Water off a Duck’s Back: Pt. l

At what point should a caregiver ‘give up caring’?

When should you abandon a course of action that (you know) will benefit your loved one but they simply don’t want to do? When should your hopes and dreams for their wellness take a back seat to their fear and inflexibility?

These questions (and more) seem to swim around in my brain more often these days.

When I moved here to take care of Miss Cathy one of our first battles concerned the amount of exercise she was (not) doing. I’d already waved the white flag of defeat over her doing any sort of strengthening or toning exercise and decided to focus on walking.

I tried cajoling her, offering to walk with her (which believe me was no easy offer to make considering that she wobbles along at a pace that a turtle could easily overtake).

And I told her that I would help her by maintaining some sort of schedule but after one or two short (I’m talking less than an eighth of a mile short) walks, she simply wouldn’t go outside with any regularity, no matter what sort of ‘schedule’ she’d committed to.

Whenever I reminded her or prodded her to ‘take her walk’ she would let out any number of reasons why she ‘couldn’t’ (not that she wouldn’t, it’s just that there was some impediment in her way); it was (either) too cold, too hot, too late, too rainy or she was just too tired (from what I have no idea when her day consisted of moving between sitting on the living room sofa and laying in bed).

She got more mileage out of here excuses than her walking shoes would ever accrue.

I quickly found out that if I pushed her too far she had no trouble exercising her tongue and telling me to ‘back off and where I could get off’.

Miss Cathy could and would curse me out (not often but with enough regularity to warrant my being very aware of how far to push).

And the language…..Wowsa!….. Miss Cathy can swear like a sailor during a perfect storm without a wit of regret or worry that her ‘sweet little old lady’ card would be taken away if the ‘Old people potty mouth police’ could hear the vulgarities coming out of her mouth.

“Like water off a duck’s back”, I’d mumble to myself, a phrase I learned much to late from Jinxx Monsoon, the recent winner of RuPaul’s Drag Race. She’d use the phrase like a healing chant (and invisible shield) whenever some insult was hurled her way by one of the vicious queens competing against her.

Guess who’s coming to Breakfast: Pt. ll

It’s not easy watching Miss Cathy carry her anger and hurt about her family around like a wounded bird, gently tending to what’s broken yet ever ready to wage war lest it be taken advantage in its weakened state while trying to make peace with the damage done.

And just as sure as the sun follows the moon you could count on a diatribe whenever the tender subject of her families absence from her life comes up.

“I’ve been running up and down the highway for years taking care of them, taking time off from work, leaving my kids when they needed me”, she’d say, working herself up then her voice would calm down and her anger would turn wistful, “if I knew that this is the way that they would treat me….”

When her anger was spent she’d confess that she wouldn’t have done anything differently; she would still have gone to care for her mother when she was alive, even though there were siblings living right there in the same town (and on the same street).

She’d do it all again for any one of her three sisters or two brothers if they needed her.

Such is the nature of families, a conundrum wrapped in an enigma.

I can’t imagine how she feels.

She just always assumed her family would be there for her in kind.

Looking in on her life as I have the past three years, I can see that they care (evidenced by their phone calls) but no one seems to care enough to make time to visit.

That’s why I always refer to her family as ‘relatives of unknown origin’.

To me they’re not worth identifying or remembering as individuals when (for years now) the lot of them have displayed the same disappointing ‘group think’ and continue to offer up excuses and indifference instead of showing up.

In my book, it’s very simple “if you care-you’re there”…period.

Family is made up of more than blood and the happenstance of kin; family isn’t just order of birth and it isn’t a birthright.

‘Family’ are the people that love, support, and nurture each other. Family are the people that you can turn to, lean on and you always know that you can let down your defenses because they are there to defend you.

So, with the arrival the next day of mom’s sister in law, nephew and his wife it was gratifying to know that someone(s) in her family was finally making an effort.

Regardless of how long it’d taken or for whatever reasons they stayed away so long, the simple act of showing up is a powerful first step toward making themselves worthy of relatives being known.

Physician, Heal Thyself: Pt.Ve

Miss Cathy sat in the chair in the examination room and (for once) just listened (instead of interjecting herself into the conversation) as Dr GG and I squared off.

To be fair, we were talking about her just not to her, an unenviable position I’m sure but it’s more efficient for me to speak on her behalf (as it would be for any caregiver) than for the doctor to play twenty questions with the patient and have to try to interpret every answer for truthfulness and accuracy.

It wasn’t that the doctor and I were at odds, or having a disagreement really, we’d been in synch pretty much from the minute he walked in the room, it was only when I tried (and I knew better but couldn’t help myself) to get him to talk ‘smack’ about another doctor that I hit the ‘White wall’.

So, it was just a matter of me not having the energy to read between lines any more than mom could read the large capital letters projected on the wall that caused a kerfuffle.

I shouldn’t have tried to pit one doctor against another, but (after being exposed to a doctor that knew what he was doing) I didn’t need Dr GG to corroborate my suspicions.

I knew that it was time to bid adieu to Dr A and his fawning ways.

It was one thing to keep my opinions about Dr A to myself (or try to anyway) when her condition was more or less stable and quite another when she needed more than just someone holding her hand and calling her ‘mom’.

By the time we left his office alittle while later Dr GG had concluded that there was a possibility that mom’s confusion and loss of eyesight might be related to her Alzheimer’s but he couldn’t be sure.

He also suggested that we seek a second opinion from a Dementia Specialist (a ‘specialty’ that I did not know existed until he explained it all to me and it makes sense given the rise in diagnosis each year) and he said that he would consult with a colleague to get me some names of someone we could see.

It’s funny, all this time I thought I was doing the right thing by taking mom to a ‘neurologist’ but now I was wondering if I’d dropped the ball wasting my time on the ‘GP’ of the brain when there was someone out there skilled in her disease specifically….I felt like a yutz.

They say ‘hindsight is 20/20’ which Miss Cathy no longer had so I guess it’s better to look forward than back.

Before I could fall too far down the rabbit hole of ineffectiveness Dr GG (true to his word) emailed me a few days after our visit with the contact information of a prominent doctor that specialized in Dementia who headed a top University clinic not far from us in the Nation’s Capital.

Dr GG wrote that there were only a few Dementia Specialist in the country so I should be aware that the demand to see this doctor was high and that he rarely took on new patients.

Sounded like a challenge and if it was, I was up for it.

Come back Miss Cathy: Pt. V #CarefreeToCaregiver

I found myself back on the road, headed home.

I’d been parked the entire time I was having this internal debate just a few blocks from the restaurant downtown that was suppose to kick start my evening.

I was too embarrassed to walk the short distance to cancel in person so I called from the safety of my car.

As soon as I’d hung up I wondered if I’d have changed my mind and stayed if I’d gone inside the restaurant. Would I have sat down, ordered a drink, engaged my date in conversation and been able to be the person that I once was and longed to be again (at least for one night)?

The answer to that I will never know but my actions told me that it was time to stop looking back, longing for the life that I had and focus on how to create more balance in the life that I have now. Sometimes the greater challenge is accepting what is instead of expending energy trying to recreate what was.

I also made a promise to myself not to be angry with Miss Cathy.

Going back home was my decision and there was no reason to pout or act as if she’d done something wrong, she hadn’t, she was just being who she is, which is unpredictable and I was just going to have to accept that fact, too.

Once I was back at the condo I walked in, checked on her (as predicted she was back in bed wide awake and still agitated) so I sat with her for a moment so she could talk about what had happened.

In no time at all I could see that she was settling down and more relaxed because she was no longer alone.

I changed clothes (goodbye ‘carefree’ and hello ‘caregiver’) and in no time I was back into my nightly routine of washing dishes, straightening up the kitchen and setting the alarm, signaling that all was well and everyone (everyone meaning me) was in for the night as if just an hour before I hadn’t been out in the night.

As I often do, I walked through the apartment ‘fluffing and tucking’ stopping at the sliding glass doors that lead out onto the balcony.

I leaned my head against the cool glass and looked out over the complex, past the apartments across the parking lot, up to the sky, and it was then that I realized, agitated or not, confused or focused, in the past or present, manipulating me or being manipulated by her mind, Miss Cathy may be searching but she was always here….it was I who had to come back.


Noun: means great enjoyment, delight, pleasure, glee, satisfaction; humorous delectation.

“I appreciate everything you’re doing for me but I’m tired of going to all these doctors.” Miss Cathy said as we walked off the elevator in route to her latest appointment to see her new therapist.

Walking behind her (less like a Sherpa and more Bodyguard-meaning ‘guard of her body’ if she happens to fall) I thought to myself that I find it interesting that she forgets the day of the week, how to operate the can opener and whether or not she’s taken her meds but she never seems to forget how to complain.

But, for all her complaining before the thereapy sessions she seems and says that she feels better after.

It wasn’t exactly a fragile day (“fragile” are those days when she’s especially tired, confused and she looks as if the entire world is against her) but I could see that all the appointments of late to the various doctors were taking a toll on her.

My problem with her complaints (which are numerous and often) is that she just seems to be negative for the sake of being contrary.

No, it’s more than that, I get that she feels powerless; she can’t live alone, make decisions, drive, cook or even plan her own day for the most part, so I understand that the only thing she (may) feel she has control over is the ability to say “No”.

But, I also see (more often than not) that she’s not doing anything positive or constructive with her day (like exercising, going to adult daycare or anything else except lazing in bed watching TV and napping all day) that would prevent her from whatever it is that I’ve scheduled.

She may talk a good game about how she ‘loves to go places, talk to people, laughter, blah, blah’…but given the opportunity to engage with others (outside of talking on the telephone in her condo) and she will usually find an excuse to stay home and not participate.

Her therapy appointment is a good example.

She has an opportunity to talk her head off (to a captive audience no less) and after two sessions she was grousing that she didn’t want to go anymore.

“Well,” I replied, closing the door after we’d entered the office, relishing the opportunity to parrot back to her something that she’d said (and I loathed) my entire childhood, “Sometimes you have to do things that you don’t want to do.”

You’ll understand that someday when you’re a parent and You have a child she always said.

“Yeah, well I know that.” Her voice trailed off as she plopped into a chair, unaware of the irony in the reversal of roles.

Do I look fat in this life?

There are a lot of things that go into being a caregiver; some you know (and are prepared for) and there are other things you learn as you go.

I’ve found a lot of support these past two years from Alz.org, chat rooms and support group meetings but one thing that surprised me about this experience that seems to be overlooked and never really talked about (at least not to me) is the tendency for the caregiver to get FAT.

I look around at a lot of the caregivers that I’ve met and I see a lot of lard asses-mine especially. As Whoopi Goldberg quipped, “Once I thought someone was sneaking up behind me and when I turned to look I realized it was my own ass.”

I bring this up not to say that this happens all the time to everyone in my situation. No, there are a lot of caregivers who have been able to balance the enormity of their new roles without becoming enormous themselves.

But it did get me to thinking about the connection between the stress we’re under and obesity.

We all know that obesity is rampant in our society; poor diets and lack of exercise being two (obvious) reasons but stress has been linked as a contributing factor as well. For me, and I’m only talking about my own tonnage here, I found that there was so much to do in the beginning and so much change occurring that once I had my routines set up for my loved one and I had a chance to catch my breathe and focus on myself what I saw surprised me.

How did this happen and when did I let myself go?

I began to wonder, like the “freshman fifteen” that some young people gain during there first year of college; due to the change in environment, the stress and the anxiety of being on their own for the first time, is there a similar correlation for caregivers as we transition into a new environment, as well as the stress and anxiety of “Not” being on our own for the first time as well?

If freshman can be forgiven for their “fifteen”, is it possible for me to get a little understanding for my “Alzheimer’s eight” or the “Dementia dozen”?

Believe me, I take full responsibility for my rotund-ti-ty, as my role as caregiver has expanded so has my waistline. And while I never had Paul Ryan’s abs (and thankfully I never had his views on restricting women’s reproductive rights either) I would like to see my feet again some day.

It’s nobody’s fault but my own and intellectually I know what needs to be done to return to my former svelte self-eat less and exercise. But, that’s easier said than done when you’ve stressed, often lonely and lack the motivation to give yourself the time and energy you’ve poured into your charge.

It’s not that I’ve been “so” selfless, I’ve just been too tired to care and being out of my own environment and routines I’ve found that I’ve developed some really bad habits-namely eating too much of the wrong food and not moving my body any more than is necessary.

The reality is that at the end of a day running around looking after someone else the last thing I want to do is run for myself.

I used to go to the gym, walk (I’m a former four mile a day runner but I blew my knees out years ago and switched to walking long distances instead) and maintained a rigorous stretching and exercise routine.

I ate a healthy, varied diet of vegetables, fruits, chicken, fish, some red meat and low fat or sugar free desserts. It was satisfying, I didn’t feel deprived and it gave me the energy I needed to fuel my life.

Unfortunately, it seem that these days I’ve pretty much abandoned anything that’s healthy for whatever is quick and easy (which mean it’s usually something frozen, processed and full of sugar and/or sodium). And I greedily grab for any and everything that can give me a moment’s comfort or (faux) sense of relief from my daily life’s stresses (read: junk food and sweets).

This is a classic case of emotional eating and sublimation.

Think of it this way, while the anorexic or bulimic denies themselves food or regurgitate as a way to control one aspect of a life off-kilter, (maybe) my eating and sloth like existence is my way of “not” having to be in control when I have to be responsible for someone else all the time-for the first time.

Hmmmm, maybe I’m onto something here….but, like the person who tries to commit suicide-you’re trying to kill the wrong person….so, maybe I’m force-feeding the wrong person, too (metaphorically).

No, I’m not saying I should be strapping Miss Cathy to her bed and feeding her color coordinated food nonstop till she fattens up like a piece of veal (not to say that she’s not doing a pretty good of that all on here own)…but I digress.

No, what I think my “light bulb” moment is telling me is that what I’ve been doing by engaging in behavior that I know is bad (and bad for me) is that I’m punishing myself instead of expressing the anger I feel toward my charge and the difficult situation I find myself in but was unprepared for emotionally (unknowingly).

So, I turn to food (that tasty panacea) and inertia; depression, denial and frustration all seem to more palatable when you’re prostrate with a plate.

Great, now that I’ve acknowledged the obvious I hope it’ll help when the cookies are calling me at midnight when I decide to stay up and watch “Shoah”.

While I seriously doubt that anything will change overnight with this revelation I do know that the first step to solving a problem is acknowledging it. I didn’t exactly work up a sweat thinking this through but I do think it was an exercise worth pursuing.

Who knows, now that the mind has been stimulated maybe I’ll surprise myself next by moving my body…….even if it’s just to push back from the table.


It’s been said that every one of us has an identical twin, a “doppelganger”, walking amongst us somewhere on the planet. Your replicant could be in the next town or in Abu Dhabi, looking like you, sounding like you and living exactly the way you do here and now.

Lately though I’ve been seeing a variation on the Doppelganger; women that don’t look exactly like my mother but they posses her essence and a lot of her physical characteristics-a “Doppelgang-ette” as it were.

And they are everywhere it seems, in the Malls, downtown, in restaurants, but mostly I see them when I’m in the grocery store. I see little old women wobbling along behind their carts as they push them through the aisles. I don’t know whether their gait is because of bad feet, arthritis, having walked a lifetime of working and caring for others or if (at this stage of life) it’s because of a knee replacement (or two), or from carrying a lifetime of extra weight and worry.

The way these women walk, rolling from side to side as they move forward, reminds me of a popular toy for toddlers that was advertised on television over and over when I was a kid. I see these women and I can’t help but hear part of the jingle in my head, “Weebels wobble but they don’t fall down”-only most of these wobblers need the same medical alert necklace that Miss Cathy wears (Help! I’ve fallen and I can’t get up!) Because unfortunately, unlike the toy- they will fall down.

It doesn’t matter their race or color, they all share the same “old” DNA, a penchant for loose comfortable dresses or elastic waisted pants of a non-porous material and makeup that has evolved from wanting attention in youth to commanding respect in their golden years.

I watch them as they make their way to the cashier to check out and some are pulling out their coupons (as I’ve learned to do) while others look worried as the register totals an amount that may exceed their budget for the week.

I applaud them being self-sufficient, by necessity or design, because they are usually alone, no husband, friend or adult child to reach for something on a top shelf, or to bend waaaay down for something they need but have to decide if it’s worth the effort or not.

A little over a year ago Miss Cathy was one of them, wobbling along, up and down the aisles marking time and making do as her memory started to fail and daily life became harder and harder. I can only imagine how hard it must have been for her to shop; never knowing that when she returned home only to realize that she forgotten what she really went to the store to buy or came home to discover that she’d already purchased the same items just a few days before.

What must she have said to herself when she found that her world was getting smaller and smaller and that within the year she’d soon “choose” to stop driving long distances to visit her son in Virginia or travel to a casino for an afternoon of her beloved game of quarter slots and that the market a mere mile away would be about as far as she would venture from home.

I watch them; the doppelgang-ettes and I wonder, “Who is home waiting for them?” Do they have any maladies and if so, is someone there to care for them? As they drive away do they worry that this may be the day that they get into a car accident or forget the way home? And when they make it safely to their destination is there someone on that end to take in the heavy bags that the clerk wheeled out to her car and placed in the trunk for her?

I see these women and I see Miss Cathy.

Paper Chase Part ll

A few weeks after my phone call with the lawyer, Cheryl Henderson, I attended her estate-planning workshop with about a dozen other people, all of us eager to find out how best to take care of our loved ones. While there was some valuable information shared and I learned a few new things, it mostly validated the work that my brother and I had already done on Miss Cathy’s behalf. Back when Miss Cathy was fist diagnosed with dementia in January of 2010 it was Tony’s idea that we draw up a POA (Power of Attorney) and a Medical Advance Directive, turns out these were the two documents at the workshop that were stressed as the “foundation of any good estate planning” because without them one has very little power or control in matters concerning their loved one in times of need. Knowing that we’d done something right (and were on the right track without even knowing it) made me feel pretty good about the choices we were making for our mother.

I mean lets face it, we were doing our best and what we were doing was out of love for our parent but “love” isn’t going to going to convince a doctor to follow your orders in a medical emergency, you gotta have the right paperwork-and you’re going to need it before you have to decide whether to pull a plug or switch somebody off.

Anyway, I was impressed enough with the seminar (and the lawyer) to suggest to my brother that we meet with her. After comparing everyone’s schedules and going back and forth a few times I was able to make an appointment for early June (remember I started this process in late April). That gave me plenty of time to fine-tune my list of questions for the meeting (after gaining a better idea of what to expect from the seminar and a clearer understanding of the process we were about to undertake).

I was most intrigued by the “Veteran’s Aid and Attendance Benefit” so my first order of business after the seminar was to call the Veteran’s Administration. I was on hold for about fifteen minutes (whattayougonnado) but ultimately it was worth it because the representative was very helpful when he finally came on the line. I found out that our situation isn’t as straight forward as some others because my step-father served during World War ll and record keeping was spotty back then so Eddie, the representative didn’t immediately find him in the system but he assured me that just because my Pop wasn’t showing up on his computer that he could be found somewhere, somehow.

I think that anyone that’s going to call the VA to inquire about a deceased Veteran should have the Vet’s social security number and (more importantly) their discharge papers when you call (the more information you have when you call a government agency the better!) and always, always document your call by asking for the representative’s name, a case number and be sure to note the day/time of your call (that’s a little “Ty tip”;).

Having this information at the ready is helpful as you follow up with questions at another time because chances are that whomever you speak to is going to ask who you spoke to previously.

Eddie was able to give me some basic information as to how my mother could possibly qualify for the little known monthly stipend paid to widows of war vets. As expected, the paperwork is extensive and to qualify you have to be practically destitute but “nothing ventured (except time) by applying and there could be as much as a thousand dollars a month for Miss Cathy to gain based on need. The representative promised to mail the necessary forms and information to me (info is also available on the Veteran’s Administration website at http://www.va.org).

If you find the website as complicated as I did, it may be well worth the wait to call the VA at: 800-827-1000 (just make sure you have your knitting or a crack pipe to suck on while you’re on hold waiting to speak to someone-another “Ty tip”;)

Later that week Tony and I had a phone meeting to go over what I’d learned and to talk about what we (each) wanted to accomplish at the meeting with the lawyer. My brother and I work very well together and it definitely helps to talk things over before speaking on our mother’s behalf so that we’re on the same page. Even though we’re family and we have the same goals our approach may sometimes be different as to how to get there so I always think it’s best to compare notes ahead of time so that we show a united front. The system; doctors, hospitals, lawyers and the like can sometimes be less than welcoming to loves ones of a person in need so the last thing they want to encounter is bickering siblings with divergent agendas.

We decided to bring as much documentation that we thought might be necessary (Miss Cathy’s social security card, deed, will, bank account, as well as some of our deceased step-father’s information). I think there’s nothing worse than being asked for something in a meeting that you “thought you might need” but don’t have with you so why not bring it along-just in case, after all, it’s just paper.

The laywer’s office was quiet and serene on the day we had our meeting, it was not crowded and buzzing with activity the way it was on the day I came for the estate-planning seminar. The receptionist led us into the conference room where I sat weeks earlier but this time there we only three of us in the room.

After introductions we settled into our seats and began. Cheryl told us about herself and her practice (more for my brother’s benefit because I’d already heard her spiel). When she asked why we were there we took that as our cue to dive right in. Tony told her what we wanted to do and I read to her our list of questions. We finished by asking her if she could help us.

She listened to what we had to say and took notes about our questions, then Cheryl told us that there were a few ways to accomplish what we wanted then she gave us the pros and cons of each scenario. At one point she said, “If I had “this or that” document then I would be able to tell you “such and such”, and wouldn’t you know it-we had most of what she was asking for so we were able to get specific information from her about our situation and quickly more away from generalities.

We discussed Irrevocable Trusts, Revocable Trusts, Life Estate (Ladybird) Deeds, Personal Care Agreement, Medicaid and the VA Aid and Attendance benefit and tax implications among other things.

One of the things we realized after talking with the her is that a will is not a great option for us; probate can be expensive and the estate (what little there is) could be tied up in the courts for up to a year (something to think about when you’re planning for those left behind after your loved one has passed away). It sounds as though one of the Trusts is better suited for our needs to accomplish what Miss Cathy wants to happened with her things and the Personal Care Agreement will help take care of planning for her inevitable stay in a nursing home.

As for Medicaid, it’s a great government program that pays for long term nursing home care, but the individual is responsible for a portion (if not all of the expenses associated with the nursing home) if the individual goes into a nursing home before the five-year period after they have applied. The “five year look-back” determines the individual’s financial situation and there ability to pay for their own care, so the clock starts ticking only “after” you apply so, the sooner the better. If your loved one goes into a nursing home five years after you apply then the gov’t pays for everything. If they have to go in before, then they (or you) will be responsible for the nursing home costs until the five-year time “window” is closed.

It’s important to know that Medicaid will never take someone’s house while they are alive, but monies owed for care will be recuperated after the sale of the home upon the person’s death unless other arrangements have been made to dispose of the property and/or have the home exempt as an asset that Medicaid can put a lien on.

As you can imagine, the meeting lasted well over an hour and by the time we left my head was swimming with all the info that was floating around in it. Thank God Tony was there because I needed him to help me figure out what the hell was said in the meeting and what works best for us.

After much discussion we’ve decided to move forward with the Personal Care agreement (which includes help applying for the Veteran’s Aid and Attendance Benefit) as well as an Irrevocable Trust.

So, now we’re gearing up up to meet with the lawyer one more time in early August to get the ball rolling and so that Cheryl can meet Miss Cathy. In the interim I’ve been gathering the following documents and paperwork for our next meeting; Marriage and divorce decrees and certificates, Death certificates, Birth certificates, Deeds, Bank accounts, Military discharge papers, Monthly household expenses, Names of doctors and hospital visits, Social security award letter, Physician’s statement and Proof of income-Oye Vey! That’s a lot of paper!

I know that we’re among the lucky ones because Miss Cathy is still able to be part of the planning and the process. She can express to us what she wants to happen to her (and her things) after she’s gone so we can all work together to make that happen. A lot of people don’t have the luxury of their parent’s cooperation and input; one in particular comes to mind. I have a friend who’s parent is much farther along in the disease than my mother so he doesn’t have his parent’s input or cooperation, he’s acting alone to plan for long term care and doing the best he can to decide what happens “after”. Unfortunately (and this is an oft told tale) he and his loved one are at odds because his parent’s dementia makes him not able to fully understand what is happening so he’s combative and his behavior is often detrimental to the process (of their adult child making preparations for the parent’s long term care and passing).

I think it’s important to be able to honor your loved one’s wishes and provide for their needs as best as possible and at the same time take in consideration those left behind and the burden they may have to bear. Death and dying and long-term care can be uncomfortable conversations to have but they’re important and you’ve got to have them, especially if your loved one is capable talking about those things.

Alzheimer’s is a baffling and cunning disease so if your parent or loved one is in the early stages, start the conversation now-if there disease has progressed past the point of their involvement then do your best to honor them as you see fit-after all, you’re among (or you are) the closest person to them and I always feel that if you’re acting from a place of love then whatever action you take can’t be wrong.

So, I know we’re lucky and I know that even with all the paper I have to chase it’s worth it so that Miss Cathy’s wishes are honored and she’s taken care of properly. The more I can do now the better chance that no one (i.e.-me) is buried under a mountain of red-tape and paperwork down the road.

Reaching out

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

“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!