(7-30-18) Sadly, I receive too many of these poignant emails from parents.
Dear Pete Earley,
I’m the mother of a daughter with a mental illness.
Like many, her diagnosis has changed over time. We have heard Schizoaffective disorder, Bipolar disorder, early on schizophrenia, and a wide variety of other possible diagnoses, different illnesses or conditions. After so many years of varied diagnoses, as parents, our focus became less on what the diagnosis was and more on how do we best help our daughter to live and function her best today.
She is now 30. We have worked with varied providers, treatment programs and living situations since her later high school years. Her story is similar to many with recognized difficulties occurring throughout her transition to adulthood. College attempts were difficult – after her previously being a bright and outgoing young person.
During her time in college, we found the National Alliance on Mental Illness for help and support. And, at most times, it has provided both. We have become involved with our local affiliate, as board members, helping to facilitate our local support group (which includes both family and consumers because we are smaller and don’t currently have separate groups) and I have both taken and now help teach Family to Family.
I’m writing because I imagine there are many like us who struggle to find our voice lately in the void between NAMI’s structure, our own daughter’s current status, and a fear that our speaking out might make difficult our hoped for contact with our currently unheard from daughter. We fear speaking out in case she is getting help today or does one day, and would be angry that we spoke out.
I know from teaching our class and attending our support group that we are not alone in this feeling.
You see, she has not contacted us in awhile.
We went from her working with us and her providers to little to no contact and now just nothing. This is and was the daughter who used to call multiple times a day, was mostly loving and saw us as part of her support system and structure.
Somehow, we watched her spiral through a downward serious of problems, that included hospital stays, taking her self across country, the possibility of the additional status now of dual diagnosis, paranoid moments that took her away from us and left her unable to see us as part of her support systems. Until recently, she had the added support of my husband’s insurance as she had been diagnosed with a medical diagnosis that allowed her to stay on our insurance.
She rolled in an out of a variety of relationships with people.
Some we knew, and in more recent years, some that chose not to connect with us. She developed a repeated desire for a different doctor to work with and began doctor shopping for a different diagnosis or medication.
We struggled to try to still help with necessary paperwork and still helped pay bills beyond her capabilities with SSI payments and the occasional jobs she had tried to hold. When we saw whispers of hope that she was doing better and perhaps again working with her providers, we were repeatedly saddened to see/hear that things had tumbled apart again.
She had relationship struggles, struggles with her providers and then trouble with the police. There were repeated car troubles, the added trouble of police calling us knowing something was off. By this point, we were not living close by where we could show up to help, and some of the calls a year ago left her in and out of a jail, bonded out by a grandparent – a DUI that I’m not sure was ever officially handled. She got further involved with situations that included totaling cars. Traveling again out of state with people. Our chasing the situation with difficult phone calls…. some with her, some with local 911, police, health providers, shelter staff, etc…
Somewhere along the way what had once been a working relationship became a series of only sad or angry calls followed by ever longer gaps of no contact.
Along the way we tried to reach out to local medical providers, police and other service providers whenever we had numbers and names with varied responses. Often we received unexpected random calls from all the above. Several times we had wonderful people that really were trying to help her. Some trying to let us know she was just okay for the moment, some, I think, hoping we would have opportunity to pickup and take on a stronger role with conservator responsibilities. Whenever we even explored that option we were thwarted by the fact that she kept crossing state lines and any help of that type would mean having a series of things prepared to catch her at her worst moment while in a hospital. Once she was stabilized, she was smart and capable enough to not allow us to take such a role.
Her psychosis often seemed focused on people conspiring against her, gangs gaslighting her, and over the last year seemed to include us as part of the people against her or trying to harm her. The thing is, I do think that many individuals have taken advantage of her, perhaps being a bit after her (her choices of drinking, possible drug use – I’m really not sure where that is the problem , drug abuse ? Maybe,… Self medicating? Probably… Pot use? Most likely). Regardless, she was not healthy the last time we heard from her a few months ago.
I miss the young daughter that I remember before this illness took so much from her and our family.
I miss the young woman who we knew a few years ago, struggling but mostly successful at working with her providers ( and us) and at that time working to develop her best life with her illness monitored and managed by herself and a team of individuals.
I still hope we may get back to that time.
She once attended our local NAMI meetings, attended a variety of trainings and sat on our local affiliates board. Then – as her difficulties took her away from us and her local trusted friends, family and medical providers – she also grew a dislike and distrust for NAMI and other support programs, all of whom she saw as against her.
Our current system that seeks to protect individuals also makes it hard for parents, like us to help an adult child. It makes some providers unable or unwilling to talk with us. It makes us have to explain our situation repeatedly to police that may or may not have her best interests at heart. It has depleted large portions of my emergency funds. And caused me to leave other bills to credit cards leaving us further in debt than I would choose. It has left me, while she was local, running behind cleaning up messy apartments when she moved afraid to return to a place where people were after her. Working to clear up bills and college classes she signed up for but then was unable to attend because of her hospital stays followed by leaving the area. She bought pets with current people she was in relationships with, then was unable to take them as situations didn’t work out. I have some of those pets, but I am done taking in pets for others.
Sometime last year her insurance coverage with our insurance came up for re-evaluation, of course no one would talk with us to provide help to maintain that insurance, so during some of her worst state she lost that insurance.
When she lived near us she also had Medicaid, but crossing state lines repeatedly, means there were times when she was applying for Medicaid in new states and, at times, was uninsured. I’m no longer able to help in that area. Any powers of attorney that we had in the past have long since expired and what was once a cooperative spirit to work with me is not present for helping with the billings.
At first I made every attempt to provide our insurance info to hospitals or other providers when I would receive a billing or get a phone call, but now I can only ignore the calls and mailings or tell them we have lost contact with her, which is true.
I’m not sure, at all, where she is.
I worried this winter when it was cold or snowy, when it rained, when the summer heat became extreme. Is she with someone?… is she in a hospital?…is she in a shelter?… is she homeless and surviving on the streets?
If we do hear from her, what would we do? Her last contacts with us, left us frightened for her and sadly frighten of her.
We are missing what is happening with her, to her, and in general how she is doing. She has missed time with family, marriage, births, deaths of family pets, other family joys and difficulties.
I hate that our daughter once so loved and connected to us and her extended family is missing from our lives and we are all worried about her.
I’m preparing again to teach NAMI’s Family to Family this fall.
The few times I have taught it most recently, I have felt a bit like a fraud. Can I teach this class when things are not going well for us? When we are not a “success“ story?
After some thought each time over the last three years, I have chosen to teach.
NAMI and mental illness is not all a happy story, we are all part of the mix. We still need help, support and advocacy for our voice too. The difficult parts – the ones that sometimes butt heads with other parents and consumers that don’t think we are doing it right. I know in Family to Family we talk about becoming our own experts. I do think we have to choose our own path. I don’t feel an expert, but I do feel like I have to make healthy choices for me.
I can’t spend every day or moment crying like some thwarted helicopter parent, as some have accused those of us trying to help our loved ones.
She is never far from my thoughts, but our life goes on.
I just am so sad that the system seems to wait for my daughter and others like her to fall to their worst, before they can get help.
Many say it is a family or local churches responsibility to help these ill. But that doesn’t work when their illness carries them frightened away from you. Where was our chance for some type of an intervention? Where was a Dr. Phil eager to help with some group ready to spirit her away to a retreat or a hospital stay long enough to truly stabilize her so she could gain insight to an illness that currently has her in denial? Where is our Voice at NAMI? Your writings and those of others shared in your recent posts about family with SMI, speak to me.
I don’t know her current diagnosis, but I suspect those we heard in the past are probably relevant. I want to help, but I don’t know how to help.
Her dad and I work to maintain our thoughts and a consensus on how far we are willing to go emotionally and financially to help her. We also struggle with how do we handle this, not knowing how or where she is. Is she alive? Is she some unfound or unclaimed body somewhere? Is she being helped? Is she being trafficked? Is someone loving her? Is someone finding the smart young woman I know is still inside her? Will we hear tomorrow? Next week? Next month? Next year? Never?
I have had this email in a draft, working on it a bit over several days. I would love to fine tune it. Keep editing. Find a better way to say what I’m trying to say, but if I keep changing too much I fear it will never get sent and I am losing the fire of the feeling that made me start writing this last week.
I’m sure you know that there are many more details then I have shared here. But my goal is not to share every bit of our story, just the need for having a voice out there and the continued frustration with our inability to help the person with seemingly anosognosia and my sadness and missed opportunities along the way to help our daughter and so many others out there like her.
I add my name here for you because I am a real person. I cry sometimes. I am lost as to how to move forward much these days. In the meantime, I’ll go back to our support group and board meetings tomorrow and begin planning to teach another NAMI Family to Family class this fall.
I still have hope. We must always have hope.
(As always, I have verified the mother’s name and address.)
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