"Let me die, please just let me die." Hearing these pleas can put a burden on one's heart, especially if a loved one is on the other end. When you are attempting to provide emotional support to someone with depression in addition to an end of life disease and early onset dementia, they fail to mention that sometimes you play the devil's advocate. Ignoring wolf cries while a loved one begs for relief seems a callous way to enforce medical treatment but sometimes necessary.
Witnessing your loved one ask repetitive questions and experiencing flashes of missing information, including who you are, sometimes makes it difficult to push through your day. The feelings that this type of care entails can become overwhelming and hard to navigate your own mental health issues as well. It can be disheartening to be the disciplinarian and the encourager at the same time. You are on a tightrope and one wrong move can send you toppling in the wrong direction. You undergo them all at different times in most cases and sometimes all at once: anger, frustration, helplessness, guilt, anxiety, loneliness.
Keep in mind that not every situation is the same. Just as multiple illnesses and circumstances exist, there are different responses that are required for each patient. A patient with dementia has different needs than one who needs physical support only. Finding out more information about your patient’s specific needs can help ease some of the burdens of their care because you understand more of what to expect and better planning can be put into place to help with those issues. While educating yourself on your patient, ensure that you are taking out time to evaluate yourself as well. Caregivers are not only susceptible to psychological health issues but physical health issues as well. “…poor health of caregivers has been identified as a risk factor for difficulties in managing the caregiving responsibilities, with potentially negative effects on the care recipient and for the institutionalization of the care recipient…between 18% and 35% of informal caregivers perceive their health as fair or poor and caregivers have frequently been referred to as the ‘‘hidden patients” (Pinquart & Sorensen, 2007).”
Finding or creating a support system is essential to your own well-being. This system does not always need to involve others. It could be as simple as taking fifteen minutes out of your day to do something you enjoy: read a book, go outside and just breathe, dance in the kitchen in your pajamas, whatever makes you happy. This small break can be the peace you need to help you get to the next day and help reset your mind to be able to offer a stronger support system to your charge. If connecting with others works better for you, there are multiple support groups online and off that can help to provide similar perspectives and mutual understanding as going through parallel situations. Caring.com, Family Caregiver Alliance, and locally, the Houston Health and Human Services Department offers listings of groups that pertain to specific caregiving. Sometimes it also helps to vent your concerns or anxiety to others even if they cannot relate. Some great additional resources are available online from Medicare.gov, AARP, and the National Alliance for Caregiving.
While every situation is different, it can become difficult to remember the answer to “Why Me?” But the look of love they gaze upon you in the right moments or the shared laughs over a funny sitcom is worth the price and beautiful reminders of why you chose this undertake this role. At the end of the day, these are the memories that matter the most.
References
Pinquart, M., & Sorensen, S. (2007). Correlates of Physical Health of Informal Caregivers: A Meta-Analysis. Journal of Gerontology, 62B(2), 126-137.
