The Yellow Wallpaper

My mother and I met with the man who handles fiduciary matters for the VA here in Providence. He came out to Garden Manor. I arrived early and told my mother that someone would be visiting us in order to have me sign some papers so that she could have some extra income. I started to tell her that this was all the result of Dad’s WWII service but the look on her face told me that this didn’t add up, so I let it drop. She liked the idea of getting extra money each month–this is due more to her lifelong concern with making ends meet than with any awareness of her current financial situation. She does often ask me to give her some cash to keep on hand, claiming that she often needs it, and I usually put this off. When she first moved in I forgot to remove about $40 from her purse and the money disappeared. I’ve given her a few dollars here and there but that always disappears, too, so I won’t do that anymore. A friend suggested that I look for play money–maybe having some of that would ease her feeling of vulnerability. If I could find some that looked remotely like real money I might do this–it’d be interesting to see whether that would disappear, as well.

The VA man was very kind to my mother–he asked her a couple of the questions from the MMSE (”Do you know who the president is?” No. “When is your birthday?” March 31, 1922. “Who is this woman [pointing to me]?” My daughter.). I’d had to bring along an updated financial accounting of my mother’s affairs, plus a letter of recommendation (written by my boss) for myself. He explained the accounting I would have to give to the VA if I spent more that $1000 at one time on anything, and the end-of-the-year financial accounting that would be due. Then he inspected my mother’s room.

After he left, my mother said to me, “Since you did all the work, you can keep the money,” which made me cry a bit when I remembered it later on.

I’ve received a letter from the VA confirming that I am my mother’s fiduciary, and I’ve opened a trustee account at the bank for the money, when it arrives. She should be receiving a substantial retroactive benefit (considering we applied over a year ago), and I’ll have to get the VA’s permission to apply a chunk of that to the home equity balance (from which I’d been borrowing to pay her rent each month). The paperwork and regulations overwhelmed me at first, but, step by step, I’m figuring things out. At that point, I’m going to post an account of my experience on Debbie Burak’s site in the hope that it will prepare others.

My mother has been in a fairly good mood, although she has lately been preoccupied with the whereabouts of “the boys”–presumably students that she feels responsible for. I tell her that I’ve spoken to “the office” and that they will look out for the boys in her absence.

Last Sunday we went out to lunch at our usual spot, a creamery about a half-mile from GM. I could feel the woman in the booth behind us looking at us, and finally she leaned over and said to me: “Is that Mrs. P. who taught third grade?” I said yes and she told me that my mother had been her teacher, and that she was now a teacher herself because of my mother. “You are awesome,” she told her. My mother was eating her hot fudge sundae (the whole point of going out to eat) at that moment, but she paused for a minute and smiled, even though I know she didn’t recognize the woman. I whispered something about my mother’s condition to her.

So that’s where we are today, a snowy March 1st. I always feel as if I have so much to do, but I wonder if that feeling is self-perpetuating, a habit I’ll need to break. I’m thinking of putting it all aside today and walking over to a nearby college where Barak Obama will speak. Rhode Island has a primary this coming Tuesday, so in the past few weeks we’ve seen Hillary, McCain and Huckabee. At this point I intend to vote for Hillary but I can understand how appealing Obama is. He could actually be any race and still command the attention he’s getting. I believe that Hillary has the smarts and the experience to be president but I don’t underestimate the unifying power of presence, which Obama possesses. He’s smart, articulate, charismatic.

I’ve been thinking a lot about the symbolic aspect of the presidency–how deeply do the American people want to see themselves in the figure of the president? What happens when they don’t? This came to me when I was watching a documentary about Theodore Roosevelt, someone who was a problematic political figure before he became president upon McKinley’s assassination. I think he came to epitomize America as it wanted to see itself at that time. Brave, vigorous, smart, tenacious. It would be thrilling to me to look at the White House and see either Hillary or Barak looking back at me.

I finally got the thick envelope from the Veterans Administration, and I felt like a high school senior, trying to guess the contents before opening it.

The VA awarded my mother the full Aid & Attendance benefit, retroactive to the end of Dec. 2006.  Whew.  BUT because she has Alzheimer’s, they will designate her as “incompetent”, which means they will appoint a fiduciary–another delay before we get any money.

They refused to consider my legal power of attorney when I first applied for the benefits, so I had my mother sign the application, even though she understood only broadly what she was signing.  My only alternative was to go to court and get guardianship of her, which would have taken too much time.  I understand from reading VeteranAid.org (I could NOT have applied without the help of this website and its creator, Debbie Burack) that the VA now has a form that assigns representative power to someone other than the applicant at the outset of the application.  My recommendation is to complete that form, even if the applicant is still aware of what’s going on.  I don’t know if it will prevent a delay like mine, but it’s easy enough to do.

Anyway, I will send the VA another letter, along with another copy of my power of attorney, and request that I be appointed my mother’s fiduciary.  I’m feeling like this is a time-consuming pantomime–do they really believe that someone with dementia could complete that application, just because they signed it?  At least I know that the money is coming at some point, which is an ENORMOUS relief.

My mother is doing as well as I can expect at Garden Manor.  I really have no complaints about her care–they have a wonderful staff and the place is clean and cheerful.  There is a regular round of activities–exercise, rides, cookouts, parties, music and get-togethers.   There is a monthly group for family members, run by the staff social-worker.

For me, the caregiver, it’s a challenge to straddle that line between accepting the inevitabilities of the disease and trying to keep some kind of meaning in my mother’s life.  I remember thinking–only a year ago–that once she could settle into assisted living we’d be able to coast for awhile, that there would be a holding pattern, just so I could catch my breath.  There is, and there isn’t.  Now that I don’t have to worry as much about her safety and physical care, I can notice more of the disease itself.  The gradual fading away of affect, the effort required just to negotiate her world, where she is continually puzzled by her mother’s absence, where she is still responsible for “the kids”.  Conversations, such as they are, are a great effort on both of our parts.  She is usually just THERE, while I try to tease information out of her.  She can’t remember whether she ate lunch, but can recall where each of her siblings went to high school.

So it’s a hard experience all around.  She’s slowly disappearing.

My mother has now been living at Garden Manor for six months, and here is where we stand:

• On the Aid & Attendance front, I reapplied in late February–four months ago–and have not yet received a decision. I had originally sent the application to the Providence, RI, office of the VA, but received an acknowledgement from the Philadelphia office shortly thereafter so I imagine that’s where the application is sitting. I send them a printout of the cancelled check for my mother’s assisted living rent each month, just to remind them of my situation.

My question for them at this point is: If you won’t allow folks to apply for the benefit before they commit themselves to a care situation–forcing them to OVER-commit themselves financially while crossing their fingers and hoping they’ll receive the monthly benefit–how do you expect the average middle-class potential beneficiary to manage? I DO appreciate that the benefit is awarded retroactively, but my fingernails are chewed to the quick at the possibility that they will pull some little-known subclause out of the darkness and refuse my mother benefits. And my mother is in a relatively good situation: she has a decent pension, she is in a reasonably priced assisted living home, and–maybe most importantly, not to blow my own horn–she has a family member (me) who is stubborn, tenacious and may also have an inflated opinion of her own ability to get things done on her own.

She also had a healthy savings account (now practically gone) and a life insurance policy that I cashed in. It’s true that my mother has a house, which is not included when her total assets are assessed by the VA. I am holding on to it for now for several reasons. The first is that I believe she is entitled to the A&A benefit and this extra monthly income will cover her AL rent without my having to liquidate her property. My father served this country for almost three years on a small boat in the Pacific during World War II, and he is a perfect example of the veteran this benefit was created for. When he returned, both parents worked from Day One for this house. If I sell the house now, my mother will no longer qualify for Aid & Attendance–this logic might seem disingenuous, but we are facing a very open-ended illness. My mother is in good physical health right now, but I have to consider the possibility that the Alzheimer’s will carry her along until she needs a nursing home–which we CANNOT afford. I spoke to a professional from the local Alzheimer’s Association who recommended that, if and when the time comes for a nursing home, my mother should at least start off as a “private pay” resident, if possible. That’s where the house will come in.

• I began seeing a therapist about a month ago, after the depression and anger began interfering too much with both my work and home life. I was sleeping and eating too much, dreading the weekends and feeling totally overwhelmed. I couldn’t understand WHY this was happening now that my mother was in assisted living and I was back in my house. I’d expected a letdown but not this. I like this woman very much–she’s professional and warm–and so we talk about what I think and what I feel, which don’t always jive. And I’m gradually feeling better. I’m recognizing that while a situation can be tackled intellectually, I can’t always set an emotional timetable for myself. Acceptance, grief and letting go can’t be pencilled into a calendar. It’s messy, especially for someone like myself who is most comfortable with a script. Things aren’t always what they seem.

• My mother seems to be “home” most of the time at Garden Manor. Yesterday when I was visiting, one of the aides brought her her pills.  “She is always smiling,” the aide said to me.  Of course there are wrinkles–I try to get to the bottom of my mother’s anxiety when I sense it.  “What are you worried about right now?” I asked her yesterday.  “I think you’re hiding something from me,” she said.  I am, I suppose.  She still asks regularly about “Ma”–where is she, where does she live?  I think her anxiety is related to “Ma” but I’m still feeling my way around here.  Redirect is still the best advice.

So this is the six month state of affairs.  It’s still caregiving, but it’s a different kind of caregiving, for me.

I received a letter from the VA today, informing me that my mother had been denied the Dependency and Indemnity Compensation (DIC), as I suspected she would be. I should explain that the application I submitted actually served two purposes: one, to apply for DIC, which is awarded based on service-related medical conditions; and, two, to apply for a death pension for the surviving spouse based on medical conditions that demand “aid & attendance.” My father did not die of a service-related medical condition, so I knew that my mother would not qualify for DIC.

On the other hand, the VA did not make a determination regarding the monthly death pension (Aid & Attendance), which does not surprise me. In October, I wondered whether I should wait until my mother actually moves into assisted living to submit the application–I really couldn’t imagine the VA awarding a death pension based on anticipated expenses. And they will not. They did, though, send along VA Form 21-8416–”Medical Expense Report”–and Form 21-0518-1–”Improved Pension Eligibility Verification Report (Surviving Spouse With No Children)”–and explained that when either her income decreases or her medical expenses increase I can submit both forms to be considered for Aid & Attendance benefits.

My only quibble is that they did not consider her prescription costs this time around because these “were paid prior to your date of claim and weren’t considered to be recurring. Recurring expenses are those which occur on a regular basis and can be accurately predicted.” But I may not have represented the situation clearly enough on the application; I should probably have indicated how long she has already been taking these drugs and not have assumed that the VA would extrapolate from one monthly statement. In any case, I’ll be submitting the revised information to them shortly–although I actually have until December 31, 2008, to send them and still be considered for medical expenses paid after my original application date of October 25, 2006–so I’ll know enough to be more precise.

I didn’t expect to hear from them this soon–a month and a half after applying–so I’m impressed with the expeditiousness of the Providence office.

On a related note, I got a call from the assisted living home that there would almost certainly be an opening in January. I’ll have more particulars on Monday, but I guess I feel both relief and fear at this news. Relief because I really did not want to deal with this before Christmas, and fear–well, I probably don’t need to go into that right now.

We have been on an even keel for the past few weeks. I’ve been going into work for a few days each week, which has improved my outlook, and my mother has not been in the grip of the depression she’s experienced so often in the past. She is still losing ground cognitively, but she has improved, affectively. Her doctor has actually reduced the daily amount of her antidepressant–she had been on 7.5 mg. until her insurance, Humana, stamped their big foot and denied coverage of this amount. So it was back to 5 mg. and, interestingly, an improvement in mood. But she also has the round-the-clock presence of either my sister or me–she is not left alone at all–which is certainly alleviating her previous anxiety at being left alone.

I also visited with the social worker at the local Alzheimer’s Association, who was wonderful to talk to. She spent nearly an hour with me, discussing mostly my ongoing anxiety about assisted living. She also loaned me Moving a Relative with Memory Loss, an excellent book about how (and whether) to talk to your loved one about the impending move, and what to expect of yourself during and after it. It’s a reassuring, practical guide–I’m about to order a copy for myself from the publisher.

So here we are. It’s going to be such a big change that I can’t even think too much about it right now. All I know is that I’ve been knitting ferociously for the past few weeks–I’m finishing a sweater (not the Bohus…yet) and beginning a large lace shawl. As I knit I try to focus on the possibility that I’ll be completing this shawl in my own home. I try to imagine that my mother, after her adjustment period, settles into assisted living and actually enjoys the social stimulation. She realizes (in her way) that Liz and I will always be around, no matter where she lives. I probably shouldn’t spin too pretty a picture for myself, yet.

Just an update on my Aid & Attendance application: I mailed it–certified mail with a signature receipt–about 3 weeks ago. Within a week of mailing I received a letter from the regional VA Office here in Providence telling me that the VA does NOT accept applications based on Power of Attorney. They claim that POA is too broad, even though my particular POA document specifically states that I am given the authority to apply for benefits and pensions.

So I had my mother sign the application and re-sent it to them. I had explained to her earlier that I was applying for a benefit based on my father’s WWII service, but I had decided to sign it in the end, since I had initiated and completed the application. I thought that would be the most forthright way of applying, given that I had already been assigned her Power of Attorney. I reviewed the application with her in a very broad way before asking her to sign it, knowing that she trusts me.

Now I’m revisiting Medicare pt. D. I spent several months last year trying to figure out the new prescription insurance, before selecting what I thought would be “The Plan.” But that was the optimistic first year–the pieces are now falling into place, forcing many of us to recalculate.

I had selected Humana’s top plan for my mother because her monthly prescription costs average $600. The monthly premium was relatively high–$55–but that plan had no deductible and covered the “doughnut hole”, and I was willing to pay a higher premium and copays in order to avoid having to pay 100% of her prescription costs after we had reached the $2400 ceiling, which would have occurred sometime during April.

My mother’s monthly premium will increase to $87 next year and the plan will cover only generic drugs during the gap period. There are no plans in my area that will cover brand-name medicines through the gap period in 2007, so I’ve chosen a plan with a much lower premium. Basically, we’ll be paying 12 months of premiums for about 6 months of coverage, including the catastrophic coverage.

A good overview is here.

So I’m counting on the newly Democratic Congress to make good on their promise to work toward negotiating lower prices with the pharmaceutical companies.

Several times this past week I’ve heard myself telling someone that my mother would probably be moving into assisted living fairly soon. Each time the words startled me–as if I were hearing someone else saying them. I don’t know when the “if” became “when”–or even if it truly has become “when”–but a part of me is clearly readier to think about the prospect.

Since I last posted my mother has been having “good” days. She still asks me each and every night “Where did everyone go?” She still looks for my father before going to bed. She still sits in her place on the sofa for most of the day, staring at her hands or falling asleep. But no unusual agitation, like last Tuesday. No wanting to “go home.” No wandering at night. I did have to remind her to change her clothes on Thursday, which she did readily. But we were back on that steady keel that lulls me into thinking we could go on like this indefinitely.

Maybe I know just a bit more surely that this won’t last? Maybe I’ve seen enough days like last Tuesday that erupt out of nowhere and become the new reality before dissolving? And each time that happens I absorb just a little bit more of what Alzheimer’s means, and this knowledge stays with me–scares me, actually. No matter how much I arm myself intellectually, I’m never emotionally prepared for my mother’s dissonances. Part of me remains status quo, but another part of me panics. And the way I cope with panic is to act, sometimes doing something I never thought I’d do, just to manage the horrible feeling in my gut.

And so I took time during one of the days I took off to do some more hard figuring, some creative visualization about my mother’s potential move into assisted living. I’d been dragging my feet a bit on the Aid & Attendance–I pulled the application and forms out again and requested a “pro forma” from the facility whose waiting list she’s on, in order to project her financial need. I then made a worksheet of her living expenses in the facility and at home. I suggested to my sister that she think about moving into my mother’s house (and keeping up the expenses, which are pretty low) when my mother moves into AL, at least until the house goes on the market–since my sister is unhappy in her living arrangements. Doing this has calmed me down.

Each time my mother disconnects more–even if the disconnect doesn’t last–I see the future. And I understand why I was advised to investigate assisted living in advance. I can imagine that the next disconnect will push me even more deeply into that panicky place where I must do things I just can’t imagine doing right now. Right now I pray that the admissions counselor will not call to tell me there’s an opening for my mother–at least, not until after Christmas? I still pray that she will never have to leave her house, but I wonder just who I am trying to protect with that prayer?

I feel so false to my mother by not involving her in these preparations, but I’ve played out that possibility in my mind countless times, and the only way it works is if my mother is her old self, able to understand the situation. I bring it up with her occasionally, usually in the nurse practitioner’s office in the hope that hearing it from someone other than me will make a difference for my mother. But I know that “if” and “when” moving becomes the only alternative it will be tough going.

And so I keep in mind what her doctor told us at our last visit. “It’s going to be harder on you than it is on her,” he said, and I sensed that there was truth in this as well as reassurance.

My first Aid & Attendance post received the following comment, which is definitely worth repeating here:

Hey Deb,

I read your post about trying to get VA benefits, and thought you might
like to know about www.GovBenefits.gov. It’s the official benefits Web
site of the US Government and provides information on more than 1,000
programs including scholarships. The site also features a free online
questionnaire to help determine eligibility. Interested readers can
also visit www.GovLoans.gov, the sister site of GovBenefits.gov, to find
information about Government loan programs, including veteran’s benefits
and educational reimbursement loans. I hope you find these sites
helpful to your readers.

Regards,

Awais Sheikh
GovBenefits.gov Team
US Department of Labor

Debbie Burak, the creator of VeteranAid.org, also left a comment for me that I’d like to repeat:

Deb,

If I might suggest to you, having walked in your shoes for not only my
mother but my father as well, which is why I created veteranaid.org,
contact Denver Combs at www.vetassist.org.

He is one of the most informed individuals about all veteran benefits
that you may not know about, and that your mother would be entitled to
now, as well as you since you are acting in the capicity of her
care-giver.

There may be some financial relief you can take advantage of to help
you now.

I hope this might help give some relief in dealing with some of the
stress for you.

Debbie Burak

Finding each of these in my mailbox was a very pleasant surprise–I hadn’t contacted either person. I’m impressed by their finding my blog and taking the time to offer further help.

As far as my application goes, I received the copy of my parents’ marriage certificate from the Vital Records Office of the City of Providence within a week of requesting it (despite–embarrassingly–my listing the wrong year of their marriage). I also received two copies of my father’s separation papers from the National Personnel Records Center, Military Personnel Records division in St. Louis, Missouri, just two days ago after requesting it electronically (I still had to sign a page and snail-mail it). Tonight I sat down with the application itself, just to pencil in what information I knew offhand.

The difficult part will be putting together a list of my mother’s income and assets. Not that her financial situation is extremely complex–but I have the impression that there’s more to this than meets the eye. Here is where I will return to VeteranAid.org and also contact Denver Combs at VetAssist.org.

I will also need a medical statement from my mother’s doctor. I had planned on making an appointment to talk with him about my mother’s health–now I’ll have a specific reason to do this.

I haven’t told my mother that I’m doing this, but I will eventually have to. Keeping this from her has seriously stressed me lately, along with making the “pre-arrangements” with an assisted living facility. Mailing the deposit that will put her on the waiting list was like trying to lift a 10-ton weight: I just couldn’t do it. Day after day I postponed filling out the short form and writing the check, and when I finally completed and put them in an envelope, I carried the envelope around in my bag until it weighed me down physically. I finally shut my eyes and dropped in into a mailbox.

I keep telling myself that this is all a precaution. I even told this to the woman I’m dealing with at the AL–I’m not ready yet, I’m just doing this to be on the safe side.

I am beginning the process of applying for a Veterans’ Administration benefit called, informally, Aid & Attendance. I hadn’t heard of it until a co-worker of mine told me about it. At that point I found a website that will “talk” me through the process of applying. I understand that you can hire individuals or organizations to process the application for you, and that this may cost anywhere from $200-$600. I’m arrogant enough to try to do it myself, and I thought I would keep a running account of my progress in this blog.

According to Debbie Burak, who is the creator of the Veteranaid.org website, if the individual applying for the benefit has Alzheimer’s Disease (or any form of dementia) then the VA will require a fiduciary be assigned, which will involve a interview with the applicant. Burak suggests being forcefully proactive, otherwise, this circumstance will create even more of a delay in an already-longterm process. This makes me a little nervous on my mother’s behalf. I have durable power of attorney already, and I hope that will count for something.

In short, Aid & Attendance is a monthly pension awarded to qualifying veterans (with at least 90 days of service, some of which must have occurred during wartime), their surviving spouses and their parents, to offset nursing home, assisted living and homecare costs. (I am going to track down the statute and post a link here. ) The person applying must have less than $80,000 in assets, excluding their home and vehicles. I’ve oversimplified greatly here, so it’s best to look at Burak’s site for the details.

What I’ve done so far is to download a copy of the actual application, VA form 21-534, which looks to be about 6 pages long and includes a 4-page instruction sheet. From this (and from the Veteranaid.org website) I can see that I will have to get copies of my father’s Separation papers, as well as a copy of my parents’ marriage certificate.

There are several ways of getting a copy of Dad’s Separation papers–all of which require a signature–so I’ve opted for what seems to be the fastest: The National Archives has a site called eVetRecs. You are taken through a sequence of screens and asked basic questions about the type of record you want located: name and SSN of veteran, which branch, approximate discharge date. This generates a printable sheet that has a barcode. I’ll have to sign the sheet and mail it to an address in St. Louis, MO, within 30 days, or else the request is deactivated.

(The annoying part of this step is knowing that I have a copy of my father’s separation papers somewhere at home–we needed them in order to get the VA to provide his gravestone and military service. But because I am such an orderly individual, it will take 3-4 passes before I find these papers, tucked, no doubt, in a perfectly logical (at the time) spot. )

From the bit of research I’ve done on local records, I’ve discovered that I might do better contacting the city of Providence for a copy of my parents’ marriage record, rather than the State Dept. of Health (which holds all marriage records less than 100 years old). I think I’m going to try Ancestry.com’s VitalCheck which charges $15……well, I just tried it twice, and both times got an unintelligible error message, so I guess it’s off to the snail mail.