Experiencing and Resolving Grief and Loss

when your person is still here

Can we survive and thrive when our loved one has a mental illness (whatever the reason for the dysregulation may be)?

This is a tough one to write because we are never supposed to negatively share our feelings about our loved one’s health condition. The understood thinking says we are supposed to be supportive, kind, accepting, understanding and all those other words that say “I am a good person”.

However, the reality is, when you live with someone who has a mental, emotional, or behavioral disorder it can simply make your life miserable. When your loved one cannot function independently, if they chronically verbalize all the negatives in life, can’t (not to be confused with won’t) appreciate your input or sacrifices, when they take far more than they give, when their non-negotiable rules rule your life not theirs, YOU STILL LOVE THEM, you are still committed to being this person’s parent or loved one – and you desperately always, always, always want the best for them, even when it can be hard.

If this is you – keep reading, you are probably parenting or loving someone with a “mental health condition” even if you consider these behaviors as a symptom of their medical illness.

This life is not for the faint of heart. Life is full of ups, downs, and turnarounds for most of us but when you realize the person you love the most has a different developmental or functioning ability to your “norm” it can be confusing, shocking, upsetting, and debilitating for everyone. If your loved one is always angry, curses at you, if you have to walk on eggshells, if things must be done on demand, if they seem highly intelligent but unable to function, if they fight and argue and scream when the simplest things go wrong… it can be chaotic, confusing and frightening for all involved. The person dealing with the huge surges of emotions that they can’t control, the people trying to support the person, and the siblings and friends involved in the situation are all affected by this seemingly random tornado of behavior and cycling crisis events.

It takes a while to understand, to realize this is not what you read about in the “What To Expect” books, and you recognize the need for assistance. It’s at this point typically you seek help and advice from a trusted professional – someone who has a background and education in this subject matter. You trust this advice is going to resolve what you see in front of you. You work the steps, you show up to the sessions. You seek out treatment. You do the work. Until you realize this advice is often not super helpful or what your loved one seems to need and even if it kind of works, it doesn’t always help to calm down what is happening on a daily basis.

When you follow all the tips, tricks, ideas, and helpful (often loving) advice and your person STILL lives with these symptoms described above, you find that the helpful people start to become less available, and your family and friends turn on you slightly or switch off, they stop offering advice because on some level – like our children, the assumption is, we are not giving it our all, we are not doing the work, we are not fully committed or complying because surely if we were – our loved one would be “cured”. It might be seen as a parenting problem or a lack of structure, a lack of connection, or even a lack of discipline but especially with younger children, it is rarely seen as a medical condition.

At the very worst, advice becomes negative. Ideas such as “Just call the police” or a stranger uttering “My loved one would NEVER speak to me that way” in a grocery store parking lot, or the most helpful “force them to comply” or “make them do it“. Dr. Phil’s “Commando parent their ass” or another favorite “throw them out and make them cope” or my absolute worst-favorite was being given the book “Train Up The Child.” Mostly all these things speak to the idea that you should just “abandon this person for their obvious noncompliance” when in reality you and I both know, this is often when our people need us the most. Someone has to be there to help them cope.

We are stuck in a cycle of they can’t, we have to, they won’t, we must, the if you love them let them go cycle just does not apply here, because if you do, you are sure they will die by suicide or substances, end up homeless, unloved, uncared for. This is NOT what you want for the person who carries your heart.

Conversely, at some point, you start fantasizing about the same for yourself just to make it all stop. Many nights sobbing in the rest area or at a random Petsmart parking lot has taught me to feel this wave of disbelief, sadness, and the overwhelming fear that it truly may never get better, while also realizing if I want to remain in the game, I have to commit and force myself to do that.

I am tenacious to a fault, I love my child, I want to remain in the game because that person holds my heart in theirs. I promised to love them unconditionally and this, this to me is the epitome of “loving unconditionally” loving someone on their absolute worst day(s) is just part of the gig. No, I do not have a savior complex nor am I enmeshed with my child, but those are both things that people level at you as a diagnosis for taking the role of parent seriously. God forbid it is because your child is medically unable to do the things that are expected.

Now, when this is a spouse, I get it, I understand, I realize that’s a gray area where we cannot commit unconditionally to a never-ending cycle of negativity and abuse, but when it is your child, buckle up, because on so many levels it’s your responsibility to manage.

Someone recently shared this article with me: Living with a child with mental illness

Mental illness is a dirty little secret. You won’t be putting a bumpersticker on your car proclaiming your child has a mental illness. That would be admitting that somehow your child is broken, that you are broken. YOU broke them. You learn to scream in silence so no one can hear. People don’t want to hear. No one wants to even imagine their child with mental health problems. No one wants to get near or go there…it’s too dark. You go there because you have to. There is nowhere else for you to go because YOU LIVE THERE.

It resonates… doesn’t it?

Living under this constant stress has several negative consequences for both our physical and mental well-being and the immense grief over what could have been, the feelings of loss, even the jealousy of how easy other’s lives appear to be, just compounds the stress and sadness we have to resolve within ourselves. The irony of it all is that the constant stress we feel ends up making us feel similar to our loved ones.

We feel despair, sadness, regret, like an outsider, misunderstood, helpless and hopeless even worthless. The unintended consequences of this stress seep into our daily life:

Health issues: Prolonged stress can have a detrimental impact on our physical health. It can contribute to various health problems such as cardiovascular disease, high blood pressure, weakened immune system, digestive disorders, and chronic pain. Stress triggers the release of stress hormones like cortisol, which, when chronically elevated, can disrupt the normal functioning of our body systems.

Mental health challenges: Persistent stress can significantly affect our mental well-being. It can contribute to the development or exacerbation of mental health conditions such as anxiety disorders, depression, and burnout. Stress can make it difficult to relax, concentrate, and enjoy life, leading to a decreased quality of life and overall happiness.

Impaired cognitive function: Living in constant stress can impair cognitive abilities such as memory, attention, and decision-making. Stress triggers the release of stress hormones, which can interfere with the proper functioning of the brain. This can result in difficulties with concentration, learning, and problem-solving, affecting our overall productivity and performance.

Relationship strain: Stress can take a toll on our relationships. When we are constantly stressed, we may become irritable, moody, and less patient, which can strain our relationships with family, friends, and colleagues. Additionally, chronic stress can make it challenging to find time for meaningful connections and engage in healthy communication, leading to feelings of isolation and loneliness.

Reduced productivity: While short-term stress can sometimes enhance performance, living in a constant state of stress can have the opposite effect. Chronic stress can lead to decreased productivity, difficulty focusing, and increased absenteeism. The mental and physical exhaustion caused by stress can make it challenging to meet deadlines, handle responsibilities effectively, and maintain consistent performance.

Sleep disturbances: Stress can disrupt our sleep patterns and lead to various sleep disturbances. Constant worry and racing thoughts can make it difficult to fall asleep or stay asleep throughout the night. Lack of quality sleep can further contribute to fatigue, decreased cognitive function, and worsened stress levels, creating a vicious cycle.

Negative coping mechanisms: When under constant stress, individuals may turn to unhealthy coping mechanisms such as excessive alcohol or drug use, overeating, or withdrawing from social activities. These behaviors provide temporary relief but can have detrimental long-term effects on physical and mental health, potentially leading to addiction or other harmful consequences.

and if you ask me GRIEF. 

Very Well Mind offers this as a cycle of grief:  The 5 Stages of Grief is a theory developed by psychiatrist Elisabeth Kübler-Ross. It suggests that we go through five distinct stages after the loss of a loved one. These stages are denial, anger, bargaining, depression, and finally acceptance.

But now maybe we can recognize that anything can create such a cycle not just death and dying. Mental health is often a diagnosis of a long-term chronic situation that will end but probably not for a very long, long time.  We can recognize our grief and loss for all the things we miss out on along the way, and if we recognize that, will our stress subside? When our stress is reduced can we renegotiate our grief and loss cycles? Sadly no, or at least not for me. I can recognize the cycle in my life, but I feel stuck. The reality is I am stuck.

• denial – “No, not my family, it cannot be true.” I don’t spend as much time here anymore. I no longer live in denial.
• anger – “Why me, why us, what did we do to deserve this?” I generally will begin back here often, usually triggered by a graduation of a friend, or my other child, or a vacation we couldn’t take, an event we didn’t attend, etc. etc.
• bargaining – attempting to postpone the inevitable crisis cycle with “good behaviour”. For us: that’s typically me silently begging, “If I do this, please don’t let that happen”… Our crisis is usually a very angry response to something we don’t even know about, some trigger, some imagined slight, something wrong with what I said, did or when maybe I accidentally breathed wrong.
• depression – when reacting to this as a chronic illness, and preparing for the inevitable cycle to play out over and over again, and then returning to
• acceptance – “The rest before the next crisis hits” nothing final about it but just accepting that is it calm for now, all is okay.

Unfortunately, in my world, I don’t see where there will ever be an end, so the cycle will remain constant, perhaps that is my level of acceptance.

Overall, it is important that I recognize the signs of chronic stress and take steps to manage and reduce stress levels through self-care, relaxation techniques, seeking support, and making lifestyle changes but the reality is, this is my life. I can prioritize my own mental and physical well-being which will help mitigate the downsides of living in constant stress and can promise to promote a healthier, more balanced life for myself.

Download our one-page “grief cycle” and give yourself permission to be all over that chart – some days we can hit all those points and start over because it has to be ok to feel that grief, accept our lot in life and still be angry, still experience disbelief and even jealousy over the things we hoped for but didn’t and probably will never get. Find ways to get yourself to acceptance just a little quicker, find things that make you happy, journal, yoga, meditate, pray, wish, whatever that thing is, it’s important to remember you are not alone, while there may be limited answers the only solid plan is to keep going forwards.

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