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Caregiver Grief ….a different kind of loss


An "Ambiguous" Grief

According to the Mayo Clinic, “Grief is the natural reaction to loss. Grief is both a universal and a personal experience. Individual experiences of grief vary and are influenced by the nature of the loss.”


I think we often associate grief with death…we grieve for those who leave us physically and are no longer here. However, grief is experienced in many forms. If it truly is our response to loss, think of how many experiences we may be grieving since the start of this pandemic – socialization with friends, holiday gatherings with family, date nights with our loved ones, working outside of our home, seeing the enjoyment on our non-masked children’s faces when they’re participating in extracurricular activities, and so on.


In the Aphasia world, I feel it is quite common for caregivers to experience griefa lot of it. A wife of one of my patients has said that she feels she has lost her husband. “He is physically here, but I can no longer experience life the way I once did with him.” She is grieving for what they once had. They are no longer able to discuss finances, emotions, or challenges related to raising their 16-year-old daughter. That connection has been lost.


The mother of one of my younger patients with Aphasia grieves for what she had hoped her son would have as part of his future – finding a compatible match, getting married and having children, and living that planned life she dreamed of for her youngest son. Although this all may be possible, perhaps the grief stems from the unknown and the communication barriers that exist, making this dream seemingly far-reaching.


One of my patients’ daughters grieves for her father who was once there to provide advice on car issues, financial questions, and the ins and outs of home ownership. He is no longer able to provide the same level of emotional or physical support due to his physical and communicative challenges.


There is actually a word for this type of loss that is often experienced by our caregivers. The term has been coined “ambiguous loss,” which is any loss that’s sort of unclear and lacks a resolution. It can be physical or psychological. Dr. Pauline Boss, a pioneer in interdisciplinary study of family stress, has written several novels on this topic. “These are all things we were attached to and fond of, and they’re gone right now, so the loss is ambiguous. It’s not a death, but it’s a major, major loss,” says Boss. “What we used to have has been taken away from us.”



Rather than focusing on what we have lost, focus on what remains

As a caregiver, this ambiguous loss is likely experienced in many ways. This grief is a much more tangible loss and requires a sense of creativity to manage and cope with. I also think that cognitively recognizing that one is feeling this way is much different from actually accepting this concept and emotionally incorporating it into our every day lives. If we spend so much time focusing on the amount of things we’ve lost…those things that defined our lives and made us who we are (i.e. social connections, emotional support from our loved one, traveling, financial support, etc.)...it can be extremely overwhelming. Losing that ability to continue the passions and experiences that have defined us as a couple or as family is painful. Perhaps there are ways to focus on what remains, and rebuild a new connection with a different purpose, for otherwise our minds will turn to those things we used to spend our time doing and those things we have lost.


Our role as Speech Language Pathologists – How can we help?


As a speech language pathologist, there are days, and even weeks, where I feel more like a counselor. I think this is crucial to the success of our patients surviving with Aphasia. If we are not helping to also strengthen the support network around them, then our work is useless and a waste of time.


So what are some suggestions we can provide to our caregivers in an attempt to support those loved ones who are so strongly supporting our patients? Here are some of the ones that are at the top of my list of suggestions:


  • Do one thing each day that is for YOU. Just you. Make a commitment to focus on yourself one time a day, as this will also help to optimize your capabilities as a caretaker, and will also honor the fact that you, too, deserve to be taken care of.

  • Identify those remaining important relationships in your life and focus on maintaining and strengthening those. Friends and relationships with relatives will undoubtedly change – find those connections you truly value and work on keeping those strong. Consider creating a new network and joining a support group.

  • Accept help when it is offered. This may feel like a tough one, because you have your routine, you know what works and what doesn’t, and even though someone is merely trying to help, you feel they may cause one of those many balls you are juggling to drop. However, it’s important to lean on others for support once in awhile, even if it is something as simple as having them go grocery shopping for you or picking up your clothes at the dry cleaners. One less errand to complete, one more chunk of time you can focus on you.

  • Accept that your life has changed, it is different now, and will be. Once this new life is accepted, it will likely be easier to embrace the changes and find ways to rebuild a new life.

  • Discover activities that fulfill you and your new life, both new and old. Think about it…these activities are what we seek out because they are what helps to define who we are. We don’t always get to choose relationships with people or our family members, or our careers or even where we live, but those hobbies of ours are what define our enjoyments in life, are a part of who we really want to be and how we want to live our lives.

  • Finally, consider expecting a little less out of yourself than you once did. You have A LOT on your plate. You may have once been that person who always had your house clean, closets organized, you never had an issue remembering appointments, and you always had a homemade meal on the table at dinner time. This is likely no longer going to be the case…and that is OK. Let your house be cluttered for a few days. If you forgot an appointment, it’s not surprising given how many things are on your mind and how many different things you are responsible for remembering in one day. Apologize to the staff and reschedule. No big deal.


Perhaps it is time to let go of who you were and what situation was possible before, and embrace the new hand you’ve been dealt and discover what is now possible.



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