Caregiver Survival: Tips for the Expectant Caregiver

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The first stage of caregiving is the Expectant Caregiver. This is a bit of a limbo stage that we all just kind of stay in. You never know when you might be called on to become caregiver for a family member. You might even be in the trenches with one family member and also be an expectant caregiver for another as I was.

As I was a caregiver for my mother-in-law, I was also very well aware that I would one day be a caregiver for one or both of my parents. I also gave birth to a special needs child who requires me to be more of a caregiver (as well as a parent) every single day.

The Expectant Caregiver is someone with a concern that at some point in the future a relative or close friend will need more and more assistance and time from you, making you their caregiver.

The Six Stages of Caregiving

In 1997, Denise Brown developed the concept of the Six Stages of Caregiving. After working closely with caregivers for several years, Denise noticed that every caregiver struggles with the questions of “Why me?”, “Why now?”, and “What now?”.

She developed the stages to answer those questions and to help caregivers find direction and purpose as they travel this particularly difficult and often unexpected role.

The Six Caregiving Stages are:

  1. The Expectant Caregiver
  2. The Freshman Caregiver
  3. The Entrenched Caregiver
  4. The Pragmatic Caregiver
  5. The Transitioning Caregiver
  6. The Godspeed Caregiver
What to do before becoming a caregiver

Why You Need to Know What Stage of Caregiving You Are In

A key to every caregiver’s survival is knowing what stage of caregiving they are in. Why is this important?

Knowing what stage of caregiving you are in acheives three vital functions toward caregiver survival:

1. Knowing what stage of caregiving you are in gives you purpose.

Having a clear purpose helps you cope and navigate that particular stage. Your purpose will guide you toward the next stage allowing you to develop valuable skills that you will carry with you beyond your caregiving journey. Your purpose also allows you to look back on your caregiving experience with pride and with regret and guilt that so often accompanies caregiving.

2. Knowing what stage of caregiving you are in gives you confidence.

As you move through each stage the knowledge and experience you gain will move with you. Each stage builds on the other providing not only the skills needed to navigate your current stage and cope with the challenges but also a stronger ability to create successful plans and adapt. A confident caregiver is a better advocate not only for the needs of their caree but also for their own needs allowing you, the caregiver, to avoid burnout.

3. Knowing what stage of caregiving you are in gives you hope.

No longer will you look into a great chasm of the unknown, but rather you will see that there is indeed something better ahead of you. You will be empowered by knowing you won’t be at this point forever.

You also receive hope because you are not alone. There are many others in the same stage, with very similar struggles. There are those who have moved forward on whom you can rely for support and understanding. And there are those who have not yet reached the stage you are in that are in desperate need of your expertise.

Caregiver Survival: Priorities of the Expectant Caregiver

The Expectant Caregiver stage is all about making the transitions to future stages less traumatic. It’s allowing you an opportunity to be prepared to be a caregiver. During this time it’s important to gather information and begin forming some kind of plan. This is a vital stage of caregiving and, if navigated properly, will set you up for success in the future stages of caregiving and beyond.

You will spend a lot of time with your potential caree discussing their wishes, worries and concerns. You are gathering the information you will need to become a powerful and authoratative advocate on their behalf. You will also be getting to know them as a person.

Some of us are never able to truly experience the Expectant Caregiver stage. This was true of my experience as a caregiver with my MIL. I wasn’t made aware of her needs and my role until I returned from my honeymoon and was presented with expectations. There was no time for me to plan and strategize.

Now, as an expectant caregiver for my parents, I’m able to guide us through the preparations and planning to ease the transition if and when I’m called on to assume the role of caregiver. For my son, the expectant caregiver stage was extremely short as we began discovering his extraordinary needs early on, but it did allow me an opportunity to mentally prepare myself to be his caregiver.

Use whatever time you have in the Expectant Caregiver stage to prepare yourself and your caree if possible for the upcoming transition. The worst thing you can do as a caregiver is cross bridges when you get to them because you’ll just end up drowning.

How Will I know I’m An Expectant Caregiver?

The expectant caregiver stage is full of questions. In fact, you’ll want to start asking questions at the first inkling you might be needed to assume the role of caregiver one day. You might be wondering, “How will I know if I’m needed?” To answer this question, you will need to, you guessed it, ask more questions!

  • Am I noticing anything in my family member that seems unusual or worrying?
  • Has your family member received a difficult diagnosis?
  • Are you seeing a diminished ability to perform normal tasks such as hygiene, finances, or home management?
  • Is your family member getting to an age where they are more naturally in need of extra help?

If you can answer any of these questions with a “yes” then you are an expectant caregiver.

Questions of the Expectant Caregiver

Now that we’ve established your role as an expectant caregiver, there are some questions you will want to start asking now so you can set a solid foundation for your upcoming role.

  • What are my potential caree’s likes and dislikes?
  • What hobbies do they have?
  • What do they hold most dear to them?
  • How do they live their life?
  • What does a typical day/week/month look like to them?
  • What makes them feel safe and confident?

You’re also going to be making plans and decisions together with your future caree.

  • Where will they live?
  • What are your boundaries
  • When will you know to ask for help?
  • How will we finance everything?
  • Who else needs to be involved?

It is vitally important in this stage that you realize and are mindful of the decisions that you make because they will impact your future as a caregiver.

Caregiver Survival: Stumbles of the Expectant Caregiver

With every stage of caregiving there are stumbles. These are things that might act as barriers or roadblocks. Of course, every caregiving situation is unique and we can’t plan for everything but there are a few things we can expect to happen because they happen for almost everybody and these are what we call our stumbles.

My Potential Caree Won’t Discuss the Future

This happens a lot. We don’t want to think about a time when we won’t be independent and unable to care for ourselves. We don’t want to have to rely on others. As a caregiver, be aware that these are difficult conversations for both of you and you will likely face some resistance. There are a few strategies to get you through this resistance and into meaningful, productive discussions.

  1. Be prepared. Have a list of the topics that need discussion and questions that need answers. Come in with a working knowledge of the topics you plan to discuss. Your confidence on the subject will put you at ease.
  2. Enlist a mediator. Your caree may feel more comfortable in a professional setting. Enlisting the services of a Caregiving Consultant to help guide the conversation will help avoid unnecessary conflict.
  3. Be a listener. Make sure at this stage that you are not the one doing all the talking. Listen to your caree’s concerns and needs. Take your time and be willing to pause the difficult conversations and revisit them later.

My Potential Caree Doesn’t Want to Disclose Private Information

As a caregiver, you learn more about your caree than you probably would have under any other circumstance. Of course, before your role gets to that entrenched stage, sharing these personal details is likely going to be met with resistance.

Start slow. Don’t ask or expect all the details immediately. Offer your caree the chance to write out all these details and put them in a safe place until it becomes necessary for you to use them. Keep things simple as your life is about to get quite complicated and don’t get bogged down by your caree’s resistance.

I Don’t Want to Think About My Loved One Needing A Caregiver

It’s hard to face these realities that the people we love are losing such a large part of themselves. We don’t want to think of them becoming less capable in any way. It’s important though that we face the reality sooner rather then later. The more you know about these difficult issues, the better your future will be.

Caregiver Survival: Tips for the Expectant Caregiver

One thing you’ll want to keep in mind throughout your caregiving journey is that caregiving is constantly changing and evolving. One of the best tools a caregiver can have is the ability to adapt, experiment, and think outside the box. Nothing you decide on and plan for is set in stone. This is a guide, not a rule book.

Tip #1 for the Expectant Caregiver: It’s all about the planning

Begin putting a solid care plan together now. It’s a lot easier to compile information before you begin the more active stages of caregiving then try and pull it together while in the trenches.

Talk to other caregivers, join social media groups, research your caree’s needs so you have a clear picture of what lies ahead and are able to begin strategizing. Caregiving is a journey that requires a roadmap. Yes, there will be detours, but having that roadmap will do wonders for your confidence and peace of mind.

Get started on this journey by making sure all your legal documents are in order. Meet with an attorney to complete durable powers of attorney, advance directives, and wills.

Tip #2 for the Expectant Caregiver: Set some boundaries

Make sure you and your caree are on the same page. Both of you need to be clear about expectations. While you can’t plan for everything, you should begin by deciding where your care boundaries are. Again, none of this is set in stone and you will evolve as a caregiver.

When I became my MIL’s caregiver, I swore I would never be able to change her incontinence underwear. Six years into my caregiving however, I was doing full, bed-ridden diaper changes with no problems. My comfort zone evolved with her level of care. Admittedly, my comfort level may be different should my father ever need advanced care.

At this point you need to be honest with yourself and decide what you are comfortable with and what your caree is comfortable with you doing. Outline those boundaries now, but allow yourself to evolve as your caree’s needs advance.

Tip #3 for the Expectant Caregiver: Put your team together now

One of the most neglected caregiving tools is putting together a team. Oh sure, when you become a caregiver you will have many offers of support but when life get too real, you’ll find that support get harder and harder to find.

Don’t fall into the trap of believing that your caregiving team has to be put together with professionals. Yes, they are an important part but some of the most valuable members will be “lay people” who just want to help you out. Begin by discussing the situation with family members but don’t forget neighbors, friends, and church members. Many communities have people willing to help out with transportation, meals, and companionship.

When we started taking care of my MIL, we had so many people assure us they would be there every step of the way and help us however we needed. And that went really well…for about two months. Slowly, our team got smaller and smaller until it was just me and my husband with long-distance (we’re talking thousands of miles away!) support.

You see, our supporters, like us were unprepared for the level of care my MIL required. It got overwhelming fast! Our lack of preparation made for some very lonely and chaotic years as we journeyed through the stages on our own, without anyone or anything to guide us.

Tip #4 for the Expectant Caregiver: Gather information

This is the time to put on your investigative reporter hat and gather as much information you can. Not only will you want to gather personal and medical information for your future caree, but you’ll also want to familiarize yourself with resources available to you.

  • What are the associations connected with your caree’s diagnoses?
  • Who are the specialists in your area?
  • Are there any counseling and therapy options?
  • What kinds of support is available in your area?
  • What kind of in-home help can you get?

You’ll also want to be aware of where important financial and legal documents are kept and the numbers of financial and legal professionals retained by your potential caree.

Tip #5 for the Expectant Caregiver: Don’t forget to plan for yourself

As you’re gearing up for your potential role of caregiver, you’ll want to remember to plan for yourself. Almost all of my family caregiver clients have expressed the same sentiment; they don’t know who they are outside of caregiving anymore.

Begin planning now for how you will give yourself breaks and find times of respite. Maybe you work out with another family member to take over for you a couple times a year. Many nursing homes and care facilities offer respite care for short periods. You might also be able to budget for a few hours of help from a CNA. Don’t forget to talk to your caree’s doctor about possible palliative care options (it’s not just for the terminally ill!)

This is also a great time to start a habit of journaling. The further you go down this path, the more you will find journaling to be a help to you. Chronicle your feelings. Write down your concerns and strategies. Take note of the actions that are working and not working. Not only does this help you emotionally, but it is an invaluable tool as you become more entrenched to be able to refer back to previous stages. When your caregiving journey comes to an end, you will be able to look back and be amazed at how far you came and the growth you experienced.

What to Do Before You Start Caregiving

The expectant caregiver stage can be scary but it is such a valuable stage. This is the time to really get to know your caree and begin planning for future stages. It’s a time to set boundaries and begin gathering your caregiving team. During this stage you’ll be gathering information and educating yourself. You’ll also be working on plans to take care of YOU.

This stage is all about preparing yourself to be a caregiver and allowing your caree to prepare to be under your care. Caregiving is a journey that needs a roadmap. It’s during this stage that you start mapping it all out and working out strategies for any “detours” that come your way. You’ll be working closely together to ensure that the next stages are peaceful and as stress-free as possible.

The expectant caregiver stage is all about preparing for your caregiving future so when this journey is over you are able to look back with pride, not regret.

No matter what stage of caregiving you are in, I want to help you. Too often we focus all the attention on the caree and the caregiver’s needs get pushed into the back corners. You don’t belong in the shadows. Let me help you live in the light. Schedule your FREE initial strategy session today!

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