When Long-Term Caregiving Comes to an End
by Sheryl Karas M.A.
First of all, know that however you feel is okay. While most people expect that you should feel great sadness and loss it is also quite common for a dementia caregiver to have a very different response. Death may bring a sense of relief or even exhilaration that the struggle that both the caregiver and patient have been going through is finally over.
I think of it as how it was the day after the earthquake in Santa Cruz.It seemed like everyone I knew came downtown. We walked round and round, looking at the devastation and greeting each other with an odd sense of excitement. A few days or weeks later, when the enormity of what happened and what it was going to take to recover hit people, many of us felt the grief, anxiety and fear one might expect in such a crisis. Even now, 13 years later, I still jump when a heavy truck goes by and rattles my windows. But, for many of us, that first day was different. It was as if we were looking at the pile of rubble that used to be downtown and were thinking "Oh my God! The worst thing I could imagine happening has happened and I LIVED through it! Woo-hoo!"
Most people feel a mix of feelings that may change day to day. Great sadness and grief at the loss of a long-time companion, the end of a chapter in our lives, the end of a situation that defined who we were and how we organized our lives. Anger at how God could allow someone we loved so much go through such a devastating illness and death. Loss of identity and fear of the future: who am I now that I'm no longer a full-time caregiver and how am I to cope with my life now?
The place caregiving had in your life obviously makes a big difference in this. People who are retired and spent every waking moment with their ailing spouse may find it much harder to regroup than a person who is working at least part-time and raising a family. For that reason it's very important to find support and pick your support people wisely. In Santa Cruz, the Hospice Caring Project offers various bereavement groups for people in different age groups and grieving situations as well as individual counseling and support. Their number is (831) 688-7684.
Take Your Time
Even for people who feel more relief than pain, the years of pent-up pain and frustration as a caregiver has certainly taken a toll. There may be hidden grief that shows up when you least expect it. Symptoms of this might include memory gaps, a feeling of distractability or preoccupation, irritability, low energy, exhaustion, headaches or stomach upset. You may want to sleep excessively or, conversely, become excessively busy, pushing yourself to an extreme at work or on "things I need to catch up on." Other people may find themselves engaging in more reckless or self-destructive activities such as excessive partying or drinking alone in the dark at home. If you are showing any of these symptoms, call a friend, find a therapist, join a support group or talk to your pastor or spiritual director. It will be easier to truly move on and make positive life-enhancing decisions if you can face your pain honestly and move through it.
Remember Your Loved One but Gradually Shift the Focus to the Living
Your friends and family may be reluctant to talk about the person you were caring for because they fear they might increase your pain by bringing it up. Reassure them that sharing memories and stories is important. This person was a big part of your life and now they're not here. There's no need to negate their existence in your heart and mind and speech until he or she naturally shifts into a different place over time.
On the other hand, your caregiving days ARE over. It's time to shift the focus back to living your own life. Again, take your time. Grief can make it difficult to remember what you once cared about. Allow yourself to have time for reflection. You might not know which way to turn for weeks or months on end. But allow that to be alright, talk about your feelings with others, and little by little allow yourself to return to activities that once gave you pleasure. The next path for you to take will become clear over time.
The Final Stage of Caregiving
The final stage of caregiving is NOT what happened just before your patient died — it's what's happening now. Think back on your caregiving experience and remind yourself that you always did the best you could given your family history and the experience and information you had at the time. Be proud of your achievements and forgive yourself for the instances where you fell short of your highest aspirations. We are all human. We all make mistakes, say things we regret, and neglect to do things we wish we had done. That does not negate all the time and effort you put into doing the best you could. If your care receiver knew everything it took to do what you did, and was of clear enough body and mind now here on earth to express it, they would tell you how much they appreciate everything you tried to do on their behalf.
Now that you have gone through this time of your life and survived it, other caregivers may look to you for guidance and support. Many people find it helpful to pass on what they have learned through their caregiving experience to others. Many, if not most, caregivers tell me that if there is anything they could do to help other people from having to go through what they went through to let them know. I rarely take people up on these offers when they have just informed me of the change in their lives. I know that, even if they feel alright when they call, that they need time to let the reality of what they have gone through sink in and time to regroup and decide what is most important to do next.
However, if as time goes by you still feel strongly that you'd like to use your experience to help other people, rest assured that there is a crying need for your services. We need mentors who could lead caregiving friendship and information-sharing circles. We need people to write letters to Congress or work on committees to change the health care system to be more supportive of the real circumstances of being a family caregiver. We need people to tell their stories, call Oprah, and make caregiving issues visible and hard to ignore. People who are actively caregiving and professionals in the field dealing with budget cuts and increased demand for services are often too busy to add caregiver activism to their plates. Inspired ex-caregivers are the ones who are leading the way.
Caregiving Articles
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles
© Copyright 2007 Sheryl Karas & Paul Hood