For most caregivers, the path eventually ends with the death of your loved one. That in itself is a tough reality to contend with, despite the fact that it is, at least with Alzheimer's, an expected outcome. And, I've come to realize from personal experience that this loss can bring a level of pain beyond normal grief -- you are experiencing not only the loss of your loved one's physical presence, sometimes after a very prolonged and exhausting decline, but you are also undergoing the "death" of your caregiving role, so that while you are in the midst of grief you also are somehow abruptly without a purpose. It can leave a large hole in the center of your life. The intensity and volatility of your emotions, including sadness, relief, loss, grief, burnout, exhaustion and guilt -- can form a corrosive and toxic mix which would be difficult for anyone to overcome, much less one whose own inner resources may have been so totally depleted that they haven't the ability to cope with this final blow to the psyche.
As I look around, I realize that there are literally millions of others either in this same situation, or soon to be facing it. So what is a person to do to shift toward healing & wholeness? For those who find themselves in this chaotic, confusing, bereft place -- where to turn for help? If you have sacrificed yourself on the altar of daughterly devotion or matrimonial martyrdom and seen your loved one through to the end, how do you rebuild your life and refocus your purpose to find peace, health, loving relationships, balance and joy again?
You can turn to grief support groups, counseling, close friends, spiritual strength through faith, but, it seems to me that none of these are filling this need in full, when the pain goes so deep that you think there's no end. I'm dealing with this from a daughter's perspective, but I know that it also applies, perhaps even more deeply, to a spouse-caregiver, since they experience the loss of their life partner of sometimes decades-long marriage, only to find themselves alone and lost.
I think, at the root of this issue, we, as a society, do not honor the gift of love provided by caregivers , many of whom make incredible sacrifices, personally & professionally, in order to be there for the loved one -- sometimes to the point of not having a life of their own at all (I'm thinking of the sandwich generation caught between caring for elderly parents and children at the same time). Somehow, the context of caregiving needs to change so that caregivers have tacit "permission" and tangible support to perform healthy, necessary self care and also the opportunity to continue to have their own identity and pursuits in life rather than losing that individual creative spark, enthusiasm for living, and sense of purpose by choosing the loving act of caring. One should not have to make the impossible choice to abandon a loved one or go down in flames with them.
I don't have the answers here. I'm not sure anyone does, but I'm sure going to keep asking the questions! Awareness must be brought to these challenging problems as more caregivers are thrust into the role and have to cope -- sink or swim. Please give your own feedback and perspective on this and share whatever insights you have that may be helpful to others on this journey.
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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