More on costs for home care

[Guest guest]

Hi all,

I've been " lurking " on this list for a long time, learning a great deal but

feeling that I have little to contribute. I find it ironic that it's money

that has finally encouraged me to post.

My husband, Larry, age 72, was diagnosed with LBD almost four years ago,

though I'm now certain he was ill for several years before the diagnosis. We

live on a fixed income here in the Boston area, supplemented by money we had

saved for our retirement. My own health is not great and I am not able to do

any sort of lifting, so shortly after the diagnosis, we began to have help

in our home about 12 hours a week, at the rate of $18 an hour. As time

passed and his illness worsened, Larry began attending a wonderful adult day

program ($79 per day, 5 days per week, 9:00 am to 3:00 pm, give or take half

an hour on each end, excluding transportation costs and time). Fortunately,

he is still doing well in the program, but we have come to need the help of

aides much of the rest of the time. Most of the hours are covered by

private aides, who charge $20 per hour from 7:00 am to 7:00 pm, and $15 per

hour for evenings and overnight. Two nights a week we use an aide from an

agency that charges $26 per hour for her services, of which she keeps $18.

(We began the overnight coverage at the insistence of both Larry's docs and

mine, since I was getting little to no sleep and his physical needs had

become too difficult for me to manage.)

We could find a somewhat less expensive agency, probably at the rate of $22

to $24 per hour, but we have already had two very negative experiences with

other agencies, one involving the theft of two expensive and sentimentally

irreplaceable pieces of jewelry. So I decided to use the agency recommended

by an elder care counselor who has worked with us from time to time. She has

known and trusted the agency and its staff for many years. I have also

learned that without a " deep bench " of private aides available to substitute

on short notice or to fill in during vacations, it is necessary to maintain

a good relationship with an agency. Reliable recommendations for private

aides, in my experience, usually come by word of mouth and are thus hard to

find. And once an aide has been placed in your home by an agency, she/he is

contractually prohibited from working for you privately, much as you both

may wish it. If you do the math, all of this is exorbitantly expensive, up

to $12,000 per month when we need to use extra agency time.

We are not wealthy by any means, but made the fortunate decision to buy very

good long term care policies several years ago. We could not easily afford

the premiums, but we paid them in the hopes that we could both remain at

home indefinitely in case of any illness without overburdening our children,

who live in various parts of the county.

At the time we purchased the policies, we lived in New York and bought

policies whose daily rate equaled the average daily rate of a nursing home

in our area. The policies also include a 5% annual increase for inflation.

For some reason I'm not aware of or can't remember, my policy compounds the

5% increase, while Larry's just adds the 5% to the base amount. Would that

it had been the other way around! Larry's policy has now, of course, come

into play. It will cover him indefinitely, unlike some policies that have a

four- or five-year coverage limit. It currently pays $310 per day. (I have

recently read in more than one place that most insurance companies have

stopped selling policies as good as ours, and some have stopped selling long

term care policies entirely. I am deeply grateful that at the time we bought

ours, Larry seemed to be in perfect health.)

To me, $310 a day sounds like a lot of money -- but it turns out not to be.

I am still about $2500 short at the end of each month, which I pay out of

our steadily dwindling investments. In contrast, the best assisted living

facility I have found in our area costs about $7900 per month for a

" high-functioning " memory-impaired person like Larry. To me, this seems

inconceivable, totally upside down: the " best healthcare system in the

world " makes it so much more expensive to keep my dear husband, my best

friend with whom I have shared so many happy years, at home, rather than to

send him away.

Larry will be able to continue at the day program so long as his behavior

does not harm others or himself; he does not wander; and he does not require

a " double assist " in order to use the toilet, get out of a chair, or perform

other ADLs. If he can no longer attend the program, the cost of home

assistance will become prohibitive and I will be forced to place him in a

facility of some kind. I have been cautioned by several experts that if I

wait too long to place him, he may no longer qualify for assisted living and

he may need to be placed in a nursing home. Of course, the right time is

impossible to determine. And the very thought of telling him that he can't

come home breaks my heart.

I feel guilty when I read some of your posts about the level of care you

give on your own, the distances you must drive, the costs you must shoulder

without benefit of insurance coverage. Managing all these aides and

insurance claims and medical appointments and other tasks while I am not in

the best of health, while living in a small apartment that gives us

virtually no privacy, feels like I'm running a small business in an industry

I despise -- but it is nothing compared to what many of you do. I feel that

I should be able to do more for Larry on my own. But I can't. I admire what

you are doing so much and wish you continued strength.

This post is outrageously long. I hope it gives you some useful information.

With admiration and warm regards,

Lois ( " GrammaLo " )