Monthly Archives: October 2013

Requiem for a small kitchen appliance

Posted in October by

Recently, I was in my room trying to write, waiting for the muse to move me when I was shaken out of my musings by a racket coming from the direction of the kitchen so I went to investigate.

It sounded like a car stuck in second gear as it ran back and forth over a body.

I walked in to see (and hear) Miss Cathy murdering (yet) another electric can opener.

I don’t know how she does it (actually I do; she presses down too hard on the handle, either in frustration or impatience, forcing the mechanism to grind to a halt) that is/was the fifth car opener to fail in three years.

Unplugging the machine; finally silencing the grinding and groaning, releasing the can of Bushes’ Baked Beans, hanging limp from the magnetic holder.

Freed from its gallows I could see that the top had been wrung a few times but never rotated enough so that the blade could do it’s job.

It was a sad sight, matched only by my mother’s perplexed face as she tried to comprehend ‘how’ it could possibly be her fault and not the machines when I told her she’d broken another can opener.

I wasn’t mad at her (for a change) so much as I was disappointed in myself because I broke my vow and hadn’t bought a second hand can opener online or one from a second hand shop as I’d done before (after wasting money on new ones the times before).

No, I was mad because I’d gone out and bought a brand new, top of the line stainless steel can opener from Macy’s at the unheard of price of $95.00 (I think it was on sale for $69.99 but, still).

The last used can opener broke after Miss Cathy manhandled it (and before you ‘ask’….it was perfectly fine and ‘gently-used’ when I’d bought it so “not” being new wasn’t the reason it broke).

Miss Cathy promised she wouldn’t use the new Cuisinart and she’d ask for my help whenever she needed a can opened and (putz that I am) I believed her.

So, I was mad at myself for:
1) Believing her and thinking she could change her behavior
b) For wasting my time (and money)

The reality is that she’s not doing anything wrong. If anything her behavior; forgetting (or breaking) her promises, mood swings and impulsiveness (to name a few) are pretty damn consistent with her diagnosis.

I realized all this as I was opening the can the old-fashioned way with a ‘hand’ opener; luckily I’d kept one ‘on hand’ for occasions such as this.

I told Miss Cathy that after five, count’m… five broken can openers in three years that at some point she has to take some personal responsibility in the matter-they can’t have all been ‘faulty’ can openers.

As I unplugged the Cuisinart I tried not to scold her or make her feel worse than she already did but I wasn’t going to molly-coddle her or let her get away with blaming the (victim) ‘appliance’ either.

The murdered appliance deserved better than that, so, farewell small kitchen appliance, thanks for trying to be of service as go off to some landfill, rest in peace can opener as you as you lie in a heap.

#JeNeRegretteRien (I regret nothing)

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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”.

I’m late (we’re late) for a very important date: Pt. ll

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After checking Miss Cathy’s progress (she was so engrossed in her closet you’d think she was looking for a hat to meet the Queen of Hearts but all she usually wears is army fatigues and an oversized tee under a poly blend jacket topped with a red ball cap no matter where she’s going or who she’s to meet) I decided to “warm up the car” as we used to say in the old days when cars required such attention but nowadays it’s my euphemism for needing to get out of the house.

When it got to be ten minutes before we needed to be someplace that was less than five minutes away (but would require at least that much time for mom to get into and out of the car) I knew it was time to call the doctor’s office to let them know that we’d be late.

After an interminable period of “press one for this and nine for that” the receptionist finally came on the line and after pleasantries and me explaining the reason for the call she told me we’d have to reschedule because “the doctor is ‘on call’ today and would have to leave” if we weren’t there on time.

I told the young woman on the other end of the line (Why are receptionist usually young women? And why didn’t young men ever apply for these jobs? Is it suddenly the Madmen 60’s where clerical office work in doctor’s offices was concerned?)

Anyway, my reassurances that we’d only be ten minutes or less ‘late’ did nothing to assuage her position. She was a ‘verbal gatekeeper’ and I was being denied access, I would have liked to throw her down a rabbit hole.

“Well”, I said, “I’m calling as a courtesy really, which is more than I can say for the hour we had to wait the last time we were in to see the doctor and no one ever came out to tell us how long he’d be or apologize for his tardiness.”

“One, two, three…” I breathed, calculating how I could turn this conversation around, trying not to sound ‘too’ annoyed, lest I give away my fantasy of someone I’d never met free-falling down into endless darkness before hitting an unknown bottom which is where I felt this conversation was heading.

“Can I speak to the doctor?”

“The doctor is in with a patient now, can I take a message for him and he’ll get back to you later this afternoon?” she said. (Oh no she did-int’!)

How could he be both with a patient and getting ready to leave because we’re not there-at the same time?

I was used to putting up with Miss Cathy’s inconsistencies but I had no need to indulge this girl’s word play.

Rather than question the receptionist who was (after all) just doing her job (and apparently not being paid enough to keep track of her own contradictions).

I simply said, “Well then, be that as it may, we’re in the car and will be there in two minutes…see you soon” and hung up smiling a broad Cheshire cat grin, not having to worry about the power to disappear because unlike the cat and Alice (because of the power of technology and not magic) she could hear but could she see me.

I’m late, (we’re late) for a very important date: Pt. l

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I can’t believe we were late for our first doctor’s appointment in over a month.

When we finally arrived at the Medical Center I looked at my watch to see that we were 20 minutes late for Miss Cathy’s appointment with Dr K, her (new) neurologist.

It’s not like we were rushing from another appointment because of some ‘full calendar’ of places to go and people to see, we only had the one place and he was the only ‘people’ she (we) had to see in an otherwise day free of obligations.

So, there really was no excuse for our tardiness and all the drama it caused (to me, anyway).

We were going to see him to discuss the addition of Namenda XR to her drug cocktail, up till this point she’d only been prescribed Aricept for her Alzheimer’s.

I first told mom about her three month neurological ‘check-up’ the night before so she’d have (some) time to get used to the idea but not so much that she’d obsess or drive me crazy asking, “When do I see the doctor?” over and over.

The next day I reminded her again about the appointment while she was eating her breakfast in front of the television in the living room then went about my morning.

I didn’t come back out to check on her till 12:30pm (the appointment was scheduled for 1:00pm) and there she was, sitting in the living room watching TV, still in her nightgown.

“My bad”, I thought to myself, “ no reason to be mad at her for something that was totally my fault.” As her caregiver I should have checked on her earlier to make sure she was dressed and ready so we’d be on time.

Luckily her condo is only about a five-minute drive to the doctor’s office but with less than a half hour for her to dress and get out the door (and in the car, out of the car, in an elevator and walk the short distance to the doctor’s door…all of which take more time than you can imagine) I knew there was a better chance of John Boehner controlling his Republican caucus than us being on time.

Frustrated (but, I had to admit that I was more angry at myself than her) I ‘suggested’ she go and get ready so we could leave as soon as possible. I’m usually more on top of things, time management wise, but, what can I say, sometimes I think that she’s having a good day and monitor her less or (heaven forbid) get absorbed in something I’m doing for myself.

You might be asking yourself “Why didn’t he just help her get ready?”….Well, I’ll tell you.

The answer is that I’m (still) making a conscious decision to let her be as independent as possible and not step in and take over (until it’s absolutely necessary) where matters of her autonomy are concerned.

Part of what I struggle with as her caregiver (in addition to time management obviously) is the knowledge that if/when I start to do more for her (even if it’s under the guise of ‘helping’) it will send a message to her that she can just sit back and be taken take of.

So if I do ‘whatever’ it is that needs to be done for her then she’s absolved of any responsibility or culpability for her actions.

She may have Alzheimer’s but there is plenty she is still capable of doing for herself-dressing being one of those things.

So, we’d be late but I wouldn’t have to add the label ‘enabler’ to one of the many (mad) hats I wear as we prepared for this very important date.

The Group: Pt. Xll

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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

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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

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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

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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

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*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

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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.