Tracy Leyden – For Better, For Worse
In 2013, Tracy had a stroke in her brainstem. She had to relearn everything, including breathing, swallowing, speaking, sleeping, learning to control and use her arms and how to walk. She is the proudest mother of one son and lives in Chicago with her ever-supportive husband.
The word caretaker has taken on a new moniker and meaning. It has been replaced by ‘caregiver’. It seems survivors and caregivers alike prefer the term. I believe it gives a more personal and compassionate description. A caregiver is defined as an unpaid or paid member of a person's social network who helps them with the activities of daily life. Caregiving is most commonly used to address impairments related to age, disability, disease, or disorder. The role of caregiver is one that comes with continuing education credits. The role is constantly evolving. They may need to be a nurse or a spouse or a pro in the tech industry. Caregivers also come in many forms: spouse, parent, child, sibling, partner or stranger. Often we rely on loved ones as a caregiver because of financial constraints. Most survivors have a family member that has become their caregiver. In a tragic instant, a loved one becomes a caregiver. Some survivors though have expressed their decision to not have anyone they love change their role to caregiver in their relationship.
In this article, I am going to focus on the unpaid-familial caregiver. Many survivors expressed feelings of anger, sadness, failure and a loss of dignity and independence. These are all included as steps of grieving. We grieve in our role as a survivor but also grieve for the caregiver. As well, the caregiver grieves for us and themselves. A common theme in my discussions was a feeling of guilt on the side of the survivor. It is because of ‘our’ inabilities that ‘they’ became a caregiver. On the other hand, the caregiver also feels guilt in the fact that they have not been the one suffering and struggling to survive. Surviving a stroke or TBI is a lifetime of change and is a devastating event for all parties. The survivor has become a dependent. A caregiver may have to do everything for us now from (very) personal hygiene to feeding us to full-on nursing duties. Also included in their ‘new normal’ is assuming all responsibilities of the survivor, whether it be cooking, cleaning gutters, or paying the bills. We feel the guilt in burdening our caregiver with the tasks we once shared. Caregivers spoke of having many of the same feelings. They are just as angry and sad.
Also mentioned frequently by caregivers was the feeling of inadequacy on their part. Our caregivers weren’t given training in nursing, pharmacology, psychology or heavy lifting. Although they do change and clean our feeding tubes and tracheostomies. Caregivers moderate and administer our medications. They comfort and encourage and transfer us from bed to chair and back again. I think that is above and beyond adequate. So much of what the survivors expressed in discussions was paralleled in the feelings of the caregivers. Even hearing from those ‘ex’-caregivers they love us unconditionally and really do want us any way they can have us for even just one minute more. As my mother hilariously said ‘my husband didn't fall in love with me because I could eat with a fork!’ - that put it all into perspective. Yet, I bet more than a few of us still hide some inabilities or needs from our caregiver so that we don't burden them further.
I heard from many that they find it difficult to be honest about their new roles in post-stroke/TBI life. This is critical. Both parties have to express their needs, limitations, fears, concerns, roles, and expectations. More important may be to acknowledge that we are all doing our absolute best to survive the stroke or TBI. We all are struggling to regain some control of this situation. Survivors can begin to resent the caregiver for having a life, caregivers may resent us for changing their life. Laying out the new roles and their responsibilities and expectations of each other, such as holding your hand or cleaning my feeding tube, can hopefully avoid resentment. Again, thoughts and experiences both survivor and caregiver share. Both sides expressed there is absolutely not enough training and not enough resources for caregivers. That is slowly changing as Americans are living longer and surviving devastating events. Meaning the ‘caregiving’ field is growing as well.
A community of support is becoming more easily accessible for caregivers as the focus is aimed toward their physical, emotional and mental health. There are many resources on the web and social media. Seek out what works best for you. That may mean going to a local support group meeting to ‘just get out’ or on Facebook ‘in the moment.’ You have heard it said that in order to take care of someone you must take care of you. I am sure you’ve heard in an airplane the ‘rule’ is put YOUR oxygen mask on first before helping others with theirs. There was so much that caregivers expressed about their time as a caregiver now that they are no longer in that position. Commonly felt among them is that they feel guilt or remorse for feeling relief BUT they wouldn't have done it differently; they wouldn't have said no to the role; they learned so much about the one they cared for as well as themselves; and they are immensely grateful for the time they had together. I am realistic about knowing that not all people are able to accept this role. Since my stroke in the brainstem (pons) I have repeatedly told my family, who give me care on various levels, that my ‘job’ as survivor is easier than theirs as my caregivers.
So…... Thank you to all of our caregivers. You see and feel the better and the worst. We lash out to those nearest and dearest to us. We may not know how to express it, but believe me when I say we are grateful for each and every one of you - 24/7. We know this wasn't in anyone's plans, but you have risen to the challenge and taken on the thankless job. We couldn't have survived without you by our sides. You give us strength and courage. We need you. You have our backs. You clap the loudest at our achievements and you cry with and for us in our frustration. Take good care of you so that you can give me care. We will continue to survive and thrive in spite of ourselves because of you. I would like to express my deep gratitude for the candid honesty, experiences, and feelings that were shared with me. Wishing us all health and healing, strength, courage, hope, and faith.
