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.