Tag Archives: quotes

#JeNeRegretteRien (I regret nothing)

Posted in October by

My purpose in these posts is not to kvetch about being a caregiver.

Telling my story (by writing it down as best I can) is my way of remembering before I forget the beginning, middle and in-between of Alzheimer’s and it’s affects on one family.

Sure, I complain, I’m the first admit that.

I rail against the day in/day out difficulties and vent my frustrations but that doesn’t mean I ‘want out’ or that I’m not committed to caring for my loved one, Miss Cathy, the best way I know how.

And let’s face it, I’ve fumbled a few times but I’ve never dropped the ball (which in this case would be my mother when I had to carry her once) so I admit I’m a work in progress.

But, like Maya Angleou says, “When you know better, you do better.”

I might learn to do better, but I doubt I’ll stop bitching along the way.

I remember the day years ago soon after my mother was diagnosed and I decided (without being asked) to become her caregiver (something I hadn’t done since the early days of the AIDS epidemic when it ravaged my gay community and I found myself caring for someone I loved for the first (but not the last) time).

So I knew the commitment I was taking on (even though it was a different disease, a different relationship and a different time) but nonetheless my decision was as easy to make then as it was before.

We all know how easy it is to say that we love, and it’s not often in life that we are given the opportunity to show how we love and show up for a loved one, and in those moments we get to see ourselves for who we really are.

Love means being there for someone else when they need you, not when you want to be there for them or when it’s convenient for you or your life.

Love, to me, between a person and their parent, spouse, sibling or friend is defined by the depth of their willingness to give, to receive and sometimes (maybe, more importantly) their capacity to forgive.

So, if I’ve sounded as if I’m complaining (and lets face it, sometimes I am, actually) that’s okay as long as I show up each day for the commitment that I’ve made (not to Miss Cathy or anyone else so much as) to myself.

I’m just letting off steam, being vulnerable, and posting questions as I stumble through what is one of the hardest things l have ever done or will possibly ever do, finding answers and support from (sometimes) the unlikeliest of people and places.

When I made my decision to leave my life to join Miss Cathy’s it was so that she could live out as much of her life in the home that she loves before the disease progressed to the point where there was no more there, there.

It’s been three years and three months since I moved in with her and so far, so there.

I’m happy to report that she’s not there yet so life goes on for now, just me and Miss Cathy.

To me it’s very simple, “when you care-you come”, the rest is just words.

So, when it comes to love and my loved ones, in the words sung by the late, great “Little Sparrow” Edith Piaf f-9439893″>http://www.biography.com/people/edith-piaf-9439893, “I regret nothing”.

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. 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.

Water off a Duck’s Back: Pt. l

Posted in July by

At what point should a caregiver ‘give up caring’?

When should you abandon a course of action that (you know) will benefit your loved one but they simply don’t want to do? When should your hopes and dreams for their wellness take a back seat to their fear and inflexibility?

These questions (and more) seem to swim around in my brain more often these days.

When I moved here to take care of Miss Cathy one of our first battles concerned the amount of exercise she was (not) doing. I’d already waved the white flag of defeat over her doing any sort of strengthening or toning exercise and decided to focus on walking.

I tried cajoling her, offering to walk with her (which believe me was no easy offer to make considering that she wobbles along at a pace that a turtle could easily overtake).

And I told her that I would help her by maintaining some sort of schedule but after one or two short (I’m talking less than an eighth of a mile short) walks, she simply wouldn’t go outside with any regularity, no matter what sort of ‘schedule’ she’d committed to.

Whenever I reminded her or prodded her to ‘take her walk’ she would let out any number of reasons why she ‘couldn’t’ (not that she wouldn’t, it’s just that there was some impediment in her way); it was (either) too cold, too hot, too late, too rainy or she was just too tired (from what I have no idea when her day consisted of moving between sitting on the living room sofa and laying in bed).

She got more mileage out of here excuses than her walking shoes would ever accrue.

I quickly found out that if I pushed her too far she had no trouble exercising her tongue and telling me to ‘back off and where I could get off’.

Miss Cathy could and would curse me out (not often but with enough regularity to warrant my being very aware of how far to push).

And the language…..Wowsa!….. Miss Cathy can swear like a sailor during a perfect storm without a wit of regret or worry that her ‘sweet little old lady’ card would be taken away if the ‘Old people potty mouth police’ could hear the vulgarities coming out of her mouth.

“Like water off a duck’s back”, I’d mumble to myself, a phrase I learned much to late from Jinxx Monsoon, the recent winner of RuPaul’s Drag Race. She’d use the phrase like a healing chant (and invisible shield) whenever some insult was hurled her way by one of the vicious queens competing against her.

Do I look fat in this life?

Posted in August by

There are a lot of things that go into being a caregiver; some you know (and are prepared for) and there are other things you learn as you go.

I’ve found a lot of support these past two years from Alz.org, chat rooms and support group meetings but one thing that surprised me about this experience that seems to be overlooked and never really talked about (at least not to me) is the tendency for the caregiver to get FAT.

I look around at a lot of the caregivers that I’ve met and I see a lot of lard asses-mine especially. As Whoopi Goldberg quipped, “Once I thought someone was sneaking up behind me and when I turned to look I realized it was my own ass.”

I bring this up not to say that this happens all the time to everyone in my situation. No, there are a lot of caregivers who have been able to balance the enormity of their new roles without becoming enormous themselves.

But it did get me to thinking about the connection between the stress we’re under and obesity.

We all know that obesity is rampant in our society; poor diets and lack of exercise being two (obvious) reasons but stress has been linked as a contributing factor as well. For me, and I’m only talking about my own tonnage here, I found that there was so much to do in the beginning and so much change occurring that once I had my routines set up for my loved one and I had a chance to catch my breathe and focus on myself what I saw surprised me.

How did this happen and when did I let myself go?

I began to wonder, like the “freshman fifteen” that some young people gain during there first year of college; due to the change in environment, the stress and the anxiety of being on their own for the first time, is there a similar correlation for caregivers as we transition into a new environment, as well as the stress and anxiety of “Not” being on our own for the first time as well?

If freshman can be forgiven for their “fifteen”, is it possible for me to get a little understanding for my “Alzheimer’s eight” or the “Dementia dozen”?

Believe me, I take full responsibility for my rotund-ti-ty, as my role as caregiver has expanded so has my waistline. And while I never had Paul Ryan’s abs (and thankfully I never had his views on restricting women’s reproductive rights either) I would like to see my feet again some day.

It’s nobody’s fault but my own and intellectually I know what needs to be done to return to my former svelte self-eat less and exercise. But, that’s easier said than done when you’ve stressed, often lonely and lack the motivation to give yourself the time and energy you’ve poured into your charge.

It’s not that I’ve been “so” selfless, I’ve just been too tired to care and being out of my own environment and routines I’ve found that I’ve developed some really bad habits-namely eating too much of the wrong food and not moving my body any more than is necessary.

The reality is that at the end of a day running around looking after someone else the last thing I want to do is run for myself.

I used to go to the gym, walk (I’m a former four mile a day runner but I blew my knees out years ago and switched to walking long distances instead) and maintained a rigorous stretching and exercise routine.

I ate a healthy, varied diet of vegetables, fruits, chicken, fish, some red meat and low fat or sugar free desserts. It was satisfying, I didn’t feel deprived and it gave me the energy I needed to fuel my life.

Unfortunately, it seem that these days I’ve pretty much abandoned anything that’s healthy for whatever is quick and easy (which mean it’s usually something frozen, processed and full of sugar and/or sodium). And I greedily grab for any and everything that can give me a moment’s comfort or (faux) sense of relief from my daily life’s stresses (read: junk food and sweets).

This is a classic case of emotional eating and sublimation.

Think of it this way, while the anorexic or bulimic denies themselves food or regurgitate as a way to control one aspect of a life off-kilter, (maybe) my eating and sloth like existence is my way of “not” having to be in control when I have to be responsible for someone else all the time-for the first time.

Hmmmm, maybe I’m onto something here….but, like the person who tries to commit suicide-you’re trying to kill the wrong person….so, maybe I’m force-feeding the wrong person, too (metaphorically).

No, I’m not saying I should be strapping Miss Cathy to her bed and feeding her color coordinated food nonstop till she fattens up like a piece of veal (not to say that she’s not doing a pretty good of that all on here own)…but I digress.

No, what I think my “light bulb” moment is telling me is that what I’ve been doing by engaging in behavior that I know is bad (and bad for me) is that I’m punishing myself instead of expressing the anger I feel toward my charge and the difficult situation I find myself in but was unprepared for emotionally (unknowingly).

So, I turn to food (that tasty panacea) and inertia; depression, denial and frustration all seem to more palatable when you’re prostrate with a plate.

Great, now that I’ve acknowledged the obvious I hope it’ll help when the cookies are calling me at midnight when I decide to stay up and watch “Shoah”.

While I seriously doubt that anything will change overnight with this revelation I do know that the first step to solving a problem is acknowledging it. I didn’t exactly work up a sweat thinking this through but I do think it was an exercise worth pursuing.

Who knows, now that the mind has been stimulated maybe I’ll surprise myself next by moving my body…….even if it’s just to push back from the table.