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Medical Forum / Diseases and Disorders / Alzheimer's / September 2005

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Question regarding respite

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ncgen - 18 Sep 2005 04:23 GMT
I realize this is long, but I tried to cover areas which might lead to
questions.

One area I have noticed a real lack of availability for in elder care
is respite care for families of people with AD. One thing I am
considering during my time off from work is starting a respite program.
Our area has home health and personal care aides as well as limited (2
mornings/wk) day care options but nothing more other than ALF or SNFs.
Even then, it can get costly over an extended time.

In another area I operated a center based respite for a different type
disability.  During the time I cared for the in-laws, I often wished I
had someone to care for them for a couple days so I could catch up on
sleep or just go out of town and relax a couple days.  Just being able
to go home to visit my family would have been nice.

I'd like the views of members of this group on whether you think this
is a type of service which would be valuable to families. Respite stays
could vary from four hours min to 30 day (including overnight) maximum
per stay.
State certified medication techs (as used in ALFs) or licensed nurses
would be on staff to administer meds and treatments.
Two (awake) staff would minimally be present all shifts with a
manager/director onsite during business hours and available by phone
and on-call weekends, nights, holidays.
A physician would be on-call for the program for emergencies.  Local
hospital close by in an emergency.
Maximum of 5-6 persons being cared for at any given time.
All staff experienced with caring for person's with
Alzheimer's/Dementia and would be CPR/First Aid certified and receive
regular inservices.
Home used for the program would be handicapped adapted and adaptive
equipment available for use.
Physician would need to complete a medical form and write orders for
any medications or treatments.
Would request family complete informational form on behaviors,
routines, etc prior to stay.
Would be available in a period of crisis or emergencies as well as
regularly scheduled stays or drop-in if all information on file is
current.
Activities would be included.
Meals and snacks provided with diets monitored and adapted.
Varying levels of assistance with ADLs from supervision to total care
would be available.

The goal would be to have enough funding that cost would be minimal for
the family or on a sliding fee scale. Also, contracts would be sought
with hospice and CAP-DA for those receiving that type services. If the
person was on hospice services, their aide and nurse would still be
able to follow them there.

I realize having home care is often preferable, but that's not always
an option.
Would you utilized a program like this?
What else would you like to see addressed? (tried to address most
things here but I know I forgot something)
Any other comments also welcome. That's why I'm asking. I'd like to
know the opinion of families.

Thanks in advance for reading and offering your views.
Lane
Evelyn Ruut - 18 Sep 2005 12:18 GMT
Hi Lane,

Where I live, when my mother in law first moved in with us, we got a list of
facilities that took AD patients on a respite basis.   By the time we needed
to use the list, there was only one left that did it.   The others had all
stopped doing respite care.

In that one particular facility (which was a very nice place, by the way)
the majority of the rooms did not have private bathrooms in them.   I could
just see my mother in law roaming the hallways in this strange place, trying
to find a toilet in the middle of the night.   I just knew there would be a
problem, and we just didn't have the heart to place her there, even though
we had tickets all bought for a vacation, and all arrangements had been
made.   I went alone on the vacation, and left hubby home to care for his
mom.

In early AD the biggest problem is that the person doesn't know they have
the illness, and there was no explanation that would do.   They thrive on
routine.   You know how hard it is for a person with AD to learn any new
thing; any break in routine is very disturbing to them.   Suddenly being
placed in a new location would feel very unsettling to them.    As time goes
on and the illness advances, I am sure it is a lot easier, since every day
is strange.   But in the beginning, any bit of familiarity is something they
cling to.

The one thing we did take advantage of without fail, was daycare.   Thank
goodness for our local adult daycare center.   I have no idea how I would
have managed without that little break, so I could shop, visit a dentist or
a doctor, or even just catch a nap.

As I think back about the place we were planning to use for respite, if they
had a bathroom attached to the room they were going to use for my mother in
law, I would have been grateful for it and used it.

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

>I realize this is long, but I tried to cover areas which might lead to
> questions.
[quoted text clipped - 57 lines]
> Thanks in advance for reading and offering your views.
> Lane
Florence A - 18 Sep 2005 18:24 GMT
This would be just great BUT ( yes, always the BUT)  I don't see how it
could be done financially.  You mentioned funding. (how? from whom?)
With only a small number of participents, how could you accomplish
raising enough tuition (fees) to pay  utilities, salaries to competent
employes,
rent or purchase of the facility.etc...entertainment etc

Many of the chain NH's & AL places are taking on these services to pick
up exra cash.   Those taking care of parents fall into a different
financial category with  long term care than the married.AD patients.  


Ruth - 19 Sep 2005 02:33 GMT
Lane,
There is a great need for this kind of care!  One important feature I would
look for is adequate safeguards against wandering/escaping.
Ruth

> Hi Lane,
>
[quoted text clipped - 91 lines]
>> Thanks in advance for reading and offering your views.
>> Lane
The Turd Burglar - 20 Sep 2005 04:36 GMT
Evelyn DON'T BE A DUMBASS.
 
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