Valley of the Dolls: Pt. l

Some days it seems my whole life is pills, pills, pills…or “dolls” as Neely refers to them in the film “Vally of the Dolls”

Miss Neely O’Hara is played by a woefully miscast but brilliantly over the top Patty Duke, trying to earn some adult film role cred after years of playing a dual role as teenaged (get this) “twin” cousins on the popular television show “The Patty Duke Show”

“Gimme my dolls!” she screams at one point to obliterate her pain (or the pain of screaming lines like those).

But, I digress; the pills that rule my life are not ones that I’m screaming for (although Neely may have been onto something).

No, the colorful little pellets I refer to are the prescription medications for Miss Cathy’s daily consumption.

In the mornings she takes:

1) Vitamin D3 1000iu (1 per day) For Bone Health
2) Vitamin B-12 (1 per day) Keep the body’s nerve and
blood cells healthy
3) Losartan Potassium 25mg (1 per day) For High Blood Pressure
4) Folic Acid 1mg (1 per day) For Memory
5) Amlodipine Besylate 10mg (1 per day) For High Blood Pressure
6) Metformin 500 mg (2 per day) For Type 2 Diabetes
7) Escitaopram 5 mg (1 per day) For Anxiety

In the evening she takes:

1) Aspirin 81mg (1 per at nite) Prevention of Blood Clots
2) Donepezil 5mg (1 per at nite) For Alzheimer’s
3) Namenda XR 28mg (1 per at nite) For Alzheimer’s
4) Metformin 500 mg (1 per at nite) For Type 2 Diabetes

As you can see, it’s quite the list and now her neurologists want to add to it!

Time to step back and see if Miss Cathy can fit another ‘doll’ on her shelve.

Before I present the best possible options to mom for her consideration, I (along with her doctor(s) need to access the benefits, effectiveness, side effects, costs and toll of all these medications on her system.


A Caregiver’s Online Guide: TyTips on how to care for your loved one: Pt. ll

4) Don’t ask your loved one to do something that you know they cannot do:

Sometimes we think that a loved one is being ‘lazy’ or not living up to their potential but the reality is that when you see that they are struggling to perform a task (that was previously not a challenge to them) it may be a sign that their disease is progressing, instead of insisting that they ‘can’ do whatever it is that they cannot, accept this as fact and move on

Do not berate them or think that you can turn this into a ‘teaching moment’, in most cases this exercise will only end in their frustration and your anger and disappointment

5) Find a space that is yours:

It’s important to have a room or place where you can go to relax, unwind or decompress from the stress of caring for a loved one

It’s important to create a space that is yours alone to retreat to is yours alone

6) Say good-bye to ‘who’ they used to be and hello to the person they are now:

Trying to get your loved one to ‘act’ or ‘react’ the why they did before they started on the spiral down into dementia is futile

Make peace with the person they are ‘now’ and adjust your expectations and requirements accordingly

Best to mourn the loss of who they used to be and be grateful for the moments when there is a flicker of their former selves

7) Keep to your schedule:

Loved ones with dementia respond well to structure and routine

Do your best to be consistent in your actions and deeds

(For example:

If you say you will take them somewhere at a specific time-do not be late!

If they are used to bath time being at 7 pm-don’t start turn on the shower at 7:30pm!

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience

Hair today (not) washed tomorrow: Pt. lll

Arguing with Miss Cathy about washing her hair was about as useful as ‘tits on a bull’.

After weeks and days, and years and months of trying to convince her to do something different about caring for her ‘do’ I’d exhausted all reason and patience; if I weren’t already bald I’d have pulled my hair out.

My frustration was only topped by my disappointment in myself for arguing with her about the subject in the first place.

I (thought) I’d learned from my caregivers support group that you should never argue with someone with dementia, you’d never win so what’s the point.

Oh well, those fights are all ‘hair down the drain’ so there’s no sense dwelling on the past.

I realized that what I needed to do was ‘something different’.

After all, Einstein said, “the definition of insanity is doing the same thing over and over and expecting a different result” and all my haranguing Miss Cathy about washing her hair definitely qualified as ‘insane’…100% justified, but still….

I knew I had to try a different tack and it came to me when I realized that she hadn’t been to the hair salon in quite some time.

In the past I let her make all the arrangements to ‘get her do did’ but we see how well that’s not working so it was time for me to add ‘grooming secretary’ to the ever-expanding list of things I do for her because she can no longer do for herself.

I called the salon to make an appointment and it was then that I realized the solution to my problem.

When the appointed day arrived I drove Miss Cathy (as usual) but instead of just opening the car door and leaving her to her own devises I went inside with her; 1) to handle the business transaction because she’s now at a point where money confuses her so I don’t want her to be taken advantage of and b) to speak with her stylist for a moment.

When the hairdresser came to the reception stand I introduced myself and before handing off Miss Cathy to her care I asked how often ‘one’ should wash their hair after having a chemical curl?

Her reply was “whenever you want but at least every two weeks” (which surprised me that one could go that long without shampooing but that’s besides the point).

The point was that I knew Miss Cathy has great respect for ‘professionals’ and now she’s heard from a hair-care professional about what was acceptable hair care (and not from me-her son, a ‘lay-person’).

And the stylist just so happened to be African-American (so mom can keep the race card in her deck and save it for some other argument).

I thanked the hairdresser for the information, and didn’t say a word to Miss Cathy except to tell her what time I’d be back to pick her up.

Two weeks to the morning after she’d been to the salon I announced that it was ‘wash day’, she acknowledged that she heard me but with about as much enthusiasm as if I’d said it was ‘enema day’.

When it got to be afternoon and time was fast approaching for her to beach herself in bed I had a ‘light bulb’ moment and instead of reminding her of what she ‘didn’t want to do’ I offered to wash her hair for her…and she accepted!

So, now I have shampoo days on the calendar along with all her other appointments and reminders.

Now, if I could only get the rest of her body immersed in water more often than her hair…oh well, there in lies the rub, “a dub-dub”.

Hair today (not) washed tomorrow: Pt. ll

I find no pleasure in harassing Miss Cathy about her hair.

I know it’s embarrassing, and I know it’s a hard thing to hear, what parent wants their child telling them ‘they need to wash their hair’…never mind that the ‘child’ in question is fifty-four years old.

Mom’s issues around taking a shower (more specifically refusing to wash her hair on a regular basis) are bordering on the pathological.

She insists that “I don’t know what l’m talking about” when it comes to her hair care.

Her ‘go to’ defense is that I don’t understand because ‘I’m a man’ (as if the addition of a Y chromosome has anything to do with the maintenance of the follicles on top of one’s head, which are identical regardless of sex, but facts and science don’t seem to dissuade her from her argument-much like the Republicans members of the Tea Party).

Her other line of reasoning (if you can call it that) is that I don’t understand because ‘she has a ‘chemical curl’.

For those readers that are not African-American, think the opposite of the “perm” you went to the Salon to get back in the 70’s to make your straight hair curly, blacks go to their hairstylist to straighten their natural curl so, somehow (in her mind) the fact that her hair’s been treated exempts her from the routines of regular shampooing.

I find both lines of defense equally irrelevant because a) hair is hair-no matter on whose head it lies and 2) in my youth I’d been to more salons and had my hair “fried, dyed and laid to the side” more times than I care admit or that she’s ever likely to subject her hair to and c) who gives a sh*t if your hair is chemically treated or natural!

Hair is hair and non-washed hair is still unclean hair, no matter what a person’s done to it.

The last time we argued she told me that I don’t understand because, “black hair is different” at which point I looked at her as if she’d completely lost her mind and said,
“Just who do you think you’re talking to? What do you think I am?”

“Are you kidding me?!”

I’ve always found the ‘it’s a black thang’ a lazy (and obvious) argument between the races so imagine my disappointment (and surprise) that she was trying to play the ‘race’ card-and against her own race (not to mention her own flesh and blood…unless she forget to tell me that I’m some immaculately conceived progeny that’s been checking the wrong ethnic box on the census all these years).

Anyway, there’s Alzheimer’s and there’s just plain old “whatchu talkin’ about Miss Cathy?”

Hair today, (not) washed tomorrow: Pt. l

I’ve found that some of the most combustible exchanges with the loved one in my charge revolve around hygiene.

You’d expect this to be true if it were a child in my care but I’m referring to the seventy-five (going on five) year old Miss Cathy.

Since becoming my mother’s caregiver 3+ years ago we’ve clashed over many things; cooking (she shouldn’t) exercise (she should) and various and sundry other issues but none seem to bubble over the side of the tub of reason and burst into an argument the way the topic of bathing and washing her hair do (does).

I’m not sure if it’s the reversal of roles, the child now parenting the parent or embarrassment; although after wiping your parents’ rear after helping them in the bathroom you’d think that ship had long since sailed.

Believe me, it’s not that I want to be the “bath bully” anymore than I want to be on “poo patrol” but Alzheimer’s isn’t just about reminding your loved one where they put their favorite blouse.

It can start off that way, all clean and innocent; a misplaced book here, a forgotten appointment there, and if that’s where you are in the disease with your loved one…enjoy!

In time you will look back on all the frustration and change you faced during the first stage of the diagnosis and realize that those were the “Halcyon days”.

As for my current dilemma I am at a quandary as to what I should do; ‘rinse’ (leave her alone) or ‘repeat’ (continue to motivate her to be better).

Sure, it would be ‘easy’ to let Miss Cathy have her way and just open a window while she sat around in her own funk, and look away as she scratched at Lord knows what could be marinating in her unwashed coif but who said any of this was going to be easy? And if they did-nobody said it to me.

Besides, what kind of caregiver would I be, let alone son to a mother he purports to care about if I didn’t do those things that were uncomfortable (for me) and maddening (for her) but ultimately in the best interest of my loved one.

So, I refuse to let her standards of hygiene slip (ones she instilled in me, by the way) even if she’s forgotten them.

If I can’t get her to “wash yo ass” as she so often (and not so delicately) barked at my brother and me to do when we were growing up then at least I could try to get her to wash her hair more often (‘often’ being a relative term and our current bone of contention).

Hair today-the rest of the body tomorrow……

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You people?”

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

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

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

Requiem for a small kitchen appliance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#JeNeRegretteRien (I regret nothing)

My purpose in these posts is not to kvetch about being a caregiver.

Telling my story (by writing it down as best I can) is my way of remembering before I forget the beginning, middle and in-between of Alzheimer’s and it’s affects on one family.

Sure, I complain, I’m the first admit that.

I rail against the day in/day out difficulties and vent my frustrations but that doesn’t mean I ‘want out’ or that I’m not committed to caring for my loved one, Miss Cathy, the best way I know how.

And let’s face it, I’ve fumbled a few times but I’ve never dropped the ball (which in this case would be my mother when I had to carry her once) so I admit I’m a work in progress.

But, like Maya Angleou says, “When you know better, you do better.”

I might learn to do better, but I doubt I’ll stop bitching along the way.

I remember the day years ago soon after my mother was diagnosed and I decided (without being asked) to become her caregiver (something I hadn’t done since the early days of the AIDS epidemic when it ravaged my gay community and I found myself caring for someone I loved for the first (but not the last) time).

So I knew the commitment I was taking on (even though it was a different disease, a different relationship and a different time) but nonetheless my decision was as easy to make then as it was before.

We all know how easy it is to say that we love, and it’s not often in life that we are given the opportunity to show how we love and show up for a loved one, and in those moments we get to see ourselves for who we really are.

Love means being there for someone else when they need you, not when you want to be there for them or when it’s convenient for you or your life.

Love, to me, between a person and their parent, spouse, sibling or friend is defined by the depth of their willingness to give, to receive and sometimes (maybe, more importantly) their capacity to forgive.

So, if I’ve sounded as if I’m complaining (and lets face it, sometimes I am, actually) that’s okay as long as I show up each day for the commitment that I’ve made (not to Miss Cathy or anyone else so much as) to myself.

I’m just letting off steam, being vulnerable, and posting questions as I stumble through what is one of the hardest things l have ever done or will possibly ever do, finding answers and support from (sometimes) the unlikeliest of people and places.

When I made my decision to leave my life to join Miss Cathy’s it was so that she could live out as much of her life in the home that she loves before the disease progressed to the point where there was no more there, there.

It’s been three years and three months since I moved in with her and so far, so there.

I’m happy to report that she’s not there yet so life goes on for now, just me and Miss Cathy.

To me it’s very simple, “when you care-you come”, the rest is just words.

So, when it comes to love and my loved ones, in the words sung by the late, great “Little Sparrow” Edith Piaf f-9439893″>, “I regret nothing”.

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

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

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

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

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

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

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

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

“Can I speak to the doctor?”

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

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

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

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

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

The Group: Pt. Xll

The meeting wound down and I was surprised that an hour and a half had passed so quickly.

As I packed up my things; notebook, pen, some brochures that were passed round the table containing information on Alzheimer’s, and other pamphlets written specifically for caregivers, I looked around the room and at the people in it and knew that I’d be back.

I was glad that I came and had to admit to myself that I was an ass for pre-judging these women, the process and for thinking I was wasting my time-I couldn’t have been more wrong.

The truth is that I wish I’d come sooner but no point in getting lost in “woulda, coulda, shoulda”, I came to the meeting when I did so that was when I was suppose to begin this part of my journey.

I was leaving with the knowledge that to be a caregiver, in the presence of other caregivers and be able to share information and stories is a rare and wonderful opportunity.

It was a great feeling to be ‘heard’ by those that know of what you speak, and to be part of a group that can validate one another’s experiences is truly unique (there’s nothing like be in the trenches with someone who’s fighting the same war).

And by living a common experience and coming together to share what we live and know, I saw first hand (or first ‘eyes’ to mix a metaphor but properly term it) that the comfort we provide one other (sometimes just by a wink, a nod, or a hearty embrace) can give us the fuel to sustain and maintain (self and sanity) as we go back to our lives as caregivers.

What I also realized as I looked around the room at the people in it is that we are more alike than we are different; bound by a common experience that transcends gender, age, race or class.

So, even thought there are people out there in the world (that I already know, and know they love and support me), the support group has become important to me, and it gives me solace to know that I am not alone, that there are other caregivers just like me (who just happen to look nothing like me).

Update: I’ve been back to the group more or less faithfully, twice a month for the past several months since that first meeting back in May 2013.