Because of what the Foundation does and because real geriatric care expertise is so hard to find, I occasionally get questions about elder care. In dealing with my own family, I've tried to recognize my limits and recommend more competent help and resources.

Recently, one of my neighbors (I live in Brooklyn) asked me for advice about care for her father. My neighbor--we’ll call her Sandy--is a pretty typical sandwich generation caregiver. In addition to her 93-year-old father, Sandy has a teenage daughter and a son in elementary school. She has had her own health concerns, including a bout with cancer a couple of years ago. And she recently took early retirement as an attorney from a large New York City agency and has been trying to make a go of a small consulting business.

One of the most important issues in eldercare is how to support caregivers, both paid and unpaid, in their difficult but essential work. To help the direct care workforce, we support PHI (the organization formerly known at the Paraprofessional Healthcare Institute). To improve the ability of health professionals to support family caregivers, we have a grant to AARP with subcontracts to the Family Caregiver Alliance and some Administration on Aging-funded regional Aging and Disability Resource Centers to develop curriculum and test its feasibility.

In the meantime, I did my best to support Sandy. I'm afraid neither I nor anyone else did a particularly good job. Perhaps some of our expert readers can make some suggestions?

This was Sandy's initial message:

From: XXXXXXXXXXXXXX@yahoo.com]
Sent: Monday, January 24, 2011 11:50 AM
To: Christopher A. Langston
Subject: Sandy XXXXXX calling

Hi Chris:
I hope you don't mind my reaching out to you about my dad. I know you're in the field of elder care and I'm having to make decisions about my 93 year-old dad who is failing and approaching a zero balance in his bank account. He lives in assisted living in Bridgeport, Ct. with his sweetie, whose son lives near Rhinebeck, NY. Dad will shortly be out of money to pay for the current occupancy and son wants to move Sweetie closer to him upstate. Dad has diabetes, heart disease, and cancer and has pretty much lost his short-term memory. Sweetie's memory is no better, but she is in better shape physically. Both use a walker.

I'm trying to identify Medicaid options that would permit Dad and Sweetie to continue to live together. Of course, while I know being close is important, I'm not going to fight this if Dad wants to go with Sweetie up north.

Short of calling every facility I can find on line, is there a way to identify some options?

Thanks so much.
Sandy

Who knew back in 1911 that anyone was really going to live to 93? Who knew what kind of resources might be needed? I can only imagine the fear and uncertainty created by the spend-down of assets, application for Medicaid, and ensuing eviction, and all falling on a cognitively impaired man and a long distance caregiver.

I suggested two things--that Sandy consult with the Connecticut ADRC and consider hiring a private care manager. From my own experience in trying to help with my uncle's care in Nevada, I suggesting calling the ADRC rather than just trying to use web resources.

On Jan 25, 2011, at 12:22 AM, "Christopher A. Langston" <christopher.langston@jhartfound.org> wrote:

Hi Sandy - I am very sorry to hear about your Dad's situation and the difficulty it is making for you.

The problem you are facing is very common. Either when people spend down and can't keep on where they are or their health changes (like after being hospitalized), they will suddenly need something different. Because this is so common the Feds have supported a network of Aging and Disability Resource Centers which are intended to advise people in situations such as yours. Unfortunately, that is all they do, advise, so don't get your hopes up too high. Moreover, the advice they can offer depends upon what is available in the area.

In CT the ADRC place to start is: <http://www.ct.gov/agingservices/cwp/view.asp?a=2510&q=385896> I would call them on the phone (plan to spend lots of time). For Bridgeport specifically you might try <http://www.swcaa.org/pages/benefits-services.php> which is the Area Agency on Aging funded to provide services. They will have some information on places your Dad might be able to live and they should have some info on getting onto Medicaid. If you don't get satisfactory service from the AAA or the ADRC, please do let me know and I can try to twist some arms.

And/or you might want to engage a private care manager. In fact the Bridgeport agency also works fee for service for private pay clients (such as you) <http://www.ctcommunitycare.org/Content/Care_Management_Associates.asp> or <http://www.caring.com/local/geriatric-care-managers-in-norwalk-connecticut/constellation-health-services-gcm>

These services will do an assessment, help you get access to benefits, and advise you on placement options for a fee. Please let me know if there is anything else that might be helpful to you.

All the best, Chris

Because it took me until the next night to get back to her, Sandy had already spent a frustrating day knocking on wrong doors.

----- Original Message -----
From: XXXXXXXXXXXXXXXX@yahoo.com>
To: Christopher A. Langston
Sent: Tue Jan 25 06:45:17 2011
Subject: Re: Sandy XXXXX calling

Thanks very much, Chris. I went down the hospice road yesterday thinking Dad's admission into a program might help support his room and board, only to learn that's not so (although support for his meds and supplies will certainly help). So informed advice would be useful right now.

I appreciate your help.
Sandy

I wrote back.

On Jan 25, 2011, at 9:00 AM, "Christopher A. Langston" <christopher.langston@jhartfound.org> wrote:

Hi Sandy - yea hospice is probably not a good fit. Few hospices in the US are residential/custodial, rather they expect you to stay home and to have a caregiver to make that possible. Moreover, you need to be certified by an MD as likely to die in 6 months. Because frailty and multiple chronic conditions have an unpredictable course it is hard to get a doc to say that even if hospice might be a good idea.

In the past many states would have Medicaid waiver programs that would try to create a win-win by keeping people like your dad and his partner out of a nursing home. But these have been slashed back in the current budget situation. Still worth asking about.

All the best, Chris

I saw Sandy a few days later walking the dog, and I asked her how she and her Dad were doing. She said that the choice was boiling down to NYC or upstate NY nearer to her Dad's girlfriend's son. She said that she had found an assisted living facility that would take Medicaid in NYC, but the family still couldn't decide on where the couple should live. And when I asked about the process, all she could do is shake her head and groan. When a hardened survivor of New York City bureaucracy tells you, "That was really something," you know we still have a long way go.