There are no secrets to success. It is the result of preparation, hard work, and learning from failure. - Colin Powell
What I have learned as a mental health family caregiver has come with time and with experience with having a mental illness myself, I am a survivor of depression and anxiety. What I share with other caregivers isn’t an admonition but me sharing what worked for our family and what didn’t as well as the mistakes we made along the way as survivors and as caregivers.
I learned the importance of self-care during this process and it is a very complex act. Many refer to self-care as taking a break and getting rest but self-care is so much more than that. Self-care is empowering ourselves as well, it’s about understanding the part that planning and preparation in our lives plays in reducing the amount of stress and anxiousness we can experience when dealing with life’s difficulties, in our case as caregivers a long term mental health condition our loved ones must adjust to living with.
Below are some of what I have learned during this journey and also resources which helped me. Your family is unique, your loved ones diagnosis is unique to them, other unique characteristics of your journey will make it necessary to modify what I share with you because that is the nature of our lives, we learn to adapt and how important not looking for consistency or for microwave results is to our families successes. Here is what I have learned:
Preparation is our number one tool as Mental Health Family Caregivers. When I talk to new caregivers in mental health the first thing I stress is to learn as much as you can about your loved ones illness/disorder. Once you have more of an understanding of the illness you have more of an idea of what your loved one experiences and the signs of them having negative symptoms of the illness. Every persons experience with their illness is uniquely theirs, so don’t get alarmed if your loved one isn’t displaying the symptoms you read about while researching, they may not have all of the symptoms and a very real possibility there can sometimes be a misdiagnosis in the beginning of the journey; sometimes there is an additional disorder/illness that may be missed in the beginning of the journey to recovery. A loved one who is compliant meaning taking medications, going to therapy appointments, seeing their psychiatrist and psychologist, and putting the coping strategy’s into action are all part of preparation.
Good record keeping is you’re your next tool. As you take this journey with your loved one you will find there are times in the beginning of the recovery process that your loved one may find themselves in crisis very often. As stressful and frightening as this time is it is a very good time to make notes about:
Changes in your loved ones behavior
Psychosis if present
Amount of time between mood changes
Number of days with symptoms
What your loved one says during a negative symptom
If your loved one remembers things they said
Your feelings as the caregiver when your loved one is in crisis
Are you sleeping
Did your appetite change
Mood changes for yourself
It will seem ridiculous in the beginning but you will be doing a service to both you and your loved one by keeping active records. The information you gather during this time will help you to reduce the amount of stress and fear you have during a crisis because you are better informed and have the tools in place as a result. It helps you to build a good support program for your loved one that will help them to relax and have confidence in your ability to help them through a crisis situation when they are afraid and overwhelmed by their negative symptoms. Information you gather can help to give your professional psych team valuable information if the medication isn’t effective or treatment combination isn’t working well. The more you learn about yourself and your loved one during this time can help you to help your family to navigate a very tough road to mental health recovery and living with a mental health illness/disorder.
Coping skills and stress management are so very important because for our loved ones it can reduce the amount of emotional and mental pain they experience during a negative symptom time, and for us it helps to know we can talk ourselves down off the cliff when we are helping our loved one get through a crisis. Seeking family therapy is a good way to talk about and keep an open dialog about the family’s feelings about the journey to mental health recovery with a loved one, it’s also a good way to be taught effective coping skills to get through the rough times as well. There will not always be someone present with your loved one so it’s empowering to learn to “self soothe” themselves if they are in a crisis situation at the onset before they are too far gone. We learn to calm ourselves during what can be very scary and stressful times for us. Stress management can help to keep the household a bit more peaceful as well.
There are other methods of stress or symptom relief like a blanket that helps to calm down, reducing the light in the room, reducing noise, leaving a noisy area, having a a place to retreat to for our loved one, soothing sounds, breathing, meditation, mindfulness, walking, or exercising can all be additional ways to calm down or relieve stress.
A healthy lifestyle is another way to reduce mental health crisis because the way we eat affects the way we feel, the way we sleep affects the way we feel, the way we drink or use drugs affects the way we feel. Sometimes caregivers can resort to sleeping aides to get rest because of all of the stress preventing them from getting a good night’s sleep and it’s important to monitor the usage so that we are not becoming dependent on the medication. Caregivers must be aware of the usage of alcohol to relax too often as a dependency on the alcohol can create new problems. A loved one with an addiction problem faces a greater challenge in mental health recovery, and until the addiction is addressed it will be very difficult to handle the illness/disorder. Sleep is very important during the mental health support and mental health recovery. Restlessness should be discussed with the Primary care physician or professional psych team, as well as not sleeping should be discussed as well.
Documents for our loved ones wishes if they are incapable of speaking for themselves during a crisis, an Advanced Directive for our loved one including the caregiver as the medical power of attorney (a backup if the caregiver is incapacitated), an Advanced Directive for ourselves as caregivers including who will care for our loved one in our absence and what we want to happen for ourselves as well if we are unable to speak for ourselves. Having a discussion with our loved one and our family during a “stable” time is very important. Our loved one can express to the family their wishes in the event they cannot speak for themselves.
Research where to go when there is a crisis that has escalated for your loved one, know where and who to call if your loved one reaches an emergency level of care. Discuss your access to the loved ones professional psych team and primary care physician. Arrange an individual who can care for your children and pets in the event you have to be away extended periods of time and that way you are not scrambling at the last minute.
Create the “bounce back” for yourself once you are coming out of a crisis period for your loved one. How will you regenerate and recharge? How can you assist your love done in getting stronger after a crisis? These are just a few things you can do to create your own crisis plan.
Know what your limits are. Set boundaries early on regarding what is tolerated and what isn’t. There are times when our loved one will have a negative symptom crisis and may say or do insensitive things unintentionally and there will be times when there may be hurtful things said or done letting a loved one know they don’t have “free range” on being disrespectful.