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Take time to prepare, even for the unexpected

Jan 15, 2023

In my first post in this series, Emotions and Motivations: What Caregivers Tell Themselves to Keep Going, I discussed how family caregivers motivate themselves to keep going. I concluded the post with three things I’m currently learning as a caregiver for my aunt.

They are

  1. Take time to prepare,
  2. Take it in stride, and
  3. Be patient with one another because caregiving is a marathon. 

Today, I'll talk about how you can “Take time to prepare”

 

You Knew the Day Would Come 

Permit me to replay the scenario I used in that first post, You Knew the Day Would Come:

You knew the day would come, but you didn’t think it would arrive so soon. Now you struggle with your thoughts and emotions. 

“This is not a good time for me. I’m in the middle of so many things. What with work, school, and family. Gerald is eleven, so he has all these special projects and sports that keep me running.”

 “How will I fit Momma in? I shouldn’t say it like that, ‘fit her in." After all she’s done for me! I never could have made it through school without her. She was Gerald’s babysitter, a total godsend. He was always sick with colds and fevers in the beginning. I ran out of sick time at my job and couldn’t take time off. And now she needs me. I’ll do whatever I can, whatever she needs.”

“This truly caught me off guard. I should have seen it coming, but I just didn’t want to see it. I didn’t want to think about it.”

“I don’t feel ready or prepared. What do I do? Where do I start? Except for keeping up with her medicines, I don’t know what’s going on with Momma. What does she have? How bad is it? I don’t even know what questions to ask.

And she can be so stubborn. How much will she let me help, anyway? I’m sure this is all new for her, too.”

 

Family caregivers hope to be prepared for anything 

A family caregiver’s goal is to be prepared for anything. You never know when an unexpected situation will arise, or what help you’ll need to provide.

Do you feel resentful when the inevitable emergency occurs at an inconvenient time? Are you overwhelmed and exhausted trying to stay on top of your loved one’s care needs, while not neglecting your own?

 

Three Tips to Help You  Get Prepared 

These three tips can help you prepare for an emergency, to approach it calmly and effectively, and to stay ready for whatever comes your way.

  1. Understand the basics of your loved one’s health condition or illnesses.
  2. Gather important medical information in one place for easy access.
  3. Know what resources are available in your area for caregivers.

 

Tip #1: Understand the Basics of Your Loved One’s Health Condition or Illnesses 

Get a list of their diagnoses. Write down what to look for if their condition should take a turn for the worst. Of all the diagnoses the doctor is treating, find out which one or two will most likely end your loved one’s life. They will fall into one of three categories: cancer; chronic organ failure like heart failure, kidney failure and chronic lung disease; and frailty-dementia, which includes injury from falls.

This will help you put together your loved one’s advance care end-of-life plan. It’s much easier when you focus on just the one or two key diagnoses. Collaborating with the doctor and guided by your loved one’s wishes and decisions, you create a plan that enables your loved one to have a “soft landing” at their end. Where they experience they were well cared for.

Then, with the doctor, you agree on plans that address current ongoing illnesses and symptoms that cause your loved one distress. Let’s not forget: these same issues aggravate your caregiver stress, and may even threaten your health and wellbeing.

Also, ask the doctor about prognosis. Start with whether they would be surprised if your loved one had a serious downturn requiring urgent or emergency care in the next 30-90 days. If your loved one’s condition is unstable, would they be surprised at a serious downturn in the upcoming weeks, days, or even hours?

As difficult as this may sound, how better to prepare for the unexpected? Why? While the downturns will be hard - that part cannot be avoided - they’re less likely to catch you by surprise and unaware. You get to start dealing with them and processing them before they’re staring you in the face in real time. 

Find out about treatment options. Ask the doctor what information sources they recommend. That way you can read up on your loved one’s illnesses, and on the latest research and treatments.

  

Tip #2: Gather Important Medical and Contact Information in One Place for Easy Access.

Gather records so you have your loved one’s health insurance card, and a list of the medication she is taking, with their dosages.

Prepare a list of the doctors and specialists with their contact information. Do the same for support professionals and services, and for family members and friends who are your support team. Keep this information easily available and handy in case of an emergency.

This information should not be too hard to pull together. You can collect much, if not most, at your next doctor's visit.

While you’re doing that, keep a journal of your doctor’s visit. Record what the doctor and other professionals explain, the care and treatment plans they recommend, and your own thoughts and questions.

 

Tip #3: Know what resources are available in your area for caregivers. 

Search out local support groups, community centers and agencies. Make a special effort to identify agencies and facilities that offer respite care services. Unfortunately, most such providers are not directly covered by insurance. Consequently, those with limited resources - and therefore have the greatest need for respite services - may be most challenged to find them. Better to research this early before you need them.

Research online for programs that provide financial assistance or counseling. And seek out family caregiver support groups.

Taking advantage of these resources makes your job more tolerable, if not easier.

 

Take time to prepare, even for the unexpected 

My mission is to help you not just survive, but to thrive. What does thrive mean to you? I think of “thrive” as being at peace with yourself. Caregiving is messy, and the best-laid plans can go awry despite your best intentions and efforts.

Nevertheless, preparing yourself for the unexpected positions you to make reasonable, more confident decisions and to get the support you need. 

To summarize, here are the three tips that can help you get there.

  1. Understand the basics of your loved one’s health condition or illnesses.
  2. Gather important medical information in one place for easy access.
  3. Know what resources are available in your area for caregivers.

Finally, know your limits and ask for help when you need it. Caring for a loved one with a long-term illness or disability can be physically and emotionally challenging.

Stay positive and look for the silver linings. If possible, use any crisis as an opportunity to learn from your mistakes or improve processes that didn’t work before. With a calmer attitude and a strong plan of action, dealing with emergencies can be easier than you think.

 

More to come 

In the next post I‘ll encourage you to “Take it in stride.”

 

Your Turn 

With these three tips in mind, how prepared are you for the unexpected?

Let me know in the comments, especially if you have an answer I didn’t mention.

 

If you are a caregiver for a family member, friend, or neighbor, please consider taking my Caregiver Quiz

 

Until next time.

Forrest Jones MD

Take my Caregiver Quiz

My website CaringEnd.com

Or reach me at [email protected]

 

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