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 www.va.org).
If you find the website as complicated as I did, it may be well worth the wait to call the VA at: 800-827-1000 (just make sure you have your knitting or a crack pipe to suck on while you’re on hold waiting to speak to someone-another “Ty tip”;)
Later that week Tony and I had a phone meeting to go over what I’d learned and to talk about what we (each) wanted to accomplish at the meeting with the lawyer. My brother and I work very well together and it definitely helps to talk things over before speaking on our mother’s behalf so that we’re on the same page. Even though we’re family and we have the same goals our approach may sometimes be different as to how to get there so I always think it’s best to compare notes ahead of time so that we show a united front. The system; doctors, hospitals, lawyers and the like can sometimes be less than welcoming to loves ones of a person in need so the last thing they want to encounter is bickering siblings with divergent agendas.
We decided to bring as much documentation that we thought might be necessary (Miss Cathy’s social security card, deed, will, bank account, as well as some of our deceased step-father’s information). I think there’s nothing worse than being asked for something in a meeting that you “thought you might need” but don’t have with you so why not bring it along-just in case, after all, it’s just paper.
The laywer’s office was quiet and serene on the day we had our meeting, it was not crowded and buzzing with activity the way it was on the day I came for the estate-planning seminar. The receptionist led us into the conference room where I sat weeks earlier but this time there we only three of us in the room.
After introductions we settled into our seats and began. Cheryl told us about herself and her practice (more for my brother’s benefit because I’d already heard her spiel). When she asked why we were there we took that as our cue to dive right in. Tony told her what we wanted to do and I read to her our list of questions. We finished by asking her if she could help us.
She listened to what we had to say and took notes about our questions, then Cheryl told us that there were a few ways to accomplish what we wanted then she gave us the pros and cons of each scenario. At one point she said, “If I had “this or that” document then I would be able to tell you “such and such”, and wouldn’t you know it-we had most of what she was asking for so we were able to get specific information from her about our situation and quickly more away from generalities.
We discussed Irrevocable Trusts, Revocable Trusts, Life Estate (Ladybird) Deeds, Personal Care Agreement, Medicaid and the VA Aid and Attendance benefit and tax implications among other things.
One of the things we realized after talking with the her is that a will is not a great option for us; probate can be expensive and the estate (what little there is) could be tied up in the courts for up to a year (something to think about when you’re planning for those left behind after your loved one has passed away). It sounds as though one of the Trusts is better suited for our needs to accomplish what Miss Cathy wants to happened with her things and the Personal Care Agreement will help take care of planning for her inevitable stay in a nursing home.
As for Medicaid, it’s a great government program that pays for long term nursing home care, but the individual is responsible for a portion (if not all of the expenses associated with the nursing home) if the individual goes into a nursing home before the five-year period after they have applied. The “five year look-back” determines the individual’s financial situation and there ability to pay for their own care, so the clock starts ticking only “after” you apply so, the sooner the better. If your loved one goes into a nursing home five years after you apply then the gov’t pays for everything. If they have to go in before, then they (or you) will be responsible for the nursing home costs until the five-year time “window” is closed.
It’s important to know that Medicaid will never take someone’s house while they are alive, but monies owed for care will be recuperated after the sale of the home upon the person’s death unless other arrangements have been made to dispose of the property and/or have the home exempt as an asset that Medicaid can put a lien on.
As you can imagine, the meeting lasted well over an hour and by the time we left my head was swimming with all the info that was floating around in it. Thank God Tony was there because I needed him to help me figure out what the hell was said in the meeting and what works best for us.
After much discussion we’ve decided to move forward with the Personal Care agreement (which includes help applying for the Veteran’s Aid and Attendance Benefit) as well as an Irrevocable Trust.
So, now we’re gearing up up to meet with the lawyer one more time in early August to get the ball rolling and so that Cheryl can meet Miss Cathy. In the interim I’ve been gathering the following documents and paperwork for our next meeting; Marriage and divorce decrees and certificates, Death certificates, Birth certificates, Deeds, Bank accounts, Military discharge papers, Monthly household expenses, Names of doctors and hospital visits, Social security award letter, Physician’s statement and Proof of income-Oye Vey! That’s a lot of paper!
I know that we’re among the lucky ones because Miss Cathy is still able to be part of the planning and the process. She can express to us what she wants to happen to her (and her things) after she’s gone so we can all work together to make that happen. A lot of people don’t have the luxury of their parent’s cooperation and input; one in particular comes to mind. I have a friend who’s parent is much farther along in the disease than my mother so he doesn’t have his parent’s input or cooperation, he’s acting alone to plan for long term care and doing the best he can to decide what happens “after”. Unfortunately (and this is an oft told tale) he and his loved one are at odds because his parent’s dementia makes him not able to fully understand what is happening so he’s combative and his behavior is often detrimental to the process (of their adult child making preparations for the parent’s long term care and passing).
I think it’s important to be able to honor your loved one’s wishes and provide for their needs as best as possible and at the same time take in consideration those left behind and the burden they may have to bear. Death and dying and long-term care can be uncomfortable conversations to have but they’re important and you’ve got to have them, especially if your loved one is capable talking about those things.
Alzheimer’s is a baffling and cunning disease so if your parent or loved one is in the early stages, start the conversation now-if there disease has progressed past the point of their involvement then do your best to honor them as you see fit-after all, you’re among (or you are) the closest person to them and I always feel that if you’re acting from a place of love then whatever action you take can't be wrong.
So, I know we’re lucky and I know that even with all the paper I have to chase it’s worth it so that Miss Cathy’s wishes are honored and she’s taken care of properly. The more I can do now the better chance that no one (i.e.-me) is buried under a mountain of red-tape and paperwork down the road.
Monday, July 25, 2011
Monday, July 18, 2011
Paper Chase Part l
My brother and I have started the process of getting Miss Cathy’s “Estate” in order. We also want to sure that when the time comes she’s able to take full advantage of Medicaid for long-term care in a nursing home.
The process is daunting; hiring a lawyer (good luck setting all of this up on your own), researching what to ask, what to expect, and the paper work and forms, Oye Vey! Part of me is frustrated (and panic’d) that we’ve dragged our feet for so long and another part of me wants to cut the two of us some slack and remind myself that “things happen when they’re suppose to, and if we didn’t do it before it wasn’t meant to be so if we’re doing it now, it’s the right time”, so, there’s that constant push/pull of reprimand and encouragement going on in my head (it’s getting awful noisy in there).
The first step was a lot of research (mostly online) finding out what to expect and the steps to take. The more I read and the more I learned it seemed like pretty dangerous water to navigate alone so it became glaringly clear was that we’d need a lawyer. Given the legal world we swim in it’s best navigated by sharks (i.e. lawyers) anyway. Don’t get me wrong, I have the utmost respect for lawyers, I just hate that I feel powerless in that arena, like I’m always having to depend on a lawyer to translate and interpret my options, the law and then advocate for me. And the whole process and outcome never seem to be as clear-cut as on TV. The way the system works you’re as good as “dead man walking” if you enter into a courtroom to represent yourself. The “legal-eeze” in the documents alone is enough to make you feel like a damsel in distress so that one of the lawyers on the TV commercials (from the firm of “Rip-off, fly by night and takes all your money up front with no guarantees of getting you want you asked for) appears to be your knight in shining armour.
So, it was with that skepticism that I started my quest back in April. First, I contacted the local chapter of Alzheimers.org and they gave me a referral list of lawyers in the area that specialized in elder-care (a growing market of lawyers that work with families on estate planning, wills, Power of attorney, etc). They even have an organization called “The National Academy of Elder Law Attorneys” (website: 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
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: 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
Monday, July 11, 2011
Shake and deflate
Thursdays seem to be “doctor day” lately, last week we were at the family doctor for a check up and last Thursday, I was waiting with Miss Cathy to see another doctor-only this time it was in an emergency room.
Let me back up a moment and tell you how we got there. Tony called me on Wednesday to tell me that Nile, my niece was in the hospital with a collapsed lung. It was just one of those rare, freaky things that “just happen sometimes” and unfortunately it happened to her. Thank God she was at home taking summer classes and not back at school alone when it happened. I was in shock listening to him tell me about tubes, fluids, punctures, thoracic this ‘n that, trying to make sense of it all. The only thing I could focus on was that he said she was out of danger.
We did the dance of “You don’t have to come, it’s too far” and “Of course I want to be there” two-step that loved ones do with each other when one feels they’ve imposed enough with the news let alone adding to the burden by expecting the other to drop whatever they’re doing to be there and the recipient of the news feels impotent to help but wants to take some kind of action to show they care, even though they know they can’t affect any real change in the situation-so, showing up is usually as good as it gets. The only thing holding me back from leaving right then was the question of what (if anything) to tell Miss Cathy. I told Tony I was going to leave it was up to him and that he should take some time to decide if he wanted to tell her; running the risk of getting her upset by telling her or running the risk of getting her upset later on after the fact-it was pretty much a lose, lose situation.
He decided to call and tell her.
I was in the kitchen making myself some lunch after running errands all morning and taking a yoga class when she came into the kitchen in her nightgown to talk about the news. Her timing couldn’t have been worse because I was already running on fumes so I just couldn’t handle listening to her (not that she didn’t have every right to be upset). I just needed a moment to sit down and digest some food and the news about Nile before I could be any use to her. I felt as if I was being cold or that I was putting her off but I’m learning to take care of myself first (so that I can best be there for her later). It’s kind of like when you’re on an airplane and they instruct you (in case of emergency) to put your oxygen mask on first and then the child’s because you’re no good to them if you’re deprived of air-well, I felt like I needed to put my mask on first.
I could see some disappointment on her face as I told her that I needed just a little time to sit down and eat, then I would come and talk to her about Nile. She acquiesced and went back to her room. Through my open door I could hear her making calls, reaching out to share her pain but no one seemed to be there when she called.
Tony called back to tell me that she seemed to take the news okay and that she didn’t give him any indication to him that she wanted to come to the hospital so I took that as a sign that she might not want to go anywhere. I looked in on her a few times while I was supposedly “taking care of me first” but I couldn’t help it, I just wanted to make sure she was okay. What I saw was that she was restless and she just couldn’t sit still; first she was on the phone (in her nightgown), then when I looked in on her again she was fully clothed, with lipstick and her hat on sitting on the edge of her bed ready to go somewhere, so I asked, ”What’s going on?”
She didn’t answer, she just looked at me. A few minutes later, realizing I wasn’t going to be able to “put my mask on first” I went back into her room but she wasn’t there. I found her sitting on the sofa in the living room (back in her nightgown) looking sad and lost, her hands shaking just a little. Knowing that she’s a very nervous person and upsets easily (even before her diagnosis) I wasn’t surprised but I checked to make sure that she was “just upset” over her granddaughter and not about to have a seizure or a repeat of her disorientation and near collapse of a few weeks ago. I brought in the bowl of soup and toast on a tray that she’d left in the kitchen and sat with her to make sure she didn’t spill anything on herself while she ate, raising the spoon to her mouth with a trembling hand.
After she finished eating I suggested that she lie back down so we walked back into her room and we talked about Nile when she was comfortably under the covers. At the end of our talk she asked, “When do you think we can go to the hospital?” I told her we could go right then, but it would have to be in the next fifteen minutes to beat the impending rush hour traffic on the Beltway. Knowing that she couldn’t get packed and ready in that time frame she agreed that we wait until rush hour was over before making the drive to the Virginia hospital across the Woodrow Wilson Bridge on interstate 95, which is notorious for accidents, delays, construction and traffic congestion (and that’s on a good day). I told her that we should take advantage of the wait by napping because it was probably going to be a long night, so she and I both lay down but neither of us got much of a rest.
Even though she didn’t sleep and was “up” she was very slow getting out of bed. Bt the time she was packed and ready to go it was 8:00pm. As luck would have it, traffic had died down so we were at Mary Washington Hospital in a little over an hour hugging Nile and Tony, Suemi and Zachary, Nile’s brother. They had all been at the hospital since early morning and I could see the concern on their faces, all except Nile, she looked great-considering (and I’m sure the Percoset drip didn’t hurt). With Miss Cathy and me there out little family was complete, Nile being the last addition to the family nineteen years ago. She was remarkably composed and alert, not at all what I expected from someone with a tube sticking out of their side and only one functioning lung. She was sitting up in bed chatting with us, seemingly more concerned for everybody else than herself.
Miss Cathy sat in the chair by the bed holding Nile’s hand as Tony filled us in on her condition, saying that it was still a matter of “wait and see” whether or not surgery was going to be necessary. It was after nine when we got there and we stayed for a few hours, Mary Washington being one of a few hospitals I’d ever been in that had such a liberal policy for visiting patients. But, it was getting late so we ended our visit and drove to Tony’s house, everyone exhausted from the day and anxious to get a little sleep before being back at the hospital in the morning.
By eight am Suemi, Miss Cathy and I were in the kitchen having breakfast; Zachary had to go to work and Tony had decided to take another day off from his job and was already at the hospital. I was sitting in the family room that opened onto the kitchen, Suemi was at the kitchen counter preparing snacks for everyone and Miss Cathy was at the kitchen table with her back to me, talking to her daughter in law. Knowing that she could sit there and talk forever I suggested that she might want to think about getting ready since it would take her awhile and I knew she was anxious to see her granddaughter.
She said, “I think I’ll just sit here and relax for a little while” which I thought was an odd response since all she’d been talking about was getting to the hospital but I shrugged, and decided to fire up my laptop to distract me from overhearing the conversation between the women that I’ve heard many time before. A few moments later I caught something out of the corner of my eye and it was Miss Cathy’s hands that were shaking. I got up to go to her just as the shaking started to take over her body, Suemi saw this happening at the same time and reached her first, cradling mom’s head against her side talking to her soothingly as the shaking became uncontrollably.
No sooner had I reached the sink to get her a glass of water when her eyes started to roll back in her head and she vomited the oatmeal she’d had for breakfast. Suemi said, “Call 911” and I fumbled with their landline, surprised by how quickly the situation had gone from familiar to chaotic, panicking a little myself, before calling the paramedics on my iPhone and regaining my footing. Suemi was brilliant, she was in control and calm and I followed her lead, grateful for once, not be alone to cope with the situation. By the time I’d given the 911 dispatcher the address and told her the situation Miss Cathy had stopped shaking and I could see that she had “come back to herself” (her eyes were newly focused and she was coherent). She seemed out of any immediate danger and said that she didn’t want to go to the hospital but she still wanted the EMS to come. She was understandable upset and started to cry a little, Suemi by her side to comfort her. I knew she was out of danger when she started barking orders that Duke, the dog needed to be put away before the emergency service workers arrived- even with vomit on her nightgown she was still trying to be in control.
We’d cleaned her up as best we could and she was trying to change out of her nightgown into a pair of pants by the time the paramedics arrived (which was under ten minutes). Two paramedics worked on her while a third asked her questions to ascertain her condition and to determine how alert she was. I jumped in when necessary (to correct some misinformation she had given) and I took a mental note that I should always carry my “Mom” notebook (which has all her medical history, prescriptions and all relevant information in it) with me at all times so that I’m better prepared in a situation like this.
When the medic asked her if she wanted to go to the hospital she said “yes” and burst into tears. I went to her this time (Suemi was out in the garage with the dog) and held her close as she sat in the chair crying, saying that she was afraid and embarrassed, her ego de-flated. I told her that I was there, that Suemi was there and nothing was going to harm her. I told her that all the people in the room were there to help her. By this time another team had arrived from an ambulance service and they put her on a gurney and drove her to the local hospital emergency room. I grabbed as much of her stuff as I could and followed in my car, Suemi waving from the open garage door saying she’d be there soon.
We stayed in room 10 of the emergency room for about four hours while they took an EKG and chest x-ray. She’d calmed down considerably and slowly became her usual “Chatty Cathy” self with the nurses. The doctor examined her early on and came back a few hours later with the test results, which confirmed that her episode was anxiety related. Her blood sugar and pressure were understandably elevated so they wanted her to stay for awhile and relax until her levels could stabilize then I could take her home. This would be the third time she was in the emergency room due to a nervous response to a situation; it was obvious that she couldn’t handle stress anymore.
Once we were home I got her comfortably into bed where she napped for the rest of the day. I’d already talked to Suemi in the emergency room about what we needed to do moving forward and later I called Tony at the hospital where he was still waiting to hear from the doctor about Nile’s condition to tell him that Miss Cathy was okay. We all agreed that what happened to mom confirmed what we’d suspected all along. We decided that it was best that we no longer tell her anything that could upset her. She just can’t handle bad news or stressful situations anymore; it’s not good for her health.
While she was resting I washed her soiled clothes, refilled her meds and got back to some our day-to-day routine. Then I lay down for a nap myself and slept like a dead man for four hours, waking up at 7 pm to check in on Miss Cathy and she was sitting up in bed watching television.
Post script: On Saturday afternoon Nile was released from the hospital after her lung had “re-flated” without the need for surgery. Her prognosis is good and she should be able to return to her hectic, active lifestyle as a co-ed in a few weeks, but since this happened to she has a recurrence rate of 30% in her lifetime.
As for Miss Cathy, she woke up on Friday feeling like her old self, “pumped up” as good as new. Her cousin, Mary came to the apartment with her daughter Juanita for a visit and that lifted her spirits but nothing made her happier than finding out on Saturday that Nile was home. I could hear her on the phone talking to Tony offering to come over to “take care” of Nile while she was convalescing-completely oblivious that “she’s” the one in need of care.
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.
Monday, July 4, 2011
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.
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.
Subscribe to:
Posts (Atom)