Dear Caregivers,
I’m sure you have had days when caring for your loved one suffering from Alzheimer's disease feels almost unbearable. Maybe you’ve had a sleepless night as your loved one worked through a bout of agitation. Or perhaps you’ve just watched them struggle with a task that just a short while ago they could do easily. Or maybe you just find yourself suddenly exhausted contemplating a long road ahead filled with seemingly endless responsibilities
The flood of emotions can come all at once, resulting in an overwhelming sense of sadness, frustration, loneliness, anger, and helplessness.
I recently heard from a caregiver a word that aptly describes this overwhelming surge of feelings: hopesick. Being hopesick is a deep, aching desire for things to be different—to return to a life that is the way it was previously, and the realization that Alzheimer's is gradually taking away the person you love.
You are not alone in experiencing these feelings: Grief, guilt, and emotional exhaustion are common experiences among Alzheimer's caregivers. And there's no reason to feel ashamed of these feelings, either.
While you can't always change the circumstances that give rise to these emotions, there are ways to make them more manageable. Here are a few suggestions: .
GIVE YOURSELF PERMISSION TO GRIEVE: Sometimes in your efforts to “stay strong” for your loved one, you suppress your own feelings. But grief isn't something you can simply wish away. Allow yourself to acknowledge what you're feeling: If you need to cry, cry. If you need to feel angry, feel angry. Remember, you can love someone deeply and still bear resentments for having to bear the demands of caring for them. That doesn’t make you a bad caregiver.
SHARE: Find someone you trust, such as a friend, family member, or your NAN Navigator, and share your feelings. There are times when you don’t need advice or solutions: Just having someone listen is enough. If you can, try to find a caregiver support group.
GIVE YOURSELF A BREAK: Even a short break from caregiving can help you regain your emotional balance. Ask a friend or family member to spend time with your loved one while you take a walk, and explore Adult Day options. As we’ve always said at NAN, "taking your oxygen first" is the key to sustaining your ability to care for someone else.
MAKE ROOM FOR JOY: When you're feeling hopesick, the idea of feeling happy may seem like an impossibility. But grief and joy can coexist. Having a special moment together, sharing a favorite song or email, or a simple squeeze of the hand can bring pleasure in even the bleakest of times. Looking for joy doesn't mean you are ignoring the serious effects of your loved one's illness. Rather, you are reminding yourself that there's still a life to be lived, even in the midst of terrible loss.
Finally, remember that an occasional bout of being hopesick is part of the consequences of your role, but being in a continual state of despair is another thing entirely. If your feelings become persistent or interfere with your abilities to function, talk to your healthcare provider or a counselor.
In the end, you don't have to solve every problem, overcome every obstacle, or somehow find a way to be cheerful. It’s enough to acknowledge what you're feeling, reach out for support, and take the next small step forward.
Here are some more resources to help you with the emotional challenges of caregiving:
Facing the Grief of Caregiving:
It is common for family caregivers helping a loved one with Alzheimer’s disease to feel a profound sense of grief for all that is lost to this disease. Loss of interest in activities we previously found rewarding and enjoyable are lessened or no longer enjoyable. This is often seen in depression but can also be attributed to a profound loss. Here’s how to cope.
The Importance of Tears:
As caregivers, it is especially important not to suppress our feelings. The caregiving journey can be filled with sadness, frustration, and grief. Shedding tears is a natural and healthy response to those emotions. Tears benefit people in numerous ways, including helping to detoxify the body. Find out more about the importance of tears.
Caregiver Burnout: How to Cope
Caregiving for someone suffering from Alzheimer’s disease is one of the most challenging jobs in the world, and it comes with a risk of what is known as “Caregiver Burnout.” With caregiver burnout, you are in a state of physical, emotional, and mental exhaustion that may also be coupled with a change in your attitude towards your caregiving role, from one of positive, caring, and rewarding to one of feeling negative, unconcerned, and resentful. Here's how to cope.
Best,
Rosemary D Laird, MD, MHSA
Founder and Chief Medical Officer
“Just keep going. No feeling is final."
— Rainer Maria Rilke
