December 8, 2009


From Asher Ostrin, Executive Director, FSU Programs

M. and A. are two people I know. Both are Jews. M. was born in 1927 in New York. A. was born in 1928 in Kazan, Russia. Today, M lives in New Jersey. A. still lives in the apartment in the central Russian city in which he spent all of his adult years. Both are war veterans. M. served in the American Army in Europe and was in tank intelligence. A. was in the Red Army, first in the Far East, and then in Stalingrad, after the decisive battle there. Both M. and A. were professionals in the field of education. They both have families- their children are grown and have children of their own. Both are still married, in each case over 50 years. Both have advanced cases of dementia.

M. now lives in a nursing home in New Jersey- in a special ward for dementia patients. The ward has a staff equal in size to the number of patients. The staff feed M., and bathe him. In fact, they take care of all of his basic needs. His wife is in another wing of the same institution. She has become physically frail, but she is basically self sufficient. They lived together in the same house until about a year ago. An aide came in every day to help with M, but eventually the challenge was overwhelming. It was no longer safe to keep him at home. And so M's family searched for an appropriate facility in which both he, and she could live, with their respective needs addressed. In the end, they had a choice of facilities from which to choose. Today, he has no single, "primary" caregiver. There is a staff to attend to his needs.

A. is not so fortunate. There is no institutional option in Russia for him. His family is not faced with the painful choice of when to move him out of his familiar surroundings into a facility that is appropriate for him at this stage in the disease's progression. They simply have no choice. He is a Hesed client. In the category of non Nazi victims, he is entitled to a minimum level of care. One of the Hesed's homecare workers visits him- six hours a week. Sometimes that means an hour a day. At other times, for example when he has to be taken to a doctor, half of the week's budgeted time can be used for that trip, and is reduced from the total. The door of the apartment in which he lives is always bolted, so that he cannot leave unescorted. If his wife needs to go out- to the doctor, shopping, and the like, it requires major planning so that A is not endangered by being alone. His wife, age 79 and with daunting physical challenges herself, is the major caregiver. Such as it is.

M. is taken for a walk outdoors regularly. Sometimes he sits outside for hours, alone with his thoughts. He is exposed to sights and sounds, and movement. He spends most of his day in a day room with others. There are exercises he can do from his wheel chair. There is movement. Music in the background. All of this is supposed to be good for him. Who knows?

A. spends all of his time indoors, except for occasional doctor visits. Same four walls. The peeling paint, the musty smell. Day in and day out. No changes day to day. No stimulation. No socialization. Most day centers have been eliminated or cut back in the Hesed centers, for budget reasons. But even where they still exist, the demand far outstrips availability, and A. would not be a candidate. The reason is a concept alien to Jewish tradition, but dictated by current circumstances: "Too far gone".

The nursing home's staff makes sure that M. takes his medicines at the appointed time. If they notice anything untoward, they summon a doctor who is on call. Adult diapers are taken from a pantry in the facility as needed.

A. is eligible for a medicine allowance from Hesed, due the combined income of the couple's pensions- under 160 USD per month. His children pick up 8 adult diapers a week from the Hesed for their father's use. That is all that he gets. 8. One day a week he gets to use 2.

Recently M's children met with a social worker and accountant who outlined with them a plan for the next few years, should there be a need, to ensure that government entitlements can be supplemented by M's savings, insurance, and pension. They drew upon several scenarios based on a model of continuing care, and the kind of institutions and their costs. The course of the disease and the increased needs were spelled out, and the necessary financial plans were discussed.

That kind of meeting would strike A's family as an event taking place on another planet. Many parts of it are completely irrelevant to their context. Government entitlements in Russia are almost non existent. There are no institutional options. There is no health insurance. And the list continues.

M's family is grieving for his situation. The family patriarch has been reduced to a shell of a human being. But they are consoled by the fact that he is getting good care and is as comfortable as his situation allows. He is surrounded by professionals and gets the attention someone in this situation needs. If there are complaints, and they seem at the time to be of great significance (the diet is not right, his clothing is stained, he is not changed soon enough after soiling himself), they are put in proportion when one learns of A's situation.

Given my role in JDC, it is hard for me to write about A. Hesed can do more. Much more. The difference between an adequate level of homecare, and what he currently gets, is budget. The difference between eight diapers a week, and what he needs, is budget. The Hesed in Kazan can determine needs, deliver what is required, and ensure that it is used properly . Its professional staff can provide all of the necessary medicines, and good nutrition, and address the other needs of the elderly. They can, and so can the other Hesed operations in the system. The only thing they lack is the resources.

It is also hard for me to write about M. He is my father. So I can compare the two cases.

Why write about this now?

The simple answer is that what I wrote above is an accurate description of the current situation, and its attendant frustrations. However, it is not the end of the story. Even absent the necessary resources, we are trying to do something. It will not make the two cases cited above comparable in any way. But we felt compelled to do something to relieve at least a bit of the pain and suffering.

This month we entered into a partnership with an NGO in Israel that was founded to improve the quality of life of patients with dementia, and that of their families. The Israel piece is important, because of the large number of Russian speaking elderly here.

The organization developed a tool for volunteers and families who care for demented patients. Our staff helped translate the tool into Russian, and helped to adapt it for use in the FSU. For example, stimulus questions to jog memory and recognition games, songs to sing together, pictures to describe, etc., are very dependent on the culture in which the patient was raised.

Over Chanukah, the program will be piloted in one of the Moscow Hasadim. The seminar will also include tracing the expected course of the disease for the families and volunteers, how to make the home safe for those afflicted, how to cope with the patient's memory loss, etc.

At the seminar's conclusion there will be an evaluation, and the seminar content will be adjusted based on lessons learned, and opened up to the Hesed staff around the FSU. The materials that have been translated will also be put on the internal Hesed website for access by professionals, volunteers, and family members.

This is not an attempt to address the real problem. Seminars, training and counseling make the situation a little bit better- but do not in any way alleviate the real pain. A woefully inadequate response to a devastating situation. It is what we can do for now.

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