Alzheimer's Disease can take anywhere from 7years to 20 to kill its victims. It is a slow agonizing death. Not only is memory affected but so is every part of the body. After awhile the only mercy is that only the caregiver/s know what is happening, their Loved One has no idea, no knowledge that they are no longer the person they once were. Many people call it the Long Good Bye for this reason.
I have been my mother Raizel's primary caregiver since April 1996. It is exhausting and gut wrenching to see how much she has changed. She is a 10 year old in behavior. Sometimes she behaves like a younger child.
Caregivers are always advised to seek support groups and respite. In addition I would like to add find comfort in faith or God or a Higher Power.I have noticed that Jewish caregivers never speak about their religous beliefs and how it has helped them cope. I have seen many poems and comments from Christian caregivers on their faith, or religious beleifs.
This website is my journey to find the faith I once had. One of the proudest moments of my life was the adult celebration of my bat mitzvah. I am hoping that I can help or something in these pages will guide someone to a comfortable place.
I have provided several links to the major Jewish groups that can direct you to a synogogue in your neighborhood. The reason I suggest joining a synogogue is for the feeling of community that a synogogue can provide. My shule has a committee whose members make hospital visits, visit the home bound, go shopping or little favors that mean so much to those that cannot do them or need a little extra help in hard times. They are also good at knowing who knows what services are available for what situations they cannot help.
Shabbat or holiday services(except for Fast Days) include the opportunity to socialize with non-caregivers. I like meeting different types of people and it is certainly a break for me to talk about other topics besides Alzheimer's Disease or Caregiving. Mom usually sits while I get her a snack and then I can mingle. Sometimes I do talk about mom becasue after I had mentioned her fondness for small children, the rebitzen started bringing her child over to greet us. One caveat though. Most non-caregivers do not know that they have to reintroduce themselves each time to my mother. They do no know to follow my lead and then they make mom uncomfortable by telling her that they have met already. So be prepared for surprises like that.
I work full time, so Shabbat has become the day that mom and I spend together, just the two of us. I had been able to take her to services for awhile, but then she couldn't follow the services or sit quietly for more than 30minutes. AS soon as she got bored, she would begin to ask me when the services would be over. She likes the snack food that is served so now we arrive at the last portion of the service and sit outside the sanctuary, but there is a loudspeaker, so I am able to hear at least that ending part of the servie and since mom remembers the ending hymn, she tries to sing along and I like that and it doesn't disturb the other congregants.
I enjoy reading Jewish commentaries about the Torah and of course any Jewish topic. I subscribe to a newsletter that comes to me through my email account and has links back to its website for additional information. CLAL (Center for Learing and Leadership) is an organization dedicated to the pluralism in Judaism, its membership includes rabbis and lay people from all the defferent Jewish branches or movements, I get different perspectives in these commentaries. For Rosh HaShonah they had a brochure on it for downloading from their website. If your email system can support it, the email newsletter has the links to the specific page on their website, one stop shopping. I get the newsletter weekly.
I also have a description about mom and the beginning of this journey of the Long Goodbye.
Here is a link to a page with books you might want to read.
Link to my journal
Look at my entry for Hannukah98
Clique on site for a table of contents.
Rabbi Paul J. Kipnes'sermon on Alzheimer's Disease.
Penny's dvar torah on the torah portion Chaye Sarah, Genesis chapters 23:1 - 25:18. For the journal on mom's first year on Memantine
I have a few last words. I do believe in God and I do not blame God for my mother's disease. Rabbi Harold Kushner, my favorite author says that blaming God for bad things is like expecting the bull not to gore you because you are a vegetarian. I also believe in the power of prayer and in the uplifting of spirit through communal worship. I also suggest a membership in one of the following two organizations Bnai Brith, a bit pricey but you will be supporting Judaism. For women(not sure yet if there is a men's counterpart) a good group to join is Hadassah. They support programs both here and in Israel. Membership(see below for the links to their websites) gives you a choice of joining a local group which is a way of meeting other Jewish women. It can feel good to get away from discussing the disease and its inherent problems.
Links to other sites on the Web
Union for Reform Judaism
United Synogogues of Conservative Judaism
Jewish Reconstructionist FDN
JASA(services for elderly)
Hadassah
Jewish Humor Cartoon
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(C)1998, 2004, 2008 Penny Klein
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