For whom the pain tolls

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.

Home

“When I think of home I think of a place where there’s love all around me. I wish I was home, I wish I was back there”…but there is no there, there.

All Dorothy had to do was click her heels in the movie or on the Broadway stage and there she went, back over the rainbow safe and sound to a familiar place.

Great sentiment and a wonderful feeling I’m sure but I haven’t felt at home for some time now. I left my life to join Miss Cathy in hers in her home some time ago but it’s never felt like “home” to me.

I told an ex of mine once that “home” is wherever your mother is-not the address or the physical place. But now, as Alzheimer’s has started to claim even a fraction of my mother’s mind she’s less “mother” and more “patient”.

Alzheimer’s has turned what used to be a safe place into a battleground; full of land mines that have to be avoided less they blow up into harsh words and tension.

These days I find that it’s easier to isolate myself in my little bedroom to avoid conflict. So, I inhabit the different areas of the room or “zones” as I call them as I move through my day, always having an ear out for when the coast is clear to go to the kitchen or use the balcony.

I don’t think I’ve sat in the living room in months, and if I have it’s just for the few moments it takes to relay some information to Miss Cathy or to listen to a request of hers.

Things have gone downhill since my last post which is the reason I haven’t been writing. It’s gotten too real to relay. I found that (unlike before) it wasn’t therapeutic or helpful to write about what’s going on because it was too painful emotionally to relive it on paper (on online as the case may be).

So, I don’t feel like I have a home and with no home you have no foundation and with no foundation you have no support and without support you’re all alone and that is a lonely place to be, “especially in a crowd” as Marilyn Monroe says in Gentlemen prefer Blondes.

But, what I have learned even in the face of no home, no foundation and no support is that I have “me” and that’s a pretty good start. I think of me as being a brick, and my “will to continue” my mortar so with brick(s) and mortar I can start to construct my own foundation, my own support and ultimately my own home.

Or maybe…just maybe, because I’ve always had me- like Dorothy I was (am) home already.

As time goes by

I’ve been remiss in writing for the past month. The reasons being unexpected work (which is good) and a monetary self-consciousness (which is bad) about what I’ve been blogging and posting these last eighteen months or so.

I’d been blogging more or less as I’ve kept my journal for decades now; un-self conscious and un-varnished, pretty much the truth of my experience (as I see it, of course), without thought (not much anyway) of tone, ramifications or implications.

Funny how with a little time and distance you can look at something and suddenly see it in a completely different light (kinda like putting on that swim-suit that you got on sale in the off season and now that it’ll soon be summer you put it for the first time and wonder-what was I thinking?).

I made the mistake of re-reading some of my old posts and felt suddenly naked and very exposed (except for that swim-suit of course;) Well, I won’t be doing that again (reading that is-not writing). I’m not going to start editing myself or over thinking what I write-I mean, what would be the point if I did that? No, I’ll just continue to move forward in print and leave the looking back to others.

Since my last post I’ve taken Miss Cathy to her neurologist and to her primary care physician for her regularly scheduled check-ups. They both gave her glowing reports. She did better on the neurologists’ memory and cognitive skill’s tests than she’s ever done before and other than gaining a little weight, her health is better than ever, too.

Dr Aleymayehu, her neurologist explained (once again when she asked about her medication) that the Aricept she’s taking is not a “cure” but it “delays” the Alzheimer’s patient from progressing in the disease. Since she was diagnosed so early moms’ pretty much frozen in time with most of her wits about her so Miss Cathy is one of the lucky ones.

Sure, she still has some confusion, she still has anger issues and some days she gets overwhelmed when there are too many things going on. But, lets face it; those things are all manageable considering what others who are further along in the disease are experiencing

With her doing so much better I can understand why she keeps asking the doctor about the Aricept and what it’s suppose to be doing to help her. We know (well, I know) that Alzheimer’s is a progressive disease and it has no specific timeline of deterioration so it’s possible that Miss Cathy could be the way she is now for years to come. So, it’ all wonderful news but “what’s a caregiver to do?”

Lately I feel I have less purpose here. The first year was all about getting her acclimated to her (and my) new life and for some time she really seemed to struggle with the “day to day” and needed a lot of hands on care. And I was good at helping with that.

Don’t get me wrong, I’m not saying I want (or need her to be sick) it’s just that my days had purpose when she needed me and every day seemed to be a re-affirmation of my decision to leave my life to come join hers.

As time has gone by she’s more independent (compared to where she was after her fall in January of 2010) and has more days where she’s cleared headed and functioning like she had before her diagnosis (albeit slower than before).

She needs me less and I (feel anyway) like I’ve gone from caregiver to reluctant roommate. Or like I’m trapped in some vortex where it’s ten years ago and I’m on a visit home to see my mom but the visit never ends.

I hate to be a “Debbie downer” but I have to ask, “why am I still here?”

Miss Cathy goes country

I don’t know when it started exactly. When I first moved in with Miss Cathy she would talk about how she’d occasionally watch a music video on CMT (Country music television) and I thought little of it.

Then I noticed that her days started to have a different soundtrack; instead of the usual sounds floating through the apartment of courtroom show gavels, one of the Cartwright’s’ needing “Pa” to help them out of a jam “down on the Ponderosa” or the applause of the game shows I would hear the soft twang of a guitar and warble of love lost from some unknown baritone.

I on the other hand seemed to be listening to the sounds of my own discontent. All I could hear were thoughts of how hard it is being here and questioning how much longer I can keep this commitment to care for Miss Cathy.

Believe me, I’m sick of the sound of my own belly aching and crying “whoa is me” but I don’t know….. I think I thought things would have gotten easier by now or…..different somehow-anything but the constant frustration, anger and ill at ease that I feel.

But, I constantly remind myself that this isn’t about me and it’s still early in the disease. This is the easy part where she’s more or less still herself so how can I possibly be thinking of bailing now? These are Halcyon days compared to what’s ahead.

So, I sit with my discontent, sharing coffee with it in the morning knowing it will leave me at some point during the day and freeing me to feel-sometimes joy, sometimes satisfaction in knowing that I’m doing the right thing but there’s never peace.

Mom on the other hand seems to have adjusted pretty well. Sure, the last tow years have been a big change for her too after living alone for almost ten years after pop died, but she’s always said she likes having family around. I’ve spent most of my life living alone, as if I were hatched and not part of any clan.

I can say that it is satisfying to know that she’s happy (or as happy as one can be with Alzheimer’s) I know that she likes having her son around-and I am “that” and I am “here”. Even though I keep to myself and lord knows we don’t talk very much she’s got Garth, Brooks, Dunn and Lady Antebellum to keep her company. It’s pretty much all country-all the time, she watches country music videos for hours at a time as she sits on the couch where she spends her days.

I drove her over to Tony’s for the Super Bowl last Sunday and on the drive we’d pretty much exhausted all conversation ten minutes into the hour plus drive leaving just the radio to fill the silence. But then I happened to switch from the classical station that I prefer to the country channel and through the rearview mirror I could see Miss Cathy light up like a Christmas tree.

Her mood was infectious and soon I was listening and humming along to the few songs or riffs that I recognized. We started talking between sets and before you know it we’d arrived at my brother's place. I can’t remember having spent such a good time in her company for a long while.

Soon after we were inside the spell was broken, the old dynamics came back into play in my brother’s family room so I withdraw as Miss Cathy launched into a story that we’d all heard before but I could safely leave Tony and Suemi to be her audience as I once again turned to the sound of my own inner dialogue.

I wonder, like Miss Cathy’s new found interest in country music if this is just a phase or if I’m the last to know that this is it-life changes and suddenly you find yourself in Nashville and not in a New York state of mind.

F-bombs

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.

Design on a Dime in time for New Years: Part IV "Magic carpet ride" concluded

The carpet guys started in Miss Cathy’s room, which meant putting ALL of her furniture into my little room (no bigger than Anne Frank’s domicile) while they ripped up the (blood) red carpet and padding. As they worked from room to room, hallway to closets the old flooring gave way to the new. The carpet had lain there for decades so I was surprised that it surrendered so easily, I thought it would be like prying a riffle out of Charlton Heston’s cold, dead hand but it came up without a fight.

During that marathon day the installers only took a half hour break for lunch, otherwise pretty much working straight through from 11:00 am till 7:00 pm. I did give them ice water and cut up some apple slices that I shared with them (I guess a little of the suburban hostess lives deep down inside of me).

I helped move furniture and when not needed I (deep) cleaned everything (when else was I going to have a chance to clean behind (and sometimes the bottom of) such heavy furniture.

By 4 pm I was ecstatic to see the carpet go down in the living room-no more baby blue carpet to ignore and design “around” as if it didn’t exist. At 4:30 pm I got a call from Miss Cathy asking if I was on my way to pick her up. In her defense I should have called her earlier (but forgive me I was trapped behind all of the living room furniture piled into the dining room and forgot about her).

She was none too pleased when I told her that the “surprise” was taking longer than I thought, I asked if she could just “hold tight” for a little while longer and I would pick her up “soon”. She grumbled a bit but I wasn’t really listening I was so focused on getting off the phone so I hurry the guys up.

By 6pm there were still finishing touches left to do on the hallway, closets and my little room. I was starting to get overwhelmed (evidenced by the sweat that started early in the day but was now full on flop sweat) with helping the installers finish, cleaning, putting things back and now having to contend with a mother anxious to come home. I was not looking forward to calling her back.

When I called the first thing she said was that she was “ready”-I told her I wasn’t, that it would be more like 7 pm before I got there and by her reaction you’d think I was the governor denying her appeal from getting the electric chair- I wondered if the other Ty felt like this when he was getting a home ready to view on Extreme Makeovers.

At 7:30 pm the installers were finished laying all the carpet and then they helped me put the heavier pieces of furniture back and the mattresses and beds back in place. As they left I gave them each a $10.00 tip- keeping twenty dollars in my pocket that I’d originally planned to give them but I was still miffed about being kept waiting so I kept the money as my own “Ty tip”. With them gone, I couldn’t do a barefoot happy dance on the new carpet; no I didn’t have time for any of that.

I spent the next half hour putting the bric back as best I could, giving up on opening another box after I noticed time ticking away on a clock I’d unpacked. I settled for trying to “dress” the living room so that at least there would be one space intact for the “reveal”.

With no time to shower and change, I splashed some water on my face and without so much as a spritze of cologne I was off to pick up Miss Cathy, dust and sweat my only accessories. True to form, she was sitting outside in a lawn chair in her friend’s garage waiting for me. I took a deep breath, reminded myself that this day was (in fact) all for her and pinned on a nice smile as I got out to greet her.

I made a detour to Kentucky Fried Chicken, thinking a bucket of the Colonel’s greasiest and finest would distract my passenger-I never saw Pennington and the like have to placate their families with a chicken wing but so be it.

She actually thawed out a little in the car-she was probably thrown by my actually talking to her on the ride home. Once we arrived I raced ahead (well, I didn’t have to race because after all this is “toddle along” Miss Cathy we’re talking about) to “fluff” and “tszuj” before she got to the door.

Once she was at the threshold I had her take her shoes off, close her eyes and hold my hand as I led her into the living room (by her halting steps you’d think she’d never set foot into her own home before). I felt just like the TV hosts leading the unsuspecting homeowners inside.

She opened her eyes and then…….nothing, like the book case that I “revealed “ to her a few weeks previously she didn’t quite get what she was suppose to see immediately but unlike the bookcase (where I had to tell her what was new in the room) she looked around, then down and said, “Oh…my….God!” Her face was a mix of wonder, shock, (horror?) and pure pleasure at what she as seeing.

Her reaction for the next half hour or so made all the sweat, pushing and pulling worth it. She walked from room to room looking at the carpet as if it might morph back into the old flooring, saying that now she knew what had taken so long and was surprised that so much was done in so “little” time. She was stunned and just so happy hugging me that I no longer cared that I smelled like the old, rolled up carpet that earlier lay like a corpse outside ready to be carted off to wherever they end up.

I reminded her that this was a present from both Tony and I (mostly me) and I could hear her telling the story of her surprise and how “blessed” she was for the next several hours as she called everybody she could think of.

The new carpet was by far the most dramatic of the changes that were to occur. Since that day there have been new custom faux-wood blinds installed to go with the silk drapes, new furniture for her bedroom and stainless steel range, over the counter microwave and refrigerator in the kitchen just in time for New Years’.

Currently I’m in the process of removing all the old wallpaper and painting the entire apartment. The dining and living rooms are painted and I’m working my way down the hall to the bathrooms and bedrooms.

She’s been a trooper with all the chaos, adapting quickly to the changes as I box up her things, peel, prime and paint around her.

With each new “reveal” Miss Cathy’s reaction has only grown and she seems happier with each change that I’ve made. I’m not done yet but we’re still early into the “New Year”. At present I’m under budget and over joyed with the results.

Design on a Dime in time for New Years: Part III "Magic carpet ride"

With the kitchen started I could focus on the carpet install. The “big day” finally arrived early on a Tuesday morning, with me up a lot earlier than the scheduled 9:00 am appt so that I could to drive Miss Daisy over to her girlfriend Adele’s for a “play-date”.

I have to say, I was very impressed that mom left without a complaint or a snide remark, honoring my request that she leave for the day so that I could work on a “surprise” here at home. For the week prior to “the day” she didn’t even try to ask for a hint or as to what the surprise may be either.

During the days leading up to the install there was a crazy amount of prep work to be done. Part of the cash “bargain” that I struck with the carpet salesman was that I would make sure that every surface was clear so that the installers wouldn’t have to pack anything or be responsible for breaking anything as they moved the furniture.

So I had to box up everything that was “sitting” on a surface, including all knick-knacks, books, pictures, vases, teddy bears, trinkets, collectibles, paperwork, clocks, remotes. Everything had to be removed, every surface had to be clear and that was a tall order.

A “Ty-Tip”: If you’re moving or need good heavyweight boxes for storage or any other reason, head to your neighborhood Target and ask a sales clerk if you can come back into the store-room with then to retrieve boxes that they have slated for recycling.

Their boxes are not broken down like most stores, they are folded and packed neatly for recycling, clean and ready to use. This alone is a savings of about $12.00(per) for a similarly sized box from FedEx or Staples.

I got about 30 boxes, took them home and spent the week packing up everything on every surface in the condo, starting with things that were merely decorative, saving the things (like alarm clocks and remote controls) until the morning of the install as to not interrupt Miss Cathy’s daily life.

Like most of the work that I’d done and would continue to do, I worked when Miss Cathy was napping or asleep for the night. So, as she slept I packed away her bric and brac, carefully wrapping things I much rather throw away, mindful that “One man’s trash is another’s treasure’ and in this case it was mostly treasure from an island I’d never heard of or care to visit.

But, four days (nights) later I had 99% of every surface clear, clean and ready to move without the threat of something sliding off and breaking.

Waiting for the carpet guys that Tuesday morning I felt like it was Christmas and Santa was going to be pulling up in front of the condo with a sleigh full of presents instead of a truck with strangers hauling padding and carpet-it must be what another “Ty” (Pennington) feels like during an “Extreme Makeover” (although, this wasn’t nearly that bad or drastic a change but in my mind it comes pretty close).

Since it was getting close to 9:00 am I started to move some of the furniture myself, all the more to help them get “in” and “out”. I’d rather help people I hire than stand over them and hover like some upper class matron in pearls and a chignon, following them around reminding them to be careful of her things because “they were worth more than they’d make in their lifetime”.

At 9:30 am no carpet installers so I called and was told that the “guys” had left the warehouse and would arrive soon. After several more calls and a lurking suspicion that I had been ripped of for the$500.00 cash deposit that I gave the salesman I started a calm “panic” (that’s when you’re screaming on the inside but outwardly you appear to be in control-kinda like the look of someone who’s just about to go “postal”).

I beat myself up for being too cheap to sign up for “Angie's List” (did you know that Angie charges a monthly fee to give you a thumb’s up on trades people?). Nor did I get around to calling the Better Business Bureau like the responsible person that I’d like to think that I am. No, I “trusted” the carpet salesman-a stranger, someone who just came to the condo after I called from an ad in the “PennySaver” and I handed him five hundred dollars cash. Hell, anybody could run an ad, get a business card made up and steal a carpet sample board from someplace-can’t they?

While I stood in the window, less like a kid at Christmas and more like a con-man’s “mark”, I was kicking myself and wondering how I was going to get my money back-if I could ever track down this “carpet” salesman. And what a waste it was to pack up thirty boxes of stuff just to put it all back onto the surfaces of furniture that was going to remain on the nasty carpet I’d grown to despise.

The truck finally pulled up at 11:00 am.

The lead installer, Jose walked in with a grin on his face ready to work, in that moment I had a choice-to let it go and get to work or be a bitch and rail at him for keeping me waiting…. I did both, I let him in to start the work and then I called his boss, the “salesman” and read him the riot act and let him bitch at his employee later when he came by to check on the job.

The carpet company sent two guys, Jose and another young man whose name I never did get. Other than being late and unapologetic they got right to work, they were hard working, fast and professional. I was impressed with how they were able to navigate moving the furniture-big and old as it was so that they could work.

It was going to be a very long day.

Next week: Design in time for New Years Part IV: “Magic carpet ride” cont’d