How did it get so late so soon? Its night before its afternoon. December is here before its June. My goodness how the time has flewn. How did it get so late so soon?
-Dr. Seuss
What do you think is the number one question I get when I ask a Family Caregiver about their Self Care? Correct, "Where am I going to get the time for that?" I don't care what the diagnosis is for a loved one "time" is the concern for all Family Caregivers.
I understand how important time is because I am a Family Caregiver and before I learned to manage my day, I lived in discord and disorganization constantly. My day would pass me by and I would wonder where the time went and why I hadn't completed tasks...some that were very important!
We can become so immersed in the care of our loved ones and depending on the level of symptoms they are experiencing we may find ourselves trying to stabilize them or on a trip to the hospital where we spend countless hours waiting...and waiting...and waiting for assistance only to be sent home with a loved one barely stabilized, and more agitated from all of the day’s events.
Simple things like brushing our teeth, combing our hair, and putting on another clean pair of sweats and t-shirt, the caregiver uniform, start to fall by the wayside. Unless we catch a glimpse of ourselves in a mirror or window pane, or a whiff of body odor, we don't realize there hasn't been time for a shower.
Family and friends who don't live through the day with us don't understand why our loved one can't be left alone for just a moment while we run to the grocery store because we are afraid they will self-harm, become so overwhelmed with anxiety from being left alone, fall and hurt themselves or wonder off. No one understands when you say your loved one is afraid to leave the house because of a social anxiety, or fear of falling, fear of catching a communicable disease, or because they are afraid someone will find their needing to open and close the car door 20 times is "weird". Getting the "just leave them with a neighbor while you get out for some time alone", isn’t always an option, especially for those who have Schizophrenia or other mental health conditions with Psychosis as one of the symptoms; making trusting someone other than their loved ones or those familiar to them virtually impossible.
There are multiple reasons a family caregiver may not be able to have a social life outside of the home, and I understand your challenges as I was in the same position during the beginning stages of my sons mental health journey.
Not Taking a Break Presents Dangers to the Caregiver
One of the dangers for Family Caregivers is "Caregiver Burnout". The demands of the caregiver vary according to the diagnosis of the caree or loved one. Some loved ones have multiple diagnoses which can lead the family caregiver down a road of unpredictable days where the loved one may be fully functional and able to take on most of their own care and life obligations, and other days when the loved one cannot do something as simple as get out of bed. Caregivers are most likely a close family member or friend and therefore the level of trust and expectation from the loved one places the caregiver, at times in a position where they are expected to know the answers to why a medication isn't working, or become the sounding board for the loved ones frustration with failed treatment plans or ineffective medications. A loved one can become moody and at times hostile targeting the caregiver who must maintain a level-headed approach keeping in mind the illness is the cause for the loved ones behavior.
A caregiver who spends extended amounts of time in an environment with a loved one who is expressing hostility or is experiencing psychosis can find themselves emotionally, mentally, and physically spent because of the constant need to modify and adjust to the many moods their loved one has. Eventually such stress causes the caregiver to experience health challenges related to stressful lifestyles like, high blood pressure, anxiety, insomnia, and depression; all of which have other illnesses that surface as a result of and the high level of stressors associated with caring for someone with a mental illness. If a caregiver isn't careful they could wind up in the hospital, as I did, thinking they are having a heart attack but are overworked and overstressed suffering from anxiety. Some caregivers have in fact had a stroke and heart attack as a result of too much time caregiving and not enough resting and recharging. If you don't take a break you can expect a break...and not the kind you prefer...it may come with a personalized shuttle to the emergency room via ambulance, and who will care for your loved one then?
What Are The Signs Of Caregiver Burnout?
Family Caregivers tend to believe they are the only ones who can care for a loved one and because of our ability to know what a normal loved one or rather a loved one free from symptoms looks like versus a loved one who's symptomatic, we are pretty confident that we are the best one to care for the loved one. The question is how in tune with your own moods or symptoms are you? Are you finding yourself tired all of the time? Are you feeling anxious or having mood swings? That's called secondary patient because the caregiver starts to take on the symptoms of their loved one. It's easy to forget about our own needs and then become at risk for burnout. Below are some signs you are suffering Caregiver "burnout":
Mood Swings - Becoming angry and feeling resentful of your loved one, possibly striking out with words or being passive aggressive as you care for your loved one. There may be a change in your appetite, eating too much or too little.
Getting Sick Often -You find yourself always battling a cold or you find yourself with cold sores and unable to get rid of a cold easily.
Insomnia - You may find yourself up late at night and unable to go to sleep.
Isolation - You start finding it a challenge to get out and do simple things like make a trip to the grocery store, or to have coffee with a friend.
You're the "Fixer" for everyone - You find yourself always being the person to go to and you don't turn down the opportunity to help someone with a problem. You may find yourself feeling guilty if you are not being the end all be all to others.
You don't have to do this all by your lonesome, you shouldn't feel guilty for needing help with your loved one, and there is only so much you can do alone. The more family members or friends you assemble to help with various chores throughout your caregiver journey the lighter the load will be. You’re taking a break is necessary in order to maintain a level of sanity for yourself as well as keeping your health and overall wellbeing in good condition. You cannot care for your loved one if you are in the hospital yourself.
There is a wide range of actions you can take to ensure you are caring for yourself first. Begin by being honest about your needs. Join a support group in your area or start one, you can even join an online support group. A successful caregiver journey looks different for each individual caregiver and their family. Once you have the structure of your family sorted you are able to cater a plan that not only reduces the stress and anxiety for you all but frees up time for you to have a life outside of family caregiving. In the journey of caregiving you must be pro-active not reactive, that's the only way to success and peace.