Tag Archives: Life

The Group: Pt. Xl

Posted in October by

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.

The Group: Pt. X

Posted in October by

One by one, members of the group shared stories from their lives (which, when I first arrived, looking at the women in the room before me, I thought could not be farther from my life or experiences) and it was obvious (blatantly so) as they talked that I was wrong (so wrong) about what we had in common.

What I could learn from these women was a lot, from their strength, courage and wisdom. I was inwardly embarrassed that I’d been so superficial and quick to judge when I first sat down.

I could relate to their frustrations, fears, weariness and the loneliness of being ‘the one’ to care while others only professed to, well meaning family or friends ‘dropping by’ on occasion (when it suited them or fit into their schedules) or worse, gaving lip service rather than actual service.

Some of what I heard was sad, some depressing but not all of it.

As I listened and learned there were times when I was laughing out loud with the rest of the group in shared recognition of the absolute madness of the lives we lived as caregivers, ‘gallows humor’ as it were.<a href="” target=”_blank”>

In just little over an hour I was made to feel welcome and part of the group.

When the ‘round robin’ nested with me I found myself comfortable enough to share some of what I’d been going through, and just like that, in that moment of putting words to feelings in a room full of people who needed no explanation of ‘what I meant” or “what I felt” because they knew and they could relate, I felt as if I were no longer among strangers, accepted and part of the group.

Something one of the women said ‘pricked up my ears’.<a href="” target=”_blank”>

She said, “I don’t want him to change me into someone else.”

She was silver haired and very well dressed, she had a look and air about her that reminded me of a “Mocha-dipped” Carmen, the 50’s Dior model who in her 80’s is still a fashion icon and model to this day.<a href="” target=”_blank”>

Although her comment was meant to express her specific inner struggle with the person that she used to be with her husband and her fear that the person she sees herself as now as his caregiver is different, her comment made me stop and wonder about myself.

“Have I changed?” I pondered, thinking back over my three plus years as a caregiver.

“Is it possible to walk through this experience and not change?”

“And ‘if’ I have changed, is that necessarily a bad thing?”

The Group: Pt. lX

Posted in October by

The facilitator explained that people with Alzheimer’s can become easily overwhelmed when presented with too much information or have too many things to pick from so she suggested to Jane that maybe she shouldn’t give her husband so many choices for breakfast.

She said that maybe we should all think about narrowing down options when the situation presented itself, to limit the choices to one or two for our loved ones to make it easier for them to make a decision.

“Scrambled or fried eggs for breakfast and that’s it”, she said to Jane.

“Don’t ask him to pick from what (to him) seems like an endless menu.”

She explained that having to make (what seems to us) a ‘simple’ everyday choice could cause great anxiety for our loved one because their cognitive skills and reasoning are deteriorating and they can’t process information the way we can (and they used to).

“Or you decide”, she suggested, giving Jane yet another option, “don’t even give him a choice, when he comes in to breakfast just serve him.”

Sometimes, she said, as caregivers we don’t have the luxury of a discussion with our loved one (because of whatever stage our loved has been diagnosed) so, sometimes the best thing we can do is to make the best choice for them.

I have to say, I was impressed; with the honesty of Jane’s “share” and the no-nonsense practical suggestions the facilitator was giving her and to the rest of us by extension.

Although breakfast isn’t a hot spot between Miss Cathy and me, the information was still relevant and I thought perfect for Jane, so imagine my surprise when she said, “but he’ll just get mad if I serve him the oatmeal, he’ll say, “I want eggs!”

“Okay,” said the facilitator without batting an eye, “then you eat the eggs and give him the oatmeal.”

“As far as your grandchildren are concerned, you have to understand that alot if times loved ones with Alzheimer’s develop very sensitive hearing and it’s hard for them to understand things in higher resisters, all they hear is a lot of unpleasant high pitched noise.”

“And what do little kids have?” she asked somewhat rhetorically.

As a chorus of “high pitched” “Squeaky” and other descriptives for the immature vocal chords of small children were bandied about, there was also the sound of laughter; ‘laughing’ with each other and not at anyone in particular, a common sound that I should come to recognize (as I had from other 12 step groups) as a way of saying “I’ve been there, too” or “I thought I had it bad”.

And, as I sit in the meeting, listening to the shares from members of the group I’m reminded like John Bradford,, “There, but for the grace of God, go I.”

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. V

Posted in September by

The meeting was just about to start and I was feeling out of place as I took a place at the table.

I looked around from face to face, from left to right and was greeted warmly with smiles and nods, as if to say, “you are welcome here” without a word having to be spoken.

I nodded back, smiled in kind and hoped my ‘calm’ demeanor and practiced façade didn’t give away the chaos running through my mind and the ‘fight to flight’.

Here (there) I sat, (on) and with all of these feelings; fear, anger, anxiety (pick a feeling and I’m sure I was feeling it).

What I was ‘feeling’ was that I was behaving (thinking) alittle like an ass (well, a lot actually) and wondering where I ‘got off’ thinking so much of myself.

As the saying goes in ‘another room’-“I was the piece of shit that the world revolves around”.

And why did I think I was so ‘different’ (read-special) anyway?….Because I was (what?) male? An “Artist”? Black?

What right did I have to think that my experience(s) were any more unique than theirs as I took a seat and hoped there was room enough on the chair for my ass and my arrogance.

Did the preponderance of ‘non’ natural fibers and elastic waistbands in their clothes (compared to the 100% imported cotton of my clothes) make their lives any less valid?

And what the shit difference did it make anyway?

The women had assembled together (or so it seemed) in solidarity to bond over a shared common experience and there I was, not joining in but judging them, based solely on appearances and whatever stereotypes I could project onto them, for no other reason than to separate myself from ‘them’ and the feelings that ‘they’ might illicit if I opened up and revealed that part of myself that I’d shared with no one really because I didn’t think they (my family and friends) would understand what I was going through, but, in this room that wasn’t the case, we were all caregivers.

I was making snap decisions about an entire room full of people before anyone had even opened their mouths’ to speak.

This did not portend good things to come (for me anyway-they all seemed fine).

What it did say was that my insecurity(ies) about (potentially) making myself vulnerable and exposing myself to a room full of strangers had sent my defenses into overdrive, so I lashed out (in my mind anyway) as a way to protect myself from their (perceived, anticipated) judgment by judging them first.

In truth this wasn’t some “Sex and the City” Kaffeklatch of gossips at some chic Manhattan restaurant after a day of light shopping.

No, this was a gathering of very real people (women) whose purpose was talking about the lives they were living, as they shared their stories about caring for their loved ones day in and day out while seeking comfort and support from kindred souls, coming together as a way to lift some of the darkness of feeling alone.

The group: Pt. lV

Posted in September by

The Caregivers Support Group is held twice a month at a large, relatively new, Senior Center (adult day care facility) not far from where I live.

I knew the place well because I’d brought Miss Cathy there when I was trying to find a social outlet for her; thinking it was a perfect place for her to go to get out of the apartment, engage in some new activities and possibly make some new friends.

My attempt(s) to keep her mentally and physically active were met with much resistance; unfortunately, she was having none of it.

We fought back and forth about what she should best do with her time, I thought she should be engaging in life (while she was still relatively healthy and cognizant) but her wish was to stay home and watch actors on TV participate instead (while her muscles atrophy and her reasoning diminishes by lack of stimulation).

But, that’s ‘blood under the bridge’ as they say-‘her choice-her journey’, as I say.

If she didn’t want to avail herself of what’s right down the road (that’s positive and life affirming) that didn’t mean I had to follow in her stead (being negative and a ‘Debbie-downer’), if anything it’s serendipity that the facility that I thought was there to help her ends up being a place for me.

I arrived early for the 10:00am meeting, which is held the first Tuesday of every month (a perfect time for me since I’m freelance and don’t have a “Job-job”) the second meeting being at 5:30pm on the third Thursday.

I stopped at reception, asked for the meeting room then walked through the large atrium, looking through the glass fronted French doors into the great room where seniors were playing board games and other activities, past the exercise room with state of the art machines and equipment, peeking into the crafts room and library thinking what a pity Miss Cathy wasn’t here enjoying all of this (oh well) before finally arriving at a large multi-purpose room at the end of the long hall.

The room was peopled with card tables and chairs, and there was the soft murmur of conversation in the air.

I walked in, took an available seat and settled in, then I realized I was about to share my most intimate feelings with a group of strangers.

As I looked around the long table (made up of putting several of the smaller ones together) I noticed that my fellow caregivers were all female, they appeared to be a mix of middle-class mothers, wives and daughters, not unlike women you’d see at any upscale mall in America, or at “Curves”.
They were mostly middle aged (like myself) and mostly white (unlike myself), I sat there wondering to myself what in the world I could possibly have in common with this bunch (other than the obvious of course)?

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.