Tag Archives: canyoucomehereforaminute

…”That’s what I’m here for”

Posted in August by

“Can you come here for a minute?” Miss Cathy called out the familiar refrain.

I’ve heard that phrase as a preface to many a request in the last three years.

“Can you help me hook my bra, I can’t seem to get it on.” (Which usually means it was on backwards, inside out or both and is followed with a litany of expletives of how much she’s always hated being ‘busty’)

“What day is it?” (She asks this almost daily now, which is understandable for someone (anyone really) who doesn’t have a job, deadlines or have to rely on a schedule or clock any longer. But what I find troubling is that there are days when it’s after dark and she can’t distinguish whether it’s day or night)

“How much is four times twenty?” (This usually happens when she’s trying to count money)

“I can’t find a can of soup in the pantry, can you look and see if we have any.” (The pantry is stocked full of canned, paper and other goods that she can never seem to ‘find’)

“This TV is messed up again, I can’t get it to work right.” (This usually means that she’s pushed the wrong button or any number of random buttons on the remote causing the TV to either shut off, switch to DVD, Video mode or have to reboot itself after so much activity)

“Did I take my medicine? Is it time for me to take my medicine?” (Since I’m in charge of dispensing her meds I can usually remember if she has and if not, looking at the weekly pill dispenser easily solves the problem)

“Can you dial (insert the relative or friend’s name here) for me?” (Unfortunately she lost the ability to remember telephone numbers she’s known by heart for decades along with the loss of her short-term memory)

And so on and so forth, that’s just a sampling of what she asks and what she needs, not all at the same time and not everyday (Thank God) but so goes the dialogue and familiar ways and days of living with Miss Cathy.

“Can you come here for a minute?” she’ll ask.

“Of course”, I reply, “that’s what I’m here for.”

#Flareups

Posted in March by

It’s been months since my last communiqué and for that I am sorry.

Simply put there hasn’t been much to post; other than the occasional “flare up” of “Alz” life seemed to have fallen into a predictable, non eventful pattern.

I had a respite from the disease but, life being “life” and “Alz’” being “Alzheimer’s” things were bound to change.

So, I am back, sharing the little things and the not so little things that have happened and that are happening now.

I haven’t been posting but I have been writing so some of what I’ll be sharing has already past so it’s out of time but not out of context.

It is odd and peculiar to this disease (and particularly cruel, I think) that weeks, even months can go by without incident then all of a sudden, as if someone turned “off” a switch, things that were routine and known are all at once foreign and unfamiliar.

Miss Cathy has gone from an occasional state of confusion to living in a place where simple acts; putting her shoes on the correct foot, disarming the security system and operating the television remote have become almost daily challenges.

Things that she’s done for years are now a struggle of some kind, I’ve watched as she seems to approach her routines with trepidation.

At first she made the usual excuses; food being burned (“The meat cooked too fast”) or not being able to operate the telephone (“Something is wrong with this phone, I need to call the telephone company”) and the remote (“I can’t see these numbers, they seem to be moving or something”) to a realization that it could possibly be something else, something more (“There’s something not right with my brain”)….and I agree.

Enough has happened that it’s time to get her ‘team’ (general practitioner, neurologist and even her ophthalmologist) back on board to check her out. Maybe she just needs new glasses, her diabetes could be a factor or her meds need to be adjusted-or a combination of all the above.

No matter, it’s time to send a flare up to signal that the “Alz” has awaken from it’s slumber and it’s time to do battle; time to re-engage, re-learn and chart a new course of action.

I hope to get back to posting regularly and that you will continue to follow me on this journey-

Thank you

Doppelgang-ette

Posted in October by

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 l

Posted in July by

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

Posted in July by

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.

Romancing the stone (granite)

Posted in July by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reaching out

Posted in June by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Father’s Day

Posted in June by

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

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

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

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

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

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

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

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

“I’m going to the Beltway” I said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Father’s Day!

Folding chairs

Posted in June by

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

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

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

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

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

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

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

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

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

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

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

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

Good night moon ( Good morning Miss Cathy)

Posted in May by

I was in my room writing when I heard Miss Cathy moving around in her room and then I heard the sounds of her shower coming on. I looked at the clock and thought it was odd but went on about my business for a while longer. I got up from my desk to go get something to drink and as I passed by her doorway I could see her making up her bed.

“Good morning!” she said full of her usual morning cheer.

”Good evening”, I corrected her thinking she was making a joke. I started to continue on down the hall until I heard her say, “what?” “What time is it?”

“It’s 8 o’clock”, I answered. “ 8 o’clock in the morning right?” she asked looking puzzled.

“No, it’s 8 o’clock at night.” I said chuckling.

“Well, damn Sam, I thought it was time to get up, Oh well” “It’s Sunday-right?”

“No, it’s still Saturday, you’ve been asleep for about five hours, you took a nap.”

“Oh, okay, well, I woke up and I thought it was getting light outside so I just got up and took a shower thinking it was morning.” “ I guess I really f*cked up, didn’t I?”

We both laughed and I said that it was an easy mistake to make. Since it twilight it could have appeared to somebody just waking up that the sun was coming “up” instead of going “down”.

I really didn’t know she’d been in that deep of a sleep (or that she’d slept so long). I had been walking past her room for hours making all sorts of noise so she must have been out like a light (how she got so tired from a day of eating breakfast and lunch and watching TV in the living room is the real mystery to me-but I digress).

For someone who is constantly saying, “I rarely take naps in the afternoon” –guess where you can find Miss Cathy most days by 2 pm-in bed taking a nap. Hey, whatever makes her happy and she does seem happy, so, I say, “nap away”.

And contrary to what she also says about having a problem sleeping during the day (or at night after a hard day napping) she doesn’t ever seem to have any trouble “going under”.

I’m just happy I don’t have to read, “Good night moon”.