“I don't want to live in the kind of world where we don't look out for each other. Not just the people that are close to us, but anybody who needs a helping hand. I cant change the way anybody else thinks, or what they choose to do, but I can do my bit.” ― Charles de Lint
May is the month for Mental Health Awareness and a good time to discuss the mental health of the caregivers who support and care for loved ones with Mental Health Disorders. When I talk to people, whether online, or in person, about the risks of depression in mental health caregivers there is always shock and disbelief about how demanding caring for someone with a mental health disorder is. I had one person tell me, “it’s easy, you just don’t put up with their crap and you kick them out!” There are times when people who have never had to care for someone else sincerely are unaware of what physical, emotional, mental and spiritual demands are placed on someone who cares for a person battling a mental health disorder, and the dangers of the caregiver themselves becoming secondary patients.
There’s not always a quick fix solution. There’s not always a way to just ignore behavior. There is not always a way to feel differently about being verbally attacked and sometimes physically attacked. How do you call for help from the authorities about someone who you love and who has become a danger to themselves and to you? What if the authorities who arrive are not capable or have training in de escalating a crisis situation where an individual experiencing negative symptoms of a mental illness is out of control? What if our loved one gets hurt in the process? Every day around the world there are caregivers suffering through abuse or leaving their house until "things calm down" because they are afraid those they call for help may harm their loved one attempting to get them to calm down.
There isn’t always an easy way to calm the guilt of having to have a loved one placed in the hospital when they are having a rough time with negative symptoms, like paranoia and psychosis, in other words seeing or hearing voices or thinking the caregiver is trying to poison or hurt them.
Somewhere today there is a caregiver trying to recover from having their name dragged through the mud while a loved one is in a negative symptom period. I as well as caregivers I have helped know what it’s like to be helping a loved one and to have to enforce tough love only to be accused of taking advantage of or worse even trying to control them.
Some examples of what a caregiver may do while caring for a loved one is:
Ensuring loved one makes all professional Psych appointments (Seeing a Psychiatrist, Psychologist, Therapist, Counselor or Specialist)
Ensuring a loved one makes all medical appointments (Diabetes, Hypertension, Cancer, HIV and heart disease sometimes accompany mental health disorders amongst a host of other long term illnesses)
Adjusting to moods or violent outbursts if a loved one is not responding well to treatment
Riding the emotional roller coaster with a loved one who may be still on the road to finding the right treatment program that alleviates their suffering or at lease reduces it.
Helping a loved one manage their finances which could mean assisting them with the management of their bank account(sometimes a caregiver will need to resolve banking issues like excessive overdrafts, loss of bank card, unauthorized transactions disputes etc.)
A loved one can find themselves in trouble and arrested, caregivers may find themselves bailing them out of jail or hiring an attorney to go to court with them. Experiencing the shame and guilt that comes with going through the process
of getting legal troubles sorted for our loved one can be something we choose to keep to ourselves and not discuss openly. It’s not a good idea to internalize what we feel, it's also not a good idea to keep secrets. If someone else doesn't know what's going on we caregivers can place ourselves in unsafe circumstances in the name of caring for our loved one and keeping them out of trouble. Entrusting a trusted family member or friend is a good idea, having a therapist is even better. Having someone to talk to about what we experience or feel is good. Internalizing what we feel isn’t.
A loved one may not meet their obligations with paying their monthly bills like rent, utilities, and transportation costs in addition to groceries and a caregiver may assist with management or attempt to. Many times loved ones aware of their struggle with managing their finances can enlist the help of the caregiver while they are stable, understanding they need assistance, but can later during times of negative symptoms forget or fail to be rational about their finances; choosing to become aggressive if the caregiver doesn't give into to their demands. Sometimes a caregiver is placed in the position of turning a loved ones requests down for giving them money they have turned over to the caregiver to hold for them in order to pay their rent or other housing obligations.
There is nothing more stressful than to be caught in the middle of making a decision to give an adult their own money they worked for or to hide and refuse to answer the phone calls of constant pleas to turn the money over to them when their rent needs to be paid, and they are manic looking to party or shop with the allocated monies. The caregiver knows if they give in the loved one will not have a place to live, and if they don’t give in the loved one can accuse them of controlling or worse yet stealing their money from them. Many caregivers have had police called into their home and accused of stealing or withholding money from them.
Back in my Case Management days for a non profit assisting developmentally disabled adults with mental health disorders I encountered two clients who reported to me they were being "robbed" of their money and having money withheld from their checks and placed in the caregivers bank account. The first instance I panicked and reported it to my superiors. I was asked to speak to the caregiver while the loved one was away and inquire as to the money being taken. After speaking to the caregiving and finding out the loved one was using the money to buy alcohol and drugs for themselves and friends and not able to meet their obligations for rent, bus fare, and food I understood why. The caregiver accustomed to being asked about the money had receipts, bills, and bank records proving there was negligence on the part of the loved one and a lack of self control in their management of finances.
The second time I had another loved one report having their money spent and not given to them by their caregiver the caregiver was paying the loved ones bills for them out of a direct deposit account. She spoke of staying up late on the days when the loved one got paid and immediately removing the money from the account to another account where check were drawn from for rent and utilities and car insurance. Being a caregiver myself now and encountering other caregivers who support a loved one with a mental health disorder, I understand getting a loved one to commit to giving access to their bank account, even willing to put money into an account or money easily being handed over for the caregiver to help a loved one mange for that matter is a huge rarity. Needless to say lots of stress and anxiety goes into caring for an adult with a mental health diagnosis and who is uncooperative even when it's in their best interest.
It shouldn't come as a surprise that a caregiver without the proper support or resources may fall into a depressed state and fell hopeless over their circumstances.
Those are just a few scenarios a caregiver endures while caring for a loved one, it’s important for the caregiver to keep an eye on their own emotional and mental bank accounts. Trying to help and then being accused of causing pain or problems can cause us to become conflicted and confused about what our role should be in the support of our loved ones. Eventually we give in to keep the peace and can sometimes wind up cleaning up the mess over and over again, until we realize tough love saves us and our loved ones so much anguish. Sometimes in the end we wind up in a position of making a decision of helping or allowing our loved one to suffer the consequences of their decision(s).
I share these scenarios to help other mental health caregivers to know what they are going through is not just happening in their home, others are experiencing them too. I hope to expose those outside of the mental health cargiving community a peek into the trials and tribulations mental health family caregivers go through as well. Depression is a real issue plaguing many caregivers unaware they are suffering from it.
How Do I Know If I’m Depressed?
Everyone has their own struggles and what causes one person to suffer may not affect another, what is a good factor is to remember what you felt like before you became a caregiver or before you began to experience more stress in your life.
According to PsychCentral.com, “Depression symptoms take many forms, and no two people's experiences are exactly alike. A person who's depressed may not seem sad to others. They may instead complain about how they just "can't get moving," or are feeling completely unmotivated to do just about anything. Even simple things -- like getting dressed in the morning or eating at mealtime -- become large obstacles in daily life. People around them, such as their friends and family, notice the change too. Often they want to help, but just don't know how. According to the National Institute of Mental Health, depression can often start off as higher levels of anxiety in children. But today, the causes of depression still remain largely unknown.
Clinical depression is different from normal sadness -- like when you lose a loved one -- as it envelops a person in their day-to-day living. It doesn't stop after just a day or two -- it will continue on for weeks on end, interfering with the person's work or school, their relationships with others, and their ability to enjoy life and just have fun. Some people feel like a huge hole of emptiness inside when experiencing the hopelessness associated with this condition.”- By John M. Grohol, Psy.D. (See: http://psychcentral.com/disorders/depression/)
If you think you may be depressed the first step is to talk to your primary care physician and let them know your concerns. They will be able to refer you to a therapist or professional psych person to help you to learn new ways to cope with your depression and with your new life as a caregiver.
As caregivers it’s important we don’t forget about ourselves and that we take the necessary steps to be sure we are healthy. Don’t get so busy taking care of others that you neglect the most important person in your life…yourself.
How Do I Know If I'm Experiencing Signs of Caregiver Burnout?
I discovered I had caregiver burnout one day sitting at my desk at work. To be honest I wouldn't know until way later the true origin of my anxiety attack which sent me to the hospital thinking I was having a heart attack. After an overnight stay and series of standard tests I was released and told to see my primary care physician as soon as possible. I was given a diagnosis for depression and anxiety later as well as medication.
Later I ran into other caregivers who'd experienced the same things and found it was pretty much a part of the job process of supporting a loved one with a mental health diagnosis and who was struggling. I later ran across an article that gave an actual name to the experience, "Caregiver Burnout". According to Caring.com, "...caregiver burnout, (is) a syndrome of mental, emotional, and physical depletion..." Finding out I was not alone and that there were ways to combat this "burnout" empowered me. In the link there you can take the questionnaire and see where you stand as far as burn out and get an idea if you may be in danger of burnout.
Get help if you think you may be depressed and suffering from burn out. We cannot pour into others from an empty pitcher. When there is nothing left we are in danger of having our health fail on us or of something far worse. Do an inventory of where you are today. Are you in danger? What are you going to do about it? Start taking care of you today.