Here's one tip I've been meaning to offer to caregivers for declining elders

by Ken

Earlier today I mentioned that I've written a bunch of initial drafts of never-finished posts based on my trip to Florida last month for my mother's 90th birthday. The one I most regret not being able to complete had the working title:

TIP FOR CAREGIVERS FOR THE ELDERLY

Here's as much as I actually wrote in the most extended draft. (Note that "my journey into the Land of Aging and Decline" refers not to my trip to Florida, as one might easily presume given the present context, but my experience trying to help my mother since she suffered -- and survived! -- a brain hemorrhage 13 years ago, only a couple of years after my stepfather's merciful death ended the five years or so she had spent as sole caregiver to an Alzheimer's sufferer, with no resources beyond Social Security and a small amount of savings.)

TIP FOR CAREGIVERS FOR THE ELDERLY

I sure haven't learned much from my journey into the Land of Aging and Decline. One thing you have to stop being constantly surprised by is that you've ventured into a territory where everyone you deal with, by virtue of dealing with the subject on a daily basis, knows everything about it and you know nothing. The people you deal with will generally fall into one of three categories:

* Many of them simply forget the knowledge gap and simply assume that you know what they do. In my (admittedly abject) experience, the chances aren't good of correcting this misimpression -- it usually seems as if they've "forgotten" for good reason. Nevertheless, it's worth pointing out that they are masters of this universe while you are a pathetic ignorant wretch and throw yourself at their mercy. I don't recall that it ever worked for me, but you never know.

* And then there are the sharps who know perfectly well that they've got you over a knowledge barrel and take full advantage of it.

* And then, every once in a while, you encounter someone who understands exactly what it's like to be in your position and offers up his/her (more likely her) knowledge. Take merciless advantage. Some of what you're told could be (a) correct and (b) useful.

I did promise you an actual tip, though, and here it is.

Growing old is another of those walks of life where a sharp separation is enforced between Them What Can Pay and Them What Can't. You can't change the ultimate destination, but at every step along the way it makes the most astounding difference if you can pay to cushion the trip. Assuming you're in the overcrowded bus, or perhaps troop transport, with the rest of us who can't buy our way through, however, and assuming your loved one reaches the all-too-common point where you have to find full-time care for him/her, you may think you have no choice but to submit to the horror of a Medicaid application to cover the cost of a nursing home.

I know, I know, you don't want to hear the words "nursing home." Again, if you're really loaded, your experience of nursing homes is going to be different, but for most of us, while there are undoubtedly worse and less worse ones, it's the ultimate betrayal of the loved one, consigning him/her to warehousing. I know, because I had reached that point, I thought, and I went through those Medicaid application horrors.

EXAMPLE OF MEDICAID APPLICATION HORRORS

My mother is, or was (she isn't so much now, alas), the kind of person who years ago, I guess after my stepfather died, dug deep into her pretty bare pockets to fund a "pre-needs" contract with a funeral home that should cover all the costs associated with that inevitable eventuality, thereby sparing my ever having to negotiate all of that. I bless her for it. (And there's no point being sentimentally superstitious about it. It's not as if there's some way she's going to avoid making use of the deal.) However, when it comes to a Medicaid application, you discover, unless such a contract is clearly indicated as being "irrevocable," it qualifies as -- and I hope you're ready for this, because I sure wasn't -- an asset! Because, you see, you could cash it in. And I guess you could.

This is where it helps to realize you're not the first person who's traveled down this path. Of course the funeral home has encountered this before, and is familiar with the form for making the contract (ta-da!) irrevocable. It's just that when you're 1500 miles away, and doing the paperwork by fax, which in turn is being faxed to the hospice case worker who then has to fax it on the state agency screening the application for pre-approval

Oh wait, I guess I didn't mention that by the time of the Medicaid application my mother had already been recommended for hospice care, and I now actually had people on my team

The draft breaks off there. (Honestly, I didn't remember I'd written that much. Until now I hadn't looked at this since I wrote it.) I'm guessing the draft broke off because: (a) I felt uncomfortable burdening readers with that degree of personal detail, unlikely to be of interest to anyone not involved; and, worse, (b) I realized I still hadn't gotten to the damned tip!

Now, by choosing to withhold most of the personal detail, I may have left room for misunderstanding. A commenter commented on my post:

You stated

I took my frenzied two-day trip to Florida to help celebrate my mother's 90th birthday in the little assisted-living facility where she will probably live out her days

congratulations to your mom for making it to 90. You and she must be very wealthy.

I started writing a reply to the commenter, and eventually realized that I was covering the missing material from that old draft post. Here's what I wrote:

I'll take that as a friendly comment. You would have no way of knowing, nor is there any reason why you should care, the financial ordeal we've been through in recent years, or how much debt I've racked up.

I will just say that there's no way my mother, like so many seniors, could have survived without Medicare, which I'm here to tell one and all is a government program that works right well.

If you think being able to afford such a nice ALF is a sign of riches, then you should know that my mother many years ago made the decision to take out a long-term home health care insurance policy. It cost her money she could ill afford, but it went on to provide her with some form of home care when the need arose, as it has more or less continuously in the last dozen years. It's that insurance policy that is now paying for the ALF.

One of the pieces I started drafting and haven't been able to finish yet contains a couple of tips for the caregivers of elders. One of these was that if the person in question has LTC insurance, it's possible that the policy will cover an ALF, and there are now quite small ones where residents may receive the kind of individual attention my mother does in hers.

Now the first point I want to call attention to iin the above is how totally Medicare has been woven into my mother's later years -- as indeed it was in my late stepfather's, though it offered essentially no help with the Alzheimer's ordeal. In the course of the debate on health care reform, there has been a certain amount of sneering about Medicare, and also -- I'm relieved to say -- occasional loud and proud declarations of how completely Medicare has transformed the experience of being old in the U.S. My folks also relied on their Medigap supplementary policies, but without Medicare there would have been nothing to supplement.

And then, finally, there's the tip: If your cared-for elder had the foresight to take out an LTC policy, check the policy and check with your insurer to see whether "home health care" benefits may be payable if the insured person's home becomes an assisted-living facility. It wasn't till I'd been through the nightmare of assembling all the materials for the Medicaid application -- and that was with the invaluable assistance of the hospice case worker (I don't think I could ever have done it on my own) -- that somebody mentioned this possibility to me, while also mentioning this new breed of non-warehouse-type ALFs (as far as I'm concerned, the traditional ones aren't much better than nursing homes). Our insurance company confirmed that a properly accredited ALF would indeed qualify, and the hospice social worker happened to know about this splendid one.


POSTSCRIPT

Yes, I guess we were lucky again to have the assistance of the hospice case worker and social worker. All you have to do to get that is have your doctor give up hope for your recovery, which my mother's doctor did in February 2008. I guess luck comes in many forms.

I hope the above tip (and perhaps also the testimony on behalf of Medicare) will be of help to someone somewhere. I might have gotten to it sooner if I'd been able to process the overriding reality of the trip to Florida, which is that I still don't know whether my mother knew that was me there.

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