A Caregiver’s Online Guide: TyTips on how to care for your loved one: Pt. ll

4) Don’t ask your loved one to do something that you know they cannot do:

Sometimes we think that a loved one is being ‘lazy’ or not living up to their potential but the reality is that when you see that they are struggling to perform a task (that was previously not a challenge to them) it may be a sign that their disease is progressing, instead of insisting that they ‘can’ do whatever it is that they cannot, accept this as fact and move on

Do not berate them or think that you can turn this into a ‘teaching moment’, in most cases this exercise will only end in their frustration and your anger and disappointment

5) Find a space that is yours:

It’s important to have a room or place where you can go to relax, unwind or decompress from the stress of caring for a loved one

It’s important to create a space that is yours alone to retreat to is yours alone

6) Say good-bye to ‘who’ they used to be and hello to the person they are now:

Trying to get your loved one to ‘act’ or ‘react’ the why they did before they started on the spiral down into dementia is futile

Make peace with the person they are ‘now’ and adjust your expectations and requirements accordingly

Best to mourn the loss of who they used to be and be grateful for the moments when there is a flicker of their former selves

7) Keep to your schedule:

Loved ones with dementia respond well to structure and routine

Do your best to be consistent in your actions and deeds

(For example:

If you say you will take them somewhere at a specific time-do not be late!

If they are used to bath time being at 7 pm-don’t start turn on the shower at 7:30pm!

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience


Hair today, (not) washed tomorrow: Pt. l

I’ve found that some of the most combustible exchanges with the loved one in my charge revolve around hygiene.

You’d expect this to be true if it were a child in my care but I’m referring to the seventy-five (going on five) year old Miss Cathy.

Since becoming my mother’s caregiver 3+ years ago we’ve clashed over many things; cooking (she shouldn’t) exercise (she should) and various and sundry other issues but none seem to bubble over the side of the tub of reason and burst into an argument the way the topic of bathing and washing her hair do (does).

I’m not sure if it’s the reversal of roles, the child now parenting the parent or embarrassment; although after wiping your parents’ rear after helping them in the bathroom you’d think that ship had long since sailed.

Believe me, it’s not that I want to be the “bath bully” anymore than I want to be on “poo patrol” but Alzheimer’s isn’t just about reminding your loved one where they put their favorite blouse.

It can start off that way, all clean and innocent; a misplaced book here, a forgotten appointment there, and if that’s where you are in the disease with your loved one…enjoy!

In time you will look back on all the frustration and change you faced during the first stage of the diagnosis and realize that those were the “Halcyon days”.

As for my current dilemma I am at a quandary as to what I should do; ‘rinse’ (leave her alone) or ‘repeat’ (continue to motivate her to be better).

Sure, it would be ‘easy’ to let Miss Cathy have her way and just open a window while she sat around in her own funk, and look away as she scratched at Lord knows what could be marinating in her unwashed coif but who said any of this was going to be easy? And if they did-nobody said it to me.

Besides, what kind of caregiver would I be, let alone son to a mother he purports to care about if I didn’t do those things that were uncomfortable (for me) and maddening (for her) but ultimately in the best interest of my loved one.

So, I refuse to let her standards of hygiene slip (ones she instilled in me, by the way) even if she’s forgotten them.

If I can’t get her to “wash yo ass” as she so often (and not so delicately) barked at my brother and me to do when we were growing up then at least I could try to get her to wash her hair more often (‘often’ being a relative term and our current bone of contention).

Hair today-the rest of the body tomorrow……

“Sometimes you can’t see the forest for the fire”

We’ve arrived at the place where simple things are becoming difficult. We no longer live on easy street where weeks go by without a visit from signs of dementia.

Where it was once a ‘some-time’ thing, now Alzheimer’s has come to take up part-time residence.

Who’s to say how many years Miss Cathy has before she lives in a permanent state of confusion.

Three years ago, long before mom’s recent decline but sometime soon after she was first diagnosed I advised her to prepare for this day (or something much like it).

I suggested that she write down lists of contacts; names and addresses of all the people (friends and family) that she talked to on a regular basis as well as her favorite TV shows; the times and channels so that she would have them for easy reference later on when her memory failed and she’d forgotten all things familiar.

I also suggested (while she was still ‘sharp’ and more or less ‘herself’) that she make a point of flexing her mind ‘muscle’ and practice crosswords or put a jigsaw puzzle together, anything that would help her mind stay active instead of just sitting in front of the television hour upon hour, day in and day out then laying in bed for the rest of the evening, letting her intellect go soft.

She had other ideas of course, as is the case with most people who are in denial and not ready to accept what lies ahead, she let my ‘suggestions’ go in one ear and out the other.

My fear was that Miss Cathy’s mind was getting soft but her head was hard and she did what she’d always done, which was exactly what she wanted, regardless of anything I or her doctors’ advised.

So, she did very little to prepare for today and today (as has been true every other day for the last several months) she cannot read a page on a book, dial a number on the telephone (usually connecting with the wrong person at the wrong number) and gets confused by the everyday routines and objects that should be as familiar to her as the nose on her face.

Today she retains less and less new information and the old knowledge she once possessed is harder to grasp.

And since she never bothered to write down the things I asked for I’ve had to become somewhat of a Sherlock Holmes to decipher “who” she intends to call, “what” she’s searching for and “where” her favorite programs are on TV.
(I’ve since started compiling some lists of my own (of Miss Cathy’s social life) to go along with my medical notes).

When these new challenges first presented themselves I tried to get her to use sense memory instead of sight or other ‘tricks’ to help her navigate through her day or operate familiar things but she was quick to anger.

“I done told you I can’t see, I don’t know when you people are going to understand that I can’t see anything!”

“You people?”

So now I’m part of the preverbal you people and she can’t see that I’m the one person by side supporting her on a daily basis.

No matter, she can’t see the irony that her protests are just validating what I was trying to get her to ‘see’ but I can.

Oh well, like Miss Cathy is want to say, “Sometimes you can’t see the forest for the fire.”

The Group: Pt. Xl

The facilitator said, “All of you as caregivers have to remember that your loved one’s brains aren’t functioning the way they used to so they’re scared and confused half the time by the world around them, sometimes they don’t even know why they’re scared-they just are.”

“So, it might not seem like there’s a reason to you”, she said to *Jane, ”but your husband is fighting against something that is very real to him. He just might not be able to articulate it.”

“That could be part of the reason your husband is lashing out.”

Like Jane, I sat back and let the words wash over me, drinking in the notion that Miss Cathy, like Jane’s husband, isn’t ornery just for the sake of being a bitch, she’s probably afraid and anger is the only emotion she can access.

There aren’t any little children running around our place like there is at Jane’s but I could relate to her dilemma when confronted with giving her husband choices.

Like Jane’s husband, my mom becomes overwhelmed in the face of what seems to me to be simple, ordinary choices but it’s gotten harder and harder (and more and more volatile) when it comes time for Miss Cathy to make decisions, so I made a mental note to whittle her options from “alot” down to two or none whenever possible.

The facilitator suggested that we always ‘check’ ourselves before we engage with our loved one (especially if they are having a bad day) and to never argue with them.

“You will never ‘win’ a battle with someone with dementia so why try, “ she said, “and do not try to engage them if you are angry yourself.”

I was reminded of a concept I learned in a 12-step program years ago when dealing with my own struggles.

It’s called “HALT” and it’s an acronym to remind oneself to stop and ask ourselves if we are “Hungry, Angry, Lonely, or Tired” before we put ourselves in the path of conflict.

And if in going down that mental check list we were to discover that we were one (or more) of those things then we should take care of ourselves first and then engage with the situation or another person.

Remember, even flight attendants advise that you “put the oxygen mask on yourself first and then on a (small) loved one in your care.”

* Names, characteristics and descriptions of people that I’ve met along my journey have been altered or changed to protect their privacy.

#CommonSense….anybody got change?

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.

Another day, another Doctor: Pt. ll

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.

Calculating Cutlery: Pt. lll

I’ve always thought that if Miss Cathy won’t do the things recommended (by doctors, specialists, social workers and mental-health care professionals) to keep her mentally challenged (things like crosswords puzzles, reading, exercising, socializing, or knitting) then she could at least be conscientious of keeping her surroundings organized and clean.

So, putting away the silverware and keeping the drawer organized seemed like a no-brainer to me when it came to keeping her brain stimulated.

One day I asked Miss Cathy to join me in the kitchen for a little tete a tete and quickly realized after watching her struggle that there was more at play then simple indifference to order.

She stood there trying her best to correctly place a spoon in it’s proper place in the drawer and to stand on her feet, laboring the entire time to do both.

After five minutes I simply couldn’t take it anymore and put an end to the task.

The fact that she has so much trouble standing is an unfortunate but direct result of her lack of exercise (the blame for which I lay at the feet she can’t support herself up on for very long) but that’s her choice and I learned long ago to pick my battles (after losing that one).

But her inability to distinguish what goes where and how to get it there in the cutlery drawer is something that she has little to no control over.

Miss Cathy’s brain isn’t firing off the neurons or whatever it is that fuels her ability to problem solve, and as we discovered after consulting several doctors, her brain is also playing tricks with her eyes.

And when she’s having one of those bad days it can affect everything from forgetting how to perform simple tasks, mood swings, to asking me the same question over and over again.

So, now that I know all of this I just remind her from time to time to be conscious of what she’s doing (whether it’s replacing the cutlery, her posture, hygiene or any number of little things) and she either responds or not.

Alzheimer’s is not only about keeping your loved one safe; it’s about learning to respect their limits and boundaries.

And it’s been important to learn that her mood swings, depression and confusion come and go, the same as her ability to put away the silverware.
I always thought that if Miss Cathy could stay ‘aware’ of the little things then one day the big things won’t be as daunting…or so I hope anyway.

As for the cutlery drawer, it’s become more than a place to retrieve eating utensils; it’s a Rochard test, a crystal ball, tea leaves at the bottom of an empty cup whose chaos or order is a glimmer into the mind of Miss Cathy.

Calculating Cutlery: Pt l

As any good caregiver will tell you, you quickly develop a second sense of your loved one’s state of mind after witnessing Alzheimer’s day in and day out.

You don’t have to be clairvoyant-just observant.

For example, I’ve learned that I can tell what sort of day I’m in for simply by looking into the cutlery drawer.

If, when I awake and go into the kitchen to make my coffee and look and see that the knives and forks are still in their respective slots in the tray (that I’ve returned them to the night before when I put away the dishes) then it’s probably going to be an easy day, a day where Miss Cathy is more or less self sufficient and not much is asked of me.

But, if I see that there is chaos and anarchy in the drawer; spoons and forks co-habitating and butter and steak knives fighting to occupy the same space then that’s a pretty good indicator that it’s going to be a long, long day.

At first I thought she was just ‘in a rush’ or ‘not paying attention’ and when I asked her about the mismatched cutlery she said she was “just being lazy” and would do better.

She was true to her word for a time but then she’d go back to making a mess.

This back and forth, with me playing “fork police” and Miss Cathy the “perp” went on for quite awhile. To the average person this may seem like ‘no big deal’ but caregivers get what I’m going on about.

It’s not the ‘mess’ (and no, I’m not comparing myself to Joan Crawford, as she was presented to the world by her victim-I mean ‘daughter’, Christina Crawford in the early 80’s biography and later cult classic “Mommie Dearest”, who happened to clean compulsively (usually three sheets to the wind) and clarify to her daughter after she’d dragged her out of bed in the middle of the night to help her clean that she wasn’t mad at ‘her’ (Christina) but that she was mad at the ‘dirt’).

No, this wasn’t about the mess, it was about trying to get a loved one with Alzheimer’s to try to ‘remember’ what they’d committed to doing and following through on a daily basis.

So, I try to use every little action or activity as a potential ‘teaching moment’ to help Miss Cathy learn to strengthen her memory muscle and challenge herself not to become mentally complacent.



(In)Dependence Day

The snap, crackle and popularity of fireworks going off a night early here in the suburbs on the 3rd (and very little activity on the actual holiday which is strange) put me off my game and cereal when I awoke on Independence Day.

So, it would seem only fitting that I should walk into the living room and find that mom had already worked herself up about the “state of dependence” she (thinks) she’s found herself in (once again).

We’ve come to that place (once again) where Miss Cathy is in a state of denial, or should I say she’s remembering that she’s in denial about having Alzheimer’s since the last time when she must have forgotten that she’d reconciled herself to accepting her condition.

I spent the better part of my morning explaining to her (once again) what her diagnosis means and what the definition of dementia is.

What fun….all this while my head throbbed from all those damn fireworks blasting into my dreams the night before.

(Question: why does all the drama seem to greet me in the a.m.?…Possible answer: maybe it’s because Miss Cathy sleeps (on average) fourteen (or more) hours a day so she’s razor sharp in the post dawn and ready to rumble, as long as it’s before lunch when she’s about to tumble back into bed for the day)

So I stood behind a wingback chair (why I didn’t just sit down I don’t know, maybe I thought by standing the conversation would feel as if it wasn’t going to drag on for hours, or maybe I needed some barrier between me and her denial).

No matter, here’s a sample from her “Greatest Hits of Denial”:

1) She still doesn’t think she has Alzheimer’s:

Her new neurologist mentioned “no one with dementia could have passed the test he performed in his office”
(I tried to explain that she’s just one of those people that gave ‘good test’ but it’s her day to day life that she’s trying to put her tee-shirt on as pants and the doctors aren’t testing her for that, and it’s not like she offers up relevant information like that when they doctors ask her “what brought you in today?” her response is to talk about here knee usually, so its up to me to fill them in on herstory)

2) She can’t accept that because she has Alzheimer’s that she’s a danger to herself and others:

She’s bemoaning the fact that she can’t drive anymore which she immediately equates to her ‘loss of freedom”
(I reminded her, in no uncertain terms, that if she can’t see clearly or have the cognitive skills to put the silverware back in the drawer correctly then how the hell does she think she should ever be in the driver’s seat of a car…ever again)

3) She can’t accept that since she’s a danger to herself that she cannot live alone:

She says she feels like a prisoner
(I told her that it seems to me that she’s in a prison of her own design; that there are plenty of people in the world, her age and older that take the bus, hail a cab, or call a friend to get them anywhere they want to go. Besides, she has me as a personal chauffeur to drive here around. So, if she wants to sit on her ass in her condo that’s her choice and her’s alone)

And on and on it went, listening to her tilt at imaginary obstacles to happiness Miss Cathy reminded me of Don Quixote, but instead of chasing after windmills she’s searching for a prognosis that she’s been misdiagnosed and she can get back to the life she led before.

So, long before night would fall and the rest of America would rise to set off fireworks in celebration of the nation’s birthday I could already see the bombs bursting in air (in my mind’s eye actually) as I settled in for a conversation about (in)dependence.

Happy fucking Fourth of July to me!

Physician, Heal Thyself: Pt.Ve

Miss Cathy sat in the chair in the examination room and (for once) just listened (instead of interjecting herself into the conversation) as Dr GG and I squared off.

To be fair, we were talking about her just not to her, an unenviable position I’m sure but it’s more efficient for me to speak on her behalf (as it would be for any caregiver) than for the doctor to play twenty questions with the patient and have to try to interpret every answer for truthfulness and accuracy.

It wasn’t that the doctor and I were at odds, or having a disagreement really, we’d been in synch pretty much from the minute he walked in the room, it was only when I tried (and I knew better but couldn’t help myself) to get him to talk ‘smack’ about another doctor that I hit the ‘White wall’.

So, it was just a matter of me not having the energy to read between lines any more than mom could read the large capital letters projected on the wall that caused a kerfuffle.

I shouldn’t have tried to pit one doctor against another, but (after being exposed to a doctor that knew what he was doing) I didn’t need Dr GG to corroborate my suspicions.

I knew that it was time to bid adieu to Dr A and his fawning ways.

It was one thing to keep my opinions about Dr A to myself (or try to anyway) when her condition was more or less stable and quite another when she needed more than just someone holding her hand and calling her ‘mom’.

By the time we left his office alittle while later Dr GG had concluded that there was a possibility that mom’s confusion and loss of eyesight might be related to her Alzheimer’s but he couldn’t be sure.

He also suggested that we seek a second opinion from a Dementia Specialist (a ‘specialty’ that I did not know existed until he explained it all to me and it makes sense given the rise in diagnosis each year) and he said that he would consult with a colleague to get me some names of someone we could see.

It’s funny, all this time I thought I was doing the right thing by taking mom to a ‘neurologist’ but now I was wondering if I’d dropped the ball wasting my time on the ‘GP’ of the brain when there was someone out there skilled in her disease specifically….I felt like a yutz.

They say ‘hindsight is 20/20’ which Miss Cathy no longer had so I guess it’s better to look forward than back.

Before I could fall too far down the rabbit hole of ineffectiveness Dr GG (true to his word) emailed me a few days after our visit with the contact information of a prominent doctor that specialized in Dementia who headed a top University clinic not far from us in the Nation’s Capital.

Dr GG wrote that there were only a few Dementia Specialist in the country so I should be aware that the demand to see this doctor was high and that he rarely took on new patients.

Sounded like a challenge and if it was, I was up for it.