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Every family caregiver I have ever met, while our stories and situations may be different, have one goal that unites us all – caregiver survival.
The further you travel through the journey of caregiving the more intense your role becomes. Your faced with a myriad of unknowns, the unplanned, and the unexpected.
Gone are the any ideas of living a full and complete life. You’re a family caregiver. You’ll be lucky to survive.
At least that’s what most of us feel like. But there is hope!
That hope comes in the form of a caregiving roadmap – a guide that moves us through the various stages of caregiving, giving us purpose, hope and confidence.
The six stages of caregiving is a concept developed in 1997 by Denise Brown in her book, The Caregiving Years: Your Guide to Navigating the Six Caregiving Stages. 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 part of life.
Why Knowing the Six Stages of Caregiving is Important
You might be asking yourself, “How exactly does this help me?” The six stages of caregiving is important to know because it provides you with purpose, hope, and confidence. Having these three things will turn your caregiving from the most traumatic experience of your life to one of the most fulfilling.
Knowing the caregiving stages, identfying their struggles so you can develop a plan to overcome them and having the hope a roadmap such as this provides will prevent you from being filled with sorrow and regret when your time as a caregiver comes to an end.
Knowing which of the six caregiving stages you are in will provide you with a clear purpose. Each stage is associated with a keyword that guides you through to the next stage. Every keyword will be carried with you giving you powerful coping skills to navigate through the next stage.
Knowing whcih of the six caregiving stages you are in will provide you with hope. No longer will you look into a great chasim 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.
Knowing which of the six caregiving stage you are in will provide you with confidence. As you move through the stage the knowledge and experience you gain will move with you. Each stage’s keyword will build 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.
The Six Stages of Caregiving: What you need to know
Before we dive into the details of the six stages of caregiving,
There are three parts of a caregiving experience that hold true no matter what stage of caregiving you are in.
- Caregiving is not location based. You do not have to live with your caree in order to be considered a family caregiver. You don’t even have to be in the same zipcode. What’s important is that you are taking the time to care for someone who is no longer able to fully care for themselves whether that is personally taking on each task or being the person who oversees the entire process.
- Caregiving is an emotional experience. Not everyone experiences the same emotions at the same time or stage or even for the same reason.
- Every caregiver wants support that understands the impact of caregiving on you. Caregiving will be a very lonely experience for you unless you find a person or group that really understands what you’re going through. But it’s equally that you be open to those who understand that impact.
Those three things are true for every caregiver in all six stages.
We’re almost ready to dive into those stages but I want you to note a couple things that will help you process the stages as I go through them.
First these six stages are a fluid and flexible guide. Not everyone experiences things in the same way. There is no schedule for moving through the stages. You might even identify with more than one stage. It’s as individual as your are as a caregiver but it provides a roadmap for navigating you experience.
In each stage there will be a keyword that is meant to help you cope and give you purpose as you navigate that stage. It will guide you to the next stage and will be a skill you carry with you that will positively impact the next stage.
The last thing I want you to realize as we talk about these stages is that stumbles are a natural part of any journey and we all experience them but what you learn through the stages will be your steadies to get back up again.
So when I talk about each of stages you’re going to listen for your keyword and your purpose. I’m just going to give a basic overview of these stages for n ow and in future podcasts we’ll dive much deeper into each stage to give you a better understanding.
Now that we’ve got all that out of the way, let’s dig into those six caregiving stages, shall we?
The Six Stages of Caregiving: The Expectant Caregiver
The first of the six stages of caregiving is The Expectant Caregiver. We are all expectant caregivers. It may even be when you end one caregiving journey you become an expectant caregiver for another.
The expectant caregiver is someone with a concern that at some point in the future a realtive will need more and more assistance and time from you, making you their caregiver.
It’s during this time that it’s important to gather information and begin forming a plan. You will spend a lot of time with your potential caree (the person for who you will be caring) discussing their wishes, worries and concerns. In order to become a powerful and authoratative advocate, you will start gathering information about your potential caree. You will also be getting to know them as a person.
- What are their likes and dislikes?
- Do they have any hobbies?
- 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?
Asking these questions now will set the stage for your upcoming role.
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 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.
- Familiarize yourself with the legalities of caregiving and caregiving issues.
- Determine financial situations
- Research local agencies and facilities
- Get to know health care providers and familiarize yourself with treatment plans
- Start getting organized
- Understand your potential caree’s routines and start thinking about how you might integrate them into your own
- Be realistic about your potential caree’s needs
- Start a journal to document your feelings, your concerns, your actions, and your results
- Look at your own life and start making a plan for integrating caregiving
- Make yourself a priority and work toward becoming your best self now – physically, emotionally, and financially
- Learn your caree’s life story
- Discover who your caree values and start connections
- Include your own health and well-being in every care plan
- Remember simplicity is best. Caregiving is complicated but your solutions should be simple.
The Six Stages of Caregiving: The Freshman Caregiver
You become a freshman caregiver when you begin helping your caree on a regular basis. It’s during this time that you are trying to find:
- available service to help lighten the load.
- professionals and other caregivers you can rely on to answer your questions.
- a good organization system.
- support that offers you comfort and understanding.
- ways to enjoy your own hobbies and interests.
You’re challenge will be trying to discover the solutions that work best for you and your caree. Soon, you’ll discover just how complicated our healthcare systems can be. Keep asking questions and never assume.
Your sanity savior will be researching information, solutions, and resources. It’s important to get comfortable with this process now as it will serve you well later.
Learn to be vocal during this time. Never assume something and always voice concerns even if they seem completely obvious. Don’t wait for people to step up but let them know of your expectations. The longer you wait, the more complacent people will become.
Congratulations! You’ve officially stepped into the role of caregiver! During this time you’re going to want to do a lot of experimenting to determine what will work for you and your caree. Now is the time to test the waters.
You’ll want to practice advocating and voicing your concerns. Start researching all aspects of your caree’s life – financial, legal, healthcare, community – and commit to becoming educated in their processes. Learn how the systems work and stay informed about their changes.
Now is also the time when you will want to be honest with yourself about your caregiving limits and boundaries. What are you really comfortable with? Do you have clear boundary lines that need to be established right away? What might cause you stress and concern?
Keep developing those budgets and don’t forget to focus on you. Keep up with the things you enjoy most.
- Educate yourself as much as you can about your caree’s health.
- Learn the basics of providing care
- Start finding support through groups and in your community
- Start planning your breaks now and get your caree comfortable with you finding the respite you need
- Rely on your community to help you with some of your tasks
- Know your caree’s wishes and let them guide you as you continue developing your care plans
- Continue to reflect changes in your journal
- Start documenting your caree’s needs and your responsibilities as a caregiver
- Put together a medical journal to have on hand for emergencies
- Start creating habits for communication among family through regular family meetings.
- Begin managing the money, always planning for future care
- Start Solutions Funds and Emergency funds so you can hire necessary help
- Create your care plan. And a back-up plan. And a back-up back-up plan.
- Start your caregiving closet
- Find resources and support for yourself
- Get rid of your expectations and embrace your reality
- Create your happy place of privacy and rest
- Continue to maintain your own health
The Six Stages of Caregiving: The Entrenched Caregiver
It’s during the Entrenched Caregiver Stage that things start to get real. You’re now helping your caree on a daily, if not constant basis. You may have even moved your caree to your home or an assisted living facility. The Entrenched Caregiver is someone who structures their day around the needs of their caree.
At this stage you “have all the feels”. You’re tremendously proud of what you do. You’re overwhelmed with the enormity of your role. You mourn for yourself and your caree and the lives that are being changed. Anger and frustration seem to be your constant companions. You might not even recognize yourself anymore. But one emotion unites us all – exhaustion.
It’s during this time that your focus is receiving:
- help from whomever or wherever you can find it.
- any kind of break from the monotony of caregiving.
- support and understanding from other caregivers.
At this point routine is going to become your best friend. Even the most spontaneous caregiver will sing the praises of routine. A familiar schedule for you and your caree is what will keep the overwhelm at bay and provide you both with some emasure of comfort.
It’s important to remember that this stage is the most difficult stage for you and your caree. What you’ve learned and prepared for in the previous two routines will now be your lifeline.
As always, your health and well-being is just as important as that of your caree. Make sure to create a routine for your own care.
- Be honest with yourself about your limits and how far you are willing to go in your role. There is no right answer, it’s all about what works best for you and your caree.
- Know your caree’s limits so you can better organize your days.
- Take regular breaks so you can stay at your best.
- Start using your Solutions Fund.
- Keep up with your support system. Remember, it’s when we don’t want support that we find we need it most.
- Continue to educate yourself about your caree’s health and treatment.
- Don’t be afraid to increase help as your caree declines.
- Manage the budget as much as you manage the care.
- Continue your journals, documenting changes and solutions.
- Remember, there is no perfect caregiver. Be forgiving of yourself and know you’re going to make mistakes and have bad days.
- Set boundaries and hold them dear.
- Don’t distance those you love and that are close to you.
- Be aware of the times when hoping leads to inaction.
- Be ready to be an advocate.
- Assess risks with prudence but remember “the professionals” are just educated advisors. You know your caree and situation best.
- Be open about who provides help.
- Continue to ask questions.
- Don’t sacrifice your own health and well-being no matter how tempting.
The Six Stages of Caregiving: The Pragmatic Caregiver
At this stage you are “an old pro” at this caregiving game. You’ve been there, done that, and bought the t-shirt. Your expectations of yourself, your caree, and those around you have become realistic and you now understand that your best is enough. You’re able to find humor in dark situations, recognizing the necessity of laughter for survival.
Now you’re finally able to welcome:
- the joys of your relationship with your caree and others.
- forgiveness of yourself, family members, friends.
- finding common ground with your caree through shared activities and experiences.
- the hope of future possibilities.
Because you’re now settled into your role as caregiver and have found a good routine you now are able to begin to relax and focus on your personal growth. You’re able to take the lessons you’ve learned from the previous three stages and apply like a pro. This season of caregiving is all about confidence and character development.
- Develop your relationship with your caree, allowing yourself forgiveness, and finding joy in who your caree is now.
- Work on forgiving. Realize that you have no room in your life for bitterness.
- Build your relationships by enjoying activities with others. You’re not just a caregiver.
- Start thinking about what the future holds for you.
- Realize that perfection is not success.
- Reassess your care plans, caregiving closet, and emergency plans.
- Keep educating yourself and asking questions.
- Remember to focus on your own health and well-being.
The Six Stages of Caregiving: The Transitioning Caregiver
It’s at this stage that you see your caregiving journey coming to an end. The tragic part of this role is there is typically only one way you move on and that is with the death of your caree.
At this point you’re focus is allowing:
- time for you to mourn and grieve. There is no one right way to mourn. Find what helps you.
- remembrances to remain. Don’t bottle your grief inside by removing all traces of your caree. Allow yourself to remember.
- reflections of your experience.
It’s important that you not fear this stage and see it as a failure. This is a natural part of life, a completion of the circle.
Your big task now is to slow down, stop focusing on doing all the things, and transition to just being. Your caree is your priority. The battle to ward off death has ended. You’ve fought well and done enough. It’s time for you to seek peace and tranquility for both you and your caree.
You’ve already got an end-of-life plan and now is the time to begin implementing. Be kind to yourself. Allow yourself to slow down and begin to release.
- Take breaks sparingly and with judgement.
- Recognize the value of being.
- Don’t wait to seek out end-of-life help for your caree.
- Don’t shy away from speaking about death. Allow those conversations.
- See the sacredness in providing end-of-life care and preparing your caree for this final journey.
- Let others in. Allow family and friends to visit and have their last moments with your caree. Be at peace and have no regrets.
- Take every opportunity to be with your caree. Hold their hand. Have conversations. You never know when it may be your last opportunity.
- Allow yourself to feel. There is no feeling that is off-limits during this time.
- Create your plan for Replacement Therapy, your plan fore replacing the time spent on caregiving tasks with another task.
- Remember your caree. Don’t rush to get rid of everything. Go at a pace that feels right to you.
- Feel pride as you reflect on your journey as a caregiver.
- Start thinking about the future and what comes next.
- Be patient during this time of transition. The timeline is different for everyone.
- Start looking back over your journals. You’ll be amazed at how far you’ve come.
- Don’t neglect your own health. It’s just as important now as it ever was.
The Six Stages of Caregiving: The Godspeed Caregiver
This final stage as a caregiver comes as a surprise to many. After all, your official caregiving duties are completed. You’ve been the transitioning caregiver and your caree has now passed. A few years may have even passed.
Yet, here you are and you find your thoughts turning toward other family caregivers. You feel compelled to share and make a difference in their lives. It could be something as simple as noticing a caregiver and offering an understanding word or smile. You might be able to volunteer to help family caregivers in your community with small errands, meals, or short breaks. You may even feel led to start your own business to help other caregivers.
Whatever you feel called to do you do it because you treasure:
- your dreams both old and new,
- the challenges which led you to learn new skills,
- your opportunities to share lessons learned,
- your memories of your caree and your time as a caregiver.
Right now your focus is implementing the lessons you learned as a caregiver to the other parts of your life. You’re determined not to let your wisdom be wasted.
- Now is the time when you can make your dreams your reality.
- Become a mentor or leader for other family caregivers.
- Reflect and treasure your memories of your caree.
- Implement the tools you have honed as a caregiver in other parts of your life.
- Contine to keep your health and well-being a priority.
How do you achieve the illusive caregiver survival? With the six caregiving stages as your roadmap you will emerge transformed. By following this guide you will gain purpose, hope and confidence that will move with you through the next stage of caregiving and beyond. You will be able to look back on your time as a caregiver with tremendous pride, free of guilt and regret. The knowledge and skills you gain can be used to enhance other parts of your life. When your journey does come to an end, you will see that you came out as not merely a survivor but a conqueror.