The Yellow Wallpaper

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.

I’ve been doing a little research and here are a few facts:

According to the MetLife Mature Market Institute:

The 2006 average daily rate for a private room in a nursing home is $206 ($75,190 annually), a $3 or 1.5% increase over the 2005 rate of $203. In 2004 the rate was $192 daily. (from the MetLife Market Survey of Nursing Home & Home Care Costs, Sept. 2006)

From the Social Security Administration’s Office of Policy I learned that the median annual income in 2004 of the 75-79-year-old age group was $23912, and of the 80+ year-old group, $21271. Both groups include married and single, men and women. But if you look at the group most likely to need nursing home care–nonmarried women–the median annual incomes were $16429 and $16304, respectively.

The 2006 Federal Poverty Level for a family of 1 is $9800 per year.

Over 70% of nonmarried women 80 years and older make more than the FPL, but less than the average annual cost of a nursing home. So more than 70% of the female population in this most vulnerable group would be forced to impoverish themselves in order to be eligible for skilled nursing care, because their earnings exceed the poverty level but won’t buy them time in a nursing home.

Now I know I should adjust the income figures to 2006 levels, but it’s obvious that a couple of COLAs are not going to make a big difference in the overall picture.

On top of all this, consider that Medicaid was not meant to be “worked” this way, but it is, and one can understand why. Medicare does NOT take care of us.

I’m doing better since my last post, which is interesting to me, since nothing external has changed. Except, maybe, my hormones–which I know are internal but I think fueled my anxiety last weekend. So the medical researchers out there who are looking for a way to use that extra NIH grant money might consider studying the effects of menopause on middle-aged caregivers. There would be no shortage of participants, I imagine.

While on the subject of caregiving, I want to link to this post by Gail at Mom & Me Journals dot net. She originally wrote it almost a year ago, but has revised it recently. I’ve been thinking a lot lately about the psychology behind the advice I often hear given to caregivers–basically, if we don’t ask for help we shouldn’t expect to get it. Can you imagine giving that advice to, say, someone with serious depression or cerebral palsy?

There are few absolutes beyond death and taxes, but one of them is that all caregivers want help. ALL OF US. Many of us are so immersed in the particular world of our care recipient that we are just too tired to write memos detailing the particular areas of need. But some of us do. Some of us turn to blogs because the experience is so solitary and isolating, and we no longer know who to turn to. This will come as a surprise to the folks that Gail refers to in her post, but it’s true.

I can speak best for adult “children” of infirm parents, those of us who might also be caring for our own children, or working outside the home. Most of us have had the experience of being sucked into the institutional care maw, whose processes serve mostly to perpetuate itself. “Economy of scale” is the prevailing principle, or, “You’re going to get this service whether you need it or not because it’s easiest for us.” And you either take the package, or nothing at all.

An example is my mother’s recent hospital stay for a pulmonary embolism. I will reluctantly admit that I appreciated the hospital’s obvious brush with TQM (Total Quality Management) had made a real difference in the way we all were treated. The institution was making an effort to reach out to its customers. But behind this customer service model lurked the same harried generalizations that underlie institutional “efficiency.”

It amazes me that hospital professionals still seem surprised when an elderly patient exhibits delerium. I would imagine that most of the patients at any given time in a hospital are over the age of 60–shouldn’t we be paying more attention to the psychological effects of hospitalization on these older patients? A number of years ago I saw my father go from lucid to delerious during the six or so hours we spent waiting in the emergency room before he was admitted for his spinal stenosis. Not once did a doctor or nurse mention that this is a relatively common occurrance for the elderly patient. I had to research it on my own. This occurred about eight years ago, and the only improvement I can see is in the nature of the restraints that are used. Instead of being tied down, like my father was, my mother was discreetly alarmed in the nursing home.

But my point here is that when my mother exhibited delirium during her recent hospital stay, the social work staff were pressuring me to make long-term care plans based on that transient state. My sister and I might say to them, “No, she isn’t this agitated and delerious at home,” and I sensed they thought we were refusing to face the truth. In addition, my mother’s embolism weakened her–as expected–but the same staff were counseling us to ditch the plans for assisted living in favor of a nursing home, based on my mother’s pre-rehab state. “She doesn’t look like she can walk to me,” one of the social workers snapped when I resisted her.

Maybe, since Alzheimer’s Disease alone would not qualify her for Medicare benefits (ARE ANY MEMBERS OF THE SENATE SPECIAL COMMITTEE ON AGING LISTENING TO THIS??) the staff were trying to find some disability that would keep her in rehab as long as possible. But isn’t that just another sign of something wrong here?

So back to my original gripe about having, on top of everything, to ask for help or forever hold our peace: there’s help and there’s help. Institutional help usually means orchestrating a spectrum of unaffiliated services or dealing with a monolithic institution (see also Mike’s experiences at Fading from Memory, as well as Bert’s at Had a Dad). We have to figure out what’s private pay and what’s paid for by insurance, which usually induces apoplexy at the disconnect between Washington and the rest of America.

And why are our Congress members NOT looking at the fact that a nursing home costs upwards of $6000 a month: How many people of retirement age earn that much from their social security and pension? How many of them can afford this, or assisted living, without impoverishing themselves? And what further toll does this take on the caregiver, who is by this time exhausted but still wants the best care for her charge? The caregiver must now enter the world of the housing market, on top of everything else, just to “spend down.” Instead of coming up with an institutional solution for this disconnect, the burden is again placed on the person responsible–the caregiver. As long as we rely on this tortured misuse of Medicaid we are not facing the primary problem of our responsibility to our most vulnerable citizens AND we are keeping a dirty little secret that is anything but, and which is a further insult to the unpaid caregivers whose collective role we don’t really want to acknowledge.

I’m going to continue this post tomorrow.

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.

I’ve been trying to describe to myself what causes me stress these days. If I can identify the factors, maybe I can manage some of them? [she wondered hopefully]. I don’t know when I began to think of stress as something like smog–diffuse and unavoidable. I guess it is, but nevertheless, it originates somewhere–either in situations or beliefs that can or cannot be modified.

I’m open to argument, but I think my biggest stressor is financial. If I knew that my mother was assured of the care she needs, right up until the end of her life, I might feel less stress. By “the care she needs” what do I mean? Sure, when the situation worsens beyond my ability to care for her, she can move to a nursing home where the staff is underpaid and for which I will have to sell her house. I will continue to have to monitor her care, while at the same time working AND putting her house on the market. She’s lived in this house for almost sixty years–it will take months to clean it out and fix it up to make it sellable.

I would be willling to continue caring for her if I could afford to hire in-home help, but I can’t because Medicare won’t cover it unless she meets certain conditions that the otherwise healthy Alzheimer patient doesn’t meet. In Rhode Island, a home healthcare aide is about $20 per hour. If I hired someone just to fill the hours I’m at work (plus travel time)–about 45 hours–it would cost about $900 per week out of pocket, over $3600 per month. And I would still be the only caregiver from 4 PM to 7 AM.

I’ve looked at several assisted living facilities. I’ve looked only at places with dementia units, and these require a certain minimum level of mobility on the part of the resident. If she were bed-ridden, the alternative would once again be the nursing home, and unless I could pay the cost out-of-pocket, I am once again at the mercy of Medicaid. The assisted living costs per month range from $3700 to $5000 (oh, there are more expensive options but I’d rather not know about them). My mother’s pension and Social Security income is less than $3000 per month. She would most likely qualify for the VA’s Aid & Attendence benefit because my father was an active-duty veteran, and I’m told that this might be somewhere around $800 per month.

So we would still have to sell the house. But I would rather sell the house for this–because assisted living is private-pay, the standards are higher. Not all nursing homes are bad, but the Medicaid system is no incentive to administrators to go the extra mile. At least once a year in Rhode Island we hear the story of someone who dies of neglect–in one case an entire nursing home was closed by the state. But in the end, the nursing home is the only option for most middle-class folks. There IS a new program called PACE in the state, but space is very limited.

So I’m facing both the dire prognosis of the disease as well as a grueling logistical transition–and one that is likely to be the final nail in my mother’s coffin (and possibly my own, too).

Is it odd that the first stressor is financial, and not the prospect of Stage 7 Alzheimer’s? I don’t know–of course the prospect of that level of debilitation is frightening, but if I had SOME control over my mother’s environment and care–which is what the financial means would give me–I know I would feel much, much better. I know that she is lucky to have a house to sell, to have that financial resource, but having to sell it under duress frightens me. Another option that I haven’t explored fully is the reverse mortgage (note to self: start looking into this)–but I’ve heard that one has to be extremely careful with these.

It seems silly at this point to get into the little daily routines that now also cause me stress, because the stress I’ve described here is as tight as a vise around my chest, all the time. It drives me to pray that my mother will not last long enough to get to that last stage, both for her sake and mine. How horrible is THAT wish?