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the road to recovery for families
Family Guide Interview with Sabrina Baker
In her own words….
“My name is Sabrina Baker and I am a social worker in private practice.
I specialize in working with families whose relatives have mental health issues and I have a passion for teaching and consulting in family centered care.
I’m actually from Zimbabwe in Africa and my accent reminds me on a day to day basis that the families I work with come from different countries and culture and backgrounds and I need to be mindful of this.
So I’ve been a social worker for thirty years and my specialty is in family therapy. Initially I trained in South Africa and the family aspect is very congruent to how I see the world. I think when you work with somebody who is mentally ill; in order to really understand them and to be able to help them you have to be able to see them as part of a system.
About ten years ago I started a family program for the schizophrenia division at CAMH and I looked around I saw that there was a dearth of services. When I looked at the domains of Cancer or Alzheimer’s there was a lot of support for families but very little for families whose relatives have mental health issues. Now this was surprising to me in view of the fact that taking a family centered care approach; it’s an evidence-based practice but there is almost nothing there for families.
When I first did the support work, I knew first hand how important it was to help families and that a little bit of help can go a long way.
When I was about 25 or 26, we were really taking care of my dad. For the three and a half years that we dealt with the health system, at no stage did anybody ask myself, or my family of origin, how we were doing.
At the time I didn’t think we needed any support, by the way, but I do remember one example, which was an exception to this. We were getting some brutal news in a very open area and I remember crying and feeling somebody feeding me Kleenex from behind. Now this little act of kindness went a long way in supporting me – and the families that I work with and teach with remind me all the time that it doesn’t matter if the staff are trained in family therapy or family work. Just a bit of civility and respect goes a long way.
So that really informs my practice, I try to treat people like I’d like to be treated myself.
Early Intervention Treatment For Families
Now we know that the more involved a family can be in their family members recovery the better the outcomes. I have worked with families for about ten years in early intervention. The first few years when people become ill, there are a lot of things that you can do to be helpful.
First of all I meet with a family and I ask them to just tell me their story, their narrative and it’s really important to note that families go through a parallel process to their relative.
People used to think they did a great job in supporting families but really I think they sort of conscript families as case managers. They don’t think of family members as going through their own recovery process.
In early stages when families hear of a diagnosis, they come and I meet with them.
They have a whole range of emotions.
So for some a diagnosis is an absolute relief – believe it or not – because they’ve known that there is something wrong with their loved one and they’ve taken their loved one from pillar to post only to be told that they are outside of the process, they can’t do anything so sometimes when somebody actually gets a diagnosis it’s a relief for a family member because they think maybe now my loved one can get the care that they need.
For others there is a lot of denial. Still trying to make excuses, maybe thinking, “oh my loved one is hanging around in the wrong crowd or using a lot of weed or whatever”. For some there is a lot of depression, anxiety about the future and you know when we’re thinking about early intervention, particularly in psychosis there is a lot of hope for the recovery but families already feel absolutely overwhelmed by this news and thinking about ‘how am I going to proceed? How am I going to get through this? Already thinking about what’s going to happen when I am no longer around?
Some people blame themselves a lot and start to try and understand why this has happened and maybe try to look back and think about; ‘I wasn’t here’, or maybe there was abuse in the family, maybe they were refugees.
I think its normal for people in these early stages to try and have some kind of understanding how this occurred.
And I think it can be very cathartic just to tell your story in a safe place.
Like many times these family meet with the clinical team but they tell the story through a certain lens always focusing on their loved one with the illness. So it’s filling that in with lots of corroborating information. This is a different focus; it’s hearing their story.
What are the emotions that they’ve gone through? What is their need? What do they need right here, right now?
In early stages, families need a lot of support and education is very empowering.
I always include a question for people trying to tap into their explanatory models. What I mean by this is – what do people understand about how this happened? I may take a bio-psycho-social model; understanding that people have a predisposition to mental health issues and then stress and anxiety or drug use or alcohol use may bring this on.
Other people have very different ideas of this so I like to sort of capture that and that will be important in terms of me helping them.
Different Cultural Perceptions Of Mental Health
What is the meaning of the illness for people? So myself as a white person in South Africa, I guess I had a more traditional psychiatric notion of psychiatric illness, seeing it in a bio-psycho-social model. So not seeing medication as the magic bullet but that’s a fundamental piece in terms of recovery and looking at all the other psychosocial pieces.
But other cultures, lets say some more tribal African would see it as a blessed thing as if you were possessed by the spirits etc. and certainly in working with other families it covers the whole spectrum – that’s why I think its important to ask how people perceive this.
I know that when somebody starts telling me that they think that their relative’ illness is about karmic retribution, I’m gonna have my hands full.
But that being said I think it’s important to welcome these perspectives in my room. I always locate where I am because I think you have to be open and transparent and I talk about what best practices are in the here and the now but it’s sometimes a process.
I worked with one women, she happened to be a nurse and I worked with her son when he was 16 and I think he is currently in his late twenties. Even though she was working in a hospital she saw that when her son was on medication he did much better but like her son, she sort of went into denial in thinking that you know it’s not a medical illness, its not a chemical imbalance in the brain, if we just treat him well and he does all these things to help himself he will be okay. So I sort of went through this process about four or five times with the family until everybody understood that there was a correlation with the meds but I understand that it must be a bitter pill to swallow for the person themselves with the illness but also for the family.
So I think that’s an important piece is just to be mindful of where people are in their process, to respect them and to help them to connect the dots.
I think that giving people knowledge is very empowering.
We know that when families are well informed, when they learn how to navigate the mental health system (which is a whole story in itself) and promoting wellness for their loved one – the outcomes are better.
I think even in these early days, families can feel very bereaved and look into the future and saying ‘what will happen,’ ‘what is the future?’ Of course we cannot predict the future.
If you reach people in the early stage, the prognosis is better but that being said it’s difficult to know who is going to do well and who is not going to do well.
Many times people, especially when someone is young, you feel invincible so the medication, as soon as someone is feeling well, people start feeling “screw this I don’t need this” and stop taking it. But even in certain cases where people are taking medication the trajectory isn’t what one would expect it to be.
So when parents ask me or families ask me these kinds of questions, I think what they are trying to say is “just give me a pill and make everything go away” and I think that its important to say at the onset that we don’t know what the future is but to try and focus on strengths and staying well and to reduce risk factors.
So when I’m looking at that I’d go through a whole list; be on your medication, avoid street drugs, have a support system, having something to wake up for.
This is the same information for the family member. The family often wants to know what they can do as a family member to promote wellness – so it would be going through some of those same objectives.
And reducing stress. Mental illness in a loved one puts a lot of duress on family members. The history of psychiatry did a huge number on families and if you think of only thirty years ago say in schizophrenia, families were blamed for causing illness, overbearing parents, mothers and absent fathers. And that’s our legacy. So if I’m talking to families, I’d include reducing stress.
Then I go back to having expectations, I look at the two worse possible scenarios with families:
One is to pretend that nothing has happened and you see that many times. People just go back to their lives because it’s just too much stress. Because this is an invisible wound its difficult to gauge, just to pace yourself and to know that with recovery it’s a gradual process and you introduce things slowly.
The other worse possible scenario would be to molly cuddle somebody and for somebody to just be sitting at home and doing absolutely nothing.
For family members, they describe it sort of like having a younger child, like a more adolescent child and renegotiating some of these approaches. So that’s what I meant in early stages. The family finds they’re more dependent. Helping people acquire skills maybe they are enabled, just like helping somebody to cook, helping to renegotiate the TTC, bringing them to an appointment but the thing is if somebody can do something to try and promote that. To help them build on their strengths.
The important piece also to emphasize is families can become so consumed by the care that is involved for their loved one’s recovery that they forget about themselves.
That’s something that I try to focus on. Helping the family to take care of themselves through this time; “putting on their own oxygen mask”.
It’s easier said than done because when people are in crisis mode they don’t have time to process this. I think what often happens when things become stabilized and people understand what’s going on, some family members experience their own crash.
Often families have other issues that have predated the on-set of the psychosis or the mental health issues and its important to identify who these families are.
If they have experienced multiple conditions themselves like for example; their own trauma, their own abuse or maybe they will have their own mental health or addictions issues or experience. Anything like this in nature is important to identify and deal with those issues and those families may need help in their own right, may need sort of a traditional family therapy.
I think it’s important to note that the family work needs to be tailored to the people that you work with. There is no a cookie cutter approach. Group work can be a very important piece, can be very helpful to people but not everybody can benefit from group. Timing is important. Before you’ve told your own story it wouldn’t be helpful or useful to go into a group.
Advice For New Families
I think the first thing to recognize is that you’re not alone.
Hopefully as a family member you’ve hooked up to a health team and to try and work with them. You know the first thing to do is to probably ask them for information. Knowledge can be very empowering. Just understanding what the process is.
I say to you that there is hope. There is help for you.
I think the biggest piece is learning how to navigate the mental health system. Try, go out there, try to find support groups, find organizations who are there, who can help you through this process.
One of the biggest issues for me is stigma. That’s one of the hugest barriers for people getting treatment and I notice with families as well, sometimes the stigma of a loved one having a mental health issues pulls you away from your regular support system and you’ll be on your own.
So I understand that some of you come from different ethnic groups etc. and it’s not okay to talk or you don’t feel safe but to know that there are other organizations and there are professionals who are there who can help you. Or even other family members, one on one, who can help you. There is support.
It’s difficult for families at the beginning because there is a lot of loss that often happens when family members are very young and its sort of like dreams are destroyed. So it’s helpful to talk to a social worker, a nurse, other families because there is this period of readjusting expectations.
For families I think it is the important to have some structure in the house.
There are things that you can focus on in terms of staying well. Basic stuff and you need to be doing these things for yourself because you can model self care: eating well, sleep, hygiene, exercise, having a regime. And patience – understanding that maybe if your family member can’t do something right here, right now it doesn’t mean that they won’t be able to do it forever – to understand that this is what’s happening in the moment.
Have some expectations. In speaking to people who’ve been through this I think having some expectations is a good thing. If your loved one, whatever they can do, allow them to do it because the ultimate goal for everybody is to develop independence and autonomy but when somebody is very ill we know that recovery is a gradual process.
It may feel for you that your loved one, no matter what their age; it’s like living with somebody who is much younger. You may find yourself supporting them with them in a more dependent role. So you may try to schedule something, maybe make a list with the person or whatever, what are some of the chores that they could do around the house. It’s to have that patience and the understanding that that person might be more debilitated then they usually are, but allowing them to develop competence.
As I said for yourself as a family member; try and carry on doing the things that you normally do.
So lets say if you normally have family meals on a Sunday to just carry on. I think that’s the biggest thing I can say.
Setting limits. Having parameters. Those are important for you and for your loved one who is recovering that will be very important in terms of promoting a stable sort of predictable environment.
Tips For Taking Care Of Yourself As A Family Member
The only person you can save is yourself.
That’s an important thing. To know what your limitations are. You can offer people support, guidance, but ultimately each person is responsible for their own recovery.
You have to try and keep your own head above water, just look at your own self-care and just go slowly, one day at a time.
I think what happens with us is that families can start feeling very catastrophic and it can feel very overwhelming so going one step at a time can be very helpful and useful. Again just doing the things that you normally do in your family. That is good for the family but its also good for your loved one who is not well because when they start becoming cognizant what’s really wrong with them, if they feel that they impacted the family to such an extent that the rest of the family is in a disarray, it causes a lot difficulty.
I think for family members, siblings often feel overlooked in all of this so if you’re a parent, many times you just to have some compassion for yourself because many family members explain that all their energy goes to the person who is not well and what about the other people? You have to figure out how to keep it in balance and sometimes some of the other siblings start acting out, they may think that their sibling is putting it on. They may think that they are to blame – so there is a lot of responsibility and I think it’s to say that you are in a very difficult situation.
That being said, family members that have been through this are a wonderful support for family members. I think the mutual aid, the peer support is vital because professionals can help to a certain extent but I think more important in all my groups and all the work I do, I bring a family member or somebody with lived experience into the room to tell their story.
I think giving people hope is the very important piece. I think that people in the early stages they want to know that there is light at the end of the tunnel. They may be going through a hell of a hard time but they will be able to arrive on the other side intact.
Again there are no cookie cutter solutions.
When I ask people what’s your passion, what did you like to do before, going back to your hobbies. Remember, you can’t be on duty 24/7. Sometimes it’s important to have a bit of a diversion.
For some people, and I’ve seen, just going to work may be a health diversion, just having some kind of separation. For others it might be spirituality, religion, nature, dogs, babies, hobbies. I think the important piece is to remember that this is probably going to be a marathon and not a sprint. So if it was a sprint you can go hell for leather and collapse at the end and you’ll be okay. But if this is going to be a marathon and we know, and this is the most important thing I’d say to you as a family member, its just not going to be a trajectory up, its going to be ups and downs. As people have said its like a rollercoaster ride. So if one understands that and I understand it takes some time to wrap your head around that, to remember that if this is for the long haul you’ve got to take pit stops where you need to take them.
When I’m with families I ask them what are the things you can do day to day, that could be as simple as I love having tea or coffee with my spouse. 10 minutes. I love having a bath with candles. I enjoy going for a walk with my dog. Simple little things like that for the day to day that have meaning and purpose. Then you could have weekly things.
Those who are in partnerships; remember having a loved one with a mental health issue can take the stuffing out of the relationship. So remember to put attention there. What I often notice is that people take out all their trials and tribulations on the closest, their nearest and their dearest. So to remember, if you used to have a date night every two weeks, go back to that.
A simple little suggestion, taking care when you’re going to sleep to try to not to talk about all these kinds of things in the last hour or two. Some people love doing yoga, meditation, tai chi. So there is a whole array of things that help.
I get families to fill out a stress awareness map is to remind them to see the warning signs for themselves when they are not doing well. So for example I use an extreme – if you’re doing so badly that you cannot cope at work or you’re really over sleeping, feeling depressed yourself, you may be feeling suicidal yourself, obviously at that stage you really need help but before you get to that point that, I’ve got this little stress awareness map, I get people to fill that out to get cognizant of when they are getting stressed. For some people it could be huge headaches, migraines, all these kinds of things. Mind going into overdrive, so before you get to that point, try to find different ways to cope with this so you can continue.
Many family members think this is a very selfish thing – to take care of yourself – but I say; if you don’t care for yourself, you will not be able to be an ally to your relative in the long run or to help everybody else around you.
When I design the family program its to help the family to be an ally to their relative, but also to ensure that the rest of the family continues to grow and even flourish. Because it would be terrible, if an illness can rob you of the person you know for a moment and then you know its not forever but it would be terrible if the illness also robbed you of your own life or your capacity to move on? And that happens to many.
What I’ve Learned From Working As A Social Worker
I think the big surprise is – I can’t judge, I can’t be predictive. I’m often surprised at people’s strengths and resilience.
I’m always in awe of how other people deal with adversity. I’m thinking about somebody who escaped refugee camps on his own. Not wanting to give any identifying information, just thinking about him, coming all on his own to Canada without a family, becoming ill which is not such a surprise and where he is now. It knocks the wind out of your sails. You just can’t believe that people have the ability to pick themselves up in this kind of a way. I’m always amazed at people’s humanity and their ability, what they can do.
And the thing I find with families is that its very gratifying work when people allow you in to get a peak at their world and to share something so profound with you. There is something very touching about the work that makes it very satisfying because sometimes some of my friends or peers would say “how do you do this work?” Well actually its very life affirming and I think that’s a surprise for them.
Out of this adversity, there is sadness and there is grief and I’m not going to minimize that – but there is also stuff that just makes me feel in awe of the people that I’m working with.
The other thing to remember is; today it’s you, tomorrow it’s me.
People think about mental health as something that happens to other people but if you start speaking to each and every one of us – everybody and their family knows someone either in their family or a friend who has mental health issues.
So I think that is why it is such an affecting kind of work.
What I do know is that families deserve the help, they need the help in these crucial times.”
Taken from a filmed interview with Sabrina Baker for The Family Guide to Mental Health Recovery project. Interviewers questions have been removed.
Edited by Sarah Shelson & Stuart Clarfield for The Mission Media Company Inc.
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