“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”Former First Lady Rosalynn Carter spoke these sage words, and never have they been truer.
With the growing number of people afflicted with dementia and Alzheimer’s disease in the world, increasingly family members are called to take on the sacred (and onerous) responsibility of providing daily care to a loved one suffering through a long illness.
Every caregiver’s story is different: Some accept these responsibilities out of love, others out of obligation. Some express grief, others anger, many a deep loneliness. They often operate on autopilot, juggling work, home, children, and patient care. And no matter how many people are in the household, caregiving often feels like a lonely journey on a never-ending road.
But it does end. Eventually, the loved one transitions to the next stage of being, leaving behind this world and the failing body they inhabited.
The caregiver is left behind to grieve, of course, but also to “get back to normal”. In truth, they start over. Just as their loved one has transitioned, the caregiver transitions as well, to their next Self. Before that transformation, however, they face complex emotions that can feel like barriers to a prosperous transition.
No family caregiver truly is prepared for their loved one’s passing, no matter how much time they’ve had to prepare. For a caregiver, thinking about the inevitable death of the loved one they care for somehow feels like a betrayal—as if they are wishing the patient out of their life.
So, when the loved one does pass, the family caregiver often feels intense grief at the loss. After all, the caregiver spent more time with the patient than other family members, and much of that time was quite intimate—bathing and dressing them, feeding and soothing them.
Acknowledging this sense of loss—by telling a friend, pastor, counselor, or other family member—can start the process of grieving (and healing) almost immediately. Simply saying, “It’s so odd to look over at their chair and see it empty,” can prompt a conversation that will culminate in sharing stories about your loved one, transforming a sad thought into a pleasant memory.
Alongside the grief, relief surges almost immediately when the family caregiver loses their loved one. They’ve watched the patient grow sicker and sicker, perhaps forgetting who they are and growing increasingly frustrated with a world they can no longer navigate. The most crushing emotion of all comes in watching a loved one feel pain, sadness, and fear.
It’s not surprising, then, that caregivers breathe a sigh of relief when their patient breathes their final breath. Their loved one is safe and healed, and that’s a tremendous burden lifted from their shoulders. Yet, many caregivers feel further guilt about their relief.
“The feelings are not mutually exclusive,” says Barbara Slaine, end-of-life doula, Reiki master, and founder of Liphe Balance Center and ConsciousDyingMatters.com. “It’s like walking with life and death at the same time. When loved ones die and there are ambivalent feelings, that’s when the guilt sets in. You love them, but you see the end and part of you is relieved. At the same time, you can love and cherish that person. When the person dies, we rip into ourselves and feel guilty for having those feelings, when, in fact, it’s totally normal.”
It’s so easy for a family caregiver to fall victim to guilt and remorse after they lose their loved one. Even the most compassionate, selfless caregivers is apt to find themselves laboring under “shoulda, coulda, woulda” questions that only lead to more pain and sorrow. They hold themselves responsible for the loss, when, in truth, there was nothing they could have done to prevent the death.
After their family member dies, loving caregivers may run through every decision they made, every interaction they had with the patient, and wonder what they could have done differently. They may be riddled with self-blame that can consume them if not put into perspective.
Often, they manage grief and relief while figuring out how to “move on”. But how can a family caregiver pick up after their loved one has passed?
First and foremost, they must turn their care and healing ministrations toward themselves. Most have neglected self-care for the duration of their loved one’s illness, and the only way to reclaim their core Self is to begin tending to their own needs for a while.
“Often with chronic disease, the patient’s identity becomestheir illness, and they lose themselves in it,” says Marlon Simpkins, chaplain at Regional Hospice in Danbury. “I think the same thing happens with family caregivers. Their identity becomes so much about taking care of their patient, that when that role no longer exists, they are in crisis. Not only are you grieving the loss of your loved one, but you also are having a kind of identity crisis.”
No matter what “before” meant to family caregiver, the act of caring changes the person taking care. Just as their loved one transitioned from this world, the caregiver must transition as well. Grief itself is a transitive process, and part of the caregiver’s grieving should include reconnecting with Self, although they may not remember who they were.
The opportunity to reconnect with who they once were, however, does lead to feelings of hope and excitement, which may seem out of place when discussing loss and grief.
One of the most confusing symptoms of grief in family caregivers, according to those who study the process, is “euphoria”. Often, they have sacrificed quite a bit of their life to care for their loved one—giving up travel, work opportunities, limiting socializing and hobbies. It’s no wonder then that many caregivers exhibit signs of depression. When a family member’s illness is prolonged, as happens with dementia and Alzheimer’s in particular, the caregiver may begin to feel despondent, as if there is no joy left in life, and there never will be again.
When the family member’s death is imminent, the caregiver unexpectedly experiences flashes of euphoria—hope and excitement about what might bein the future. These brief moments of joy are short-lived, however, because guilt quickly overshadows them.
“It’s really okay to feel relief and take that big exhale; let yourself feel the space of it, for now, having this time to yourself,” says Katherine Silvan, spiritual counselor, Reiki practitioner, interfaith minister and inspirational speaker based in Fairfield County.
This may be the emotion hardest to handle, yet the one the caregiver needs to embrace in order to move on to the next stage of their life. Silvan recommends joining a bereavement group to help deal with these complex emotions: “You’ll hear how other people are taking care of themselves, traveling, moving on, meeting new people, and it gives you permission to do that. We have this strange idea that as a grieving person, we’re supposed to be in mourning all the time, depriving ourselves of all joy. That’s not something anyone who’s loved us would want for us.”
Transitioning from Grief to Hope
Successfully transitioning beyond the role of caregiver isn’t easy, and it’s not quick. There’s no easy answer or magic formula. But hospice workers and grief counselors recommend finding a support system. A bereavement group, spiritual counselor, church organization, or a great group of girlfriends can all lend a listening ear, strong shoulders, and warm words, as needed.
Don’t rush the process and be willing to feel allthe feelings. Accept that you will feel guilt, relief, sadness, loneliness and hope, sometimes all in one day. While most hospice organizations offer 14 months of bereavement counseling to patients’ family members, there is no time limit on grief. Years after your family member has passed, it’s okay to be sad on their birthday or to lay low on the anniversary of their death.
“For caregivers, one of the most helpful tools is engaging with their spiritual resources, and that’s very broad,” says Simpkins. “A lot of people relate spirituality to religion, and that can be the case for some people, but it means whatever rituals, activities, and relationships breathe life into you. If you’re an artist, for example, but you’ve been caregiving for six months and haven’t had time to sketch and paint, it’s important to re-connect with that, because it’s part of the core of who you are.”
Family caregivers willfind themselves again after their loved one passes, but only if they feel the mix of emotions, accept that those feelings are valid and normal, and acknowledge that today is a new day with new possibilities.
Mindful Steps for Caregiver Self-Healing
- Pause, take a breath, and try not to judge yourself.
- Understand grief comes in waves and encompasses a myriad of feelings. Feel them, acknowledge them and remind yourself where they are coming from.
- Remember your loved one—especially the stories that make you laugh.
- Think about what you did for your loved one, and how you took care of them in a way no one else could.
- Be grateful for the gift you gave them, as well as the gifts you received from the time you spent with them.
- Build yourself back up. Try to remember what used to make you happy. What small step could you take today to get closer to that happiness again?
- Each day, do at least one thing that makes you feel better.
- Ask for help when you need it, then keep moving forward.