This is preparedness
information we all need to know but it’s generally not readily available. If you’re in the midst of a crisis, you
probably wont be reading this post, but hopefully a good friend might be. If
you’re a provider, use this to help the family know what they can and should be
doing.
For those who are making decisions and organizing
care for the individual who is injured or ill, e.g. spouse, parent, adult
child, sibling, best friend etc. outlined below are things to be done in the
first week to ten days. While this may seem like an arbitrary amount of time,
this is actually how long it takes the brain to adjust to shock. At the end of
this time period, most have adjusted to the “new normal.”
Think of this time
frame as your “window of opportunity.” Friends, family, employers and others in
your community will be most concerned and want to help in whatever way they
can. You don’t want to be pushing them
away, but rather channel their ideas and offers of help into venues where they
will be available in the weeks and possibly months ahead. If too much time is
taken in organizing help, it evaporates and for many, the real need is not in the
crisis phase but in the months to come.
What to do
• Take a deep breathe and recognize you can only do but so much.
• Organize Help and Delegate from day one: The quickest way to do this is by asking a
trusted friend and/or family member to set up a free Lotsa Helping Hands website for you. This allows you to keep people
informed, while being clear about what your needs are and what they can do to
help. The more you use the site, the less phone calls, texts, e-mails etc.
you’ll have to deal with. There are other websites that do aspects of this, but
Lotsa Helping Hands is by far the most comprehensive yet still guards privacy..
• Be there for the person who
is ill or injured, particularly if they are hospitalized: Don’t leave a patient alone in a hospital if you can help
it. The following quote is from a survey I did in 2009, where I asked providers
and consumers what they needed when hospitalized, “From my experience as an inpatient as well
as the daughter of one, there must be someone at the bedside to advocate for
the patient. If it can't be 24/7, then perhaps shifts can be taken by
people who care. I don't know of any other way, given the situation at
most hospitals or perhaps all of them. ..I've literally saved the person's
life, because no one was around to notice there was an abrupt change…” Many hospitals make
provisions for family members to stay overnight in the patient’s room when
possible. Because of staffing, hospital personnel welcome the advocate as it’s
another set of eyes and ears that can be in the room when they can’t. Be their
advocate by:
- Keeping a bedside log of tests, treatments,
and consultations
- When they are unable to communicate, be
specific about their needs. Don’t hesitate to ask for someone in charge if you
feel needs aren’t being met.
- Make sure caregivers wash their hands
- Be insistent if you or the patient is unhappy
with the care they are receiving or don’t understand something
- Connect with the hospital’s discharge
(disposition) planner as soon as possible as well as the social worker. The
better the planning that’s done before the patient is discharged the less
likely they’ll need to be readmitted.
- If there are difficult decisions to be made,
ask if the hospital has a “shared decision” department. If not, check out the
following resources: Foundation for Informed Medical Decision Making and “Hard Choices for Loving People.”
Before they are
discharged:
- Determine
what they will need when they’re at home.
- Know
what their insurance will cover
- Identify
gaps and work with the discharge planner/social worker to identify community
resources as well as the volunteers on your Lotsa Helping Hands website.
- Understand
the discharge plan and don’t leave the hospital without a copy of it.
• Learn as much as you can, as quickly as you
can about the person’s condition: If you don’t have time to do it, assign this task to a trusted family
member or friend. If you are camped out at the hospital, and don’t have a
computer or tablet, most hospitals will have one for patient/family use. A
place to start is the local chapter of a condition specific organization (e.g.
the state chapter of the Brain Injury Association). Some of these organizations
have peer advocates that will come to the hospital and can be invaluable. Many
hospitals have resource centers you can use. Other places to check for
information include: Medline Plus or Mayo Clinic Diseases and Conditions. Note that the Medline Plus website provides a list of national organizations associated with a particular condition.
• Ask questions about the person’s care
including whether the hospital they’re in is the best place for them. Even
if this is your local hospital where your family has always been cared for,
know that it might not be right in the current situation. No hospital is the
best in everything. Hospitals that see a lot of a particular condition are
going to be more successful then a facility that sees one every now and again.
This is particularly true for patients who have spinal cord, traumatic brain or
orthopedic injuries as well as oncology. Definitely recommend being an
e-patient, as websites like Patients Like Me can
quickly provide you will real information about people dealing with similar
situations. In addition, some medical providers will recommend sites.
• Dealing with First Things First: There are a lot of things competing for your
time and attention. It can be difficult to know which ones to deal with first.
Simplify it by asking yourself the question: “Is someone’s health or safety
jeopardized if I don’t act promptly?” If it can be put off tomorrow, it can
wait.
Those with children,
particularly young ones, can find that no place seems right. If you’re at the
hospital you think you should be home, when your home with the kids, your
preoccupied. This is where volunteers can help to fill in since you can’t be in
two places at once.
• Other
posts that will be relevant: I’ve been writing this blog since 2009 and
there are many different topics that have been covered. Use the search feature,
which is on the right hand side bar, to help you identify topics that are of
concern to you. Be sure to scroll through the list of “resource” posts.
