So many aspects of being a medically complex caregiver are incredibly difficult and isolating. It is completely normal to have strong, conflicting emotions that others do not understand. On top of standard human responsibilities and stress, caregivers, such as myself, are completely mentally, emotionally, and physically spent while feeling they are not doing enough. Going or doing anything is much more challenging, there are more moving parts. Logistics alone can be overwhelming. Do not even get started on the maze of medical services and support, community services, financials, and navigating the everyday world. (But hey, that's why this site is here- to start making that part easier). I hope this place can be a small spot in the world where you have knowledgeable, compassionate comfort that simplifies your caregiving efforts, eases your burdens, and helps you feel seen.
It is natural as a caregiver to struggle with losing your sense of self and having to find your new normal. Our situation is far different and is not just an easy matter of self-care/taking time for yourself. You want that, but there is more at play. There are good and bad times, but our society has a habit of not sitting with or tolerating any feelings that are not shiny, happy, pleasant, or fun. If we push down those parts of our experience or are not allowed to express them, it can be impossible to process the feelings or feel seen in your life and relationships.
Engaging with Others
Everything you imagined or expected of your life is forever altered by a role you did not expect. You may have had to rearrange your life to meet the needs of being a medically complex caregiver (working more, changing jobs, quitting your job, family planning, lifestyle, socialization, community participation, etc.) Any personal time may be dedicated to important but exhausting tasks. We experience grief over the life we have lost and the expectations we had for ourselves. This can even include our own distress on not being able to care, work, show up, and/or function in the way we are accustomed to or have always strived.
Even explaining your everyday life can be exhausting, feel awkward, lead to insecurity or disconnect from others. Sometimes, you can sense people not knowing what to say or tired of hearing about emotionally taxing experiences. Some just do not get it and underplay your experience or level of distress. Many people may retreat over time. Some want to "make you feel better" by finding every silver lining or "at least" scenario. This can be enraging and feel unseen. Your experience and pain is real, just as much as your love. Family or friends may react in ways we do not expect or support us in the way we need.
You may want to talk about things that you enjoyed prior to your caretaking duties but find difficulty having any time pursuing those interests outside of your personal and professional responsibilities. You may feel like you have no life outside of surviving and caring for others. Surviving may seem like a far-off goal compared to whatever stage you currently are in. When you do get away to spend time with others, you may be too emotionally or physically exhausted to participate in engaging with others or have anything outside of your caregiving/life duties to share. This is a big struggle for me. Or, I have one thing to talk about aside from work/caregiving.
It can be challenging to feel like yourself, enjoy old pleasures, and survive the day to day. Take it moment by moment. When it is all overwhelming, take a breath and just focus on making it one more second. Keep repeating until you can extend the time.
You are doing a great job and are taking on more than most people. You may feel like you are failing, but you are not. You are in a situation that requires immense resources on all fronts. You care and are trying. If you care about not doing enough or being good enough, I promise you are beyond "good enough". Your loved ones are lucky to have you, and your poor is better than others' best.
Meaningful MCC Advice:
When I was overwhelmed and trying to figure out how to navigate this life and supporting my child, I received some helpful advice from another caregiver who is high achieving, perfectionistic, and loving like me. She reached the point where she had to accept that doing all the therapies and appointments may not be the best answer for her (or your) family. Yes, go to appointments, but doing "more" will not necessarily be better for you or your family.
If doing multiple days a week of various therapies, doctors' appointments, etc. is stressing out your family and leaving you exhausted, then it is not serving anyone. Your loved one will progress better with a happier, less stressful environment. You deserve rest, and you matter. Sometimes focusing on one therapy or fewer ones for a period can produce greater long-term gains and maintain motivation.
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