I don’t know about you, but if I hear one more person or organization say to me, “make sure you take care of yourself”, “hang in there, you got this”, “pick yourself up and keep going”, “take time for yourself”, “accept help”, “keep your doctor appointments“, I’m truly going to scream at the top of my lungs!
The reality is that those who are giving out such advice are really saying, “we don’t know what the hell to do to help you” and “you, caregiver, are going to just have to help yourself.” This is truth in that there are no organizations or people who are going to come by your side and help you through this. This is a long grueling journey that isn’t a one time event, like a death, where they send you a condolence card, a meal or some flowers. This is a long race, that you caregiver, many times, will need to run as a solo marathoner to the finish line. I am coming to this understanding as I interface with local, state and national level caregiving organizations, whose mission is supposed to be supporting the caregiver. The truth is that many would like your “traumatic” story to advance their organization in order to create more opportunities for their own funding, strength and sustainability. What is needed, until change comes in our society around caregiving, is a documented framework for caregivers that considers the reality of this role.
As I continue to find my way in this caregiver role, I want to share them with you:
A. Redefine Your Tribe: We have all been there where we have lost friends and family members due to becoming a caregiver. We also know that the current dementia or caregiving organizations are not going to fund your caregiving role, giving you ongoing respite, or be there for you when your loved one is in crisis. We also know the Alzheimer’s Association is not going to come over and help you clean your house, organize your loved ones medical appointments, or send you out for a massage.
However, I have found a new tribe of support and its non-traditional, in a sense. I have become connected to the members at my gym and specifically my trainer. It happened unusually and I was not seeking it. But it developed over time where a community of support developed around me, for me, as a caregiver. In fact, when my mom was in the hospital recently, they were the only ones to visit her and me. They brought me food, and stayed for hours to make sure we were ok. Not one call, text, nor message was received by those I expected. It was the development of a community by my trainer that has become my support as a caregiver. I know not everyone can go to a gym due to the demands of caregiving, but is there a private business within your community that have or can become your support? We have limited the opportunity of support through our expectations of organizations who are “supposed” to be there for us. Now is the time to really think outside of the box when it comes to caregiver support.
B. Take Out the Trash: It is truly time to dump the toxic people, dysfunctional organizations and useless things that are just not helping you through the caregiving journey. Re-access all people, support groups, organizations, that drain you, are one-sided, and detrimental to your health and well-being. You are barely hanging in there yourself, with caring for your loved one. The last thing you need is to go onto an online support group and see people fighting, threatening their lives or attacking you. This has been my experience and I now avoid all on-line toxic negative social media groups. I also took time to assess all the texts and messages coming my way and saw that maybe 3 were inquiries of concern about me. The rest were an ask of me, a question, a “can you volunteer here”, “be apart of this”, “join this”, etc. If a relationship is not equal in value, why are you apart of it? In addition, if you are a caregiver, why are you allowing for an draining relationships at all? Now is the time to empty out all unnecessary tasks and toxic relationships. That, my caregiver friend, is a key survival technique.
C. Caregiver Safe Space: Often I have felt that my home is a prison as I try and find places to hide or escape the caregiver role. I have a full time job during the day and another one that picks up right after or continues simultaneously. It is not until I fall asleep (if you can do that), that I break from anything. I am sure that as soon as you wake up and allow your feet to hit the ground, you are working. Your home can be seen as a prison cell blocking your freedom to peace and rest. It is important to really take a look at your whole home situation with your loved one. How do they sleep, when are they sleeping or quiet? Where is their bedroom, and what are their patterns of behavior? My mom is right across the hallway from me and is an early riser. She will listen for the very moment I step out of bed. She used to be at my doorway as soon as the alarm went off. So, I created a safe space for myself to give me a place of calm before caregiving. There is a nook in my bedroom that I have created where I can get up, diffuse my essential oils, read my bible, mediate, drink my coffee and breathe. It is the first place I go to now after I awake, before I step out my bedroom door to begin caregiving. By giving yourself this transition, you are prioritizing your own wellbeing, calming your stress hormones and approaching caregiving with a different mindset. By incorporating this into my life, I have felt less resentful towards my mother and more balanced. It is my time, whether its 5 minutes or an hour, its mine that can not be stolen by caregiving.
D. Alternative Healthcare: “Make sure you keep doctor appointments.” I think this advice frustrates me the most. If I see an organization or webpage that links to this recommendation, I delete them. Really, like we don’t want to make our doctor appointments. Caregivers are at the highest risk for every chronic disease and mental health issue. (I wonder why?)
When I look at the number of doctor appointments I need to take my mother, from primary care, optometrist, orthopedic, pulmonologist, dentist, etc, the appointments alone could range from 6-12 in a month. Then there’s the state social worker, the state nurse, the state everything because she is on a Medicaid waiver program. Oh and lets not forget the number of emergency rooms visits, urgent care visits and hospitalizations. Therefore, my approach is steeped in health and wellness, holistic lifestyle changes to prevent illness. But, my other solution, when I do fall ill, is teledoc or telemedicine. Many insurance companies are including this as an option, as well as state-funded programs, and private businesses. Many are free from copays and scheduling difficulties and take less than five minutes. You literally sit in your home and pick up a phone to speak with a doctors. It takes less than 5 minutes to be diagnosed and prescribed medications, if needed. I have used teledoc so many times for my own illnesses and it has saved me so much time and travel. Look for an alternative, cheaper and realistic way to address your health. It is a priority, but the reality is the time and access as a caregiver. Get creative and be resourceful! You deserve it!
I have many more tools and ideas but will continue with future blog posts. I hope some of these are helpful and please feel free to share yours as we are a resilient caregiver community.
“As you discover what strength you can draw from your community in this world, look outward and well as inward. Build bridges instead of walls.”
– S. Sotomayor