<<Disclaimer: Verify this information before applying it to your situation.>>

........................................................
:                                                      :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Spring 1999       Melinda Dennis, editor :
: newsletter: Summer 1999           95 Orchard St., #2 :
:                                Somerville, MA  02144 :
:......................................................:

The Nursing Home Challenge, by Marjorie W. Rogers, R.N.
--------------------------
[Editor's Note:  There are two aspects of this article that I found
particularly important:  1) A celiac diagnosed over 30 years ago still
managed to live to be 88 years old, and 2) A positive, strong rapport
with caregivers is established to help an aging celiac maintain a good
quality of life.]

A few of our members have voiced concerns about the care of someone on
the gluten free diet in the nursing home setting.  This article is
dedicated to my mother, Olive S.  Wilkins (1905-l993), a celiac with
lactose intolerance from 1958 to 1993.

My mother was diagnosed a celiac in 1958 and developed lactose
intolerance later in life.  After a hospitalization in September 1989,
it became necessary to find her a nursing home placement.  As her
advocate, I visited five nursing homes.  She was refused admission to
two of them because the staff believed they could not monitor a
gluten-free (GF) diet.  Perhaps I could have chosen to protest this
refusal, as all nursing homes must have registered dietitians on their
staffs.  However, I believed it would be more beneficial for my
mother's care to choose one that was receptive to dealing with the GF
diet.

I learned that the registered dietitian (RD) is often only on the
premises 2-3 days a week.  He/she sets up the dietary plan with the
proper nutrition requirements.  Fortunately the RD was receptive to my
suggestions and tailored the necessary nutritional needs to my
mother's individual tastes and dietary requirements.  The majority of
the day by day dietary care fell on the staff and manager of the
kitchen, the dining room monitor and the dietary aides.  The manager
of the kitchen went through the storeroom and checked all the labels.
She conferred with me about the two-week menu plan and any
questionable ingredients.  As dinner was served at the noon meal, the
evening meal became the most difficult to manage.  Often mother's only
choice would be a GF sandwich.  We agreed that I would supply the GF
bread and they would store it in their freezer.  In checking out their
mayonnaise, it became necessary for me to supply large jars of a GF
brand.  They allowed me to bring in GF muffins, cakes and cookies in
seale d containers.  These were stored in the freezer and were served
on her tray with the appropriate meal.  We kept GF cookies, rice
cakes, GF peanut butter, GF brown rice cereal and her favorite GF
candy in sealed tins in her room.  This way she could supplement her
meals and have something for the afternoon socials.  I also provided
bananas, as the kitchen's supply often ran out by the end of the week.
As you will note, this required much time and effort as well as many
compromises along the way.  Eventually, a cost analysis of mother's
dietary intake was done and the manager began to order the bread
directly from the supplier.

When Mother was first admitted, she ate in the dining room and was
able to monitor her own meals.  As time passed, she became less able
to do this and started to eat in her room.  At this time we had to
begin depending on the dietary staff to monitor her meals.
Thankfully, a foundation of education and trust had been laid.  Even
though there was still an occasional error at my mother's expense, the
staff remained open to my perusal of the menu and receptive to
suggestions concerning what needed to be substituted or eliminated.

Another area of concern was with her medications.  After having the
physician specifically order GF and lactose-free medications, I spent
some time with the charge nurse voicing the need for Mother to have
her own supply of certain medications and to not use the generic
supply.  Gradually, all shifts realized the importance of these
choices.

I cannot emphasize enough the necessity of establishing a good rapport
with the staff at all levels of the client's care.  Take advantage of
the client's rights and have your family or advocate attend the
Patient Care Plan Meetings that a nursing home is required to hold on
a quarterly basis.  This is the place to voice concerns and have them
implemented into the plan of care.  Find a means for you, your family,
or an advocate to become involved in the nursing home routine.  Attend
the family and resident meetings.  Make your presence seen and your
voice heard.  Volunteer!  I served as a wait person at the spring and
fall dinner dances, helped shelve library books, sang hymns at the
worship services, and served refreshments at the afternoon socials.
These activities can coincide with the days of your visits.  All of
the above will promote increased awareness and will strengthen the
bond of trust and mutual respect with the staff at all levels of
nursing home care.

My recommendation is to begin to train an advocate before your aging
process becomes critical.  Familiarize yourself, your family, and your
advocate with the resources that are available (see below).  As a
team, develop an assertive attitude.  Balance a blend of constant
commitment to quality care with the necessary compromises to integrate
the GF diet into the desired standard of care.  Educate yourself, your
family members, your advocate, and the nursing home personnel.  A
well-informed family, client, and/or advocate with a commitment to
caring can ensure optimal care for the nursing home resident.

No nursing home should refuse to address the needs of a celiac
resident.  The federal Nursing Home Reform Law requires that a nursing
home provide care to maintain the highest possible level of
functioning of residents and must make reasonable accommodation to the
needs of its residents.  State public health and consumer protection
laws also protect the rights of nursing home residents.

Assistance is available for help in resolving nursing home problems:
The National Citizens' Coalition for Nursing Home Reform
(1-202-797-0657), a national advocacy organization, is an excellent
source of information on nursing home issues and has published Nursing
Homes, Getting Good Care There by Sarah Greene Burger, Virginia
Fraser, Sara Hunt, and Barbara Frank.  This book is an invaluable
resource for families, friends, and caregivers of nursing home
residents.

Thank you to Liane Zeitz, Esq.  for her valuable contribution of
resources.