Hospice decision

[Guest guest]

We have also made the decision to use hospice services. My mother (68) is

the SDS patient. She was just dx with MSA three years ago, then changed to

SDS about 2 years ago. In her case, the progress has been very rapid. At

first I was angry that other folks had so much more time than it seemed mom

would have, but then I realized that some of you, my friends, have had much

earlier symptoms (age wise) so I guess it is a half full or half empty

glass, depending on how you look at it. Also, no one got to choose anyway.

So back to the subject of hospice! We have found it to be a great help and

to provide some financial relief. They have picked up the cost of the daily

caregiver who comes each morning for two hours to bath and dress mom and do

a little light house keeping. We were able to keep the same caregiver...

the hospice just put her on their payroll since she had the right

credentials to meet their specs.

Another way they have helped is with medications. We had so many things to

keep track of and the cost is so high! Some stuff came from one doc, some

another; some from the local pharmacy, some from the health food stores, and

some purchased through internet sources. They all refill at different times

of the month... well, you all know the nightmare of keeping up with the

meds. Hospice took over all of that, including paying for everything. The

nurse monitors it and orders refills as needed which are delivered to the

front door.

They have also helped with medical supplies. They brought a Hoyer lift (we

returned the one we had rented), a suction machine, and would have brought a

hospital bed if we didn't already have one. When dad reported the beginning

of a pressure sore, the nurse checked it out and had donut cushions

delivered within just a few hours. Basically, whenever we need something,

we call the hospice folks and they respond very very fast.

For now, the nurse comes about once every 5 days to monitor the situation

and see if anything is needed. In between, we can call anytime we have a

problem or question. She checks constantly for UTI's, bed sores, etc. If

is a relief to have a medical person watching over us. Now we don't worry

so much about what we might miss or spend all those frustrating phone calls

trying to talk to a doc to ask whether we should be worrying about something

or changing a drug dosage.

We have not yet worked with the grief counselors but intend to do so. Our

kids are mostly in the 18-21 yr. age group and are spread all over the

country at colleges and military post. Our hospice organization has

contacts with organizations in other places and will send counselors out to

work with our kids if needed and will continue to help us for up to 13

months after mom's time is finished to get us through the first year of

'important dates.'

Mostly, hospice has been a big relief to dad because he now is confident

that we will be able to keep mom at home unless there is urgent

medical/hospital care needed for a treatable problem (pneumonia, infection,

etc.) and return her home ASAP. Hospice will literally move nurses into the

house 24 hrs. a day if that becomes needed for managing mom's care.

They also offer respite care at no cost to us if it is needed. This means

that dad may be able to go on an annual weekend fishing trip that he takes

every year with his three son in laws which he otherwise would not do. We

don't need the respite care so much because there are two of us daughters

living very close by and we have scheduled ourselves to go over several days

per week to allow dad to get out of the house and run errands or just putter

in the garage. I know others of you caregivers do not have this kind of

help and I worry about you!

My advice is to contact a hospice organization now and find out what

services are offered and what the enrollment process is. The hospice folks

will contact the primary care doc to discuss when the care should commence.

A common 'myth' is that their services are capped at 6 months. This is not

true! The patient is first certified for 6 months of care, then the doc can

recertify for 90 day periods for as long as needed. The patient is not

enrolled until the doc states that if the disease process continues at the

current rate, then the patient would likely have six months or less of life

remaining, but they all realize that no one knows the future. Our hospice

group says their average patient care period is 140 days (over 4 months) so

half of their patients are with them longer than that.

So our opinion of hospice is two thumbs up!!

Now you know why I never post to the list. I can't write a short email.

sigh.

love to all you heroes and heroines.

Pam Womack

(Houston, Texas)