Caregiving is more often than not an unexpected role borne of necessity. It’s one that is usually thrust on you when you least expect it, not one that you’ve carefully timed or planned to fit your schedule. It’s demanding and relentless, often continuing for months or years. There’s also an identity shift that comes with caregiving, such as a change in your familial role (for example, from your loved one’s child to guardian) or a change in your sense of self.
This is the reality of the common caregiver experience. It comes with emotional twists and turns that can be broken into three stages. If you’ve recently been initiated into the caregiving community, understanding where you are now and what’s to come will help you plan for this experience over time.
Caregiving Stage 1: Realizing the Need for Care
Understanding What’s Happening to Your Loved One
This first stage of caregiving is distinguished through feelings such as confusion, overwhelm, surprise, fear, denial, and sadness.
The caregiving role is often triggered by a loved one’s sudden crisis, such as a stroke or heart attack, or a pain/change in behavior that may lead to a diagnosis such as cancer, ALS, or Alzheimer’s disease.
Each ailment comes with its own learning curves:
Learning Curve 1: Deciding who will provide care. Deciding who can help with care and in what capacity may cause problems if there’s no clear volunteer. There are schedules, competing concerns (such as small children), and proximity/accessibility to the care recipient to consider. It takes time to learn what is possible, what is needed, and how to coordinate.
Learning Curve 2: How to provide care. Each disease comes with its own progression or recovery schedule. In light of this, you and your family will face challenges (both emotional and practical) in learning how to handle and care best for your loved one. It takes time to learn about the ailment and the progression of care that will be needed over time.
Learning Curve 3: Acceptance. It is worth mentioning that there will often be an acceptance curve for many family members: coming to terms with how severe/real the diagnosis is and the need for assistance may take some time.
Your loved one will also likely be struggling to adjust or accept their diagnosis, situation, and changing role within the family.
In this stage, it’s important to proactively seek out and accept help. Support groups, CRC OC, and many other organizations (many ailment-specific) are out there to help you to find the information and community you need. You may also want to arrange access to their financial and legal documents through a power of attorney, discuss their desires for care, and gather resources to prepare for later stages of caregiving.
Caregiving Stage 2: Entrenched in Care
Understanding How Long this Situation Will Persevere and Learning to Cope
This second stage comes about a year or two into caregiving and is marked by emotions such as exhaustion, frustration, overwhelm, guilt, anger, resentment, numbness, etc.
As the caregiving role becomes your new normal, it’s very common to start wondering how long this situation will persist and how long you will be able to continue. This may lead to feelings of anger, then guilt over that anger. Rest assured, this thought is not something to feel guilt over, it’s very normal.
In this stage, you may start to notice your own health, personal life, work, family, etc. has started to suffer. When you notice these feelings or start to have doubts about whether you can carry on, it’s time to pause and reflect.
By neglecting your life, you will be less able to care for your loved one. For example, you may realize that there’s always more to learn about the role you’re in, the diagnosis your loved one is battling, and how to adjust care as it may progress, but may feel too exhausted to even think about it. This harms you and your loved one, and is why we say it isn’t selfish to care for yourself. It’s a necessary part of caregiving.
In this stage, evaluate the things you do and ask for help or arrange for a part-time paid caregiver to take some things off your plate. You can look into assistance with organizations like Meals on Wheels, or look into respite care options.
Caregiving Stage 3: The End of Your Role
Accepting the Progression has Gone Beyond What You Can Responsibly Manage
The final stage of caregiving comes as the needs have either extended beyond what you can manage or your loved one has passed. In both cases, your role as caregiver has come to an end. This final stage is marked with emotions such as guilt, grief, loss, sadness, surrender, and closure.
Unless your care recipient had a temporary or treatable diagnosis, this final stage is the most dreaded. Bringing a loved one into a professional care facility, hospital, hospice, or nursing home has taken you from primary caregiver to their advocate.
You’ll face intense questions, such as how your loved one wishes to balance quality of life and longevity. You may question how you handled care or think of how you could have/wished you had done things differently.
In this final stage of caregiving, it’s important to allow yourself time to grieve. To grieve the loss of your loved one, the loss of your role as their caregiver, and/or the changes you’re experiencing. In this stage, your life is shifting yet again. You should seek community, family, and counseling to transition back to your life pre-caregiving.
Caregiving for many is a long and difficult road marked by varying levels of emotion and acceptance. Caring for yourself and seeking external help or community can make all the difference in managing care and your life outside of care.
For further reading and resources, we invite you to check out our library of information for family caregivers by clicking here. You are also welcome to give us a call at 800-543-8312 to find out more about how we can support you in your caregiving journey.