This fund is for my mother, Araxi Bostanian Kobrin, who turned 101 on August 20, 2018. She is one of the kindest, most inspiring people I have ever met. To eat enough at her nursing home, she needs Janet, her private mealtime nursing assistant. As of March 8, 2019, I owe Janet's agency $16,749.50. As of February 21, the agency is requiring a payment of $3,500 by the 15th of each month to continue her feeding assistance. My mother has a good quality of life. Without Janet, she (God forbid) could lose her health and then her life. I would be eternally grateful for any contributions to help pay for Janet. Please also remember us in your prayers.
More on My Mother's Urgent Need
My mother's nursing home wing is understaffed: the staff-to-resident ratio is never allowed to exceed 5 geriatric nursing assistants for 39 memory-impaired residents, most of whom are elderly. To address issues including not enough time for feeding and uneven feeding skills, my mother has had private duty mealtime assistance since she arrived at the nursing home in late March 2015, except for an interval during which she lost 8.4 pounds from her already slight frame (see "Nursing Home Understaffing Is a Devastating Problem," below).
Janet has been assisting my mother for more than 3 years, She currently feeds my mother 16 dinners per month (and more meals if her schedule permits). My mother almost always eats 100%; she consumes on average 50% less when anyone else feeds her the same meal.
Nine years of care-related expenses since my mother fell in January 2010 have exhausted our resources. We already have paid Janet's agency more than $50,000, incurring significant debt as a result. Since July 2018, Janet's agency has been so kind as to let me keep Janet's feeding assistance if I make monthly payments, instead of stopping Janet's feeding assistance until I pay the entire outstanding balance.
Janet's agency is the only local agency without a 4-hour minimum, which makes it the least expensive. Janet's fee is $28 per hour. Her total fee per meal is $42 because it became necessary to pay her for a half hour of commuting time starting in mid 2018. (To reduce overtime costs, the agency changed Janet's schedule in a way that has, for now, decreased Janet's availability to my mother and increased her commute.)
Other Pressing Needs
Some of the other expenses my mother needs assistance with are funeral and burial pre-planning. Funds that could have been used for this purpose were needed to pay for Janet.
Araxi's mother passed away a few weeks before her 104th birthday. My duty to my own mother is to do my best to ensure she is as healthy, safe, and comfortable as possible until God calls her to Him. Please help me help the person I love most in the world.
With deepest gratitude,
No Option Except Private Duty Care, No Funding
From Other Sources to Pay for It
I have researched alternatives to private duty mealtime nursing assistance and alternative funding sources. No funding is available from Medicaid, the county, or the state to help pay for my mother's private duty feeding support. Medicare doesn't pay for feeding assistance, and the faith-based agencies working with my mother's nursing home don't have funds for this purpose. Volunteers aren't allowed to feed residents. Moving to a different nursing home isn't feasible for various reasons (e.g., very long waiting lists, inaccessible [to me] location).
If you want to feel valued and uplifted, spend time with my mother. "What a sweet woman" and variations thereof are the comments I hear most often from nurses, nursing assistants, and volunteers. Within my mother are deep faith, an ability to empathize with suffering and see the good in people, and an enthusiasm for life that persists despite the hardships she's experienced. "Life always will be partly marvelous," she told me a few years after dementia began to surface.
My mother's parents, Sarkis Bostanian and Esther Shanlian, were born in Armenia (Zeytoun and Marash). They came to the United States to escape the genocide that claimed the life of Esther's mother, Kohar. My mother earned her bachelor's in English and American Literature in 1939 from the University of Washington. Her love of learning and of people--especially young people--made her want to be a teacher. A Harvard scholarship enabled her to earn her master's in Teaching in 1944, and she taught in two Washington public school systems.
She served her country during and after World War II as a member of the Office of Strategic Services and similar departments, completing six tours of duty overseas. After she married, she did her best to aid her husband and raise me, under very difficult circumstances, while they continued serving their country through five more overseas tours of duty. She later worked as a substitute teacher and volunteer in Montgomery County, Md., public schools. She began studying classical piano in her teens and continued her studies until her early nineties.
Although my mother has forgotten much of her life story and all her accomplishments, dementia hasn't taken away her high intelligence, her perceptiveness, and her ability to connect deeply with others. She gently showers with love anyone who can take the time to be with her. One of her volunteers emailed me in 2017 that "People always say you get back more than you give. Friday, your mother gave me more than I could ever give her."
A member of my mother's nursing home team gave me this feedback: "I agree with you that Janet is a gift from God. She has an amazing relationship with your mother. Your mother really loves and trusts her. She is taking amazing care of your mother..." [March 22, 2018 email]
Nursing Home Understaffing Is a Devastating Problem
When I complained about understaffing to the director of nursing and to the ombudsman of my mother's building, I was informed the nursing home exceeds Maryland's minimum staffing requirement. The minimum staffing requirement set by the Legal Code of Maryland is just 2 hours of direct care per resident per 24-hour day.
An advocacy organization told me Maryland's minimum requirement is so low because lobbyists have successfully opposed raising it. The minimum requirement in Washington, D.C., is 4.1 hours of direct care.
"Numerous studies and reports on minimum staffing levels in nursing homes have found that good care requires at least 4.01 to 4.13 hours of care daily. This is a minimum level of care for every person living in a nursing home regardless of acuity. Clearly, there are many people living in nursing homes that require a higher level of care" (http://voicesforqualitycare.org/wp-content/uploads/2018/12/2018-Newsletter.pdf). To learn more, visit http://voicesforqualitycare.org/ and http://theconsumervoice.org/.
In the first quarter of 2018, my mother's nursing home provided just under 3.23 hours of direct care per resident per 24-hour day, according to data from the U.S. Centers for Medicare & Medicaid Services that were analyzed by an advocacy organization.
On my mother's wing, every geriatric nursing assistant (GNA) cares for 8 to 10 memory-impaired residents. As noted above, the staff-to-resident ratio is never allowed to exceed 5 GNAs for 39 residents; when GNAs call out because of illness or other reasons and substitute GNAs can't be found, fewer than 5 GNAs are on duty.
At meals, the GNAs have 90 minutes to: get the right foods and beverages for everyone in their group, which takes about 30 to 40 minutes; feed 2 to 4 residents who depend on feeding assistance; supervise other residents who are more or less able to feed themselves; and clear tables.
Thus, GNAs may have on average only 15 to 20 minutes to feed each resident who relies on feeding assistance. People like my mother with weakened swallow muscles and dementia require more time than that to safely consume enough food and fluids.
My mother's excellent regular 7 a.m.-to-3 p.m. GNA does her best to give my mother as much time as possible at breakfast and lunch. When she can give my mother about 45 minutes at breakfast, my mother typically eats 75%. Recently, my mother has been eating on average 25% at lunch; I believe this is because her GNAs (both her regular GNA and GNAs who fill in on her regular GNA's days off) do not have enough time. Her wonderful regular 3-to-11 p.m. GNA also gives my mother as much time as he can at dinner; my mother usually eats 50%.
When Janet feeds my mother, she nearly always eats 100%.
Forever Grateful to Our YouCaring Friends and Other Supporters
Between October 2017 and July 2018, our incredibly generous YouCaring friends contributed $10,890 of their hard-earned money to my mother's YouCaring campaign. They include our lifelong friend Daniel Dornheim; our friends and neighbors of many years Anne and Kim Golightly, Enitan Adenobojo, Odile Jennings, and Nathaniel and Eve Schenker; President of the Office of Strategic Services Society (OSSS) Charles Pinck; OSSS members Andrew Motel, Anita Mallory, and Dale Yeager; several members of my mother's church who wish to remain anonymous; and my friends Pat Talbert Smith and Maria Startzel.
The entire $10,890 went to Janet's agency, except about $19 remaining in her YouCaring bank account, which was transferred to her GoFundMe account. (This GoFundMe campaign is a continuation of my mother's YouCaring campaign, which ended in July 2018 when GoFundMe bought YouCaring.)
In early October 2017, my mother's church and a local rug dealer co-organized a rug auction that yielded $6,059.60. Of this amount, $3,844.77 went to Janet's agency, $88 paid for private duty nursing assistance so my mother could complete an off-campus medical appointment when I wasn't able to go with her, and $2,000 was returned to the rug dealer to repay an emergency loan. The remaining $120.83 plus an additional $485.13 (i.e., a tithe of the total auction proceeds) was offered to my mother's church, which provided the physical space, exposure, and other support that made the auction possible.
Our elder law attorney reviewed the text for YouCaring and GoFundMe text and offered invaluable counsel pro bono. My caregiver support group and our cousin offered equally invaluable advice, editing, and encouragement.
In case helpful for those of you who don't know my mother and me personally, here are unsolicited kind words from two former members of my mother's team:
---"...I so appreciate and respect your role as [your mother's] advocate! She is lucky to have you...Please remember your input and thoughts are so valuable to her care." [May 22, 2017 email from Kristen Columbia, my mother's nursing home nurse practitioner for about 1 year, now retired]
---"I have always admired the way you have taken care of your Mom. Ms. Kobrin is very lucky to have you. She is able to live a healthy long life, mainly because of your good care." [October 10, 2014 letter from Tipaporn Woodward, my mother's internist for more than 10 years, now retired]
Others can vouch for me as well. Statements also are available from Janet's home care agency documenting the amounts owed and paid.
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