Tag Archives: support group meetings

The Group: Pt. Xll

Posted in October by

The meeting wound down and I was surprised that an hour and a half had passed so quickly.

As I packed up my things; notebook, pen, some brochures that were passed round the table containing information on Alzheimer’s, and other pamphlets written specifically for caregivers, I looked around the room and at the people in it and knew that I’d be back.

I was glad that I came and had to admit to myself that I was an ass for pre-judging these women, the process and for thinking I was wasting my time-I couldn’t have been more wrong.

The truth is that I wish I’d come sooner but no point in getting lost in “woulda, coulda, shoulda”, I came to the meeting when I did so that was when I was suppose to begin this part of my journey.

I was leaving with the knowledge that to be a caregiver, in the presence of other caregivers and be able to share information and stories is a rare and wonderful opportunity.

It was a great feeling to be ‘heard’ by those that know of what you speak, and to be part of a group that can validate one another’s experiences is truly unique (there’s nothing like be in the trenches with someone who’s fighting the same war).

And by living a common experience and coming together to share what we live and know, I saw first hand (or first ‘eyes’ to mix a metaphor but properly term it) that the comfort we provide one other (sometimes just by a wink, a nod, or a hearty embrace) can give us the fuel to sustain and maintain (self and sanity) as we go back to our lives as caregivers.

What I also realized as I looked around the room at the people in it is that we are more alike than we are different; bound by a common experience that transcends gender, age, race or class.

So, even thought there are people out there in the world (that I already know, and know they love and support me), the support group has become important to me, and it gives me solace to know that I am not alone, that there are other caregivers just like me (who just happen to look nothing like me).

Update: I’ve been back to the group more or less faithfully, twice a month for the past several months since that first meeting back in May 2013.

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. 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.

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.