Tag Archives: Family

“Sometimes you can’t see the forest for the fire”

Posted in November by

We’ve arrived at the place where simple things are becoming difficult. We no longer live on easy street where weeks go by without a visit from signs of dementia.

Where it was once a ‘some-time’ thing, now Alzheimer’s has come to take up part-time residence.

Who’s to say how many years Miss Cathy has before she lives in a permanent state of confusion.

Three years ago, long before mom’s recent decline but sometime soon after she was first diagnosed I advised her to prepare for this day (or something much like it).

I suggested that she write down lists of contacts; names and addresses of all the people (friends and family) that she talked to on a regular basis as well as her favorite TV shows; the times and channels so that she would have them for easy reference later on when her memory failed and she’d forgotten all things familiar.

I also suggested (while she was still ‘sharp’ and more or less ‘herself’) that she make a point of flexing her mind ‘muscle’ and practice crosswords or put a jigsaw puzzle together, anything that would help her mind stay active instead of just sitting in front of the television hour upon hour, day in and day out then laying in bed for the rest of the evening, letting her intellect go soft.

She had other ideas of course, as is the case with most people who are in denial and not ready to accept what lies ahead, she let my ‘suggestions’ go in one ear and out the other.

My fear was that Miss Cathy’s mind was getting soft but her head was hard and she did what she’d always done, which was exactly what she wanted, regardless of anything I or her doctors’ advised.

So, she did very little to prepare for today and today (as has been true every other day for the last several months) she cannot read a page on a book, dial a number on the telephone (usually connecting with the wrong person at the wrong number) and gets confused by the everyday routines and objects that should be as familiar to her as the nose on her face.

Today she retains less and less new information and the old knowledge she once possessed is harder to grasp.

And since she never bothered to write down the things I asked for I’ve had to become somewhat of a Sherlock Holmes to decipher “who” she intends to call, “what” she’s searching for and “where” her favorite programs are on TV.
(I’ve since started compiling some lists of my own (of Miss Cathy’s social life) to go along with my medical notes).

When these new challenges first presented themselves I tried to get her to use sense memory instead of sight or other ‘tricks’ to help her navigate through her day or operate familiar things but she was quick to anger.

“I done told you I can’t see, I don’t know when you people are going to understand that I can’t see anything!”

“You people?”

So now I’m part of the preverbal you people and she can’t see that I’m the one person by side supporting her on a daily basis.

No matter, she can’t see the irony that her protests are just validating what I was trying to get her to ‘see’ but I can.

Oh well, like Miss Cathy is want to say, “Sometimes you can’t see the forest for the fire.”

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)

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”.

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

Posted in October by

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.

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. 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. Vll

Posted in October by

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.

The Group: Pt. ll

Posted in September by

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.

75 going on 7: Pt. ll

Posted in September by

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.

Another day, another Doctor: Pt. l

Posted in August by

Today was a day not unlike a lot of other days around here; get up, strategically try to time my entrance into the kitchen so that I can make my morning coffee (in peace and quiet before the deluge of chatter dominate my day), meet Miss Cathy in the living room to take her daily blood stik (since she has type 2 diabetes) turn on the TV for her (only if it’s a bad day and she’s forgotten how to operate the remote), then back into the kitchen to start breakfast.

But looking at the calendar on the wall across from the stove I could see that it was also a ‘Doctor Day’ so preparations (in addition to her daily routine) had to be made to get Miss Cathy out of the door and to her respective physician on time.

I would have to make sure that she was bathed, dressed and be prepared to answer whatever questions she’d have (usually the same ones she’d already asked but obviously forgotten) depending on who we were seeing and why we were going.

After weeks and months of specialist after specialist we were off to see her “Geriatrician” (think ‘Pediatrician’ for old people) who just ‘happens’ to be her primary care physician, Dr G.

It makes sense; she’s been going to Dr G for more than thirty years so if anybody knows her inside and out (literally and figuratively) it would be him.

I asked Dr G to take on the additional role so there’d be one doctor (and someone she’s comfortable with and can trust) that is sort of the ‘ring master’ of the circus of care.

In addition to being a ‘Doctor Day’ it was(unfortunately) a ‘running late’ day, too. For some reason mom was still in her room watching TV when we should have been getting into the car.

It still amazes me that for someone who asks what day and time her appointments are over and over, when the day arrives it’s a 50/50 chance whether or not she’ll be ready on time, running late, forget all together or sitting on the sofa, purse and cane in hand ready to go hours before we have to leave….guess with all those variables I should use different odds, oh well…back to getting Miss Cathy outta her room.

TyTip: When possible, tell your loved one about appointments outside of the home a day or two (at most) in advance. The less lead time they have, the less time they will have to fret, worry and/or obsess over the upcoming event or appointment AND the less time they will have to ask you question after question (usually the same ones over and over) regarding said event or appointment.

Remember, changes in their routine (no matter how benign we may think) can be very stressful-even scary to a loved one with Alzheimer’s.