Tag Archives: dementia

Bed(time) Story

Posted in December by

One day last week I was walking from the laundry room when I spied Miss Cathy pulling the sheets off her bed. Seeing me she asked, ”Do you have anything you want to go in the wash?”

“Isn’t that funny” I said, “Great minds think alike. I just took my bed things in to wash.”

I told her that I was going to do my laundry the day before but kept putting it off, leaving it till the traditional “wash-day” of old.

“I don’t think about what day it is to wash my things”, she said,” I just do laundry whenever I get ready. It used to be when I had a utility bill when we lived in the house that I would think about things like when it was cheaper to run water but now that I’m in a condo I just run water when I like.”

“Yeah, I know”, I say having heard what was coming a thousand times before, so I started walking again, “I wasn’t subscribing to any particular day to wash -I was just talking.”

“I use the water whenever I want because I pay my condo fees and there’s people here that don’t.” (At this point I could feel a rant coming on….)

“Makes me sick that people can do that! How can they do that and get away with it?” (And …there’s she goes….)

She went off on a tear about people who didn’t pay their faire share to the condominium association and how it made it hard on everybody else. So, to insure that she was NOT taken advantage of and got her monies worth she leaves lights on in rooms she’s not in and runs water without a thought to conservation-Miss Cathy logic.

Thankfully I had reached the laundry room and (small space that it is in a not very large apartment) it wasn’t far enough away so I could still hear her. I turned on the washer and the rushing water drowned out the sound of her negativity as it filled the machine with just enough water to clean my clothes (somebody around here has to be conscious of natural resources).

After the laundry was washed and dried I’d laid her linens back on her bed. Later that same morning on my way to my room to work I looked in on her in her room and saw her standing over the bed, thinking she was going to make the bed I went in to help.

“Where are you going?” I asked puzzled when she took the fitted sheet out of my hand. She’d gathered everything up was about to walk past me out of the room, “Don’t you want to make your bed while the sheets are still warm from the dryer?”

“Oh”, she said startled and confused, “I’m so crazy, I was headed for the laundry room. I thought I still needed to wash them.”

She came back into the room and I made the bed for her while she went into the living room to sit and watch television for a little while. It wasn’t much later than noon but I knew she’d be back and ready to lie down for a nap soon.

Blowin’ in the wind

Posted in December by

Thanksgiving was over a week ago but a conversation I had with my sister-in-law, Suemi still lingers in my mind-like so much leftover turkey you don’t know what to do with.

We found ourselves alone in the kitchen the morning after the holiday, everyone else was still passed out from turkey overdose, so we had a chance to have a private chat.

“Mom surprised me,” she said.

“How do you mean?” I asked.

“It’s been awhile since I’ve seen her and she looks so old, I’m surprised that she’s still walking so slow and using a cane. She doesn’t seem sure of her balance, always reaching out to grab onto something, like she thinks she’s going to fall. She’s how old? Seventy-three? Wow, by the way she walks and acts she looks ten years older.”

“It’s not only that”, she continued, “I can tell that she’s not the same, she’s not as confident as she used to be. I can see when I look into her face that something has changed.”

I listened, well aware of her metamorphosis into an “old lady”. Just a few years ago-before her diagnosis, she was active, independent and fearless, people were surprised when they found out how old she was. I listened, remembering who she was and quietly judging myself and wondering if I was being judged for her decline.

Suemi was surprised when I told her ho much Miss Cathy slept.

“Oh wow, that’s a lot!” she said eyes wide with amazement, “she can live another twenty years like that……just sleep, no work, no stress. A lot of old people live a long time that way.”

“Believe me I know,” I said nodding that I felt the same, “she’s like a bear hibernating through the rest of her life.”

But, she’s not completely stress free I reminded her, she still has her temper. Then I regaled my sister-in-law with some of the highlights of Miss Cathy’s rants against enemies and evils real and imagined.

I was kind of surprised that Suemi had seen so much change in Miss Cathy in just the space of three or four months.

She reminded me of the reason why I started this blog in the first place. I was very aware when I moved here that it was important to record the progression of her disease. I knew that change when come when I was busy tending to her and before I knew it ‘who she is’ would be the new normal and l would have forgotten how she ‘used to be’.

Tough as it is, these are the Halcyon days of Alzheimer’s, she’s still stage one dementia but the curtain can lift on stage two at any time and those challenges will make the previous diagnosis seem ‘quaint’ so I wanted to be sure to write it all down so that I could remind myself that it wasn’t all bad.

With caregivers, it seems that you deal with the person as they are “that day” and quickly you forget how it’s different from yesterday’s issues and challenges.

Some things, like the love you feel for them-and they for you are constant but everything else is kinda up for grabs. But knowing that, hell, and even writing about it doesn’t prepare you for an outsider’s observation (an outsider being anyone that isn’t their caregiver and hasn’t seen your loved one for awhile-be they friend or family) that validates your purpose.

Suemi held up a mirror so that I could see Miss Cathy (and myself) and it hit me that Thanksgiving this year is yet another marker of change in our family. We’re not a particularly sentimental bunch (well, I am but I’ve long maintained that someone made a scramble with the babies when I was born and I was left with the wrong people-all evidence and my striking familial resemblance to the clan aside).

Anyway, Thanksgiving became important to us as a family back in1997. It was the last time my pop was healthy enough to celebrate the holiday before cancer took him away the following spring. He’d been in the hospital just days before and the doctors weren’t holding out hope that he’d ever leave (alive) but he proved them wrong buy not only getting better, he sat at his place at Tony’s holiday table and ate like a man half his age and filled the room with his deep Barry White baritone and laughter. Since then we’ve made it a point to get together on the last Thursday in November.

And now, after not being at Tony’s last year because Miss Cathy just didn’t want to go we were all together this year but it’s different now. Not only do we have the memory of pop at the thanksgiving table to top our list of thanks, this year we add Miss Cathy’s joy and spontaneous “Star spangled banner”.

We will come together next here but the reality is that she probably won’t be the same but who knows, maybe she’ll surprise us and sing her favorite Bob Dylan song:

“How many roads must a man walk down before they call him a man?
How many seas must a white dove sail before she sleeps in the sand?
How many times must the canon balls fly before they’re forever banned?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind”.

Turkey Hash

Posted in November by

I was in the car driving Miss Cathy over to my brother’s for Thanksgiving; it was quiet so I turned on the radio to pass the time. NPR was in the middle of an interview with an author (I didn’t catch his name or the title of his book) who was from a family of ten children and even though they grew up in great poverty each child went to college, became successful and distinguished themselves in many different fields.

The radio host, Diane Reims asked to what did he attribute his and his siblings’ dedication to education and life accomplishments. The author said that their mother, a woman who had very little schooling herself instilled in them a passion for learning and was the reason they were all so successful.

Upon hearing this I looked at Miss Cathy seated in the backseat through the rearview mirror and said, “Hey, they could be talking about you.”

To which she responded, “Well, where was the daddy?” “Doesn’t he deserve any of the credit?” “Makes me sick how it’s always the mother that gets all the praise.”

“Oh my, the dealer passes”, I thought to myself. Instigating a rant about how fathers don’t get enough credit for their offspring’s success was not my intent. Listening to the author reminded me how much my brother and I owe Miss Cathy. I was just trying to pay the old bird a compliment as we were stuck in traffic on our way to eat a bird of the Butterball variety.

I tried to interrupt to remind her that I trying to give her a compliment but it was too late; she was already in full career. But, like so many conversations I have with her these days you never know what she’s going to say or how long she’s going to stay on topic.

I have learned that her ‘’default’ response is something negative (see exchange above for proof). I took a detour off t Interstate 95 (it can take you from Maine to Florida to see grandma and that’s apparently what everyone was doing that Thanksgiving morning).

The rest of the ride was pleasant; I’d switched to the classical station for the duration of the drive to avoid any further conversation.

Thanksgiving dinner at my brother’s had become a tradition for years after my Pop died as it was the last time the entire family had been together before he died in 1998. We didn’t come over last year because Miss Cathy just didn’t want to leave home so it was nice to all be together again, even if it was just for a couple of days.

As always, my sister-in-law, Suemi set a beautiful table worthy of a photo spread in Food &Wine magazine. We all took our usual places at the table, assigned long ago; Tony and Suemi at the ends, Nile across from me and Zachary across from Miss Cathy with Tony on her right. After the prayer led by my mother we began the meal. The meal started and we’d all begun to fill our plates and bellies with all the traditional goodies in front of us. We were chattering along, nothing memorable or of great consequence, just the typical conversations families engage in when they’re all together for a holiday when all of a sudden Miss Cathy started to sing,” what so proudly we hail from the twilight’s last gleaming”.

When she got to the end of the stanza she wasn’t sure of the next line so I started singing along, feeding her the words, encouraging her to continue. So she sang on, this time louder and with more confidence, her voice clear and surprisingly melodic.

Tony joined in and soon the three of us were singing as the other looked on smiling. Tony nodded for Zach and Nile to join in and Suemi did as well, the entire family singing what we remembered of he Star Spangled Banner:

Whose broad stripes and bright stars, thro’ the perilous fight
O’er the ramparts we watched, were so gallantly streaming

And the rockers’ red glare, the bombs bursting in air
Gave proof thro’ the night that our flag was still there

O say, does that star-spangled banner yet wave
O’er the land of the free and the home of the brave

When we finished I led the applause. It was a wonderful, corny, spontaneous movie moment, out of nowhere and out of context. A lot like my life living with Miss Cathy; unexpected and full of surprised-just without the singing usually.

Word(s)

Posted in October by

I am someone who loves to talk, ask any of my friends and they will confirm this about me. I know that I inherited this trait from Miss Cathy, unlike my brother who is what I would call a ‘minimalist’ where conversation is concerned. My mother loves to talk and I grew up ‘loving’ to listen. There wasn’t a topic that was taboo; sex, politics, sexism, racism, feminism, growing up poor in the south and the world at large. There was little she didn’t have a strong opinion about and wasn’t afraid to express it.

I remember I would always volunteer to help her with the Sunday dinner, because I knew that it meant hours of uninterrupted entertainment. I was her eager sous chef, pressing an old jelly jar into dough to help make biscuits along with some other minor duties as she spun tales.

Nowadays things have changed and talking with Miss Cathy is not the same. Of course I’m not a child anymore and I’m no longer eager to learn about life through my mother’s stories. I’ve long since ventured out into the world and now have my own tales to tell.

Not that she’s any less entertaining or as insightful as she always was-she is, it’s just that since her diagnosis there has been a noticeable change in the rhythm and/or the course of her conversations.

I’ve noticed that over the past few months that each time you talk with her you don’t know if or when the conversation will go from the norm to a game of “what’s ‘that’ word I’m looking for?”

It doesn’t really matter what she’s talking about, usually she’s trying to get me interested in the latest bit of gossip about a relative of unknown origin (not that she doesn’t know who they are-believe me she does, it’s just that the blood lines are sometimes so convoluted that I stop listening, hence the title) and I’m about as interested in the conversation as a four-year old is in Nuclear Arms dismantlement.

But, you can’t ‘not’ listen, and somehow you get sucked in and just when I’m about to find out why Aunt Whoitz and Aunt Whatitz hate each other (this week) suddenly, without warning Miss Cathy would stop interrupt her own story and say, “Shoot, what’s that word I wanted to say?”

While she looks around the room as if the word is hiding behind a chair I start ‘free associating’, saying anything that comes to my mind, “uhh,.. move, blow my brains out, slap myself unconscious, move”

“No, no,” she’d say, “that’s not it. Darn, what was I talking about? Oh yes, now what was I trying to say?”

And so it goes, if she didn’t find her “word” we’d either move on to another topic (meaning another relative) or that would be my cue to escape to my room. Sometimes she’d actually find the word, sometimes in the moment and sometimes in the middle of another story.

Oftentimes though, the word is just…gone and her reaction is usually frustration and anger. I’ve found that her emotional reaction varies depending on her overall mood or the time of day. She’s not a “Sundowner”, a person with Alzheimer’s whose symptoms seem to deteriorate as day turns to night. No, it just seems to me that if she “loses” a word in the evening she’s more apt to be more upset because it’s the end of the day and she’s already tired.

Her stories may not fascinate me as they once did, but I still try to listen, even though I‘ve heard most of them more times than I care to remember but now that I think of it that could be a good thing because as she loses a word here or there I’m more apt to be able to pick it up and give it back to her.

So, her words may not be lost after all, she’s just didn’t realize that she gave them to me.

Playing the Alz card

Posted in October by

C’mon, you caregiver’s know what I’m talking about. You know you’ve benefited from your situation and at times taken advantage; need to move to the head of the line at Starbucks and you’re running late (so you oh so casually (and humbly) mention to the person(s) in front of you that you’re in a rush and you’re on an errand for a parent with Alzheimer’s) and see how fast you get your double mocha, half caf, latte.

Or, you’re at work and want to leave early (there’s a pair of sling backs you’ve had your eye on and today’s the start of the sale at DSW) but instead you tell your boss that you need to get to CVS to talk to the pharmacist about a dementia prescription mix-up and before you can say Jimmy Choo -off you goo.

Want to get out of ‘finally’ meeting a facebook friend ‘face to face’ (because it’s only a cyber based relationship for you but the other person doesn’t know that), simply IM them that you’re so busy trying to find your wandering parent that your ’friend’ will understand and you’ll be able to get back to your faux-friendship online without worry of testing it’s authenticity ‘in the real world’.

Careful though, over-use of this “get out of jail free card” can lead to having your Alz card invalidated-play it one time too many (especially with the same person(s) and you’ll know the card’s expired when you get an eye-roll instead of what you want.

For me, it started innocently enough; I needed something (the who, what, where doesn’t really matter) and as I told whomever what I needed I ‘mentioned’ that my mom “has Alzheimer’s” and just like that-I got what I wanted.

I instantly felt guilty (not so guilty that I gave back whatever it was that I’d gained). So, I vowed to not do that again-until the next time it happened and now it seems that sometimes there’s been a conscious shift in how I bring up my mother’s condition and when I make the disclosure-God, can I be that shallow?

Who uses their loved one for personal gain? Well, celebrities and politicians to name just two but I’m neither, so I’m going to need a hand here-nod to yourself if you know what I’m talking about.

Now, don’t get me wrong, I’ve never played it to get out of a traffic ticket or anything. Although (in full disclosure there was an incident more than a year ago that shouldn’t count.)

I wasn’t playing the Alz card so much as having a mini-breakdown:

About eighteen months ago a policeman pulled me over on a dark country road in rural Virginia. I was driving back to my brother’s house where I was staying while I tended to Miss Cathy for fourteen hours a day while she was in her first rehabilitation facility for a month after her fall and dementia diagnosis.

I remember thinking that I just needed to nap for a few hours, shower and get back to her when I saw the lights in my rearview mirror. I was so out of it emotionally I had no idea why he’d pulled me over but I knew it wasn’t to welcome me to Bum-fuck Virginnie.

After I rolled down the window and gave him my best Sidney Poitier (non -threatening Black man) smile and greeting he asked for my license and registration. The officer then told me that I’d been driving 28 miles over the posted speed limit.

Yikes! I thought as I non-threateningly gave him my license. I rummaged around in the glove compartment to discover (to my horror) I couldn’t find the registration (I was driving my mothers car).

He took my license, told me to stay in the car (gladly) and I watched in my side-view mirror as he walked back to his squad car and did whatever it is that police do in there. After what felt like an eternity he sidled back up to my window, shined his flashlight into the car and then into my face. It was very uncomfortable sitting there with the light shining in my face, he disappeared somewhere behind the glow of his flashlight. My eyes tried to adjust and all I could hear was his voice asking me,” Where I was coming from at this hour?” And, “Where was I going in such a hurry?”

That’s when (to my horror and his (and my) surprise) I looked into the light and burst into tears. I found myself (like an actor under a spotlight on a stage delivering a soliloquy) the entire story of my mother’s fall, her discovery after three days, the drama of the police having to break down the door-all of it, I didn’t leave out a single detail. My monologue ended with her diagnosis and (at the time) unknown prognosis from the doctors about her future and her stay at the rehab where I’d just come from.

Completely spent, I blubbered out the last of my story and was able to see the policeman’s face because he had turned off the flashlight at some point during my narrative.

“I’m real sorry to hear all that,” he said, “Sounds like you need some sleep buddy. You need to slow down, get home and rest up if you expect to be of any help to your mom. My dad had Alzheimer’s so I know how you feel, he got so bad that he had to move in with my wife and me and we took care of him till he died.”

“Your mom’s real lucky to have you to take care of her. Now you slow down and get home safe.”

He handed me back my license and my dignity and with a tip of his hat he was back in his car and was gone. All I could do was sit there for a while (still sniveling) so that I could compose myself and absorb what had just happened. Did I just cry like Meryl Streep in “Sophie’s Choice” in front of a cop? And, did that cop just let me go-without so much as a warning ticket? No registration and more than twenty miles over the speed limit-in rural Virginia? I’m not saying it’s Selma in 1954 but still….I kept the windows rolled down to dry my tears. The shock of the policeman’s compassion filled the car along with the night air as I drove back to my brother’s house that night.

That experience stayed with me for a long time and I am grateful for that policeman’s kindness and understanding.

That wasn’t the Alz card so much as it was telling the truth and me benefited from another person’s compassion-besides, everything was so new then that I my life hadn’t been taken over by the disease (just yet).

And when I signed on to become my mother’s caregiver it’s not like the Alz card came in the mail with all the other Alzheimer’s and dementia pamphlets and brochures that I requested. I (we) didn’t ask for the privilege; nine times out of ten it just came to us innocently enough after someone saw, heard or learned about our care giving situation and treated us differently (like we were special for what we were doing) and from there on we realized a benefit from our new life situation beyond the sympathetic nods and empathetic gazes.

So, I’ve had my Alz card punched a time or three and I’m sure there’s plenty of room on it for a few more. But like any “card” that has it’s privileges; you have to be mindful of the responsibilities too and not abuse your position or the kindness of others who for whatever reason think we’re deserving of special treatment for doing something that we’ve chosen to do out of love and not for personal gain.

Dr Alemayehu Part ll

Posted in September by

Continuing with his exam, Dr Alemayehu asked Miss Cathy to spell “world” backwards.

“D, W,R,L….no, that’s not right.” Then she started over again.” D, L, R, R, O,W”

Nodding at her effort (but still making no judgment or comment) he said, “read these words for me” and then he had her repeat “apple, book and key” three times out loud before asking her to move from her chair to the examination table so that he could have a better look at her and administer a series of quick “hands on” tests that lasted about five minutes.

He had her open and close her eyes, follow his pen with her eyes only, tap her fingers then grip his hands firmly with hers and squeeze. After one of these texts he put his pen/pointer back in the breast pocket of his doctor’s jacket and asked.

“Do you remember the three things I had you repeat to me?”

“Yes,” she said, pondered, then started to recite,” Apple….uhhh, gosh, I had it right a the tip of my…..apple and key.”

Miss Cathy tried a couple of times to remember the third item, looking up and around the room as if it were somewhere to be seen, a visual clue somewhere in the small sterile exam room. Finding nothing to help here (and knowing that I’d be of no use) exasperated, she gave up.

After writing some notes in her file the doctor looked at her and reported, ”I’m very pleased with where you are, you remembered two out of three things. That’s very good.”

Hearing this unexpected praise she sat on the exam table, legs dangling in the air like a child sitting on a dock on a summer day who’s just received a Popsicle.

He told her that she could get down from the exam table and once they were reseated in their chairs the doctor asked if she had any questions for him.

Yes doctor I do, “Will the Aricept improve my memory?” she asked.

“No”, he answered, “it keeps your memory ‘where it is.” He went on to tell her that the Aricept buys a patient time because it manages to keep a person from progressing any further in the disease (for a while anyway, until it doesn’t work anymore) but the doctors have no way of knowing how long that will be.

“Will I be able to determine when my memory is failing me?” she asked.

“It’s a gradual process”, he explained, “and I cannot give you a time frame. But, I was concerned about your memory and after seeing you today I can tell you are in the same place you were when you came to see me last. So, your memory so functioning well.”

“Drawing the clock is abstract thinking, which is difficult but you did very well except for putting the numbers in the middle of the clock.”

“I’m very pleased with how well you’re doing so why don’t you come back to see me in six months.”

I helped Miss Cathy gather up her things and drove her back home where she couldn’t wait to get on the phone to call and tell all about her “glowing” report from the doctor.

Who could blame her for being ecstatic, a year ago we sat with the doctor at the beginning of her diagnosis and were full of questions and uncertainty. Six months after that we (all, as a family) had made adjustments in lifestyles and expectations as to what the future could hold.

And now we are in this holding pattern, a “grace period” if you will, life settling into the new normal with no idea when change will occur of how it will manifest. Until that day, Miss Cathy and I will just take it one day at a time and before you know it, another six months will have passed and we’ll be back sitting with the neurologist again.

Hopefully, she’ll be drawing clocks just as well and remembering just as much.

Romancing the stone (granite)

Posted in July by

Last Thursday was Miss Cathy’s quarterly visit to her primary care physician, Dr Granite; just a tune-up to kick the tires. As usual she’d been “mentioning” the appointment daily for the last week so when the day finally arrived she was all ready with her list of questions and sitting on the couch ready to go before I’d finished my first cup of coffee. She always gets a little “wound up” (anxious, hyper and nervous) whenever we go to see one of her doctors so I was having second thoughts about something I needed her to do.

My brother, Tony and I have met with a lawyer about setting up her estate and putting things in place so when the times comes and she needs to go to a nursing home that Medicaid will cover the entire cost. We’ve got a lot things going on and part of the process requires a form to filled out by her doctor. I knew I could ask the doctor about it but it might come off as predatory, like I was setting her up to rip her off (and I gotta say-it’s not like she’s Crystal Carrington and this is Dynasty or anything, but still…. ) so I thought it best if she asked for the form since he was her doctor and they have a good rapport.

The form that we need filled out is very subjective and completely voluntary so a lot of doctors don’t want to get involved, so it might require some finesse and tact to get it (and while Miss Cathy has still has many wonderful attributes “finesse” and “tact” are not two of them). But, it’s a pivotal part of what we’re trying to accomplish so it’s important. I took my time and patiently, in as simple a manner as possible told her that we still haven’t gotten anything finalized with the lawyer but it would be great to know if the doctor was even “willing” to help out. All that we needed from him right now was to know that we could count on him at some point in the future.

I stressed that all I needed was for her to ask Dr Granite was for his help at some point in the future with a form that would state her condition and that her son (me) is her primary caretaker-sounds easy enough but the simplest things can be complicated in her present condition. I took great pains to be as specific as possible and prep her on exactly what to ask. To be fair, I was springing all of this on her just an hour before the appointment but I thought better last minute than days earlier when she might forget or get confused.

As expected, she had a ton of questions, and they just kept coming-from the obvious to the inane, I felt like I was being ravaged by a swarm of bees. Patiently (without scratching myself) I tried my best to answer all of them knowing that the more she asked and the more she knew, the more likely it was that she’d get confused. But, all I could do was hope for the best and remember what I’d learned in AA, “take the action and let go of the result”.

As I stood getting ready to leave she looked up at me from the sofa, looking like a little girl lost and said, “I don’t know why but I’m nervous all of sudden.”

I suddenly wondered if I’d put too much pressure on her by asking her to talk to the doctor, or if she felt nervous that she’s say too much or get it wrong. I told her that she didn’t have to worry about talking to the doctor about the form, she could just stick to her list of questions and I would take care of it if that made her feel more comfortable. I started for the door but couldn’t shake the vulnerable look on her face from my mind so I went back to her, gave her a hug and said that I hoped that would help ease her nerves. She smiled back at me and then we were off.

We waited for the doctor in the tiny exam room after the nurse went over Miss Cathy’s vital signs. Dr Granite came in soon after and they fell into their years old pattern of small talk; catching up on each other’s lives with a few laughs and jokes before settling into the business at hand.

When the doctor asked her if she had any questions she made a big production of bringing her crinkled piece of notebook paper out of her handbag and all kibitzing aside she became very business-like and serious as she went down her list asking about her arthritis, the nausea she had a few weeks ago and a “popping’ she felt in her knee. Satisfied with the answers (and most of all his reassurance that everything was fine) I could see her fidgeting a little, winding herself up for the “big” question.

After “hemming” and “haw-ing” a little she said, “Doctor, I want to ask you one more thing..” She started to stammer about “putting her affairs in order” and “a piece of paper the lawyer says she needs” and “wanting her children to be able to do as she instructed” (jeez, it was painful to listen to her but I let her finish because I was the one that asked her to speak to the doctor. And, as wrong as she got it and as exasperated as I was, I couldn’t help but be proud of her for trying).

I could see the doctor trying his best to understand her, his eyes trying to follow her train of thought, like watching a drunk trying to walk a straight line during a sobriety test and all you saw was them weave from point A to point B, still you hoped they’d get to the end somehow. He listened (patient man that he is) and then, seeing an opportunity when she paused (just for a second) he jumped in to venture a guess and said, “You’re talking about a form that states your wishes?” and she said, “Yes, that’s it!”

“You’re talking about a ‘living will”.(No, actually that’s not what she was talking about)

They smiled at each other, very satisfied with themselves that they’d figured out the riddle. He assured her that she didn’t need him to fill out that “form” and any lawyer could supply that document for her. She seemed a little confused but determined because knew she hadn’t succeeded in getting what I’d asked so she tried again to ask for his help but this time I jumped in before she lost him completely (and I had to listen to her struggle to get it right).

I told Dr Granite that we already had an Advanced Medical Directive in place and that’s not what we needed. I said that we (she) were working with a lawyer and putting together her Personal Care Plan and we might need his help filling out a form so that she can get a “Child caregiver exception” to help expedite the rules that Medicaid have set up to be accepted for long term care. He took a moment to digest the information then said, “sure, just bring me the form and I’d be happy to help.”

There was sign on the wall of his office (one that I’d never noticed before) that Miss Cathy had seen when we first walked in that stated that forms and other documents were to be filled out at the doctors discretion and will be billed separately from the patient’s insurance. I told her not to mention the sign but of course she did, she couldn’t help herself.

He shrugged and seemed to dismiss it saying that it’d been there for years (so I took this as a “sign” not to worry about it). Not satisfied (after the doctor had just agreed to help us and had all but told us to not worry about the sign) Miss Cathy just would stop talking about the sign and let the subject drop. Once again, as soon as I found an opening to cut her off (not in a mean or rude way-I just waited for her to take a breath, regardless of whether she had finished her thought or ended her sentence) I reminded her that it was the doctors’ office, hence his rules and to let him finish talking. She acquiesced and he continued, he told us that lately a lot of his patients had been turned down for long term care for one reason or another and that concerned him, but not to worry, he was willing to help in any way that he could.

Miss Cathy thanked him and before she got up go to another room to have some blood drawn as she has had done hundreds of times before she said, “I don’t know why but I’m nervous all of sudden.” And like Blanche Dubois in “A Streetcar named Desire” she innocently took the doctors hand as helped her up out of her seat to prepare for the short walk down a familiar hall.

Reaching out

Posted in June by

I was talking to my good friend Stefano the other day, telling him that I’d been reaching out to people on Facebook more and that I had “friend-ed” someone I knew through him. He told me that he had just told this same friend about my blog because his friend was going through a similar situation with his mother and suggested that we talk to one another.

I had no idea of his situation when I “friend-ed” him, only remembering that he’s an interesting person that I met in New York but was living in Europe that I hadn’t been in touch with for awhile. Well, I don’t believe in coincidences and wasn’t surprised when Lester, the friend and I were on the phone soon after talking about Alzheimer’s.

He told me that a little over a week ago he had flown to New York to visit his mom in Queens after being in Los Angeles for work. He said that he was surprised by how different his mom was, that he knew something was wrong with her and that something had to be done immediately to get her help. I listened to his story, verbally nodding in agreement and acknowledgement that I knew exactly what he was talking about as he related stories of her erratic behavior.

His situation is different from mine (of course, no two experiences with dementia are exactly alike). For one his father is still alive, but elderly himself so isn’t able to cope (mine is dead) and Lester’s brother lives on the West coast (and mine is only an hour away in Virginia) so he’s more or less doing all of this by himself but the end result is the same-he’s the adult child of a parent that now needs his help to guide her through the end of life as she guided him at the beginning.

I listened as he told about her conspiracy theories, paranoia, forgetfulness, confusion and his very real fear that she was going to get in a car accident because she was still driving herself to school where she still teaches. He said that she was very clever about how she covered up her shortcomings and had developed shrewd methods to compensate for her mental deterioration.

I could hear in his voice how tired and sad he was and there was a moment as we talked when I could hear the realization hit that his mother as he knew her may be gone forever.
I told him to think of her in a different light, to (take some time and) mourn the loss of the mother he knew but to remembered to hold onto the love (which is still there and always will be) and to focus on developing a new relationship and new bonds with her, as she will be ever changing because of the disease.

From all that he told me and all that he’d learned (and learned to do) in just a week’s time I told him that he’d done a remarkable job considering. I shared bits of my experience where it made sense but tried to be sensitive and remind myself that this wasn’t about me and my experience-this was about listening and hopefully helping someone who was just joining the “brotherhood”.

As we talked I made a few suggestions; I learned in AA years ago never to “tell” someone what to do, the normal reaction from most adults (and kids, too) is to put up a wall and become defensive when being “told” what to do so whatever you’re saying never gets a chance to be absorbed, processed or possibly acted upon.

So I “suggested” that he not argue with his mom and that right now “being 100% honest with her” (which was the basis of the relationship that he had with her before all this happened) wasn’t as important as getting her to the lab for an MRI and an appointment with a neurologist for a complete evaluation to determine what her condition is and at what stage. I told him that I’m very much of the “ends justifies the means” school and to lie to her if he had to achieve his goal which is to help her.

I told him about Alzheimers.org (an organization he said he didn’t know existed) and how helpful they’d been for me with everything from resources to support groups. I told him about the legal ramifications of what he was about to undertake and what he might need; power of attorney, medical directives, estate planning, etc as well as thinking about long term care facilities and how to plan for that. I could imagine that his head was about to explode form so much information coming at him all at once. He said that it was more than he had anticipated but that he was grateful.

The best piece of advice I gave him was one that was given to me early on by several people-that as a “caregiver” to make sure that he takes to take care of himself.

I didn’t really know what that meant in the beginning, so focused was I on my mom and her welfare that I wasn’t really doing the best job of taking care of myself, so I don’t think I was best prepared for the “marathon” that this process of care is instead of the ‘sprint” that I was my initial approach.

Truth be told, l think that I’m “just’ beginning to take care of myself (a year into this process) which definitely impacts how I can care for my mom. But, it takes what it takes and as Maya Angelou says, “When you know better, you do better”.

I told Lester that he wasn’t alone and that he could add me to list of people to call for support or if he ever just wanted to vent and have someone to listen (and not give advice, judgment or an opinion) I was here for him.

I got off the phone realizing that in talking to someone who was new to all this that I knew more than I thought I did. I was sorry for his situation but happy (for lack of a better word) that I could reach out and give what so many have given to me by way of support, empathy and information.

Happy Father’s Day

Posted in June by

“You know, you repeat yourself a lot.” I said, in a matter of fact voice (at least I hope it sounded non-judgmental or bitchy). Miss Cathy had just finished telling me something that she’d told me several times already; in fact I’d already heard the “exact” same story twice that day. I just thought she should know-thinking maybe it was something she didn’t realize she was doing.

“Oh really?” she said, seemingly unfazed. “Did I tell you that I called Adele to wish her a Happy Birthday?”

“No, you didn’t tell me that.” I answered.

“Well good, I’ll try not to repeat that one.” She said and we both laughed.

Cute, right…well, I thought so, and that was pretty much the way it’s been between us since I got back from my little “holiday” last weekend visiting my brother, Tony and his family. I was just gone one night but it gave both of us some time apart to re-charge. While I was away I checked in on Miss Cathy everyday and she was seemed to be having a great time.

I was feeling so “great” about everything that I spontaneously asked Miss Cathy if she wanted to go to the arts and crafts store yesterday to buy some artificial flowers for a vase that Ron (one of her many other “sons”) had given her for Mother’s Day. She’d been talking (a lot) about wanting me to select flowers for the vase because she liked the way I decorated the apartment and “put things together”. Since it was Father’s Day I thought there was a bit of symmetry to the outing and was happy that she accepted the invitation.

She seemed happy enough to be going out, we hadn’t been out together for anything other than doctor‘s appointments so it was nice to be doing something purely social. Since the arts and crafts store has a reputation for discounting things I was hoping to combine two of my favorite hobbies-shopping and bargain hunting.

No sooner had we left the complex and I turned the car in a direction she wasn’t expecting when she said, “Why are you going this way?”

“I’m going to the Beltway” I said.

“The Beltway?!” she exclaimed as if I’d suggested we walk. “Why are you going on the Beltway? All you have to do is get on 193 and take it all the way down. You’re going the long way there but it’s your gas.”

“Well, the Beltway is the way that I know so that’s what I’m going to do.” I said, not quite regretting my suggestion of the outing but getting a feeling I might. The last time she had me deviate from my mapquest printout we were leaving the “Grand opening” of a supermarket (at 7 am on a Wednesday no less), forty minutes into the turn she insisted I make she confessed that she didn’t know where we were going so a fifteen minute drive home took us an hour and a half because I listened to her. I made a vow to myself not to do that again and I was going to keep it.

The drive was quiet, more from the classical station being on and the windows rolled down so that we could take advantage of the cool late morning breeze than anything else (or so I thought).

I did miss one turn but it only added a few blocks to our final destination. For some reason, having Miss Cathy in the car makes me nervous, it might have something to do with the fact that she sits in the car with a death grip on the door handle and her head is constantly whipping looking for an oncoming collision. We’d already had it out about her ‘back seat driving’ so she sat silently (for the most part) but her body language was screaming directions, corrections and suggestions all the way from point A to point B.

Parked and ready to have at the clearance table I spied sitting in the front of the store I was hurriedly putting the handicapped tag over the rearview mirror when I heard, “when we go back just turn right at the light and go all the way down, I’m not going back on the Beltway.” “Makes no sense driving so fast, with all those cars.”

“Where’s that coming from?” I thought to myself but I said, “Well, I’m not going back that way, sorry.”

“See, that’s your problem, you don’t listen.” She said after she finally managed to lift herself out of the car and was toddling toward the entrance. “You just don’t listen,” she repeated,” you have to do everything your way.”

“I didn’t ask for your opinion,” I said to her back,” Jeez, I though I was doing something nice by bringing you out here.”

“I know you’re sick of me, “she shouted, startlingly me by this response, “I know you think I’m a nuisance and you don’t want to be bothered with me, I’ve known that for awhile now.” ‘Well, I’ll get my own damn car and you won’t have to worry about taking me anywhere, I’ll take my own damn self.”

“Well, I wasn’t sick of you till you started all of this,” I said retrieving the vase from the backseat” this day sure went to sh*t in a heartbeat”, suddenly tired of it all. Now that I was getting closer to the sale tables I saw that silk tulips were on sale for 60% off (usually an aphrodisiac for me) but they could have been free and I’d still want no part of them-that’s’ how turned off I was at that moment.

I wanted to be anywhere but there so I started to hand the vase to Miss Cathy and said, “Here you go, knock yourself out, I’m going to be in the car.”

She looked at the vase without taking it and said, “take me back home.”

Since things had been going so well and we’d been getting along so well I was surprised (to say the least) by her outburst. I’m sure it was a combination of her condition, what she perceived as my “speeding” and her inability to control the situation (which makes her anxious and irritable). Still, knowing all of that and remembering not to take her rants personally, I gotta say, it still hurt my feelings.

“Fine by me.” I thought, throwing the vase and what was left of my good mood back into the car.

Happy Father’s Day!

Folding chairs

Posted in June by

Last Friday morning I walked into the kitchen for my usual coffee before my brother and I were headed out for an appointment with a lawyer to go over Miss Cathy’s estate. Tony had come over the night before after work to surprise mom with the visit. I knew she was very happy to have “her boys” all to herself and would be in the kitchen whipping up a fattening, artery clogging breakfast as only a mother could.

So, I wasn’t surprised when I saw Miss Cathy standing over the sink but something wasn’t quite right. It only took me a second to know by her less than usual “peppy” response to my salutation and the way she was slumped over that something was wrong. I went over to her, looked at her face and saw that she looked confused and disoriented.

Perspiring heavily, it looked like she was gripping the counter for dear life so I told her I was going to put the folding chair behind her so that she could sit down. I didn’t know what was going on with her but I knew that it was imperative to sit her down before she fell down. She wasn’t very communicative and her movements were very slow, as if she were trying to show me that she understood what I was saying but her body just wasn’t responding the way she wanted.

She didn’t seem able to move much at all; she just seemed to hang on. Seeing that she wasn’t making much progress on her own I held under her armpits and helped guide her down to the chair as gently as possible, talking to her the entire time, telling her what I was doing and how far she had to go before she was seated, reminding her not to “plop” down in the chair which is her habit.

Once she was seated I was able to look at her more closely and ask her a few questions to determine whether she might have been having a heart attack or stroke. It didn’t appear that she was so I got her a glass of water and wiped her brow and neck. Once I got her to sit down she couldn’t seem to calm down, she squirmed with what little strength she had until finally I was able to quiet her. She then told me that she thought she as going to throw up.

I reached for the nearest thing I could (which was an empty planter) and gave that to her while I went to her bedroom where she told me she had a supply of bags for vomiting. When I got back she had not thrown up yet but she’d dropped the planter, unable to control her fingers. She retched more than she threw up but there was some fluid and it seemed to help her to expel it.

I was able to keep her calm enough to sit for a few more minutes before walking her to her bedroom so that she could lie down. In her bedroom I got her to sit quietly as I debated with myself whether or not to call her doctor but in the space of those moments I took deciding she seemed to get better, I could actually see that the confusion was leaving her face and her movements became more fluid.

We took her blood count and it elevated (222 and her blood sugar is usually in the 140 –to 150 range). By the time we made the first “stick” she was talking in her normal voice and insisting that she wanted to go back in the kitchen to make breakfast. We got her cleaned up and I made the decision not to call the doctor but to tell him abut this episode when we see him next (which will be soon). I watched her as she walked (she insisted that she could walk un-aided) back in the kitchen and I sat with her as she prepared breakfast for my brother and me.

I reminded her that if she had been alone this was one of those occasions when she should have pressed her “medical alert” button and she agreed. But watching her “in the moment” it concerns me now that I don’t know that she would have had the presence of mind to do that. I know for a fact that if I hadn’t come into the kitchen she wouldn’t have had the wherewithal to pull over the chair that was less that a foot away for her to sit herself down.

She may have been able to hold onto the counter until whatever it was, low blood sugar, excitement about my brother being here or just a wave of nausea passed, and then do whatever was necessary to keep herself safe but I don’t think that would have been the case. She very well could have fallen and we would (potentially) have a repeat of the episode that started this entire journey in January of last year when she fell on the bathroom floor and wasn’t discovered for three days.

I know that the slightest interruption (good or bad) in her routine can cause a change in how she acts or responds, from something as very subtle as her demeanor changing to something like what happened on Friday. I don’t know if that was the case or not, that’s something I’ll talk to the doctor about.

After all the bickering, boredom and cost to my personal life its moments like last Friday that remind me why I’m here and I’m grateful that I can be. Like my friend William says, who takes care of (not only) his mother but his father as well, “It’s an honor to be able to spend the time with them and to do whatever I can to make there lives more comfortable after all they’ve done for me.”