was cracked and the slabs were starting to separate exposing some of the sand foundation instead of walking toward the center where it was smooth and unobstructed…that’s “my” Miss Cathy, give her a choice and chances are this is what you’ll get-the road less travelled (because it’s usually under construction).

From the look on her face I could tell she was determined to navigate the crack (as well as the turn) in the sidewalk, the last time I saw her concentrating this hard she was at the ‘Live Casino’ pulling on a slot machine.

She always has her cane with her whenever we’re out in public (never uses it at home) because she’s afraid she’s going to fall.

She was picking at the sidewalk with it as if it (the sidewalk) was moving or there was a snake that she was trying to spike.

At the same time she was engaged in a sort of time lapsed back and forth with her feet, slowly lifting one then the other, tentatively reaching out with her foot before putting it down and starting over with the other in her attempt to move forward, brow furrowed, like a runner trying to navigate a hurdle that’s suddenly been raised on the track.

You might be wondering ‘Why didn’t I just go help her?” or for that matter, why didn’t I help her get out of the car?

Well, the simple truth is that she exercises (her body and her mind) so little that I feel I’d be doing her a disservice by stepping in to help (especially if she’s in a position to help herself).

And I do so much for her already that I have to be careful to draw a line somewhere before total dependence.

Besides, I always check to make sure she’s physically not in danger.

I’m like a parent hiding somewhere that their child can’t see but are able to watch as the young one (‘old one’ in my case) walk out into the world alone (or so they think), I’m there (just out of site) watching to see that she gets to where she’s going (safely) and I’m always there to lend a hand if she needs one.

And more often than not Miss Cathy, left to her own devices, has that steely determination, just like that athlete during a track and field event, to jump her hurdle(s) or in her case, ‘step over a crack in the sidewalk’ and finally cross the finish line, which that day happened to be four steps up to the physician’s door.