In this Episode of Family Psych Consumer:
What Exactly is Recovery in the World of Mental Illness? And What About YOUR Recovery as a Caregiver?
In this episode, Tom de-codes the concept of recovery for caregivers, parents, and families struggling to understand how mental health providers define, and makes promises about, recovery. That is, what is medical recovery from an illness, and does it really happen with mental illness? And what are the promises that can be made..or kept..about medical recovery? Tom helps you step outside this binary view of how medical providers look at recover ( i.e. sick versus well) and define recovery as a descriptor of the functional life lived by the person with the disabling mental illness or psychiatric condition.
For caregivers and parents, Tom wants you to focus on two realities day-to-day. The first is understanding that medical recovery from a mental illness may be limited, but recovery of a functional life can be ongoing and more achievable. The best news here is that helping loved ones think about recovery in functional, practical terms is a proven way of helping those persons live a quality life despite the effects of their illness. The second reality is that the emotional and mental recovery of the caregiver in each family is necessary (and achievable!) to ensure the sustained quality for life of their loved one. And caregiver recovery begins with declaring it and practicing it by valuing your quality of life and mental health as much as your loved one.
Full Episode Transcript
Hey everyone I’m Tom O’Connor and welcome back to FamilyPsychConsumer.
This week we’re going to talk about the concept of recovery, and the TWO distinct types of recovery
recovery for the person you love living with a mental illness; and YOUR recovery as a family caregiver of that loved one. . . and what does that mean? –“Your recovery as a caregiver”?
Today, we’re going to talk frankly about the realities AND possibilities of recovery and how it shows up (or doesn’t) in the mental healthcare world.
Recovery, or the promise of it, is the holy grail of treatment and rehabilitation. It is also the third rail in treatment because it is elusive, and patients and families expect it, and become highly demoralized
when they don’t achieve it, . . . and then become highly critical of providers who don’t or can’t deliver it.
But I want you, as the family caregiver, to understand how to think about recovery, so you can have realistic expectations of what is can look like,
and how to achieve it…and here’s the best part,
--how to pursue it in treatment and daily living
so it can ALWAYS be possible.
In this session, we’re going to touch on 4 areas of recovery…
1. How the medical world defines it;
2. The difference is between your loved one’s recovery from a psychiatric condition and yours from the emotional wear and tear of caring for them;
3. How quality mental health providers practice recovery with their patients to help them build their resilience, self-agency, and connection to the world around them.
And 4. Going first; meaning, how to embrace your own emotional recovery while managing a loved one living with a mental illness or addiction.
And if you who are quietly thinking, “What if I’M a parent or family caregiver and I’m managing my own depression, addiction, or trauma”?
Hang on to that thought for a bit.
Ok, so let us rewind back to this concept of recovery.
The medical world defines recovery as the body’s own healing processes (either independently, or
with the help of medicine and technologies), to recover from injury, infection or disease.
To dive a bit deeper, psychiatry, defines an illness state as acute …when its symptoms or distresses are actively present but expected to have a beginning, middle, and (hopefully) an end.
AND the medical world defines an illness as being chronic when its symptoms and distresses cannot be fully expunged and are here to stay.
Translation: the person with a chronic illness will have persistent disabling features of the illness ongoing. In functional terms, chronic is really a descriptor of the disabling effects of the illness in your loved one’s life after psychiatry and all therapeutic treatments have done everything in their power to achieve outcomes for your loved one.
An example of this would be impulsivity or behavioral dis-inhibition in your adult daughter with a trauma history; her depression and panic attacks are well managed or even expunged pharmacologically.
So psychiatry has “recovered” the brain from the acuity but she still has to manage her dys-regulation and distress when triggered by a thought or experience and then re-group emotionally after that event so she can perform mentally at work or school,
or in her relationships. And the medical profession will consider her a medically “recovered” patient, because their domain is first, the brain and the body;
this is famously referred to pursuing stability;
I’m cautious to name conditions that the treatment world may be generally agree fit into an acute versus chronic box because many persons with the same diagnosis manifest a unique presentation of their acuity and one person’s bipolar condition may acutely emerge periodically, with no sustained chronic features, another’s will have a once-only acute event but experience chronic disabilities in daily living forever.
So I think it’s best to think of acuity as the life cycle of an episode in one’s illness and chronicity as the functional face of the illness’s disabilities.
Another way to think about this and I encourage you to do so,
is think about treatment as being either change-centric or maintenance-centric.
Change is that path of acuity-to-stability medically, or therapeutically, when your family member has a breakthrough insight, or achieves new staminas
and then applies them in daily living. Maintenance is in the chronic world of managing disabilities and enhancing skills and assets. But make no mistake-
in my experience, this latter world is where recovery has its greatest victories.
Honestly assessing where your loved one is in their illness cycle or functional living allows you to more realistically expect a change outcome or a maintenance outcome from a given treatment provider. Having this footing on the front end of a treatment campaign will help you have a more tempered response with whatever outcomes are achieved.
I hope that makes sense,
and we will be discussing this in full over time.
So in our thinking about recovery, I want you to see TWO recovery campaigns for your loved one –the recovery from the illness event (think acuity) and then recovery from the disabilities of the illness.
Let me go back to this concept of stability…. so you can think critically when navigating the treatment world AND ask providers to explain their treatment methods and how they measure their outcomes.
So here goes…
Stability has a precise meaning in the medical world. Here’s an example you all can relate to:
Let’s say I have bipolar illness that normally is well-managed with the combined support of a mood stabilizer for my brain, and a good coach/therapist who helps me maintain objective, constructive thinking about my daily life stressors --job, marriage , kids—but then my stressors start to ramp up, and I start drinking to self-medicate those stressors and frankly check out a bit (meaning I’m receding from my relationships and responsibilities in my daily life…and as my medications start to lose their efficacy because of my drinking, I become more disinhibited and impulsive in my behavior, and I start showing signs of being hypomanic, and my family, psychiatrist, and therapist all know before I do
that I’m about to have a full-blown manic episode
if they don’t intervene…they talk me into checking into the hospital to quote “stabilize” my illness. So from my doc’s perspective, “stabilizing me” means separating me from my life’s stressors that drive my self-destructive behaviors to allow my brain to recover to its healthy baseline (think sober, receiving nutrition and good sleep, and my past meds that worked).
Then, hopefully, a solid discharge and aftercare plan makes sure my brain remains stable after I leave the hospital. (Of course, we all have our horror stories about poor or even negligent discharge planning, and we will certainly be spending a lot of time on this in upcoming episodes).
And, if I may, a sidebar on the word “stable”--
In my view, the word stable gets used too casually and at times, lazily. The hospital stay is the medical campaign of getting me stable.
It means a very specific thing in the medical context --- returning the brain to a place of stasis.
But most community or outpatient providers will say “he or she needs to be more stable”, but that statement doesn’t provide any usable information to the family caregiver. If you, the parent or family member, can’t understand where are we now and where are we trying to get to, functionally speaking, how you expected to assess how well (or not well) your loved one is?
You need the treatment providers to use language that serves your goals of being a useful participant on the team so you can know what they are paying attention to so you can pay attention to the same thing, in either recovery or decline.
The question I am always posing to providers outside of a hospital who are treating your loved one is … descriptively speaking, what is your definition of stable for my loved one? AND what is your recovery goals beyond stability for that person?
When we are talking about infection or disease in other parts of the body (lungs, heart, liver, etc.), recovery, as a process of illness to wellness, is easier to get our heads around.
But with psychiatry, we are talking about the brain; the least understood organ in the body, the health of which has the most material impact on the future quality of the life lived.
And here’s the inter-dependence piece… the daily experiences of that life lived, especially loss or trauma, will neurologically impact brain health
(and yes, stability) of the brain.
My favorite saying is “Healthy brain, healthy life”… and it a driving premise in all recovery planning.
Now, remember when I mentioned that little nugget of hope earlier - when I said “here’s the best part of recovery, how to define it so it can ALWAYS possible”? Well, here IS that best part. While the world of psychiatry and medicine defines recovery through the lens of the body and the brain,
I define it as recovery of the life lived. So my frame is functional -- how the person living with a psychiatric condition recovers their emotional and mental staminas, their hope, their physical energies and critical thinking, so he or she can gain or regain a fuller life in their world. And this should be the basis
of all programming and interactive work between professional and patient; skills, staminas, and achieved life activity that are the evidence of recovery in daily living.
Now, a little history lesson about my perspective and who has shaped it….25 Years ago, Dr. William Anthony in Boston had a new concept about recovery
from mental illness. In his view, treatment outcomes needed to be re-oriented to reflect the life lived, not just the illness being treated. Treatment and rehabilitation methods needed to engender hope in the patient, and help providers look at the patient
as a person who wanted to look beyond their medical recovery or stability (there’s that word again) to have recovery in their functional life despite the ongoing effects illness. Anthony understood that a binary view of recovery, (illness-centric - sick or well) did not nurture or deliver the most necessary and potent healer for patients living with mental illness… hope.
Anthony saw hope as a stamina to build functional skills that would help recover the life lived.
We will revisit this again, but over time, I want re-tool your thinking away from the binary view of medical recovery that continually sets you up
as the caregiver to chase the next therapy, the next medicine, that next GREAT program – that sets you up to chase outcomes from providers who do not think this way . . . and as a result, just demoralizes you further about a mental healthcare system that does not deliver, and further despairs you about your loved one’s future.
So, what we all need from the treatment world is this:
Every psychiatrist in America , every psychiatric hospital, or rehabilitation center, or therapist, needs to understand the construct of recovery, how to talk competently about recovery to their patients, and how to ethically talk about the true limitations in the medical toolkit, especially for those persons whose illnesses have poor prognosis for medical recovery; how to be in a hopeful, expansive dialogue about the strategies for functional recovery… and integrate recovery-based language and thinking into all their communications with their patients in all levels of care (outpatient, residential, or inpatient care) …as we say each day, “you are not your illness and we need a path forward for you to have your life on your terms”… and that's possible.
The process of recovery-oriented thinking is a process of reinforcing a belief that the person wanting it actually can have agency over their life and move forward.
One of the boldest examples I witnessed of professionals living the recovery model occurred when I went to a wedding at a community mental health center; the couple was in their 30s, each long time clients of that center, one an African-American woman and the other a Vietnamese man, each living with schizophrenia. They had been friends for a long time, then became romantically involved, and received recovery-oriented care management together at this center. Both were very compromised, but competent in the eyes of the law and it was the staff’s intention to endorse and celebrate their relationship. It was a powerful moment, both families were there ….and privately, many of us were thinking “how in the hell are these two gonna make it?” ….that was our practical selves judging the viability of the union. But that event was about bringing normalcy to two people who loved each other and wanted life as they see other people living it. That was a bold example of delivering recovery for people with very compromising mental illness. But recovery in day-to-day living for most people is looking at the functional change or accomplishment in their daily living …and making sure that their treatment or therapy… …helps them make those things real.
OK, back to recovery…and my favorite recovery topic…your recovery as a caregiver.
Now most caregivers I meet are emotionally worn out or despaired navigating the mental health world …and how it is “failing” their family . . . so my goal is to transform you minimize that fatigue and despair; and I do this by making you an informed participant in the mental health marketplace.
so you can lessen the emotional lows when things don’t turn out and train you to be a more flexible actor so you can rebound from the ups and downs in either medical OR functional recovery.
Here at FamilyPsychConsumer, we are about caregiver wellness…YOUR wellness; and I know that when you take care of yourself, your loved one has a better chance of living well themselves. And conversely, since they count on you, if you are drowning, their quality of life suffers because your love, time, money, critical thinking are their lifeline to a healthy safe life.
I recently wrote an article about the concept of parent recovery to remind people that recovery is for patients AND families. Every family caregiver needs that same lubricant of hope and practical support to maintain their quality-of-life independent from being a caregiver.
This brings us to the next thing about recovery, which is the how…that is, how do you BOTH recover? There is only one true path.
You, the caregiver spouse/parent/sibling/friend, have to go first. Let me repeat that. You have to go first. What does that mean? Well, let’s explore a bit….
I’ve asked countless family caregivers what their idea of recovery is in their life, and here’s what they tell me:
“I want to give myself permission to be away from my addicted son with mental illness”;
“I want to spend my limited time and energy on myself”;
“I want to recover my own stamina and hope so I can face his life each day”;
“I want to value my quality of life is much is his or hers”;
“I want to recover my idea of my son or daughter as a well person”;
“I want to be free of the guilt of wanting my life too”;
These statements reflect shared sentiments: exhaustion, guilt, isolation, and hopelessness. And all also reflect their reality of lives being consumed by what their family member needs day-to-day and their lack of clarity to invest in their own welfare.
I submit the two can coexist, and concurrently be achieved.
But for most caregivers, it’s a bold and highly uncomfortable choice, and that’s AFTER they have insight that it’s possible.
I can’t tell how many times I’ve been in a room with parents of an adult child living with depression, bipolar illness, or other disabling condition who when asked “ what do you need?”, reflexively answer about the child.
They have made that adult child the very center of their life for so long that their individuated identity has been subsumed into their life as a caregiver. I’ve had countless mothers become absolutely confounded when I keep saying that the answer to “ what do you need?” is about them, not their adult child.
So, my question to you is, can you openly declare, to yourself, that you are entitled to recovery goals? If so, I am here to achieve them with you.
Here’s the first step --go to the FamilyPsychConsumer podcast page and tell me ONE thing that you want that defines your recovery
… even if it's already been happening, or you don’t have it yet, and if it does NOT seem conceivable,
please tell me your reasons why.
I want to provide you a practical roadmap to have your life matter at the same time as your loved one’s. There's tremendous power in declaring it.
I’ll be taking your stories and sharing them here (anonymously, of course) so you can experience other listeners’ obstacles to recovery (and hopefully feel that your experience is shared and understood) and then discuss strategies to set those obstacles aside.
Here’s the deal…recovery begins with granting permission to yourself to have a life that's bigger and healthier than just caregiving.
We all know that your caregiver-centric life makes your life as small as the daily circumstances of another's illness. But please declare your goal because speaking that goal makes them real.
That wraps up this week’s discussion on recovery. We will be revisiting this topic a lot in the coming podcasts, and get into hard skills teaching and support in our regional workshops. Next week, we’re going to take on the chaos and indignity of “crisis care” –when the people we love are completely consumed by their illness, usually unsafe as a result,
and need to be taken to the hospital against their will.
Until next week, take care and remember,
you are not your caregiver life, you are a person who needs to take care of yourself each day for yourself.