• La Shawn Wilburn

How I began my Mental Health Family Caregiving Journey

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“Each of us has the right and the responsibility to assess the roads which lie ahead, and those over which we have traveled, and if the future road looms ominous or unpromising, and the roads back uninviting, then we need to gather our resolve and, carrying only the necessary baggage, step off that road into another direction. If the new choice is also unpalatable, without embarrassment, we must be ready to change that as well.” ― Maya Angelou, Wouldn't Take Nothing for My Journey Now

I will never say to another Mental Health Family Caregiver I know exactly what you are experiencing. Just like mental disorders are unique so are the experiences of those who care for those with mental disorders.

Factors of the Family Caregiver and those of the “caree” or loved one being cared for have a great deal to do with the coping strategies, the relation to the caree, the relationship with the caree, the self-love for both, the level of tolerance, temperament, the mental disorder and multiple other variables. I have read many books, articles, blogs, and spoke with other Family Caregivers and to be honest the actual experience is nothing like the “books” say. You may find a common ground with other Family Caregivers, you will find yourself comparing the level of success they may or may not have with your Family Caregiving experience. That won’t work. One you cannot judge their success and where they are currently as a “milestone marker” because lots of trial and error went into that journey, and trust it was a difficult one full of self-doubt, fear, anxiety, and immeasurable amounts of selfless love. Two you cannot judge their failure and where they are not because you have trekked through a battle field to get where you are today and you have made lots of mistakes, failed miserably multiple times, and have reached where you are now with a pound of flesh and lots of blood , sweat, and tears.

There is a lot still being discovered in the area of research for mental illnesses. Mental illness is so complex, the brain is so intricately woven and still a mystery to the scientists and researchers. To feel infinitely small and totally out of place when trying to understand such things as, “why does your loved one function so completely one day and another be virtually incapacitated with depression?” What I learned and I’m still learning along this journey is it evolves. When you look back to the first “episode” you experienced with your loved one and compare it to let’s say the fourth or fifth episode what would you learn? I learned I wasn’t as afraid for one, and I learned to trust my instinct. If you were to ask me what I’d learned about my son during those times I would say how afraid he was every time. How angry he was about being out of control. How in control he was during the times he thought he wasn’t and I could go on and on.

Consistency is not something that I can say I have experienced as a Family Caregiver. It could be we aren’t far enough in our journey yet, time will tell.

On your best day you will always have in the back of your mind the question of whether or not you are ready for what comes next. I remember the first time I actually had a break between the manic episodes after a four (4) week run with my son. I sat there feeling like my hand had been in an electric socket. My son was sleeping it was a Saturday morning and I had been up all night off and on monitoring him. We'd finally got him to stop crying like the many times before, but the next round was normally filled with anger and rage. I wasn't quite sure how to handle what was going on. He’d refused treatment because of past treatments not working or making him feel worse. Lithium according to him was worse than the symptoms. I'd heard of Bipolar before but only when referring to someone who was "moody". I wasn’t allowed to speak with the doctors or psychologists. I was worried about him night and day. I was working full time, and still managing my wifely and motherly responsibilities to my other children.

At the time he was diagnosed I was working for a well-known "teaching hospital" and conveniently worked with nurse educators. I remember telling one of the nurses my son was recently diagnosed with "Bipolar Disorder" (later he would also be diagnosed with schizoaffective disorder) and her saying with a great deal of concern in her voice, "oh I'm sorry..." At the time my concern was only getting information so I couldn’t make room for emotions. I was confused and unsure of what to do next. Did I need to go to him (he was out of state) or bring him home. She didn't know much about the disorder other than it was "serious" and I was directed to another nurse who had “more” experience. As soon as I spoke with her and told her my desire to bring him home, her first response was "leave him where he is.” In paraphrase: “He will tear your family apart...I know I've been there, my daughter is Bipolar..." My initial thought was typical of a mother who has not experienced an adult child with the disorder, "...that's a horrible thing to say about your child...how do you abandon your sick child?"

She told me about struggles with addiction, impulsive behaviors including frequenting bars and "hooking up" with random dates, and taking the car without permission and having to track it down to get it back. I thought to myself, okay this won't happen to me because my son knows he has a mother who would break his neck if he ever did such a thing to me. It's funny how we can judge another’s situation based on our own experiences or what we believe are our "stronger than that" character traits. The nurse was kind enough to direct me to the universities "study trials" I had access to on the intranet. It was great information, some of it actually made sense; some of it was overwhelming and purely Greek.

I drove home in tears. I called my husband told him what I found and he reassured me it was nothing we couldn't handle.

That evening we researched, googled, YouTube’d, and called everyone and everything about the disorder. I'd spoke with my son later that evening to be reassured all was well he was getting treatment and seeing a therapist. I asked the name if the medication so that I could look it up and he said, “Lithium”. The sound of it alone said "nuclear" to me. My mind went straight to radiation therapy. I thought of a liquid medication flooding his bloodstream and frying his brain. After seeing all of the side effects I cried harder.

I discovered as I did research there were signs that my son had Bipolar Disorder as a child. Maybe there was not enough research about it during those years to give a diagnosis. I took my children to see therapist after my divorce because there was domestic abuse and I didn’t want them to become abusers themselves. I would be reassured they were well rounded and rambunctious boys and all of the fighting and aggression was normal, it was part of the “hierarchy”. Being raised with only a sister this was all new to me.

As a child he was always very temperamental and could become aggressive without warning to the point of violently attacking his brothers. I can remember prying him off his brother at 8 months old, with his teeth sank into his arm over a toy. My ex-husband had a “bad temper” and was very violent so we chalked up my sons behavior as a "bad temper". Countless counseling sessions later and I was told I was a perfectionist and expecting my children to be an extension of who I was. I bought the suggested books including Doctor Spocks, “on Parenting”. As I discussed with him more about the diagnosis and wanting a second opinion he became more and more irate. I sat there after he'd hung up thinking something was different.

I went to bed that night praying for him and for the ability to know what to do. As usual it would be a week before he would take my call again; sometimes it stretched into a month. He called to tell me he was on a new medication and that he'd stopped taking the Lithium because it made him sick. I was excited because I’d read about the effects on his kidneys and liver. He said, "It’s all natural and no side effects!" I was like yes!!! That’s so good. He said its marijuana...I was so done. This was one of the kids that wouldn’t drink anything that wasn’t clear, hated tea because it looked like toilet water, and hated the smell of beer. I knew I’d raised them not to use drugs. I took them to DARE programs they graduated from them I didn’t use drugs I talked, preached, and threatened about using drugs, why would he choose marijuana? As he was laughing uncontrollably I started into my “...you know that’s a gateway drug speech”. Having a family history on both sides with addiction I’m horrified about using anything stronger than Tylenol. When I was diagnosed with anxiety and prescribed Xanax I stopped taking it after 3 pills, I was high as a kite and afraid of becoming addicted and eventually needing more drugs to feel well.

Seeing how upset I was about it he became defensive and combative stating I was closed minded and “things have changed” and it wasn’t a gateway drug and I was just being judgmental. I’d done the research later and confirmed that although there were really good studies for cancer and epilepsy being successfully treated with marijuana; it was a dangerous drug for persons with personality disorders because of the risk of causing extreme changes in behavior like rage as a side effect. It was great for them “during” but the after was “life-threatening” causing extreme depression and bouts of rage. He hung up vowing to never talk to me again, threw in some choice words and didn’t answer for weeks. I’d taken up a new tool of monitoring his Facebook page to know if he was okay. Painfully I watched as he would post pictures of drunken nights, and videos slurring and partying. As someone who hated the smell of alcohol and beer in the past he was “strapping” them on one after the other. I couldn’t believe this was the same person. I would send private messages that I loved him and wanted him better and please call.

I would get a call to send him a ticket to come home and he would later come home due to a very bad breakup. Our journey to sobriety and therapy would start, stop, and start and stop and continue in a cycle. Hospital visits, suicide attempts, and a state hospital stay (he committed himself after a really bad manic episode), severe verbal assaults and various other storms.

My first experience being a Family Caregiver I thought was when he came home, but once he was home it was the same son I’d always knew; a bit more hostile and extremely emotional but as far as the outspokenness, focus on me it’s all about me and bouts of self-hate it was his “normal”. I was sad. I could have saved him “way back then” when he was misdiagnosed as an “over achiever” and “gifted”. I had been a Family Caregiver most of his life and didn’t know it. We are where we are today after much sacrifice, after many failures, after lots of pain, through many manic episodes, surviving depressive episodes and still evolving. I long for him to have a full life like any parent. He’s a hard worker with an impeccable work ethic. He’s smart and creative and has an innovative mind. His art is amazing. He fights so hard, sometimes he wins.

I want other Family Caregivers to know you are not alone. I have experienced the “battles” with healthcare professionals, and mental health professionals who either believe you or don’t believe you; who are accessible to you one moment and inaccessible the next. I have been allowed to talk to the doctors and then removed from the “list” to discuss my son’s mental health at his request. It is all part of the journey. Some days are frustrating because you become the enemy without warning sometimes.

The best advice I can offer to another Mental Health Family Caregiver is to set boundaries early on. Do so when your spouse, child, parent, or friend is not symptomatic. Discuss with them during stable times when to make the call to go to the hospital. Give safe words and “signs”, and I do mean literal signs. When my son is not wanting to be bothered he retreats to his room and there is a “do not disturb sign” he can post on his door so that if he’s living at home we know he doesn’t want to be bothered, or if he’s on his own living with a room mate they will know to let him have some space. The agreement is, if after a set amount of time someone knocks and there is no answer we are coming to check on him. It helps him to know he has support and privacy and us to know he’s okay. Information is your best tool. Ask your loved one what it’s like. Ask what you can do to help. Don’t judge. It’s difficult to not be skeptical in the beginning because it’s hard to know if there are games being played because they don’t want to keep a commitment or if they are really sick at that moment. As you move further down the road in the journey you will learn when the “shucking & jiving” are in effect, when to push and when to back off. You will learn when to be empathetic and when to be firm.

Read and ask questions and get feedback from other Family Caregivers, it won’t always give you the “exact” solution but it will put you in the ballpark and you will recognize and understand some of the behaviors better. Know that they want to be better. Know that it is important not to make excuses for your loved one if they are not working to get better. Be honest about addiction. Until the addiction is addressed the disorder cannot be addressed. Ask for help. Keep your health in check. Take breaks. Let them make mistakes. Be patient with yourself and with your loved one. Take time away from the house, do an overnighter in a hotel if need be. Last but not least, sometimes you have to let them go, not because you give up, but because if they don’t want it more than you do they won’t be successful. You will only burn yourself out trying to live for the both of you. I hope some of this helps. Praying God’s blessings for you and your family.


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