Finding your Caregiving Village
The saying about it taking a village to raise a child is just as apt when it comes to navigating the healthcare system as a family caregiver of an elderly loved one. It takes a certain type of village! There is a lot we can all learn from each other as we endure our individual journeys as caregivers. There are some needs and feelings that are universal and learning how others manage and navigate can often be hugely comforting. I had the opportunity to spend some time with a caregiver who had just come through managing a serious medical event for her mother. Her thoughts provide a terrific launch pad for thinking about how you may want to prepare yourself and create your own caregiving village.
As we started, she told me of her greatest fear during the ordeal: “Being the one responsible for making sure she got all the possible (and best) care was what worried me. I wanted to make sure that I learned what I needed to know.”
As I listened to Barbara talk about her mother's ordeal, I was struck by the source of Barbara's fear. It was the fear that she wasn't doing all she could for her mother. She was worried she wasn't finding out what she needed to know. Was she asking the right questions, finding the right doctors, keeping her mother away from medical errors, and ultimately making the right decisions? While she had friends to turn to who had also gone through similar challenges, she was completely unsure how to navigate and where in the healthcare system she might turn to get the information she needed.
In my experience, it is possible to avoid the uncertainties that caused Barbara such emotional turmoil. You can take steps to prepare for a loved one’s health crisis by creating a therapeutic alliance with their doctors and the other healthcare professionals who make up what seems like an impenetrable health care network.
You can and should create your caregiving village.
Step 1: Get Close to Your Loved One
Well before any health crisis occurs, make sure you and the other members of your family fully understand your loved one’s wishes if life sustaining decisions need to be made on his or her behalf. Be clear about who in the family will be responsible for making those decisions. Also, all family members must have a clear understanding of the financial resources available for use for the care of your loved one.
Second, given the complexity and fast pace of the healthcare system, it is best for anyone admitted to a hospital due to an acute health crisis, such as a stroke, hip fracture, or serious illness, to have a loved one with them from the first admittance and for as many hours a day as possible while admitted. If you or another close family member cannot personally get there, enlist the help of a neighbor, friend, or other relative who can get there quickly. If these options are not available to you, you may want to consider hiring a professional geriatric care manager. These professionals are typically nurses or social workers and can be hired on a fee-for-service basis to provide a wide range of support and care services. They can be invaluable as your loved one’s advocate, a knowledgeable resource about healthcare resources, and your “eyes and ears” in the local setting.
Find geriatric care managers in your local area
Caregiving Tip: Write It Down!
Create a file of important information and add to it as the situation progresses. Instruct whoever gets there first to start taking notes, including the names and phone numbers of those caring for your loved one, medications started, results of tests, information about procedures planned, etc. Have it available online for easy access.
Step 2: Connect with the Caregivers on Staff
The more connected and visible you make yourself to those caring for your loved one, the better off you both will be. Healthcare is like anything else in life; a personal relationship and good rapport can make everything go a bit more smoothly.
Do your part to communicate well, respect the time of others, and keep focused on the needs of your loved one. Keep staff aware of how to best contact you.
A word of caution: don’t get caught in the HIPAA (Health Insurance Portability and Accountability Act) roadblock. Make sure you are listed as someone who can receive information about your loved one. Most often, a medical release signed by your loved one will be needed to enable health care providers to deliver information about your loved one’s health status to you. If there is no formal authority, such as a living will or durable power of attorney for healthcare, some health care settings will accept a verbal release from your loved one.
Caregiving Tip: Connect with The Doctors… All of Them
The days of the “Marcus Welby, M.D.” type of family doctor is behind us. Today, healthcare practitioners are far more specialized. In some ways it is to your advantage to have more than one opinion about your loved one’s care. So don’t fear consultations or a new physician you’ve never met before. In most cases they bring a new and vital evaluation to the situation.
Step 3: Educate Yourself: Learn the Facts and the Options
Too often the overwhelming newness and complexity of dealing with the healthcare system causes us to become passive while assisting our loved ones. It is sometimes easier to simply accept the advice and opinions given to us by the professionals. But in some instances, those on whom we rely on offer only routine suggestions. We need to be proactive and consider, even suggest, alternatives.
As an example, if you know your mother strongly wishes to return home asap and rehabilitation is being considered, you can help personalize the planning and ask, “can rehabilitation be provided in my mother’s home instead of in a rehabilitation hospital?” What would it take to have her go home for that care? What are the options in facilities? Is there a superior facility across town for this type of problem?
Or in the case of seeking out a specialist, referral patterns are set by geography and patient preference for being close to home. If you are open to going “where the care for this type of problem is best”, let that be known. It might be the place down the street, but it might be an hour away. Being open to finding the most skilled and successful providers of the type of care you need will serve you well, though it can necessitate some additional work on your part.
Step 4: Plan Ahead
Always look down the road and plan for the next steps. Tomorrow will come more quickly than you think, and you do not want to be forced into decisions due to time constraints. This can be challenging when the next steps are not entirely clear. But even if all the details of the type of care that is needed are not yet known fully, you can often get a lot done ahead of time.
For example: determine the financial resources available; discuss preferences on location and type of facility; clear up differences of opinion within the family, etc. You can then narrow down options as the clinical status and the needs of your loved one after he or she is discharged become clearer.
Caregiving Tip: Learn about FMLA
Keep in mind that the federal Family Medical Leave Act provides that employers must give eligible employees up to twelve weeks of paid leave to care for an immediate family member with a serious health condition. Get information about specific FMLA regulations and enrollment procedures from your human resources department.
Step 5: Stay Calm and Focused... No Matter What They Throw at You
A typical caregiver lament I have heard over the years has been “I never knew one day to the next what was coming… I wanted to walk away.” Of course, you cannot and will never know what may arise in the future. The best course of action is to keep yourself focused on the key outcomes for your loved one. Is the goal to get to rehabilitation? Is the goal to get back home? Is the goal to have your loved one free of pain? Keep those goals in mind and remind the professional care team of these goals if you see they are moving in a direction that does not support these overall goals.
Caregiving Tip: Seek and Accept Support
For anyone caregiving, the stress level is enormous. You must be ready and steel yourself to stay calm, get facts, and deal with whatever arises. At times, there is no room for emotion – often, emotion must wait until after the decisions are made.
To make decisions you need to have good information. The professionals don’t always recognize the caregivers’ need for information, so caregivers must ask for it. “They seem to be in their own world of doing what they do” one caregiver told me. “They don’t offer it. I had to decide on how to be proactive and not just be seen as bothersome. Sometimes I had to ask two or three times for information, but I was not leaving there without it.” Never raise your voice, never be mean, but persistence is best.
Following these steps can help you feel that you’ve done your best to find the answers needed for making good decisions with, or on behalf of, your loved one.
