• La Shawn Splane-Wilburn, Family Caregiver

Challenges In Mental Health Caregiving

We were all born with a certain degree of power. The key to success is discovering this innate power and using it daily to deal with whatever challenges come our way. -Les Brown

At some point in all of our lives we will know someone who has a mental health crisis if not ourselves. Studies show 1 in 4 people have a mental health disorder. Not everyone who has a mental health crisis will require full time caregiving but for those who do it’s family and close friends who most times stand in the gap for them. A mental health crisis can be anything from depression to dementia and it can be anything from sudden onset to progressive.

For most people helping a family member or friend who’s having or has had a mental health challenge is just part of what you do when you love someone and want them to be okay. Most people are suddenly thrust into the role of mental health family caregiver without any warning or formal training. Becoming responsible for the well-being of a loved one who may or may not be a harm to themselves at any given time brings with it the added stress of being both friend and foe. There are 65 million family caregivers world wide and every day there are new caregivers joining the ranks.

Being a mental health family caregiver eases the worry of the family because they know the loved one is being cared for by those who love and will protect their loved one, watching a loved one make progress and find their confidence again is very rewarding, however there is also the side for mental health family caregiver that doesn’t get talked about very often.

Ask a mental health family caregiver what is the most difficult part of their journey and you will get multiple answers not just because of the different diagnosis’ but because mental illness is as unique as the individual, and the reaction to the illness by the individual and their families/caregivers are also covered by their spiritual beliefs, economic ability, and culture.

There is a certain level of resilience that caregivers possess and if it wasn’t there to begin with it is developed along this journey. Days are unpredictable, you are either treated like the ally or like the enemy and both can happen in the same moment. My advice to mental health family caregivers is always “don’t take it personal, it’s the disorder and not your loved one…” However when you are doing everything to keep your loved one from self destructing and being accused of being the one destroying them that is a very hard “mindset” to drop into.

So many mental health family caregivers are also coping with other illnesses their loved ones have also been diagnosed for like cancer, diabetes, Hodgkin’s lymphoma, Alzheimer’s and a host of other long term/terminal illnesses which means they may or may not have physical chores for their loved ones as well. Many mental health family caregivers must lift loved ones who are unable to walk or feed loved ones who are unable to feed themselves. Some mental health family caregivers have food thrown at them, furniture thrown at them, or their loved ones do not remember who they are and fight them when they arrive to take care of them. Some caregivers have actually been accused of abuse by a loved one who was experiencing psychosis.

On top of all of the challenges mental health family caregivers face there are also the chances we can be injured severely by a loved one. There was a story of one mental health caregiver who arrived at her daughters home to take her to an appointment at the public health department where she would have her blood drawn to ensure she was taking her medication. At her arrival she said she noticed her daughter wasn’t waiting outside where she would normally meet her for pick up. The mother used her spare key to enter the home of her daughter who unbeknownst to her was having a psychotic episode and thought her mother was an entruder and attacked her causing great physical harm to her back. The mental health family caregiver wound up in the hospital and eventually having back surgery for crushed disks in her back from being hit with a dining room chair.

There are other instances of mental health family caregivers who go to assist loved ones with Dementia out of the bed and the loved one panics and a caregiver, in an attempt to prevent the loved one from falling suffers extensive back injury themselves. These are the parts of caregiving no one talks about.

If a mental health family caregiver isn’t careful sometimes they can overlook the signs that something could be wrong, and many times because they are the caregiver and the loved one trusts them it’s easy to forget to consider safety especially if a loved one has bouts of psychosis and paranoia. A mental health family caregiver who doesn’t live with a loved one may miss the subtleties that would alert them to a loved one no longer being compliant or under medicated.

How Do You Prepare For Being A Mental Health Family Caregiver?

I get this question a lot especially when I tell people about my organization and what I do and my answer is always “…you don’t normally. Normally you are just thrust into the role without warning and without training just like any other long term illness…”

We are not given a “How To” on supporting a family member or friend on life crisis in high school. It’s a life skills class teaching the basic principles of getting a job, finances, health, and home management, there’s no formal training for how to help a loved one who is battling a long term illness or how to cope ourselves if we are diagnosed with a long term illness. No one looks at their lives and decides, “Hey I think it would be a great idea to know who to ask for help if I get suicidal, experience psychosis, or suddenly have an extreme fear of leaving my house.

Having a mental health crisis is not something we can even talk about openly now in an effort to educate people on the signs or how to help someone who may be experiencing a mental health crisis because of the stigmas attached to a mental health diagnosis. When we or someone we love experience a mental health crisis it is a learn on the fly sort of experience. You are catapulted into an battlefield and you are both your loved ones ally and their enemy all at once. There is no manual that addresses all of the emergencies or crisis you will experience because each experience is unique, there is only but a general assembly review and everything else must be learned on the job…while functioning on limited sleep and extreme stress.

Many mental health family caregivers forget this part of the journey, that we will not know it all, and even if we know our loved one and have been with them the majority of their lives, this “thing” switches up the game in the most traumatic way. You may watch a loved one go from a loving patient and kind individual to someone with bouts of rage and severe depression, and there is no time for grieving what was or fully wrapping your mind around a life that is forever changed, you must act now and process later; therein lies the trap.

Coming To Terms With Being A Mental Health Family Caregiver

Accepting our role as a mental health family caregiver is difficult, with it comes resentment if we are a spouse who dreamed of a lovely life with ahead and then have all of that turned upside down with a mental health diagnosis and a severe mental health crisis. A parent who has to surrender their hopes and dreams of what their child would become and accept they are changed by a mental illness which is wrecking havoc on their loved one and creating a wedge between parent and child as they fight to win a battle with their child over their own mind which is trying to destroy them. An adult child who was finally getting their children out of the house and looking forward to traveling with their spouse only to learn they would now assume the full time responsibility for a parent who has been diagnosed with Alzheimer's and is experiencing dementia.

Although those scenarios are very common there are others out there as well as unique as the families mental illness touches. What is a constant however is the families will never be the same again, and must conform to their new life in order to successfully life with a loved one who has a mental health disorder, and for their loved one to learn to accept their mental health disorder. The sooner a family embraces their new life the sooner things get less complicated, they won’t be perfect but a family can focus on the treatment and leave the anger and bitterness or blaming on the sidelines.

It seems impossible to both learn the new skills required to live with a mental health diagnosis and for the family to learn to support their loved one with a mental health diagnosis, but it happens by being deliberate. It happens by putting down the wishes and desires for what could have been for what is. It takes daily reminders. Our family it was daily prayer and daily repeating a mantra, “…we will be okay, just keep on marching down the road and hold onto each other. ..” My husband would say this often especially during the time of my own diagnosis with depression and anxiety. It’s what helped our family to accept being imperfect, to accept hurting emotionally, to accept relapse and embrace the lessons learned or the clarification of our roles in our loved ones recovery process and mental health management process.

What Are Some Tips To Help The Transition?

For every family the journey will be different. A family has to learn what their loved ones needs are after getting the diagnosis, and how willing are they to do ALL that is necessary to recover. Knowing up front some of the pitfall or things that may come up helps to soften the blow but above all else a family must become fluid. The sooner a family embraces they have no real control over the illness or disorder only over how they and their loved one react to it the sooner they level out or stabilize. Here are some things to consider:

  1. How Emotionally Demanding Being A Family Caregiver Is – You will go from being totally afraid to indifference, to anger, to fear, to acceptance, to defeated, to surrender, to victory and then repeat. When you learn to dance in the rain you will find your lives easier to embrace, and less of an emotional strain.

  2. How “Jacked Up” The Mental Health Care System & Insurance Industry Can Be – Having a loved one do well under a treatment plan and then to run out of visits or have the medication not fully covered by the insurance, or to have a diagnosis which requires both a psychiatrist and a psychologist- like a mood disorder, not be covered on the insurance. The Cadillac of the ridiculous that is “mental health care” is when your loved one has lost their job and their health care insurance and now must go on government health care and it doesn’t cover the treatment plan they were on before they lost their job, which sends them spiraling into relapse. Most mental health family caregivers will wind up footing a good deal of the therapy and medication fees for their loved ones in order to keep them on the treatment plan which they are currently stabilized on.

  3. How Expensive It Is – On top of the health care and medication some caregivers wind up losing their jobs or having to leave full time jobs and care for a loved one who is unable to care for themselves resulting in maxing out credit cards, pensions, and savings. Another least spoke about issue is the sometimes indirect effects of a loved one who gets into legal trouble for a loved one struggling with their diagnosis either because of violence, drug use, or bond money to get a loved one out of jail. Attorney fees are also a concern as well as many caregivers who wind up footing the bill for a loved one who has racked up quite the bill on credit cards or untangling the banking troubles for a loved one. Also see number 3

  4. There Is No Support – Because of stigma you will face scrutiny from family, friends, co-workers, health care workers, psych professionals (surprisingly this is true), and some religious organizations. You will take a great deal of your journey alone, unless you are someone who has a really supportive family, you will shoulder the responsibility of caring for your loved one alone. I read once a caregiver, “In short, they need an RN, an MBA, and social work and law degrees to perform this job”, and many of us do so without either of those things and are expected to do them exceptionally well and with very little sleep.Our self care goes out of the window if we are not deliberate about it.

How Will I Get Through?

You will learn. You will learn the power of prayer and faith. You will learn the power of aligning yourself with your professional psych team. You will learn the importance of listening to your loved one and what they want. You will be more efficient than you ever thought possible. You will learn to prioritize. You will learn what to panic about and what to “sit it out” or wait for the storm to pass for. You will learn the importance of building a team of supportive people like joining a mental health family caregiver support group, or enlisting the help of family and friends you once hesitated in asking out of pride or fear. You will learn everything you can about the diagnosis, and you will identify when the “negative symptoms” arise and when they have subsided. You will come to see relapse as a part of the process. You will learn the importance of a pre mental health crisis plan, and a post mental health crisis plan. You will learn how to negotiate with you loved one. You will learn empathy. You will learn the power of acceptance. You will learn to love without conditions. You will learn to embrace change. You will learn the importance of putting yourself and your needs first. You will learn, just like any other caregiver who cares for a loved one with a long term illness, to dance in the rain and celebrate on your mountain tops as well. You will learn you are stronger than you thought. You will learn you will get through if you just hold on and keep fighting. You will learn to let go when your loved one chooses not to get treatment because holding on only drags you through emotional turmoil. You will learn the importance of embracing your life for what it is and not what you desire it to be. YOU WILL LEARN, that’s how.

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