Paper Chase Part IV

“Okay,” Cheryl, the lawyer replied, satisfied with Miss Cathy’s answer to her query as to why she thought she was there, meeting with her. She went on to ask mom question after question about what she wanted done with her condo and her belongings. Everything she asked were all the things that Tony and I had gone over with her weeks before but I’m assuming she needed to ask Miss Cathy so that she could hear the words come out of her mouth just to be clear that mom’s wished were being carried out and she wasn’t being taken advantage of.

Then Cheryl asked, “Can you tell me what’s been going on with your health.”

“I’ve got diabetes,” answered Miss Cathy.

“Okay,” Cheryl said, taking copious notes, “ what else.”

“I’ve had a left knee replacement.”

“What else.”

“I have high blood pressure.”

“Okay, what else.”

I could see that Miss Cathy was perplexed, she looked like a little school girl who had successfully named all the letters of the alphabet but the teacher was asking for more so the poor student was wrecking her brain trying to think what comes after “z”.

Tony and I looked at each other knowing what Cheryl wanted to hear but didn’t want to appear as though we were “leading the witness”; finally I looked at Miss Cathy and said,
” Why do you see the neurologist, Dr Aleymahue?”

“Oh yes,” she said, eyes bright because she knew the answer and wanted to get a gold star,” I have dementia and Alzheimer’s.” (Talk about burying the lead!)

Satisfied with Miss Cathy’s answers about her health, Cheryl wasn’t quite finished though, she still had more some questions for Miss Cathy to answer, pen in hand ready to write down everything she said. “What does Ty do for you?”

Now you could see that Miss Cathy was warming up to the subject and she almost gave winked at Tony and me to let us know that she remembered what we’d talked about with her in the kitchen earlier that morning to ‘prep’ her.

“He’s a great help to me,” she started, “he cooks my breakfast.”

“What else..”

“He helps me when I take a shower, he makes sure that I don’t fall.” The back and forth went on as mom told Cheryl what I did to help her during the day. I could see that she was very proud when she said, “He comes in and turns off the TV and light for me at night when I go to sleep.”

Nice as it was to be acknowledged for that, I knew Cheryl was looking for something a little more substantive to help mom apply for a caretaker exception for her Medicaid application, but (to her credit) Cheryl was patient and kept on asking the same question, “what else” until Miss Cathy offered up more relevant help like the fact that I dispense her medication and help her with her daily blood sugar test (that included taking a blood sample and reading the meter.)

Finally Cheryl seemed satisfied that mom was acting of her own free will so moved on and opened up a new folder (one of many that she had fanned out in front of her at the conference table that represented the various programs and procedures that we were undertaking.) She passed the applications forms to me then and then she went over the documents needed to apply for Medicaid, to set up a Personal Caregiver Agreement and a possible assistance stipend from the Veterans Administration program set up for widows of war veterans.

I’d handed over copies of the dozen or so documents that Cheryl requested that I bring for the meeting. She noticed that a copy pop’s birth certificate was not in the pile and I explained that he was born in 1923 and the hospital he was born in burned down decades ago and the all the records were lost.

“Mom did write to the courthouse of the town where he was born to get something in writing stating that the hospital burned down but we can’t find that document,” I said by way of explanation.

She said that it was imperative that we find the letter that verified his birth because without it (even though we have his social security card and discharge papers from the VA) she was afraid any application we submited would be rejected or sent back until they had everything that they asked for.

Cheryl told us that she’d need a couple of weeks to draw up the papers for Miss Cathy to sign (after she had a copy of the missing proof of pop’s birth). Then she gave me a form (Yikes! another one) for Miss Cathy’s family physician to fill out for the Maryland Medical Advisory Board to ascertain her eligibility for assistance as a person in need of a caregiver not living in a nursing home.

As we were wrapping up the meeting Cheryl made a point of telling Miss Cathy that even thought Tony was paying the legal bill and he and I were acting on her behalf that she (Cheryl) was Miss Cathy’s lawyer and her allegiance was to her alone and not to us.

Cheryl and Tony left to take care of payment leaving Miss Cathy and I in the conference room alone for a few moments.

“You did very well,” I told her. I didn’t have a gold star but I did say, “I’m proud of you.”

And I was, too. I knew that her natural inclination when being asked about her health is to say, “I’m fine” and to tell whomever was asking how independent and self-sufficient she is. So, I know it was hard for her to list her ailments and to even suggest that she needed help (in any way).

But, she knew how important this was and even though she’s telling the truth it isn’t the truth she tells herself on a daily basis.

I’ve yet to hear her tell any of her friends or a stranger for that matter that she has dementia (not willingly anyway) and though she’s grateful for my help it’s nothing that she readily discusses and in her mind I’m living here with her mainly because of her ‘knee replacement’ and balance issues.

“Thank you,” she said. ” She seems very knowledgeable, you guys have done a great job putting this together. Man, this is a lot of work, isn’t it?!”

As we rose to leave the office I knew that we were still at the beginning of a long process, and there’s no way we’re going to have an incomplete file now, not after coming this far and all the hard work it took finding all the documents we did have (not to mention paying the lawyer a hefty retainer.)

I knew that we’d looked for the letter confirming pop’s birth in Virginia (the correspondence dated back to the 1970’sfrom what I remember seeing) in Miss Cathy’s extensive files that she kept (and to her credit she pretty much has every legal document necessary and almost always knows where it is stored) but for some reason this particular letter wasn’t where it was suppose to be…we need to find it so the paper chase continues for one more document.

Post script: Miss Cathy hunted for the document for two days like a woman possessed and she found it. The official document was photo copied and mailed off to the lawyer to be included in one of many filings that were to go out after we returned to sign the various documents….more on that as “Paper Chase” continues in Part V

Paper Chase Pt lll

“So, the way I see it, we have three things that we want to accomplish in the meeting with the lawyer,” I said, by way of beginning my prep with Miss Cathy for the meeting with Cheryl Henderson later that afternoon. The day had finally arrived when all of the research, preparation and paper work would come together so that we could finally start the process of getting mom’s (legal) affairs in order.

“The first thing is to get the clock started on Medicare.”

“Medicare?” Miss Cathy queried,” Don’t you mean Medicaid?”

“Right, right”, I said dismissively, eager to get back to my larger point, “Medicare, “Medicaid-I just got them confused, you know what I’m talking about.” I started to continue to outline what the meeting was about but Miss Cathy was having none of it.

“Well, it’s important to say what you mean, I just wanted some clarification.” Sounding like the elementary substitute teacher that she was after she retired from thirty years working with the federal government.

“Okay, but you know what I meant, so can you do me a favor and let my mistake slide, I’ve got a lot of other things on my mind so can you not ‘nit pick’ every word.”

“Why is it that you get to question me but I don’t get to ask you anything?” she shot back, clearly not in a mood to be conciliatory.

“Jeesh, are you really going to start this now?” I thought to myself, “I could be back in New York right now doing something fabulous but I’m here like a good little secretary with my notebook and pen, doing my best Roz Russell impersonation trying to get you ready for a meeting with a lawyer about your “shit” (not mine) and you’re going to play “tit for tat” with me today? Really?”

But, as frustrated as I was she did have a point and I had to acknowledge it so what I said was, “you know what, you’re right, it doesn’t seem fair, you should get to question me as much as you want but we don’t have a whole lot of time before we need to leave and I’m just trying to get through this before we have to go. So, can you do me a favor and just let “one” slide and not correct me every time I say something out of turn when you know what I’m talking about.”

“I don’t like your tone.” She said.

“Okay, I’m out.” I said closing my book and putting my notes away,” I’m going to go take a shower and maybe we can start over again later.”

“Good, you do that,’ she said, “maybe that way you can take some time to get yourself together, it seems to me that you have a little attitude.”

“Jesus Christ”, I muttered under my breath (but loud enough to be heard) as I walked out of the living room.

Tony sat on the couch during this little exchange watching us morph into George and Martha from “Who’s afraid of Virginia Wolff’ without saying a word.

I took a shower and rinsed away any resentment that was building up in me and came back into the kitchen ready to move on. Miss Cathy was cooking breakfast and Tony was keeping her company.

“I want to talk to you when you get a minute”, I heard her say in my general direction, her back to me but I could tell by her tone and the way she kept her back to me that she was as hot as the skillet on the stove.

“Okay, shoot.” I said and sat down and listened as she told me how she felt disrespected and how angry she was. “I don’t like the way you talk to,” she said,” and I will be respected! Now before we go in there and change things you better make sure that you want to be here because you can always go some place else.”

“Wowsa!” was all I could think. Her telling me that ‘I was unhappy’ and ‘could leave anytime’ was turning into a recurring theme lately, but I chose to ignore that and focus on what was more important and that was the fact that she was upset and I’m the one that made her feel that way. I told her (quite sincerely) that I did respect her and the last thing I wanted was for her to get upset and for that I was truly sorry.

“You know, I’ve got to tell you something, I know I’ve told Tony and a few other people but maybe I never told you but I’m the one that chose to be here, nobody asked me too, not you, not Tony, no one-it was my idea and I haven’t regretted it for a one minute. There are a few things that I know for sure and I know that at the end of my life I will always remember making the decision to come stay with you as one of the best things I’ve ever decided to do in my life.”

I looked over at her and I could see that she heard me, that she needed to hear me say that.

“Well, okay,” she said and just like that the storm passed as quickly as it came.

“Do you want eggs to go with your scrapple?” she asked.

After breakfast we finally settled back down in the living room to discuss what she could expect in the meeting. I told her that it was important for her to give the lawyer the impression that what we were doing was ‘her’ idea and that she wasn’t being coerced or manipulated by Tony or me.

Part of the reason for prepping her was so that we could rehearse what she needed to say and tell her what the key points were and hopefully keep her from rambling off topic.

She seemed to understand what we were doing, especially after we stressed that all the preparations for long term care in a nursing home were for ‘down the road’ and that nothing that we talked about would change her life now (or for a long time hopefully).

Tony and I both knew that any talk about ‘nursing homes’ had the potential to get her agitated and upset and we wanted her to be calm for the meeting and to not act like we were conspiring to ship her off to a home and run away with her money. We talked for a good forty minutes or so; entertaining her questions and making her feel as comfortable as we could about everything. She seemed satisfied with what we’d discussed so we set out for the short drive to College Park, Md where the lawyer’s office was located.

Seems like every time I’ve been to Cheryl’s office I’ve always got someone else with me, first it was just me, checking out her seminar, then I came back for a consultation with Tony and now Miss Cathy was with us as the secretary ushered us into the now familiar conference room.

A few minutes after we were settled in our seats Cheryl Henderson, the lawyer walked in and introductions were made. Cheryl greeted Miss Cathy warmly and gave her a hug, and then she looked at me and said, ”Where’s my hug?”

I’m not much of hugger, especially in a business setting but ‘when in Rome’ ….

With everybody hugged and seated we could finally begin. The next hour or so pretty much revolved around Miss Cathy (as I thought it would). On one hand it made sense to prep mom beforehand so that she’d have an idea of what to expect and what to say but in the final analysis it really didn’t matter because her short term memory is so spotty that it’s a crap shoot whether she’ll remember what we discussed and rehearsed so you really just genuflect and hope for the best.

It’s not like she was being interrogated but Cheryl was pretty much focusing all her energy and conversation on Miss Cathy, she’d heard from Tony and me already and she knew what we wanted (on mom’s behalf); now she wanted to hear it from Miss Cathy herself.

I sat silently and tried to look supportive as Miss Cathy answered the questions asked, sometimes faltering but always charming and trying to please. I could see that at times the questioning was getting a little overwhelming but she didn’t complain or get irritated.

“Do you know why you are here?” Cheryl asked.

“Well”, Miss Cathy said hesitantly, then she sat up in her chair more confidently and answered, “I’m here to get my affairs in order.”

Next week, part IV

Paper Chase Part ll

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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: 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

Romancing the stone (granite)

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.

A lifeline

Since the meeting with the neurologist things around here have been going pretty smoothly. Miss Cathy is still doing her “victory lap”; calling everybody she knows to tell him or her what the doctor said (or more accurately-what she “wanted” to hear him say).

Anyway, she called me into the living room recently to tell me that she had an idea about how to make “me” feel more comfortable about her staying home alone (what she doesn’t seem to realize is that I am “so fine” with recent events, I went through whatever upset and changes I was going through and now I’m moving on-next!).

She suggested that “she” should get a “medical alert necklace” (you know the one, you’ve seen the commercials on TV late at night, “Help! I’ve fallen and I cant get up!”) Well, I was surprised that she came up with the idea but after thinking about it I gotta say that I was impressed (even if “I” am the one that is going to have to look into getting it).

So, I added researching the “necklace” to the list of things to do. Tops on that list were contacting lawyers to get information about her estate planning. It’s not like there’s much of an “estate” but what little there is has to be carefully managed so that Tony and I can do the right thing by her and (hopefully) set up the future so that when she needs long term care everything is in place for her to take full advantage of Medicaid.

I got a list of lawyers from The Alzheimer’s Association and they also suggested I check out the NAELA (National Assoc of Elder Law Attorneys) website. Unfortunately, the list from the Alz Assoc needed to be updated. A lot of the lawyers that I called no longer practiced or the numbers were wrong and the NAELA website had some incorrect information, too. But, I persevered and came up with about half a dozen lawyers in the area to contact. And being the good little “do-bee” that I am I called my local contact at the Alz Assoc to tell him about updating the list (hey, it’s the least I can do with all the help they have given me).

It took about a week for the various lawyers to get back to me (for some reason four of the six all called on a Friday). They all seemed “capable” (over the phone) and took a fair amount of time to talk with me about what I wanted to accomplish. I knew that I needed something to try to distinguish one lawyer from another since I didn’t have personal experience or a recommendation from someone who had worked with any of them. The Alz Assoc takes great pains to say up front that they are not endorsing or recommending anybody, they are simply providing information.

I had my list of questions to ask and I found a way of “testing” how knowledgeable they were so that I could separate the competent from the cash seeking by asking all of them about the “look back” that Medicaid does for all applicants (something any lawyer worth his salt should know about if they handle any elder law cases).
The “look back” is the time frame by which Medicaid considers personal wealth in determining who gets “how much” money from the government agency that will be paid out for a persons’ long term care (the correct answer: under the current guidelines the “looks back” covers looking into the last five years worth of a person’s assets and holdings (and not three years that some lawyers are still quoting, by the way.

If Medicaid is satisfied that a person did not dispose of property or assets in order to qualify for benefits they will appropriate the necessary funds for care, if they feel someone has assets of any significant value (a relative term) they can determine that the person should shoulder most or part of the financial responsibility for care until their resources are exhausted or Medicaid can put a lien on the property to recoup monies paid out for care after the person dies and the property is sold).

They all agreed that it was wise to start the process sooner rather than later and told me that we are lucky to have Miss Cathy’s support and co-operation. A couple of the lawyers told me horror stories of how family members were trying to do the right thing by their loved one with Alzheimer’s but the person was unwilling to cooperate or too far gone in the disease to be able to help. Some (because of the disease) had become paranoid, combative and stubborn to the point of sabotaging plans by refusing to sign documents or not agreeing to what was in their best interest. So, more often than not they leave a mess for the loved ones to deal with (and sometimes a huge bill for care-remember, long term care can run up to thousands of dollars a day).

I did find two lawyers that I’m felt comfortable enough talking to over the phone to want to follow up with. One lawyer in particular impressed me because she was the only one to suggest that there may be other ways of planning for her long-term care other than (or in addition to) Medicaid. She told me that Miss Cathy could be eligible for a Veteran’s Administrating Pension Benefit that is given to widows of war veterans, the caveat is that the deceased only has to have been enlisted during a time of war-the soldier did not have to have seen combat. If she qualifies, it could mean a possible thousand dollars a month more toward her care so that’s definitely something worth investigating.

This same lawyer invited me to a monthly estate-planning workshop that she holds in her office, the next one is on April 5th and I plan to be there. It will give me a chance to not only gather some information but to check out the lawyer as well.

As for the medical alert necklace, I found two companies online that l felt comfortable calling based doff their websites. The first was “Lifeline”, the one that advertises on TV and the other was a competitor that seemed to offer the same product a t a lower price but I just didn’t get a good vibe from them so I was leaning toward the more expensive company that originated the product.

The good news is that their local rep called to give me a much better deal than was quoted to me originally (so be sure to have the Lifeline agent give you the contact telephone number for a rep in your area-there could be deals and specials that you can take advantage of to lower the cost of the service).
I signed Miss Cathy up, the equipment (which just plugs into a telephone landline power source to monitor activity in addition to the necklace) came on Saturday. I’m waiting for the fist of April to do the installation. I’m planning a trip to New York and Kansas City for two weeks starting on Aril 7th so Miss Cathy gets her freedom (she was sooo happy when I told her my plans).

She said that she changed her mind about the medical alert necklace after she found out how much it cost. Well, I said using her own words against her when she told me that, “Too bad, it was your idea and now I happen to think it’s a good one so we’re keeping it and you’re going to wear it.”

Whether or not she does remains to be seen-all I can do is all I can do and today I’m okay with that.