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.

#Relish


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.

Therapy Pt. ll: #CyberPaperTiger


Our family meeting was on a Saturday so first thing the following Monday morning I was up early researching therapists to make Miss Cathy some appointments. The first call I made was to Dr G, her family doctor, he’s the doctor that’s known her longest and she respects the most.

Just like in business, it’s always smart to network with those that you respect and healthcare is no exception.

These days the instinct is to type ‘Therapist’ into Google but I think it’s best to have a referral (if possible) from a doctor who knows your loved one so that there is (hopefully) a personal connection when they are giving you a therapist’s contact information.

Unfortunately I did not feel ‘connected’ to the therapist Dr G recommended.

The therapists’ office was located nearby which is convenient but unlike in real estate it’s not just about “location, location, location”.

I’d called to set up a consultation with the therapist’s office and almost immediately I was turned off by the receptionist’s Priorities. She seemed to be much more focused with how the practice was going to be paid than with information about a potential new client.

Believe me, I know that the medical field is a business and everybody is out to “get paid” but can’t we at least have a modicum of pretense that it’s about the patient and not “the paper”?

The person that I spoke with also referred me to the practices’ website where “I” was to download, print out and fill out several forms to bring to the first meeting (information regarding payment-first and foremost).

While asking for a dossier (even before one sees a doctor) is quite common these days I just didn’t get a great feeling from the elitism of it all.

What if I didn’t own a computer, printer or have an Internet connection? Isn’t it awfully presumptive of a person’s status on the part of the doctor’s office?

And it’s not like we’re talking about making a ‘Ped’s’ appointment for a child here, this is an appointment for someone that’s almost an octogenarian.

Suppose Miss Cathy was the one calling to set up the consultation, can you imagine her trying to navigate the homepage, ‘clicking’ on links, going from ‘new patients’ to ‘forms’ to…well, you get the picture, besides, I don’t think mom has turned on a computer since she retired from the Veterans’ Administration back in Nineteen hundred and ninety three…enough said.

It just seems to me to be alittle insensitive for someone who supposedly specializes in geriatric counseling to put a 21st century burden on people born in the early part of the 20th century, is he a “Therapist’ or a ‘Cyber Paper Tiger’?

Home


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

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

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

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

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

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

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

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

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

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

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

As time goes by


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

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

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

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

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

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

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

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

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

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

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

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

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

Bed(time) Story


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.

I’m okay, You Okay? Part l


Standing in my bedroom I could sense “something” coming before I could see or feel it. I guess it’s kinda like the intuition that animals have before something bad in nature occurs, only I’m not feral enough to know what it means or when you’re suppose to run.

Before I could make sense of what was happening the room started shaking and everything around me was moving; the walls, the floor, all vibrating as if it were an everyday occurrence and it was the room’s time to come alive. A lamp on a bookshelf across from me started to fall and I knew that I couldn’t reach it in time but I instinctively reached out to steady the things nearest me as I watched the lamp tumble and bounce for a second or two as the floor moved beneath me.

I stood there, staring at the lamp; the shade crooked, at an odd angle, like it was a person who’s neck had been broken in a fall. Suddenly, pulled out of my dark reverie, I remembered that there was something more important than the lamp or the objects I was holding so I started down the hall to find Miss Cathy.

In the few seconds it took to reach her in the dining room all was calm. I could see that she was visibly shaking as she asked, “What was that?”

“It was an earthquake”, I said plainly, her reaction clearly that of someone who didn’t quite believe what she’d just heard.

I couldn’t blame her really; it’s not the first thing you’d think would be happening, this wasn’t Los Angeles or San Francisco, we were on the East coast, very close to Washington DC where we only read about such occurrences. The only reason I knew with any certainty was because I had experienced an earthquake before. It happened in New York City in the early ‘80’s when I lived on the fifth floor of a six-story apartment building in the East Village.

It was the middle of the night and I remember waking up to what sounded like a loud crash, I thought a semi or some other large vehicle had slammed into the side of our building, that would “explain” the noise but then the entire apartment started to shake. I held onto the bed for dear life not knowing how to process what I was seeing and feeling.

It ended almost as soon as it started but those seconds felt like hours while it was going on, after the vibrations and sound of things falling and shifting there was an eerie quiet that (to me) rang in my ears as loud as the quake itself. There was no major damage from that quake but it was recorded at 5.0 and something that hadn’t happened in New York in more than a century.

Although I didn’t know the official number for our area (yet) it definitely felt a lot milder than what I’ve experienced before. But, being as it was mom’s first quake it didn’t matter if it registered as 1.0 or 10.0-it was just as upsetting.

My instincts told me that the worse was over so I got Miss Cathy settled on the sofa and I walked back through the condo to check to see if there was any damage. I “right-ed” pictures that were askew and picked up objects that had toppled over.

I received a text from my ex, Chad asking “U ok?” and I text’d back, ”I’m ok, u ok” not knowing if he-in the Midwest (or the entire country for that matter) had just experienced the same thing. He’d contacted me so soon after it happened here that I just assumed the same thing was happening to him (later he told me that he was in his car when the news came on the radio so he text’d me right away concerned about Miss Cathy and me).

I rejoined mom in the living room and watched the TV with her. The news reporter announced that a earthquake had just hit a majority of the East coast, registering 5.9 at the epicenter in Mineral, Virginia, about 80 miles away from where we lived. Miss Cathy (now convinced) sat in amazement, digesting what she was hearing and seeing.

“I thought something was going on upstairs in Ron’s apartment.” she said, “I heard this rumpling sound and I looked up at the ceiling fan and I thought it was odd that it was shaking so I thought he fell or dropped something heavy up there to make it move like that.”

She tried calling his apartment but the phone wasn’t working.

Looking out the sliding glass doors that lead to the balcony I could see that neighbors from the apartment complex across the parking lot were streaming outside, coming together as people seem to do when a common experience occurs, huddled together trying to make sense of what had just happened.

“I’m just so nervous, I can’t stop shaking.” She said, “ I didn’t know what in the world was happening, how did you know it was an earthquake?”

I reminded her of my long ago experience in New York and how it’s such a strange feeling that once it’s happened you never forget it.

She seemed to be handling it all pretty well, I thought. I was concerned about her shaking but I wondered if that wasn’t adrenaline-you know, the whole “fight or flight” feeling that takes over our bodies when situations are “heightened” (as this was pretty “high” on the list of things that had happened to her lately).

I asked her if she wanted a glass of water and sat with her after she declined the offer. Given how she’d reacted to recent doctors’ appointments and other mood swings, I have to say (other than the shaking) she was calmer than I thought she’d be but I was no less worried about her. There wasn’t much I could do for her besides sitting with her but sometimes that’s enough.

I had been getting ready to go to work when the quake hit so I got up go back into my room to finish getting dressed. I asked Miss Cathy if she was all right and if she wanted me to stay with her.

“No, I’ll be alright,” she said, “I’ll get myself together after a little while. That’s not going to happen again is it?”

“No,” I said, “probably not, but there are usually aftershocks can come after the initial quake but they’re usually much milder.”

I could see that little factoid didn’t give her much comfort but I had to finish getting dressed and I kept reminding myself that she said she’d be “alright” (I kept repeating this assertion to myself to assuage any guilt I was feeling about leaving her alone).

I must have asked her “are you sure you’ll be alright, I don’t have to go to work, I can stay here with you” half a dozen times. Each query seemed to receive the same tepid “I’ll be fine.”

I picked up my bag and headed for the door going over my rationalizations for leaving
(against a gnawing in my gut that I should stay), using “I’ll be fine” as the green light to go.

It’s interesting isn’t it how we ask a question not wanting an answer so much as permission to do whatever it is that we know we shouldn’t but we’re not quite ready to take ownership of the action, instead, “asking” absolves us of any responsibility for that which we know we shouldn’t do.

Next week “I’m okay, You Okay?” Part ll

Paper Chase Part l


My brother and I have started the process of getting Miss Cathy’s “Estate” in order. We also want to sure that when the time comes she’s able to take full advantage of Medicaid for long-term care in a nursing home.

The process is daunting; hiring a lawyer (good luck setting all of this up on your own), researching what to ask, what to expect, and the paper work and forms, Oye Vey! Part of me is frustrated (and panic’d) that we’ve dragged our feet for so long and another part of me wants to cut the two of us some slack and remind myself that “things happen when they’re suppose to, and if we didn’t do it before it wasn’t meant to be so if we’re doing it now, it’s the right time”, so, there’s that constant push/pull of reprimand and encouragement going on in my head (it’s getting awful noisy in there).

The first step was a lot of research (mostly online) finding out what to expect and the steps to take. The more I read and the more I learned it seemed like pretty dangerous water to navigate alone so it became glaringly clear was that we’d need a lawyer. Given the legal world we swim in it’s best navigated by sharks (i.e. lawyers) anyway. Don’t get me wrong, I have the utmost respect for lawyers, I just hate that I feel powerless in that arena, like I’m always having to depend on a lawyer to translate and interpret my options, the law and then advocate for me. And the whole process and outcome never seem to be as clear-cut as on TV. The way the system works you’re as good as “dead man walking” if you enter into a courtroom to represent yourself. The “legal-eeze” in the documents alone is enough to make you feel like a damsel in distress so that one of the lawyers on the TV commercials (from the firm of “Rip-off, fly by night and takes all your money up front with no guarantees of getting you want you asked for) appears to be your knight in shining armour.

So, it was with that skepticism that I started my quest back in April. First, I contacted the local chapter of Alzheimers.org and they gave me a referral list of lawyers in the area that specialized in elder-care (a growing market of lawyers that work with families on estate planning, wills, Power of attorney, etc). They even have an organization called “The National Academy of Elder Law Attorneys” (website: http://www.naela.org) and can be researched state by state.

The list for my area wasn’t that long which surprised me given that we live just outside a major Metropolitan area (and judging from the assisted living, retirement communities and the huge amount of space given over to handicapped parking in the local shopping areas) I assumed it would be like shooting fish in a barrel to find a lawyer.

There may not have been a plethora of lawyers to choose from it was a start and in the end all I needed was just one good lawyer that we’d been comfortable working with.

I wrote down a short list of specific questions that I asked each lawyer during my initial phone call to save time and to help eliminate lawyers that I didn’t think would be a good fit for our situation. I didn’t want to waste my time or theirs so I made a point of being very specific and stressed what my ultimate goal was for my mother and asked them about there experience doing what I needed. These were my questions:

1) My goal is to help my mother qualify for long term care in a nursing home and have Medicaid pay for all of it-how do I achieve that and respect her wishes that her home not be used to pay for her care?
2) What is the Medicaid “look back“ that I’ve heard so much about and are there any ways around it?
3) Is her current will valid?
4) Does she need “estate planning” if she has little in the way of assets?
5) Do you charge for a consultation and if so/what?
6) What is your hourly rate?
7) Do you charge by the project or by the hour?
8 What has been your experience working with “elder care”?
9) How many estates have you set up?

If I was lucky enough to get the lawyer on the phone (and they were gracious enough) to indulge my questions I took notes so that I could compare and contrast later. Asking about the Medicaid “look back” was the most eye-opening question because the laws have changed recently and one lawyer cited old information and it made me realize that I shouldn’t assume that “any or all” lawyers I talked to had the most current information.

I left messages with secretaries for those not available and it took the better part of a week to talk to the seven lawyers on my list. After eliminating the lawyer with the outdated info (that was no-brainer) and the one who said that eldercare was really not the mainstay of his practice, I was left with five to choose from and they all said and offered pretty much the same thing (with a slight variation on their hourly rate which ranged from $275 to $400 an hour) except one.

Interestingly, only one lawyer, Cheryl Chapman Henderson asked me a question none of the others did. After my standard “Q and A” she asked me, “Do you know about the VA Pension Benefit?” and when I answered “no” she proceeded to tell how Miss Cathy might be able take advantage of this little known program offered to widows of a veterans who served during a time of war (any war). She had piqued my interest with that little factoid so that exchange put her on the top of my list-I liked that she brought something to the table that I would otherwise never have known about.

She also told me that they hosted a free estate-planning workshop at her firm so I signed up, thinking it would help me to gather some more information that would help me make a decision as to how to proceed.

Next week Paper Chase: Part ll

Shake and deflate


Thursdays seem to be “doctor day” lately, last week we were at the family doctor for a check up and last Thursday, I was waiting with Miss Cathy to see another doctor-only this time it was in an emergency room.

Let me back up a moment and tell you how we got there. Tony called me on Wednesday to tell me that Nile, my niece was in the hospital with a collapsed lung. It was just one of those rare, freaky things that “just happen sometimes” and unfortunately it happened to her. Thank God she was at home taking summer classes and not back at school alone when it happened. I was in shock listening to him tell me about tubes, fluids, punctures, thoracic this ‘n that, trying to make sense of it all. The only thing I could focus on was that he said she was out of danger.

We did the dance of “You don’t have to come, it’s too far” and “Of course I want to be there” two-step that loved ones do with each other when one feels they’ve imposed enough with the news let alone adding to the burden by expecting the other to drop whatever they’re doing to be there and the recipient of the news feels impotent to help but wants to take some kind of action to show they care, even though they know they can’t affect any real change in the situation-so, showing up is usually as good as it gets. The only thing holding me back from leaving right then was the question of what (if anything) to tell Miss Cathy. I told Tony I was going to leave it was up to him and that he should take some time to decide if he wanted to tell her; running the risk of getting her upset by telling her or running the risk of getting her upset later on after the fact-it was pretty much a lose, lose situation.

He decided to call and tell her.

I was in the kitchen making myself some lunch after running errands all morning and taking a yoga class when she came into the kitchen in her nightgown to talk about the news. Her timing couldn’t have been worse because I was already running on fumes so I just couldn’t handle listening to her (not that she didn’t have every right to be upset). I just needed a moment to sit down and digest some food and the news about Nile before I could be any use to her. I felt as if I was being cold or that I was putting her off but I’m learning to take care of myself first (so that I can best be there for her later). It’s kind of like when you’re on an airplane and they instruct you (in case of emergency) to put your oxygen mask on first and then the child’s because you’re no good to them if you’re deprived of air-well, I felt like I needed to put my mask on first.

I could see some disappointment on her face as I told her that I needed just a little time to sit down and eat, then I would come and talk to her about Nile. She acquiesced and went back to her room. Through my open door I could hear her making calls, reaching out to share her pain but no one seemed to be there when she called.

Tony called back to tell me that she seemed to take the news okay and that she didn’t give him any indication to him that she wanted to come to the hospital so I took that as a sign that she might not want to go anywhere. I looked in on her a few times while I was supposedly “taking care of me first” but I couldn’t help it, I just wanted to make sure she was okay. What I saw was that she was restless and she just couldn’t sit still; first she was on the phone (in her nightgown), then when I looked in on her again she was fully clothed, with lipstick and her hat on sitting on the edge of her bed ready to go somewhere, so I asked, ”What’s going on?”

She didn’t answer, she just looked at me. A few minutes later, realizing I wasn’t going to be able to “put my mask on first” I went back into her room but she wasn’t there. I found her sitting on the sofa in the living room (back in her nightgown) looking sad and lost, her hands shaking just a little. Knowing that she’s a very nervous person and upsets easily (even before her diagnosis) I wasn’t surprised but I checked to make sure that she was “just upset” over her granddaughter and not about to have a seizure or a repeat of her disorientation and near collapse of a few weeks ago. I brought in the bowl of soup and toast on a tray that she’d left in the kitchen and sat with her to make sure she didn’t spill anything on herself while she ate, raising the spoon to her mouth with a trembling hand.

After she finished eating I suggested that she lie back down so we walked back into her room and we talked about Nile when she was comfortably under the covers. At the end of our talk she asked, “When do you think we can go to the hospital?” I told her we could go right then, but it would have to be in the next fifteen minutes to beat the impending rush hour traffic on the Beltway. Knowing that she couldn’t get packed and ready in that time frame she agreed that we wait until rush hour was over before making the drive to the Virginia hospital across the Woodrow Wilson Bridge on interstate 95, which is notorious for accidents, delays, construction and traffic congestion (and that’s on a good day). I told her that we should take advantage of the wait by napping because it was probably going to be a long night, so she and I both lay down but neither of us got much of a rest.

Even though she didn’t sleep and was “up” she was very slow getting out of bed. Bt the time she was packed and ready to go it was 8:00pm. As luck would have it, traffic had died down so we were at Mary Washington Hospital in a little over an hour hugging Nile and Tony, Suemi and Zachary, Nile’s brother. They had all been at the hospital since early morning and I could see the concern on their faces, all except Nile, she looked great-considering (and I’m sure the Percoset drip didn’t hurt). With Miss Cathy and me there out little family was complete, Nile being the last addition to the family nineteen years ago. She was remarkably composed and alert, not at all what I expected from someone with a tube sticking out of their side and only one functioning lung. She was sitting up in bed chatting with us, seemingly more concerned for everybody else than herself.

Miss Cathy sat in the chair by the bed holding Nile’s hand as Tony filled us in on her condition, saying that it was still a matter of “wait and see” whether or not surgery was going to be necessary. It was after nine when we got there and we stayed for a few hours, Mary Washington being one of a few hospitals I’d ever been in that had such a liberal policy for visiting patients. But, it was getting late so we ended our visit and drove to Tony’s house, everyone exhausted from the day and anxious to get a little sleep before being back at the hospital in the morning.

By eight am Suemi, Miss Cathy and I were in the kitchen having breakfast; Zachary had to go to work and Tony had decided to take another day off from his job and was already at the hospital. I was sitting in the family room that opened onto the kitchen, Suemi was at the kitchen counter preparing snacks for everyone and Miss Cathy was at the kitchen table with her back to me, talking to her daughter in law. Knowing that she could sit there and talk forever I suggested that she might want to think about getting ready since it would take her awhile and I knew she was anxious to see her granddaughter.

She said, “I think I’ll just sit here and relax for a little while” which I thought was an odd response since all she’d been talking about was getting to the hospital but I shrugged, and decided to fire up my laptop to distract me from overhearing the conversation between the women that I’ve heard many time before. A few moments later I caught something out of the corner of my eye and it was Miss Cathy’s hands that were shaking. I got up to go to her just as the shaking started to take over her body, Suemi saw this happening at the same time and reached her first, cradling mom’s head against her side talking to her soothingly as the shaking became uncontrollably.

No sooner had I reached the sink to get her a glass of water when her eyes started to roll back in her head and she vomited the oatmeal she’d had for breakfast. Suemi said, “Call 911” and I fumbled with their landline, surprised by how quickly the situation had gone from familiar to chaotic, panicking a little myself, before calling the paramedics on my iPhone and regaining my footing. Suemi was brilliant, she was in control and calm and I followed her lead, grateful for once, not be alone to cope with the situation. By the time I’d given the 911 dispatcher the address and told her the situation Miss Cathy had stopped shaking and I could see that she had “come back to herself” (her eyes were newly focused and she was coherent). She seemed out of any immediate danger and said that she didn’t want to go to the hospital but she still wanted the EMS to come. She was understandable upset and started to cry a little, Suemi by her side to comfort her. I knew she was out of danger when she started barking orders that Duke, the dog needed to be put away before the emergency service workers arrived- even with vomit on her nightgown she was still trying to be in control.

We’d cleaned her up as best we could and she was trying to change out of her nightgown into a pair of pants by the time the paramedics arrived (which was under ten minutes). Two paramedics worked on her while a third asked her questions to ascertain her condition and to determine how alert she was. I jumped in when necessary (to correct some misinformation she had given) and I took a mental note that I should always carry my “Mom” notebook (which has all her medical history, prescriptions and all relevant information in it) with me at all times so that I’m better prepared in a situation like this.

When the medic asked her if she wanted to go to the hospital she said “yes” and burst into tears. I went to her this time (Suemi was out in the garage with the dog) and held her close as she sat in the chair crying, saying that she was afraid and embarrassed, her ego de-flated. I told her that I was there, that Suemi was there and nothing was going to harm her. I told her that all the people in the room were there to help her. By this time another team had arrived from an ambulance service and they put her on a gurney and drove her to the local hospital emergency room. I grabbed as much of her stuff as I could and followed in my car, Suemi waving from the open garage door saying she’d be there soon.

We stayed in room 10 of the emergency room for about four hours while they took an EKG and chest x-ray. She’d calmed down considerably and slowly became her usual “Chatty Cathy” self with the nurses. The doctor examined her early on and came back a few hours later with the test results, which confirmed that her episode was anxiety related. Her blood sugar and pressure were understandably elevated so they wanted her to stay for awhile and relax until her levels could stabilize then I could take her home. This would be the third time she was in the emergency room due to a nervous response to a situation; it was obvious that she couldn’t handle stress anymore.

Once we were home I got her comfortably into bed where she napped for the rest of the day. I’d already talked to Suemi in the emergency room about what we needed to do moving forward and later I called Tony at the hospital where he was still waiting to hear from the doctor about Nile’s condition to tell him that Miss Cathy was okay. We all agreed that what happened to mom confirmed what we’d suspected all along. We decided that it was best that we no longer tell her anything that could upset her. She just can’t handle bad news or stressful situations anymore; it’s not good for her health.

While she was resting I washed her soiled clothes, refilled her meds and got back to some our day-to-day routine. Then I lay down for a nap myself and slept like a dead man for four hours, waking up at 7 pm to check in on Miss Cathy and she was sitting up in bed watching television.

Post script: On Saturday afternoon Nile was released from the hospital after her lung had “re-flated” without the need for surgery. Her prognosis is good and she should be able to return to her hectic, active lifestyle as a co-ed in a few weeks, but since this happened to she has a recurrence rate of 30% in her lifetime.

As for Miss Cathy, she woke up on Friday feeling like her old self, “pumped up” as good as new. Her cousin, Mary came to the apartment with her daughter Juanita for a visit and that lifted her spirits but nothing made her happier than finding out on Saturday that Nile was home. I could hear her on the phone talking to Tony offering to come over to “take care” of Nile while she was convalescing-completely oblivious that “she’s” the one in need of care.

Folding chairs


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.”