• La Shawn Wilburn

FAMILY CAREGIVING CHRONICLES: RELAPSE - Getting A Silver Lining When There Isn’t One


Relapse is a nightmare not just to the loved one but to those who love and care for them. Family Caregivers experience the guilt and disappointment along with the loved one. It is however much more traumatic for the caree. The embarrassment, shame and guilt are all triggers and could complicate an already difficult experience.


Being an advocate I must be aware of how I frame the story I tell about Family Caregiving experiences There are nuances that may be missed by persons unfamiliar with the day to day chores of being a Family Caregiver, which are "multi-faceted" much like staring through the lense of a Kaleidoscope trying to focus on one color while counting how many others there are. Everything is moving fast and you have to be able to make sense of and keep track of it all.


Respecting the privacy that comes with the challenges and day to day struggles for our loved one is sometimes difficult because in order to survive sometimes we need to confide in a spouse, other family members, support group or even therapist. In my case blogging and posting about my challenges as A Family Caregiver can also mean sharing information about my son who deserves his privacy. Managing a delicate balance while honoring my struggle, and ability to share helpful information with other Family Caregivers is very difficult at times. Sometimes I am unable to share because I ask my son and if he is not comfortable I must respect his privacy.


How a message of hope is delivered to those whose voices can get lost in the storms they are navigating can mean the difference between holding on for them and potentially, albeit unintentionally, feeding the stigmas I fight daily to dispel.


As a Family Caregiver I must be careful of how I tell the story of the struggles to "anchor" a ship we are on with our loved one that just happens to be thrashing and hurling about. Talking about resisting the urge to "toss overboard" the loved one in hopes of calming the storm is a reality for us Family Caregivers who day in and day out face difficulties ranging from "resistance to medication", failure to adhere to medication and or therapist schedules and appointments, addiction challenges, relapse and a host of challenges unique to each Family Careiver and caree.


As a survivor of depression and anxiety myself, I must be aware of how I weave the "wonderful tapestry" of fear and panic into the quilt of strength making beauty of frayed and damaged threads of survival. It’s a daily struggle to keep an eye on our emotional and mental gauges and being proactive as well. It can be exhausting battling yourself and your thoughts daily.

So many messengers and one message:

FIGHT! FIGHT! FIGHT!


As a parent to 3 adults and 2 teenagers - one fulltime, I understand the challenges of parenting "grown people" who "don't need help" because they are grown but ask for it anyway. What is really meant is "I don't want your advice until I mess it up and ask you for help." Being mindful of how to help them get back on track when they return for advice, direction or input on how to get back up on the road and untangle the snares is an art form. Doing so with an adult child who is battling a mental illness and sometimes doesn’t fully accept that illness is very difficult and very challenging. Making poor judgement calls, impulsive behaviors that can complicate not just their lives but the lives of those who care for them is not something that is considered at all. Sometimes because they are ill and others you are never really sure of as a Family Caregiver those lines blurr sometimes making it hard to distinguish between impulsive and intended. Either way you must be prepared to navigate both, that is very stressful, and exhausting - thinking for yourself as well as someone else.


I was once a twenty-something know it all myself...I have been there and I have the t-shirt! Managing that period of your life with a mental illness I would imagine makes for a very complicated and overly confusing time. Empathy comes into play but one must be careful so as not to become an enabler or hindrance. The art of balance once again comes into play.


Having adult children experiences means I have traveled the bumpy road of "teen years" with all of its hairpin turns, alternating speed limits and stop on a dimes! That wisdom can sometimes complicate, exasperate or create problems when we are faced with "scenarios" resembling old "battle grounds". Knowing when to "don" the sword, get on the bandwagon or quietly observe while being in the reserves requires a delicate balance. Managing those tasks of parenting a teenager as well as being a Family Caregiver to an adult child requires discipline and endurance, both of which require an extensive amount of energy!

All of those hats in addition to being a wife and attending to my husband’s needs and managing a business means I can get lost in the whirlwind that is my life.

As most Family Caregivers cases by the time we realize we need to take a break it's become physically, mentally or emotionally impossible to continue on until you have taken the time to rest. Meaning you cannot pass go until you rest!

The recent "relapse" with my son caused me to realize the breaks I took were from work so that I could tend to the family’s need or one on one with our youngest daughter, which she deserves a hands on parent just like her brothers had, meant I was not physically or mentally up to the “unannounced” task. I had to shut down other processes to fully engage and not burn the last bit of oil I had left. If not for prayer and knowing the signs from my body to pull back, as well as all of the coping skills I have learned throughout this process I could have been in real trouble.


Having an adult child who is battling a mental illness requires a good chunk of time and makes for interesting time management. My day comes to a pause when my daughter gets home and I am available to her with occasional "pardons" by my son who I had to learn to manage the "right now" need and distinguish between that and an "it's not your time stand" to take with him when necessary – unless there is an emergency.


Indulging in adult conversation and engagement with my husband is key to my sanity. If my son is experiencing mania or a depressive episode I can wind up not getting in bed until long after 4am and up again at 5am to get my daughter and husband up and out. A marriage requires nurturing and attention as well so a Family Caregiver has the task of managing the needs of their spouse as well, if not that could cause a strain on the couple and breed resentment within the family.


Burnout is easy, over what would normally appear a short period of time you can run out of resources fast because of the level of intensity we must perform, most times on a daily basis for days on end. Because of the intensity of our days duties it is very likely if we are not mindful of our limitations or attending to our own needs as well we can find ourselves in trouble with our mental health and physical health as well. I learned something this past week that I thought I knew and I thought was in my "tool kit":


"Downtime should be true down time. Not downtime from one chore to do another. WE NEED TRUE DOWNTIME! Taking small breaks is good, yes very good but occasional extended breaks are very necessary and there cannot be compromise or guilt as a result.”


I understand that most times that is virtually impossible. For instance I can't leave my son in the house alone for the weekend. I don't know who will be in the house while we are gone or if it will still be there when I return. That is my reality. The time when he is away is time I have to drop everything and take advantage of the break. I'd been filling that time with chores I couldn't manage during my intensive times with him instead of taking true DOWN TIME.

As harsh as that sounds it is a Family Caregivers reality and also one of the reasons I am so passionate about Family Caregiver support in addition to programs to occupy and entertain both the Family Caregiver and their loved ones.

A weekend away for a loved one can bring about uninterrupted rest and renewal. Knowing there is a wholesome and legitimate activity going on means less worry about a dreaded phone call or late night "rescue run". If you are a Mental Health Family Caregiver you understand fully the limitations. Your loved one is not incapacitated they are, outside of their brain health, fully functioning and able to come and go at will – especially adult children, and get into hairy situations if they are not minding their mental health or are caught unprepared in a manic, or impulsive episode. Mix in with that an addiction or struggle with an addiction and there is a recipe for a very stressful lifestyle for both the Family Caregiver and the Caree.


The latest storm taught me what I thought I knew already. I thought I reinforced the walls. I thought I had the "levee" secure and when the flood came I realized I still needed an "emergency response plan". Relapse isn't what we like to think about during the times of "stable". I now know I need an "emergency response plan" that evolves, shrinks or expands depending on the type of emergency we are faced with. I cannot “romanticize” stable so much that I’m so enamored when the event happens I’m thrown into despair, more importantly I must maintain a level of “management” that will firmly state my tolerance for ‘intentional bad behavior’ and behavior that is indicative of the illness for my son. Knowing when to say this requires intervention is so difficult sometimes but it is a necessary ‘evil’.


The levee held but the tiny breaks up and down the wall can cause a panic if we are not able to distinguish which are just cracks that can hold and which are breaks that if not attended to can cause a bigger problem. Because we are preparing for a disaster doesn't mean we are wishing for one or causing one to come about.


I heard a guy this weekend on the news for American Idol, the interviewer asked how did he prepare for his success of performing every time he was called on to perform on demand. To paraphrase he said, "...I'm always saying I’m not going home I have another performance. That way when I'm told I'm moving on to the next phase and I'm asked to sing right then I'm not panicking, I just perform..."


I considered how much sense that made. Yes it is very much the prepare in advance but it’s a bit more. It’s actually running through the scenarios in our mind and how we will handle them when they arise. For me now actually writing down what happened and how I handled it and how I could have handled it better as well as creating a “what if” and creating the “response plan” to go with it.


During the mental health journey we are told to think positive, don't think about the bad things happening or going to happen. As a Family Caregiver who is a survivor of depression and anxiety that poses a challenge. I shouldn't be thinking about pending doom, that’s what causes my anxiety. I'm supposed to acknowledge the trouble, ride the wave while staying mindful and thinking positively.


This past "storm" I learned that is a weakness that has to be reinforced. I have to be mindful but I must also mind the levee and have a response plan to perform my Family Caregiver duties effectively AND not apply the "sound the alarm" and instead initiate the emergency preparedness plan my Family Caregiver duties require me to. Working on and fine tuning the skill of "switch on and switch off" for my Caregiver role is important to not just my quality of life but that of my sons and the stability it would ultimately bring to our home.

Next phase? Evolution. Family Caregiving is a daily struggle to evolve and adapt. Managing our own spiritual, mental, physical and emotional health is not just key, it’s the difference between survival and surviving.

I hope this blesses someone else as it has blessed me...

God's Love & Grace is for us all. Blessings.


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