Dog Days of Summer Supporting families 24/7. Find out what makes August so special!
A website by Dede Ranahan
Dede is asking for those of who have loved ones with serious mental illnesses to share our very personal stories on her site, Sooner Than Tomorrow (http://www.soonerthantomorrow.com/dede-ranahan-contact/) in order enable advocates to put names on numbers. As she says, “Serious mental illness is still not receiving the attention it deserves. Let’s put faces on the numbers. Thousand of suicides, incarcerations, homeless men and women, people without services, and families stressed beyond their endurance are difficult to visualize. But one story of real life struggle is moving and impossible to ignore. Please send me your story about mental illness in your family or your own mental illness. You can use your name or write anonymously.”
In my case, I came to the realization that although very much impacted by serious mental illness in many of my family members, I rarely talk about what it looks like and feels like – to me. It is, of course, the biggest motivator towards my founding, “Grow a Strong Family” and developing an organization FOR family members to receive the information and support so desperately needed. I realized that there is a healing power to sharing these deeply felt emotions and as is said in 12 step programs, a problem shared is a problem halved.
When I was 5, my family moved from a veteran’s development in Flushing NY to live in my grandparent’s two family house in Bayside. This was a big move from a relatively crowded neighborhood to a quiet suburban community. My grandfather was retired and became a founding member of AA in Queens NY. My grandma was manic-depressive and in and out of the hospital. The move meant that my mom would take care of us (2 little girls, 5 and 9) and her mother. It was the time when Lithium was first introduced and little known about it. The state hospitals were colonies where the very sick would live out their lives. In the middle, there were the occasional “regulars,” like my grandma, who would become too sick (manic and not sleep for a week before plummeting to suicide attempts and then immobility or stay in bed for weeks on end) and return home when stable only to return as another episode would strike. It became our job to monitor grandma, call mom, mom would have her hospitalized, and then grandpa would get her when she was ready to come home, Mom would visit; us kids rarely. Throughout this, we did not talk about grandma or the impact her serious mental illness was having on us.
Fast forward, I went to college to become a social worker. Although my education has since taken many turnings, the influence of the suffering of my grandmother and the family silence left a deep scar in my soul. I wanted better services. I really wanted more efficient communication and understanding for our family. I wanted solutions that would support the whole family.
I danced around my calling, even with education, professional training, community work, and a strong focus on family until my beloved daughter was diagnosed with a serious mental illness at age 25. In the interim, other family members have been diagnosed, treated, and nowhere had there been a conversation about symptoms, treatment, or the impact on the family unless brought up by me and even then, rarely.
My daughter and I were very close; she was a velcro child. She was sensitive, sweet, creative, bright, had a great sense of humor, and she knew that she was loved and supported no matter what. Ours was a bond I’d dreamed about since I was a child and wanted to be a mother! We had similar interests, played games together, went on trips, shared music, and enjoyed a convivial relationship. There were times, of course, when there were family issues, and our family addressed them openly and honestly. We knew how to ask for and receive help. For example, after graduating with her BA, it was hard for her to find work. We supported her need to be independent while managing depression by providing financial and emotional support. Even with all of that, serious mental illness has a way of distorting relationships, causing confusion, and can tear loved ones apart.
When she was first diagnosed, she relied on me in ways that had never been needed before. There was a plea to “help me understand.” “Come to my med appointment with me.” “Help me with graduate school.” “Help me with my assignments.” It was hard for both of us since we were assuming roles we were not comfortable with.
At the time, she had an awesome prescriber who was excellent at explaining the symptoms, the illness, how to manage it, and recommended several pathways to health. She had a strong support system and the odds looked good for recovering from this first manic episode with little negative consequence. However, she was also making medication decisions that prolonged her instability. During this period, she recognized that she needed more frequent therapy sessions and her current therapist was unavailable. She needed me to help her find a therapist, which I did, and I made sure to emphasize that the work needed to be around this diagnosis and how to manage it.
By the time she finally ended up on lithium, to which she responded, “Why did I wait so long????” the nature of her therapy work changed and focused on historical family issues. Why any therapist would do this kind of work with an unstable client is beyond me, however, that was what was going on. Since my daughter was getting more clear, and the focus was essentially rewriting the past while in this state, a rift was nurtured between us. It went from, “I need space,” to “I hate you! You have never kept me safe!” The “space” grew.
After 6 months, I started a campaign to reconnect by sending funny cards and postcards, cookies and other care packages. She would email me and tell me to stop after about 4 months. She said, “I hate your attempts to buy me off. Don’t waste my time. I just throw everything away.” So, I stopped. At another point, my husband, her dad, was in the hospital and I texted her and her response was, “I don’t care.” A year later, her uncle died and I emailed her to let her know. Her response, “Send my condolences. I really don’t care.” In spite of all of this, I held onto the hope that she would stabilize and return. Her responses were very hurtful. I found myself alternating between extreme anger to deep hurt to overwhelming compassion because I knew that as much as I missed her, she had to miss me even more; I was the “always there” person for her and her illness pushed me away.
After a couple of years of silence, and then her defaulting on the graduate loans I co-signed on her behalf, I tried to call her to see about resolving this loan issue. With no response, I decided to send her the things that I held in storage for her. I did not want her to lose her childhood mementos just because I sent them. So, I used the name and address of someone she was in contact with as the “return address.” Oh, my! It caused such a ruckus. She took a restraining order out on me and dragged me to court to defend my self! That is also when I found out that she had changed her name! When I fist received the restraining order, I said to the officer, “It is very easy to stay away from someone you don’t know!” Alas. So, I brought a lawyer and we went to court and of course the order was vacated since there was no threat involved (except between her ears). As we left, my attorney said, “Stay away. No more contact. She’s not safe for you.” And I have. It has been another 2 years since that incident and there has been no contact.
I think about her everyday as I accept that for her, this is what her illness looks like. She has no family support. She has no ties to her own foundation. She has behaved unconscionably towards me. The illness has had her morph into a person I have no connection with, with a moral center that I do not recognize, and a way of being in the world that is anathema to me. And yet, I miss the daughter I knew and loved. I grieve for her everyday. And this is the way that it has been for me, with her. I want her to find her way back to me. I do not know where she is, what she is doing, or how she is doing. I don’t focus on it.
On the other hand, since I still have so much work to do, I am the primary support and case manager for another family member with serious mental illness. It is an uphill battle, and every day is a gift. Nonetheless, the work itself is made that much more difficult by models of care that do not acknowledge serious mental illness and the many needs it brings to the forefront due to lack of insight, resources, and ability.
I founded my organization because I needed to understand what was not being made clear to me as a family member. With so much focus on the identified client, the system she comes from is ignored. Can’t do that. The outcomes are much better for all when there can be open communication, factual education, and an understanding of how to manage illness effectively.
There is a shift going on in the delivery of services for adults (age 19+) in our state, Massachusetts. In addition to being more clinically focused with evidence-based programs, there is a bona fide “family focus approach and emphasize role of peer support.”
The new model intends to promote (my comments in italics):
- Active engagement and assertive outreach to prevent homelessness; since the vast majority of individuals with serious mental illness make up the largest quantity of homeless individuals
- Clinical coverage 24/7/365 days a year because symptoms and illness do not have a time schedule nor a predictive reckoning other than cyclic episodes and patterns; these come when they do and it is good to recognize that sickness comes when it comes.
- Consistent assessment and treatment planning Keep the focus on what is best at this time and consider what may be needed based on current behaviors or concerns.
- Risk assessment, crisis planning and prevention Best laid plans do not always work. Prevention increases the odds for improved outcomes. Having a plan and a go to increases everyone’s confidence in managing crises.
- Skill building and symptom management, The most essential skill for individuals with serious mental illness. Their families and loved ones need assistance with this also. Again, let’s look for improved outcomes, safety, and connection for all.
- Behavioral and physical health monitoring and support Collaboration is key and this model depends on it. Including family and loved ones needs to be emphasized, however, since we know that their loved ones matter to them.
- Addiction treatment support; So many of the seriously ill have co-morbid substance use disorders. They are part and parcel of the same human system. One cannot be treated without the other.
- Family engagement; WE know how valuable our input it. All of the research indicates improved outcomes when family is engaged. It is nice to see this vital component of care added to the re-forming of service delivery.
- Peer support and recovery coaching With the additional training that these like-minded individuals have, they are often in the best position to engage an individual with serious mental illness to move forward on managing their symptoms and embracing recovery. Like family members, tThey are an important bridge in treatment.
- Reduced reliance on emergency departments, hospitals and other institutional levels of care. With fewer beds, less restricted environments, and humane solutions, seriously mentally ill people can be offered the best opportunities for managing their chronic illnesses with the level of support and educaiton that they, and their loved ones, need.
The video below explains how the reforms were identified and the shift to this model which promises to be more effective than the previous community based model. Let’s hope so, anyway.
We are proud to have accomplished so much in the past year and we want to share it with you! So, we are scheduling a “Showcase” for Wednesday, August 29th. Light refreshments, handouts, raffle items, and opportunities to ask questions are in the works. More details are coming!
This Past Month: Highlights
May was mental health awareness month. It was also a month that featured many other initiatives for other causes so we are especially grateful to those who generously donated to Grow a Strong Family through our various campaigns on Facebook, through the website, and at the Red Heat Tavern.
The winner of the $25 gift card to the Red Heat Tavern is (drum roll), Sharon Connolly from Urgent Care!
We want to send a shout out to the Red Heat Tavern for hosting this event, giving us 15% of the food proceeds from the day, and donating the gift card! The community support is welcome and a win for everyone, not to mention that the Tavern is a great gathering place and has excellent food!
Grow a Strong Family was one of 15 mini-grant recipients from CHNA15 and we participated in their Annual Showcase. It was a good opportunity to be a part of a group of community organizations offering needed services to the community, supported by the generosity of CHNA15. After an hour of showing off our successful projects, we were treated to a panel discussion on Suicide Prevention. The keynote and facilitator, Jon Mattleman (https://www.jonmattleman.com/) did an excellent job of speaking to the diverse audience and increasing their awareness. One of the tools that he shared was, “Tell me more,” when someone says to you, “Life is not worth living,” or other suicidal thoughts. The panelists included Jake Cavanaugh, founder of the Nan Project (https://thenanproject.org/) whose mission is “saving lives and heal families.” The young adult speaker (http://mindingyourmind.org/) was from “Minding your mind,” and offered thoughtful discussion of the collateral impact when a friend is a successful suicide. Tom Denton, the Director of Guidance at Needham Public Schools and a Bedford Resident, along with Robin Krawcyck from Jewish Family & Children’s Services, Elder Services, rounded out the panel. Suicide and its impact on family and friends is not talked about enough. These resources are opening the discussion across generations.
We, too, have added two webinars on the topic on our website: Suicidality is a general discussion and education about the topic: https://growastrongfamily.org/suicidality/ and “managing suicidal behavior” gets to the nuts and bolts on actions that caring loved ones can take: https://growastrongfamily.org/managing-suicidal-behavior/
The group, “Replanting lives uprooted by mental illness: Support for families,” continues to explore the ways that families can build resilience and acquire the skills and tools needed to embrace better outcomes for everyone in the family. The focus of this past month was on “Coping when loved ones are symptomatic: This session explored several resources for family members to manage more effectively when their loved ones are symptomatic. How to detach, with or without love, in a healthy way. What is reasonable to do? What boundaries make sense?” For more information, click here and see both our televised production and our webinar: https://growastrongfamily.org/coping-when-symptomatic/
The evening group discussed Family CPR Specific activities that families can employ when faced with a loved one’s symptoms.
Replanting Lives is a FREE group that meets the 2nd Tuesday morning, 10:30-noon, at the Gleason Public Library in Carlisle MA; and the 2nd Wednesday of every month from 7-8:30 PM at the Bedford Council of Aging at 12 Mudge Way,Bedford.
Directions to the Gleason Public Library in Carlisle are easy since it is right on Route 225 in Carlisle! Directions to the Bedford Council on Aging: take Great Road to Elm Street (between the Bedford Fire Dept and the Unitarian Church). At the end of Elm Street, there is a stop sign, go right and then bear left (there is a sign showing the COA is to the left). There is a large parking area. When you walk in the building, go straight! You are there!
For questions and to register (recommended), please contact Mara Briere at 781-405-8376 or GASFInc@outlook.com
In association with the Gleason Public Library and the Carlisle Council on Aging, we are offering the following events FREE, at the Gleason Public Library, 10:30-noon.
Replanting Lives Uprooted by Mental illness:
Tues June 12: Three legs of a triangle: managing crisis without succumbing to crisis. This discussion focuses on strategies to increase safety, apply “family CPR: compassion, (parental/partner) guidance, reassurance,” and tools for defusing family stress.
In association with the Bedford COA and the Edinburg Center and Central NAMI Middlesex, we are offering the following events FREE at the Bedford COA on Wednesdays from 7-8:30 pm:
Wednesday, June 12: The 7 C’s This session explores the helplessness that family members often feel in the face of chronic brain disorders. How can the conflicting ideas that tend to occupy caretakers and family members be demystified? Journeying on the 7C’s offers the insight and understanding to accept “what is” rather than founder in a sea of misinformation and “what if.” Let’s right our boats together!
SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE
Share In the Grow a Strong Family Showcase! August 29th!
The Showcase features Grow a Strong Family’s mission to bring comprehensive multimedia programs to the community in a variety of online and in-person formats. Our Showcase is your opportunity to network, gather new ideas, learn about exciting projects developed by Grow a Strong Family, and be a part of what is going on in your community.
This has been a battle cry of educators everywhere. And, as a society, we recognize the costs of ignorance by socioeconomic factors. In general, people with less education do not earn as much as people with education. This affects housing, community development, lifestyle, and crime.
Well, this is also true of the issues surrounding stigma and mental illness. According to Wikipedia (clearest definition I found), “Social stigma is disapproval of a person based on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society.” In World War 2, Japanese Americans were stigmatized. During the 1950’s, Russian Americans were stigmatized. Throughout history, groups of people have been stigmatized including gypsies, Jews, Christians, Muslims, Gays, Blacks, and the list goes on. In medical treatment, the list has included individuals with developmental disabilities, missing limbs, deformities, diabetes type 2, cancer, mental illness. Eventually, many of these groups were able to move from social stigma to social acceptance through campaigns aimed at education and solutions.
Grow a Strong Family has determined that its mission is to educate and support families uprooted by mental illness. Through our comprehensive multimedia approach to education and support, it is an effective antidote to the ignorance that represents itself as stigma. We offer families solutions in the form of information, strategies, resources, and ongoing support. This enables families to advocate more effectively for their loved ones and demand appropriate change in attitude and treatment options.
In our current culture, once an individual is determined to be an adult, around 18 years of age, the family is summarily dismissed from the care and treatment of their loved one. The irony is that the onset of most mental illnesses is in the transition age years, between 14 and 30 years of age, with the more serious illness like schizophrenia and bipolar disorder in the earlier end of the spectrum. We expect these individuals to make decisions about their care with their brains that are not working properly. Consider, if you will, allowing someone with a dementia or a traumatic brain injury to make their own decisions regarding their care. The brain that is used to discriminate is not able to. We would no sooner let a loved one with a dementia manage their own medications and environment due to safety concerns than we would a toddler. This is what we do to individuals with mental illnesses. Worse, we exclude their family members from information and options due to the misused Hippa Laws (may that be changed very soon).
Untreated and under-treated mental illness leads to instability. Instability looks like verbal and physical abuse, violence, homelessness, substance use, prison, and other undesirable outcomes. The solution lies in supervised living environments, assisted outpatient treatment, mandated medical compliance, and family involvement. Research consistently shows that when families are involved as team members with service providers who know how to treat the seriously mentally ill, the outcomes are significantly better than without family involvement.
Grow a Strong Family encourages better outcomes through our comprehensive menu of online resources, available whenever, however, and wherever families need them. We understand the crucial role that families play with regards to caring for loved ones with serious mental illnesses. Every family has someone who is unwell; support them. Learn. Educate yourself. Then, you can offer them the social support they need!
May is Mental Health Awareness month. Begun in 1949 by Mental health America, it is the most recognized mental health awareness event in the nation. This year’s theme is: Fitness #4Mind4Body. It highlights the importance of Physical Health in achieving Balanced Mental Health.
We are running a fundraiser with the Red Heat Tavern in Bedford MA to support Grow a Strong Family’s mission to partner with families uprooted by mental illness through comprehensive multimedia programs. The Red Heat Tavern is a gluten-free establishment that provides healthy and delicious food choices. So, bring this newsletter with the flyer with you and eat in or take out on Tuesday, May 15! Support Grow a Strong Family and this month’s theme of healthy living!
Read more here: May 2018 Newsletter
Instead of using Mental Health Awareness Month to teach the public there is stigma to mental illness, let’s focus on demanding politicians create more housing, more clubhouses, more rehab programs, hire more doctors, build more facilities, and make transportation options available to those who need them. Let’s fight for more research, more hospitals, easier access to Assisted Outpatient Treatment (AOT), and laws that prevent someone from becoming danger to self or others rather than requiring it.
What do we really need? Consequences of the status quo