Tag Archives: tips for caring for a loved one with Alzheimers

The Group: Pt. Vlll

Posted in October by

*Jane (not her real name) had the full attention of everyone in the group so she continued her **‘share’.

“I’ve cooked breakfast for my husband everyday for forty years and I’ve always asked him what he wants to eat when he sits down at the table to read the paper in the mornings, but now he blows up if I ask him what kind of eggs he wants; oatmeal or cereal, fruit or coffeecake.”

“I used to love to have the grand kids over to spend the day with us but now they’re not in our house ten minutes, just being kids, laughing and running around and he starts yelling at them for no reason.”

“We have three grown kids, one lives out west and two are in the area but they won’t help, they don’t want to deal with him so they just don’t come visit anymore.”

Jane finished by looking down at the glasses hanging around her neck on a multi-colored jeweled silver chain, suddenly as quiet and still as she’d been vociferous and animated just moments before while she told her tale.

Almost instantly there were comments of support from the other members of the group, some were personal as it was obvious that they knew Jane outside of the group while others were more ‘general’ in what they had to say to her.

More than one person made note of the similarities to their own situations and offered sympathy (seemingly to her and by extension to themselves).

The facilitator listened to all that was said from around the room and then it was her turn.

The first thing she suggested (for Jane and everyone else in the room) was to put themselves in their loved one’s place and to imagine for a moment that ‘we’ were the ones with dementia, that ‘our’ whole lives had come undone (and we couldn’t understand why) and the world as we knew it was becoming a foreign place where once it had been home.

“What would that ‘feel’ like?” she asked. “Wouldn’t you be scared? Angry?”

Then she asked us to imagine what we might feel if things (activities, tasks, chores) that we used to do easily suddenly became difficult, our memory (of performing those ‘things’) no longer something we could depend on.

And where once we had been independent and strong we were suddenly dependent and weak because we didn’t understand ‘why’ the changes were happening or sometimes we might not recognize who our loved one was.
It was within this ‘mind-set’ that the facilitator wanted the group to place ourselves before she offered up a few suggestions.

* When anonymity is called for I do not use real names and sometimes alter descriptions to protect the identity and privacy of individuals that I come across in my journey

** A “Share” is a term used the world over by 12 Step and other Support Groups to describe a situation where a person has volunteered to speak openly, honestly and candidly about an issue, event, person or experience in their life

The Group: Pt. Vll

Posted in October by

By way of starting the meeting after all the ‘business and announcements’ had been taken care of, the facilitator looked around the table and asked if anyone had something they ‘really’ needed to share.

This could get interesting I thought as I relaxed and sat back in my chair; I felt as if I had popcorn and the feature film was just about to start after the previews.

I barely had time to guess who (if anyone) would speak when one of the older women sitting across from me spoke right up; she was not shy at all.

She introduced herself as *Jane (not her real name) and Jane was like a little spark plug all coiled and ready to ignite, as if she’d been waiting (however long it’d been since the last meeting) to get ‘something’ off her St Johns, knock-off twinset covered chest.

She looked to be seventy or so, somewhere in the same ballpark as Miss Cathy but with an obvious difference.

Jane was a petite woman, I’m sure her sensibly shod feet barely touched the floor (if at all) as she sat in the high backed office chair. She was very well put together; silver hair coiffed, ‘day’ make-up applied ‘just so’, she had the look of a ‘fighter’ about her, something that mom used to possess but with Alzheimer’s she’d lost that spirit somewhere along the road.

She shared about her loved one (more specifically, her husband) and his issues with anger; sudden and unexpected outbursts she said that were out of character for him and starting to scare her.

Jane said that she had known him most of her life, marrying when they were very young and that in all that time he’d never been violent or ill tempered, in fact, he was quite the opposite until he developed Alzheimer’s.

” I just don’t know what to do with him,” she said, confused because she wasn’t sure how to handle his newfound rage and worse still what she should expect next.

“I try to ask him why he’s so angry and it seems to me that just gets him more mad.”

“I’m convinced he doesn’t even know half the time.”

I found myself (unconsciously) nodding (along with some other heads I saw bobbing around the table as well) in recognition at the similarities to her story and mine )or ‘ours’ as it were).

Seems a lot of us could relate to what she was going through; her surprise, frustration, helplessness and fatigue.

The Group: Pt. Vl

Posted in September by

I thought about standing up and excusing myself from the meeting on the pretext of going to the restroom and not coming back, skipping out to the shopping mall across the highway for some retail therapy instead.

But, I stayed.

And soon enough the meeting got underway, so I was more or less compelled to remain (but I kept an eye peeled on the closed door across the room from where I sat to remind myself that it was there ‘just in case’ I wanted to fling it open and flee).

The meeting was led by a woman who introduced herself as a social worker and the founder of an “eldercare” management services company with a long history working in social services. I was impressed, with her credentials and by her calm, professional yet warm demeanor.

She told us (though clearly most of the women in the room were already familiar with the ‘rules’ so she was obviously speaking to the few of us that were ‘newbies’) that her function was to facilitate, answer any questions we might have but we shouldn’t be surprised that what we shared with each other was probably going to be more helpful than anything she might say.

She stressed that we should feel free to say whatever we needed to, that there was no judgment and that this was a safe place, we were reminded that anonymity was more or practiced and not to gossip about what we’d heard or “out” people if you saw them in public (it all sounded very much in the tradition of 12 steps meetings that have a saying, “What you hear here, stays here”).

The facilitator gave me the impression of someone who’s heard and seen it all, so whatever any of us could say would not be new to her.

She then outlined the structure and guidelines for the meeting so we’d know what to expect for the next hour and half before having each of us tell the group our names (first names mostly but for some reason when it was my turn I gave my surname as well, as if I were being interviewed for a job or something), we were also asked to state the relationship to the loved one we were caring for and their diagnosis.

I found her to be professional, yet personable enough so that someone like me, wound up tighter than a clock, could relax (a bit) and start to trust the process and the new people that surrounded me.

Sure enough, soon enough, I found myself more at ease; my flight instinct all but gone and my judgmental bullshit evaporating like the ‘hot air’ that it was.

The Group: Pt. lll

Posted in September by

Through Alz.org I found a list of support groups for caregivers in my area.

Thank God there’s a ‘support group’ for practically everything these days-even issues other than addiction (thank God for those, too).

We live in an age where if there’s “an app for that” (shopping, knowledge, games, fun, food or even sex) it’s comforting to know there’s a place where people with similar interests can gather in kind, “in the real world”.

I’m not a ‘people person’ by nature and even though my work life and career has put me in front of classrooms, crowds, on television and in front of lecterns, in my private life I am basically a loner and a little shy.

I do not seek out groups nor enjoy being part of a crowd.

I’m the type of guy who goes to matinees during the week to watch films when there’s the best chance of the theater being empty and I will get up and move to the farthest dark corner if too many people start to gather and sit near me (especially if there are plenty of seats elsewhere).

For some reason (which I find hard to fathom) people tend to clump together. I never understood this sort of behavior, nor is it my inclination.

I don’t know what that is, maybe it’s some sort of primal, instinctual ‘pack” mentality (that I obviously lack) that draws people toward one another in public spaces (a need to bond? for warmth? to feel safe?).

I do know that I generate enough heat to warm myself (too much in fact) and I’m a big enough guy that people might cross the street when they see me coming toward them on a dark night so I don’t need protecting.

Whatever leaning toward social ‘gathering’ I lack to be ‘up close and personal’ with folks, I am, at my most base level, a survivor so I have no problem seeking out my fellow man and/or woman when I’m in need of help.

As I’ve stumbled through life, with it’s many highs and lows, successes and challenges, I’ve learned that there are times when it’s better not to ‘go it alone’ and that asking for help is a sign of strength and not weakness.

It was to be my first meeting but I’m no stranger to support groups.

No, this was not my first time at the rodeo.

But, whatever other ‘groups’ I’ve attended are for another blog at another time.

Like the prayer that ends many a 12-step group meeting says, “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference”.

It’s with this in mind that I set out for my first “Caregiver” support group meeting.

The Group: Pt. ll

Posted in September by

As much as my brother and his family are ‘here for me’, and (on occasional) here to care for Miss Cathy, it’s still not the same.

Because they are not ‘here’ for the day in/day out, week in/week out events and changes (big and small) that string together to make a life (and when they ‘come to care’ whatever they experience or witness affects them differently because lets face it, they get to return to their own home and their own lives) so they can’t possible relate to the life that I live in a home that is not my own.

To be clear here, I’m just stating facts, not lodging a grievance. I signed up for who, what and where I am and do not regret any of it for a minute.

I just get lonely sometimes and wish there was someone to go through this experience with (other than Miss Cathy who, as the loved one with Alzheimer’s can’t be expected to do double duty as patient and pal).

As for the family, they call mom of course, to check on her and ask how she’s doing, but (unfortunately) it doesn’t seem to cross their mind to pick up the phone to check in on me.

So, after years of trying ‘this’ and doing ‘that’ to de-stress or re-relax, it got to a place (mentally and emotionally) for me where the isolation and “alone-ness” of it all was overwhelming. I needed more than just the occasional holiday or ‘day off’ to go out to a movie or dinner.

I knew that I needed to find someone I could talk to who could relate to what I was going through (which is a common lament among caregivers) other than bending the ear of friends far and near.

And friends, sympathetic though they may be, not being caregivers themselves, which I’m happy for them of course, still leaves me without someone to commiserate who’s going through the same thing and understands.

Sometimes, you just need someone to listen; no, more than listen, you need to be able to talk to someone who’s either walked in or is walking in your shoes and knows why at the end of the day you’re sore, can do no more but you do it anyway.

So, once again, I turned to Alz.org for help.

I knew that there were support groups out there, hell, I’d been advised to seek one out when this whole thing began but being the private (read-hardheaded) person that I am I thought I could ‘go it alone’ and apparently I succeeded because having ignored the advice to ask for help and seek out others for support, I am alone.

But, that was soon to change.

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. 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.

Another day, another Doctor: Pt. l

Posted in August by

Today was a day not unlike a lot of other days around here; get up, strategically try to time my entrance into the kitchen so that I can make my morning coffee (in peace and quiet before the deluge of chatter dominate my day), meet Miss Cathy in the living room to take her daily blood stik (since she has type 2 diabetes) turn on the TV for her (only if it’s a bad day and she’s forgotten how to operate the remote), then back into the kitchen to start breakfast.

But looking at the calendar on the wall across from the stove I could see that it was also a ‘Doctor Day’ so preparations (in addition to her daily routine) had to be made to get Miss Cathy out of the door and to her respective physician on time.

I would have to make sure that she was bathed, dressed and be prepared to answer whatever questions she’d have (usually the same ones she’d already asked but obviously forgotten) depending on who we were seeing and why we were going.

After weeks and months of specialist after specialist we were off to see her “Geriatrician” (think ‘Pediatrician’ for old people) who just ‘happens’ to be her primary care physician, Dr G.

It makes sense; she’s been going to Dr G for more than thirty years so if anybody knows her inside and out (literally and figuratively) it would be him.

I asked Dr G to take on the additional role so there’d be one doctor (and someone she’s comfortable with and can trust) that is sort of the ‘ring master’ of the circus of care.

In addition to being a ‘Doctor Day’ it was(unfortunately) a ‘running late’ day, too. For some reason mom was still in her room watching TV when we should have been getting into the car.

It still amazes me that for someone who asks what day and time her appointments are over and over, when the day arrives it’s a 50/50 chance whether or not she’ll be ready on time, running late, forget all together or sitting on the sofa, purse and cane in hand ready to go hours before we have to leave….guess with all those variables I should use different odds, oh well…back to getting Miss Cathy outta her room.

TyTip: When possible, tell your loved one about appointments outside of the home a day or two (at most) in advance. The less lead time they have, the less time they will have to fret, worry and/or obsess over the upcoming event or appointment AND the less time they will have to ask you question after question (usually the same ones over and over) regarding said event or appointment.

Remember, changes in their routine (no matter how benign we may think) can be very stressful-even scary to a loved one with Alzheimer’s.

Calculating Cutlery: Pt. lll

Posted in August by

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. ll

Posted in July by

I first noticed a correlation between Miss Cathy’s mood and the cutlery drawer around the same time that her vision started playing tricks on her way back in the early spring.

It seems her brain, diminishing by dementia, was telling her healthy eyes that they were weak, causing her to not recognize familiar objects like a knife or a fork and she couldn’t see clearly enough to read anything smaller than billboard sized type.

Her cognitive skills were affected too, making it next to impossible for her to learn new ways to compensate for her loss of vision and to adapt to her ever-changing circumstances and she seemed to complicate even the simplest of tasks.

Spring turned into summer and after many fits and starts, including the (sudden and unexplained) return of (some of) her vision, there was some improvement but putting the dishes and the silverware away could still be quite the challenge.

Her difficulties weren’t confined to the kitchen either; while sitting in the living room it wasn’t uncommon for her to turn the TV off by mistake or to switch the remote from cable to video mode (which completely throws her for a loop) and she’s not able to switch it back.

She would come get me most of the time when this happened, other times I might walk past the living room (and ‘not’ hearing) the familiar sounds of a courtroom, game, or talk show I’d just pick up the remote and correct the problem, and (sadly) there were those times when she’s just sit there, staring at a blank TV screen.

It’s heartbreaking to see her in those moments when she seems resigned to her fate, as if the disease is some sort of punishment for a past transgressed.

I’ll look at her, wondering what she’s thinking when she’s sitting in silence and wondering if I should step in and say something to break the spell.

Instead of just doing everything for her (automatically) whenever something goes awry, I’ve learned to take a moment, assess the situation and (if it’s pretty obvious that she’s not lit her hair on fire) I’ll help when I can and encourage her to do for herself whenever possible-if possible.

So, sometimes ‘I ask’, other times ‘I do’ and there are some occasions when I just ‘let her be’.