Respite Care - Your First Time
Jean E. Miller
I think the apprehension,
guilt etc, all come as a part of the overall caregiver package and the first time you have an opportunity to use respite
care for your loved one, sometimes that guilt can be overwhelming.
My daughter, Kelly, was with Hospice who gave up
asking me about respite care because I didn't want to send Kelly to the nursing home they used for respite. Scheduling at
home 24-hour care was a nightmare for hospice and you could never plan anything last minute because it took over a month to
schedule the help for those days. There were two times we had to evacuate for a hurricane and although I went with Kelly,
she was uncomfortable not having her usual routine and own environment.
When you DO get some respite time away for
a day or more, here are some things that might help your loved one (and you) adjust:
1. Personal Items
as many of their personal things to the facility as you can, like pictures, their own pillow or favorite bed things, that
will make their surroundings a little bit like home.
a large weekly calendar and highlight the days you will be gone. Ask the aids/nurses to mark off the days to let your loved
one know that it will only be a short time and that they can see on the calendar when you'll be back. Also mark the days/time
the others will be visiting if they'll be doing that on a regular basis. Discuss
the calendar with your loved one, reassuring them that they will be able to keep track of when you will be back home.
If they watch a lot of TV, make a list of their favorite programs, their stations/times
and post it on the TV in their room. You may have to bring a TV from home. We had to for hurricane evacuations. Remember
the aides/nurses that help at home won't be their regular caretakers, so make sure the facility understands
what your loved one likes to watch and whether it is important, critical, etc to them whether they get to see a
I used ***(stars) in rating Kelly's favorites to reflect
those she HAD to see each day down to those she normal watched but could be talked into watching something else. (See
Instructions-Daily TV Schedule)
4. Regular Caregiver Visits
Ask the facility if your loved one's normal aide/caregiving people can still come
by at their regular at-home times for caring for them so that it will seem like their normal routine. The Hospice nurse
and aides stopped in to check on Kelly. If this is possible, the "regulars" will be able to help instruct the temporary
caregivers on little things that will help in their care with your loved one.
5. Normal Schedules
Post a one-page normal daily care schedule in their room where anyone coming into the
room can see it (i.e. on the door, over the bed, etc.). Include things such as
whether your loved one is used to getting their bath before morning meals, etc. spell everything out. An abrupt change
in their routine by "strangers" can be very confusing and frightening to them, making their stay there unpleasant for everyone.
Who They Are
Leave a little write up about who they are, their children, pets etc that the temporary
caregivers can talk to your loved one about/know them a little better. If your loved one has favorite books or
video's bring them (along with the tape player & TV if needed) and let the staff know they like to be read to each morning/night
or watch their favorite movie, etc.
7. Contacting You
Have your picture (or primary family member's) on one sheet with contact phone numbers
written on it and have it placed where your loved one can see it (in a picture frame etc). Let your loved one know if
they need anyone to tell the aids to call or have them point to the picture if they have problems communicating. Let
the facility know that when they do point to that picture to please call you or who you've designated to call
them...immediately. Hearing a "familiar" voice goes a long way in alleviating their concerns of being abandoned. Let your loved one know that you are leaving these instructions and will be available
if they really need you for anything.
8. Their Gift To You
Have family or caregivers start talking to them a few weeks before the scheduled respite
about how important it is for you to get some respite care/this time away so you can be a better caregiver, etc. This
helped tremendously with Kelly as Hospice made it seem like Kelly was giving me a "present" (she was) and Kelly just beamed
from ear to ear and was so happy that she was "doing something" for me!! Then make sure you tell them, often,
how much the gift they are giving you means to you.
9. You're Available 24/7
If you have a beeper bring it, or rent one for the week. The important thing is to let
your loved one know that they will always be able to reach you. Let them know what time/days you will be calling
(if you plan to) and have those times written on that calendar too. Make sure you call at that time because if they're cognitive,
they WILL remember and look forward to your call. When you call, reassure them by telling them how much longer you will
be gone and that you are looking forward to seeing them again.......and again THANK them for helping you to have
I hope some of these ideas work for you. Respite care can do wonders to refresh a caregiver but
with the proper planning it can also be a break for your loved one too!