The Group: Pt. Xll

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. Xl

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

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. http://en.wikipedia.org/wiki/Gallows_humor

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’. http://www.phrases.org.uk/meanings/289100.html

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. http://shine.yahoo.com/fashion/carmen-dellorefice-81-fashion-weeks-oldest-runway-model-220400722.html

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

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 Bradfordhttp://en.wikipedia.org/wiki/John_Bradford, “There, but for the grace of God, go I.”

The Group: Pt. Vlll

*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