Category Archives: September

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.

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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

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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

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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.

The Group: Pt. l

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

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

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

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

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

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

They turned out to be a wonderful resource for me.

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

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

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

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

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

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

#CommonSense….anybody got change?

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

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

“Thanks the problem”, she lamented.

“I haven’t got any.”

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

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

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

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

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

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

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

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

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

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

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

75 going on 7: Pt. ll

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

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

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

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

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

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

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

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

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

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

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

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

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

75 going on 7: Pt. l

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

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

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

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

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

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

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

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

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

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

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

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

True Colors

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As this election season kicks into high gear it’s been interesting to see Miss Cathy engaging in the process.

It goes without saying that this lady is gaga for President Obama. She may not always remember what day it is but she remembers the date that the president was inaugurated.

Miss Cathy was the first person I called back on 2008 when our first African-American President was declared. I remember her sounding the happiest I’d heard in a long time, she was (almost) speechless, unusual for her l know, but her joy was that strong.

I can’t imagine how she felt, being someone that had grown up in the Jim Crow South, seeing what she never dared dream possible-at least not in her lifetime.

She was part of a generation of African-Americans who had migrated from the Deep South northward hoping for a better life for themselves and their families, most of whom were largely successful in their endeavors, living their ‘American Dream’ in shades of black and brown, free of the ‘whites only’ reality of their upbringing.

Miss Cathy wasn’t the first in her family to leave home but she was the only one to graduate high school, with no encouragement from her family. It’s not that they didn’t care-they just didn’t understand that education meant opportunity but she did, and she knew hers was somewhere outside of the city limits of Henderson, North Carolina.

She would go on to have a successful career as a correspondence clerk for the Veterans Administration in Washington DC, where she developed a lifelong love of the military and supporting veterans and their families for their sacrifice.

While I knew most of this about her, she told me alot more about her life experiences while we watched the DNC Convention together on TV.

What I didn’t know until I joined her life was how political she is, come to think of it, she hasn’t missed casting a ballot since her diagnosis.

She’s a pretty outspoken voting rights advocate; especially at the local level, she has little patience for people that complain about government but then don’t vote (guess the tree can fall near the apple, too).

She feels that voting is almost a sacred duty, keenly aware of all those that have passed so that she could exercise her constitutional right. And she rails against those (especially minorities) who do not vote; she has one word for them-‘stupid’.

Since the conventions we’ve been talking politics, past and present, sometime deep into the night. Talking with her is an interesting contrast to the shades of grey the candidates are drawing between the class distinctions in our country, redistribution of wealth, race and the role of government in helping people better themselves as well as those who have worked their entire lives helping themselves to their (in my opinion) well deserved social security…….Miss Cathy wasn’t drawn that way-it’s who she is.

The debates are just around the corner. I’m looking forward to watching them with her and hearing her take on the candidate’s views.

I’m sure her commentary will be funny, insightful and as unique as she is, running the gamut from blue to red-beyond just primary colors.