Tag Archives: dementia

The other #”F” word: Pt lll

Posted in April by

Back in 2010 when it was discovered that Miss Cathy had first stage Dementia with an Alzheimer’s diagnosis, I asked Dr Alemayehu, her neurologist what to expect.

He said something to the effect that “each patient is different and their mental faculties diminish differently at varying rates, some deteriorate rapidly while others can remain relatedly stable for years ”. What I remember most clearly was that he sounded about as matter of fact and dry as if he were talking about actuarial tables.

He couldn’t and wouldn’t give me a timetable for progression of the disease (and rightly so). The control freak and planner in me would just have to sit tight.

As my mother used to say, “You can’t set your clock by crazy”.

It was going to be a game of ‘hurry up and wait” (for what who knew and how much care she’d need was a question mark). There’s not much one can do to prepare except avail oneself of books, support groups, websites, et al so that’s what I’ve been doing.

Then, that day not long ago, the clock chimed ‘Koo-coo” and the alarm bells in my head went off, time to put all that ‘book learnin’ and research’ to use.

The slide downward had begun again and it was obvious that the doctor was right; her disease was just on holiday….much like I was.

It’s not like I thought there was a “sell-by” date on Miss Cathy’s sanity but I couldn’t help but be surprised when the time came and things started to change.

I found that I’d started to live day to day much like the characters in the movie “Groundhog Day”, on a calendar that doesn’t change and if/when it does its only toward a future grounded in the past.

I’ve also realized that caregiving is a marathon and not a sprint.

Unlike a disease where you can have a nice hospital stay where friends and family can come visit to feel better about themselves (in-patient treatment for Alzheimer’s is few and far in between-and are usually the result of a fall or some other by-product of the disease) or get an operation for a cure (there isn’t one) or take a pill to put your illness in remission (it doesn’t exist).

So, it’s not about the ‘quick fix’ because there isn’t one, buying a helium “get well soon” balloon is well intended but not what’s needed to tend to your loved one’s well being.

It’s about living close (or in close proximity) and day to day care, teaching the same things over and over, aiding and guiding your loved one through simple tasks that they’ve performed thousands of times before but now are as foreign to them as you will one day become.

It’s also about being available 24/7 for comforting and empathizing, explaining the same questions and correcting the same mistakes again and again, day after day, after day.

So, Miss Cathy and I are joined, hand in hand, walking through the valley of the shadow of decline.

For her, the loved one, the one with Alzheimer’s, her “F” word may be “Forgetting” and, for me, the caregiver, the one that has chosen this journey my “F” word may be “Frustrating”.

But, at the end of a long day, when your loved one is tucked away, and there is peace and quiet in the home, one might just think of the other “F” word……“Faith”…….faith in the knowledge that tomorrow is a new day, and with your loved one, a new chance wipe the slate clean and to start again.

Postscript: Since this posting Miss Cathy has undergone an MRI (which was non conclusive) and is scheduled or an MRA and a Diabetic Retinopathy while her ‘team’ continues to find an answer for her sudden loss of vision.

The other #”F” word: Part ll

Posted in April by

It’s common knowledge that “forgetfulness” is part and parcel of an Alzheimer’s diagnosis.

I’m finding that the collateral damage; anxiety, fear and depression (to name a few) that accompanies the “when”, “what” and “how much” Miss Cathy forgets to be very debilitating as the disease progresses.

The “When” took me quite by surprise because we hadn’t had an incident (or much of one) for quite a while then (seemingly) overnight things were different.

I was in a place where I started to second-guess (again) her diagnosis and wonder “why am I here?” because she seemed to be doing so well…..and for such a long period of time.

The “What” that was confusing her wasn’t just that she suddenly couldn’t remember things; she told me that she was having trouble ‘seeing’ as well.

To hear her explain it, the letters and numbers on the remote, telephone and alarm system weren’t just indecipherable; they seemed to be “moving” too.

Logic and reason did little to help her ‘see’ past what appeared to be true to her eyes.

I tried to reassure her that I was not being dismissive of what she saw. What troubled me was that she so readily accepted her new reality.

I was trying to get her to realize that regardless of what she was ‘seeing’ she should have been able to deduce that buttons do not ‘move’ and numbers do not ‘float’.

“Nope”, she said, “I understand what you’re saying, it just seems to me that my brain just doesn’t work that way.”

So, she would stare at imaginary moving numbers and push at buttons that weren’t where they were supposes to be.

“How much” she forgets and the price she pays for the loss varies from day to day; laboring over changing channels on the television or contacting someone on the phone (and being unsuccessful more often than not) she is absolutely spent, angry and/or highly agitated.

After one or more of these episodes I’ve watched as she toddles off to her bedroom to lie down, as quiet as a child in a ‘time out’, life punishing her for something she doesn’t understand that she didn’t do and is not her fault.

The other #”F” word: Part l

Posted in April by

“Well!”, Miss Cathy said.

I could hear her voice as she walked closer to where I was working in my room from where she had been in the ‘Living’.

“I fucked up the TV again!”

And sure enough, upon closer inspection I could see that the TV screen was blue where there should have been the antiseptic smile of Bob Eubanks, Dick Clark or some other (g)host from the GameShow Network that she watched at that time of day.

She had somehow hit a combination of buttons on the remote that switched the TV to “Video” mode and had no idea how to get it back.

I’d been home just a day or two from a short trip to NYC when Miss Cathy first “forgot” how to use the remote. Then the next morning she had trouble disabling the security system and problems with the telephone; each day seemed to bring more memory lapse and confusion.

Part of me couldn’t help but note that she presented with these new challenges after I’d been gone for a while and before I was scheduled to go away again……..was…is there a connection?

Part of what keeps a person with Alzheimer’s stable (though there is no guarantee) is to feel safe in their surroundings, continuity and routine.

Had I triggered this step back to her future by going away?

#Flareups

Posted in March by

It’s been months since my last communiqué and for that I am sorry.

Simply put there hasn’t been much to post; other than the occasional “flare up” of “Alz” life seemed to have fallen into a predictable, non eventful pattern.

I had a respite from the disease but, life being “life” and “Alz’” being “Alzheimer’s” things were bound to change.

So, I am back, sharing the little things and the not so little things that have happened and that are happening now.

I haven’t been posting but I have been writing so some of what I’ll be sharing has already past so it’s out of time but not out of context.

It is odd and peculiar to this disease (and particularly cruel, I think) that weeks, even months can go by without incident then all of a sudden, as if someone turned “off” a switch, things that were routine and known are all at once foreign and unfamiliar.

Miss Cathy has gone from an occasional state of confusion to living in a place where simple acts; putting her shoes on the correct foot, disarming the security system and operating the television remote have become almost daily challenges.

Things that she’s done for years are now a struggle of some kind, I’ve watched as she seems to approach her routines with trepidation.

At first she made the usual excuses; food being burned (“The meat cooked too fast”) or not being able to operate the telephone (“Something is wrong with this phone, I need to call the telephone company”) and the remote (“I can’t see these numbers, they seem to be moving or something”) to a realization that it could possibly be something else, something more (“There’s something not right with my brain”)….and I agree.

Enough has happened that it’s time to get her ‘team’ (general practitioner, neurologist and even her ophthalmologist) back on board to check her out. Maybe she just needs new glasses, her diabetes could be a factor or her meds need to be adjusted-or a combination of all the above.

No matter, it’s time to send a flare up to signal that the “Alz” has awaken from it’s slumber and it’s time to do battle; time to re-engage, re-learn and chart a new course of action.

I hope to get back to posting regularly and that you will continue to follow me on this journey-

Thank you

Funny Lady

Posted in September by

I picked up Miss Cathy the other day from the beauty salon where I’d dropped her off earlier to get her ‘do did’. She started nattering on the minute the back door was opened for her (as usual) and was in the middle of a story before she had her seatbelt on.

She was telling me that the beautician who curled and styled her hair was giggling and laughing at practically everything she said and I could hear that it bothered her.

It didn’t bother her that not long after sitting in the chair the young woman asked if she could call her, ‘Mom’.

For some reason Miss Cathy seems to attract a lot of ‘children’. She’s like the Pied Piper with a cane, beguiling the young and the not so young (she actually had a neighbor-who is past sixty-ask if he could call her ‘mom’).

Somehow, the ‘mom’ moniker applied even before she became a little old, round, affectionate person whose large bosom would cradle many a head.

And when I say ‘mom’, I’m not talking about the way her neurologist addresses her during their meetings, he’s from another part of the world and I’m sure it’s used as a sign of respect like “sir’ or ‘madam’ (but, frankly I think it’s a sign of laziness and a way to avoid knowing his patient’s name….but I digress).

Even when I was young (which meant Miss Cathy’s bosom was that much younger) I can remember my friends calling her “Mom” or “Miss Cathy” (the affectionate nickname she became known by that stuck), which pretty much means the same thing (without taking anything away for the person’s birth parent).

But, back to the here and now…..

I looked at her face, framed by soft waves of salt and pepper hair, in the rear view mirror as I was driving, listening to her and I could see that she was perplexed by her new daughter’s laughter, and that she was wondering whether or not she was being laughed at.

She said she didn’t think she was being funny.

I didn’t need to know the specifics, not that that stopped her from telling me every-word-that-was-spoken (she’s not only ‘Miss’ Cathy, she’s a ‘Chatty’ Cathy, too). I knew from experience what had happened.

I told her it’s the way that she talks openly, honestly and colorfully about things that people find funny, that Miss Cathy’s candor is refreshing to most people.
I can see that they are charmed by her insights and surprised by the occasional vulgarity that is quite frankly-funny (her filter, which at best was minimal, is pretty much gone now after her diagnosis).

I told her that it’s her delivery about everyday observations and her opinions of the subject matter, not the content that people find amusing.

In another life (with her timing and flair for the dramatic) she would have been a damn good actress.

I told her that she should take the laugher as a compliment, that not everybody is funny, and that there’s a difference between being laughed with (which in my opinion is a sign of intelligence) and being laughed at which we all know (unfortunately) is a sign of the opposite.

She thought about I was said, seemed satisfied with the analysis and as she futzed with her hair (re-styling the styling) then replied, “Oh, I never thought about it like that, I like that much better. That’s good because with all that laughing I was about to get ticked off!”

Green peas and squash

Posted in August by

“ I’ve never had green eggs and ham, no, but I have had green peas and squash; a dish that’s green, surprisingly delish and too bright to miss.

Green peas and squash are not harsh, even if served on a marsh and they doesn’t smell like someone’s arse.

So, if you’re on a plane, or in a train or playing tennis on a court in the rain, eat your green peas and squash-they may look odd but they’re good for your bod. ”

Okay….Dr Seuss I’m not but believe me, you’d start rhyming too if you saw what I see in the kitchen on a regular basis.

I’m the first to admit that when I saw the concoction on the kitchen counter I thought to myself, “Oh well, the old girl’s done it this time.” There lay a large bowl brimming with what looked like something left over from an oil spill.

Out of curiosity I picked at it with a fork, further mixing the peas with the dices of squash, the onion and bits of garlic. It looked a little funny but then again, so do I and I wouldn’t want anybody to hold that against me so in the spirit of solidarity I tasted it and surprise, surprise-it was actually very good.

I wasn’t “that” surprised because Miss Cathy has come up with some cockamamie dishes in the past but she succeeds more than she fails. And God bless her; unlike Paula Dean, Rocco or any of the other chefs on the Food Network, she’s never been concerned about the visual.

Since I’ve lived here she’s come up with some of the worst and best dishes I’ve ever eaten. When presented with one of her dishes I’ve found it best not to look but to just take a leap of faith and taste.

I don’t really remember her cooking like this when I was a kid growing up; it was all very “meat and potatoes”, stick to your ribs kinda stuff.

Her “Eh, why not” attitude seemed to have started late in life, now it’s all a dash of “what was she thinking?” and a pinch of “Oh no she did-int”. Whether it has anything to do with the dementia I doubt but I don’t believe in coincidences either.

And her best rationale for the combo of green peas and squash (which she thinks is a no-brainier) is, “they’re both vegetable’s aren’t they?”

Her philosophy is that “it’s all going to the same place anyway”.…. enough said-now back to eating your color coordinated food.

As good as it gets

Posted in August by

I’m back less than a week from my last trip teaching in New York and I can see that the time apart has done both Miss Cathy and me a lot of good. Peace and harmony seems to have replaced the tension and resentments that just a few months ago permeated the space we share.

Last year was the first time I filled in for a friend teaching a summer fashion illustration course from mid July to early August. It was an experiment to see how Miss Cathy could get along without me for up to four days (with Tony talking over as primary caregiver in my absence) and Ron (our upstairs neighbor that Miss Cathy considers a third son) to help out, too.

All went well so I could confidently accept the position again when they offered it to me this year.

While I was in New York teaching I had time to write, relax, see friends and just forget all about what my life has become and focus on what it is-which ain’t so bad.

My absence was a nice change for Miss Cathy too. Not only did she get to spend time with her other sons, her girl-friends came to visit more often and I’m sure she liked having here condo all to herself (more or less) while I was away.

Since I’ve been back I have noticed a few things worth mentioning. She’s been initiating projects around the condo then just walking away from them or forgetting that she even started them. And then there are those times when I remind her that something was her idea and I see from the expression on her face that she had no clue. Those moments are tough and her refrain, “Oh, I’m just as crazy as shit” is pretty much a guaranteed reaction.

I deduced a while ago that she gets more forgetful and “nonsense-ical” (my term for those times when “what” she says has absolutely nothing to do with the situation or conversation) when she’s upset, excited, stressed or anxious.

Lately though her memory seems to come into question even on those days when she’s otherwise pretty sharp.

It’s in those moments when she forgets that I remember to stay calm and loving. I gently try to give her what she needs; be it a reminder of the word she’s hunting for, patience as she searches for it, help solving the puzzle that her mind can become or simply sitting with her while she ruminates.

This month is the two-year marker of my “leaving my life to join hers’”. I’m slowly starting to accept where I am and who I am in this moment. I don’t know if it’s time, attrition or surrender that is the reason for my newfound state of resignation.

Whatever the reason, it is good to wake up and not have that sinking feeling come over me that I’m trapped in a nightmare (of my own choosing). It’s far from ideal but it’s not what it was before, or what it’s likely to be in the future….for today, it’s enough to know that this may be “as good as it gets”.

For whom the pain tolls

Posted in June by

It amazes me what we (I) let our (my) LWA (loved one with Alzheimer’s) get away with in the name of the disease. Not only are we chauffer, cleaner and go-fer; we’re also expected to morph into the occasional doormat-ter.

I (thought) I learned how to let comments roll off my back like water off the proverbially duck as advised by all the doctors and everything I’ve read but after the tongue-lashing Miss Cathy unleashed with such fury a few months ago I was left feeling emotionally eviscerated.

The details of which I’m hoping my best to forget and have repeated enough so suffice to say my entire purpose for being came into question. Unfortunately, it’s something that I don’t think I’ll ever forget (and I’m someone who never says never-even though I just said “ever”).

After it happened I was confused and shell-shocked. We’ve had arguments and disagreements in the past but her reaction to the situation was so much bigger than the size of the incident and it was just too much.

I don’t know (which adds to the confusion) if it’s the Alzheimer’s, old age, fear or a combination of it all but emotional boundaries were crossed and her filter (which at best was barely there) was completely gone so she said things I never imagined I’d hear, the venom viscous with hate.

The only thing I could think to do was to get in my car and drive. I stopped at a park nearby and sat there trying to take in what had just happened. I got on my phone and first turned to my brother, who listened and was some comfort but could offer little else.

It was my friends, Brian and William that really came through for me. They gave me the words that turned into actions that helped me go back (which in and of itself was pretty powerful because every fiber in my being was screaming for me to just drive; where I didn’t know-anywhere but back there).

But, what they said (each in own way) has kept me and keeps me here/there to this day.
Brian reminded me that I’m not alone and that I’m not “stuck”, I can always get professional help for her and leave. William told me, “much will be said” (and he should know-he has challenges of his own caring for both his parents. He shared some of the things that have been said to him and he’s still there, everyday caring for them both.) He also told me to just get a thicker skin, “apologize to her” (even if I didn’t mean it or understand why it was important) and to just……“go on”.

So, I took their advice and went back.

Oh, don’t worry; Miss Cathy is fine (she hasn’t been stuffed and propped up in a rocker somewhere waiting to be discovered in the last reel like Norman Bates’ mother) in fact, she’s better than ever actually. She unleashed, I “apologized” and now she seems all the better for having gotten (whatever) off her chest.

I haven’t shirked my obligations either. I go through the motions day to day but something has shifted in me and when my day is done (more often than not) I find that I question my role as caregiver and my continued commitment to stay here. I have tried my best to show up for my duties (both as son and caregiver) but my heart (what’s left of it) isn’t into it anymore.

It’s humbling but I’m almost ready to concede that the Alz wins.

I confess I thought I was made of stronger stuff; having survived heartbreak, the death of friends to AIDs, domestic abuse, bankruptcy, alcoholism and career suicide…to name a few) but I guess I’ve met my match.

I was thinking I might have some more fight left in me (or at least a few more ounces of blood to give) but that changed the other day when it happened again. While it wasn’t the bloodletting that occurred before, once again Miss Cathy vented her anger. But this time I wasn’t taken totally of guard, the surface was sliced, old wounds were re-opened and there was a little pain, an emotional paper-cut if you will.

Unfortunately, the people closest to us can hurt us the most because while they love us for our strengths they also know our weaknesses and have to power to turn that against us. Alzheimer’s has a way of releasing the person suffering with the disease from the responsibility of keeping that trust.

Sometimes, you can see that the LWA knows they’ve over-stepped and are remorseful and other times they seem to know not the destruction they’ve wrecked and the emotional damage done. They seem just as pained and confused as the person they’ve hurt.

And while it’s forgivable (hopefully) to the one who’s boundaries have been broken, it’s like the bell that once rung cannot be un-wrung and they are left to decide for whom the pain tolls.

F-bombs

Posted in January by

Miss Cathy is no stranger to how shall I say ……”salty language”. Let’s face it, she can make a truck driver blush but since her diagnosis she’s even made me wince and I’m about as vulgar as they come (I guess the foul-mouthed apple didn’t fall very far from that tree).

Last week with the redecorating and remodeling half way finished I was excited that when the ice maker for the new refrigerator was delivered that would at least signal the end of things to do in the kitchen for a while.

All of the new stainless steel appliances; stove, over the counter microwave and refrigerator came from the same big-box, discount electronic store and for the most part I was happy with the purchases.

On the day the ice maker was delivered I was surprised to see two guys at the door and not one and I was further puzzled that one of them didn’t just hand me the package and leave. The one holding the box said that they were here to “install” the ice maker so I proceeded to let them in.

Like everyone who now visits I asked them to please take their shoes off in the foyer before coming any further into the apartment. To my surprise they balked, one saying that we were their first stop of the day (as if that immunes them from bringing outside dirt inside) and that the installation wouldn’t take long. Since I wasn’t expecting them to install the ice maker (I hadn’t paid for that service-just the ice maker) I decided to not look a gift horse in the mouth and allowed them in (for some reason only the one who spoke came in and the other went back outside).

Unfortunately 45 minutes later the installer tells me that he was given the wrong ice maker at the warehouse for our refrigerator and another would have to be ordered.
I looked over at Miss Cathy on the couch after letting him out and she was fuming-not about the mistaken ice maker but about the fact that the guy didn’t take off his shoes.

I was on the phone with the store making arrangements for the correct item to be shipped and I made a point to complain about the installer’s objection to my request. When mom heard me mention the incident I could hear her in the background saying, “Let me talk to them.”

I ignored her, finishing up the conversation in my room and then I came back into the living room to tell her that I had handled it.

This seemed to calm Miss Cathy a bit but she was still worked up. “Well good”, she said, “that’s good that you know how to talk to people and get things done because I was ready to tell that fucker off and the people on the phone, too.”

“I don’t know who the fuck he thought he was saying he wasn’t going to take his shoes off, this is my house-not his!” “Makes me hot, I want to get that fucker fired!”

Alrighty then I thought, after stepping out the way of the last of the f-bombs and sitting next to her on the couch. Her reaction was kinda over the top but that’s par for the course lately so I just listened. She didn’t go on much longer and seemed appeased when I told her that the store apologized for the installer’s behavior and they were going to refund my money for the ice maker and ship and install the correct one for free.

That made her happy, crisis averted. The f-bombs are tucked away for another day, ready to drop at the next battlefield whether real or imagined.

Blessings

Posted in December by

One day last week I was sitting in the parking lot of CVS waiting for Miss Cathy to come back from buying a disposable camera. We were on our way to her girlfriend’s house for a holiday visit when she decided that she wanted to take pictures of Adele’s newly renovated kitchen. She’d been in here the store awhile so I was giving her another 15 minutes before I went in to check whether or not she was lost in one of the aisles or passed out from finally getting some exercise outside of the apartment.

When she finally returned to the car and was buckled up she told what had taken so long. Apparently she walked to the back of the store to the Pharmacy department thinking that’s where the photo center was (it’s actually located just inside the door on the right, beside the registers). She stood in line waiting to ask for the photo center location when she found herself in conversation with the lady in line ahead of her.

They got to talking about prescription drugs and how expensive they were. The woman told mom that she was distressed because her prescriptions (even though they were generic) were almost $100.00 a month and she didn’t know if she had enough money for this month’s supply.

Hearing her story Miss Cathy decided to offer the lady ten of the twenty dollars that she brought to purchase the disposable camera. The lady refused saying that she couldn’t possibly take her money and that she didn’t want mom to think that she told her plight to illicit money.

Miss Cathy assured her that wasn’t the case, simply that hearing her story made her realize how blessed she was in her life and all that she’d been given. She told the lady that she had great insurance and didn’t need to worry about her prescription costs like so many and she’d been blessed with great children and then she told her new friend about Tony and me.

In the car mom told me how years ago a woman had offered her some money when she was running short and she’d always remembered the kindness of that stranger and wanted to so the same for someone else. She said that the ten dollars wasn’t much but it was half of what she had so she offered it.

I listened to her, thinking that she’d never seen the movie or heard the expression, “pay it forward” but that was indeed what she was doing. I forget that underneath her bluster and the anger that the disease seems to taking over her personality that she’s a sweet person with a good heart.

She insisted that the woman take the money. True to form Miss Cathy told me that at that very moment she was thinking, “You betta take this money lady-I don’t offer money often-and never to strangers.”

What she said to the lady was, “please take the money, you never know where your blessings are going to come from so you should never refuse them when they present themselves.”

Grateful and touched, the lady took the money and Miss Cathy toddled off to the front of the store after the cashier told her where to go. She made her purchase and off we went to visit Adele to give her the Christmas wreath I’d made and to see her new kitchen and holiday decorations.