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.
* Getting What You Need: Check list for those living with a chronic or life threatening condition and those that care for them.