What happens when no one cares for the caregiver

I’m tired. No I’m more than tired. I’m exhausted. I’m depleted. No amount of self care (bubble baths, walks, therapy, lunch with friends, reading a book, etc.) is going to “fill my cup” and bring me back to where I need to be.

I’m not alone. Many people are. Those who are caring for individuals with disabilities or aging parents are in the same place I find myself in. No one situation is the same. And no one situation is worse than another. But the fact that we are even in this place is a result of years of policies by governments that have attacked the most vulnerable in our society. And as a result those who look after them are now suffering.

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December 3 was International Day of Persons with Disabilities. I watched politicians post message after message about their commitment to improve the lives of individuals with disabilities. From where I’m sitting, the only commitment I see is to continue to attack the social systems that “support” (and it isn’t even close to being enough anyway) people with disabilities and the people that care or support them. Yes, some people with disabilities are leading productive lives and have successful and full lives. Many after years of struggle. Some caregivers are managing. But not all. And I see far more struggling than succeeding.

Caregivers are worn out and exhausted. Now I’m only speaking here about my experience as a caregiver and from my perspective. But so many people are at the point of utter and complete despair and exhaustion because there is little help.

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Years of advocating for services and supports has worn many down. And advocating is the nice word. What caregivers do is “fight.”  It is not the occasional advocating or “fight”, it is constant, day in and day out, year after year, pleas to get services and supports. We are labeled as the “crazy” parent. We are dismissed. We are told nothing more can be done. We are told to hire lawyers or professional advocates or go to the media with our stories. But would you like to have to go to the media with the most intimate details of your lives? Why should we have to lay bare our lives to get the most basic services and supports other people get.

Our needs are not basic. They are not typical. They are specialized. They require thinking outside of the box. They require a little extra or a lot extra. But are our lives worth less?

Even when we get services or supports, we usually have to educate the professionals. Most have no idea about FASD or think about it as a behaviour or mental health issue. And that not knowing can cause further trauma or damage. I am grateful for those professionals and organizations who know and who work so hard for individuals and our families. I don’t blame the other professionals for not knowing. Many haven’t been taught. We weren’t taught either before becoming parents. We didn’t and they don’t know because of a systematic failure of our Society to acknowledge and accommodate people with FASD and their families.

We live in a culture where success and failure are defined as consequences of personal behaviour. But those considered “failures” are actually demonstrating the success of deliberately formulated policy that has systematically ensured that workers, women, Indigenous peoples and other non-elites could never get too close to power.

That policy was never advanced too suddenly or dramatically. But step by careful step, excluded groups were pushed farther from equality and control of their own lives and taught to blame themselves for their poverty and illness and inability to raise their own children.

Step by cautious step, well-educated and successful people have duly voted for laws keeping the poor in poverty and the rich in wealth.

Canada Life Expectancy Plateau

For FASD specifically, it is about the corporations that produce alcohol and ignore all the evidence of the harms it creates for Society. It’s about the lies we have been told. It’s about the huge profits that are made from the sale of alcohol for not only the producers, but all the people that work in that industry and the governments that benefit with tax revenue. However, the people that get addicted, the people that become victims of crime because of alcohol, the people that are born with a disability caused by alcohol … all these people are blamed for their circumstances. While the ones who could do something, do nothing.

Wouldn’t it make more sense to fund Prevention, Awareness and Support than reactionary costs? The most recent study (using the old 1% prevalence however  – not current 4% estimate) suggests:

The cost of FASD in Canada is $9.7 billion a year:

  • justice accounts for 40%,
  • healthcare 21%,
  • education 17%,
  • social services 13%, and
  • others 9%.

Costs of Fetal Alcohol Spectrum Disorder in the Canadian Criminal Justice System. Thanh NX, Jonsson E.

Yet in Alberta, they have determined for each prevented case of FASD, Albertans save about $800,000, which is the extra cost of FASD when compared to how much it costs to support the average Albertan during their lifetime. These studies exist, but despite our best efforts to get our government to listen, we are told there is no money.

Just yesterday I saw CAMH release a new campaign: Game Changers for Mental Health. One part was targeted at youth and alcohol awareness. In the four or five posters developed only one had a small mention of not consuming alcohol if you are pregnant. No mention that if you consume alcohol while pregnant you put a baby at risk for one of the most common developmental disabilities. No mention of male contributions during conception. So again, we as parents and caregivers have to advocate with organizations that should know better, to help prevent more babies with FASD.

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A prevention effort, in Ontario, called Sandy’s Law, introduced in 2005, has a requirement that signs be displayed wherever alcohol is sold or served.

FASD Provincial Warning

LCBO has created one warning poster.

It has not been updated in 15 years! It does not name Fetal Alcohol Spectrum Disorder. The fine for non compliance is one of the lowest. A parent brought Sandy’s Law forward. Parents and caregivers are the ones reporting non compliance. And caregivers are the ones asking for an update and increased fines.

Our daily lives are impacted by a substance that others profit from but are not held accountable. Not one penny from alcohol supports FASD prevention, education or programs. We discovered a hospital in Ontario is receiving funds from the Province it says for FASD research. Further investigation revealed no such research. We have a government that wants to promote buck a beer and open up access to alcohol, yet take no responsibility for the damage it leaves in its wake.

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Fifty years after FASD was named we are still fighting to be heard. And fighting to get services to ensure a quality of life for our children and adults.

We are splintered and fractured. We have no provincial or national voice in Canada who will champion our cause. The stigma and shame run deep. We have children being diagnosed with other conditions because of that stigma and because there are programs and supports for other conditions. But the programs and supports for those other conditions are not helpful for our children or adults. Trying to support someone using an approach meant for something else creates more trauma, failures and sometimes dire consequences. They meet with failure because they are not based on what people with FASD need. Costing money and lives.

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As much as our individuals face failure after failure from lack of accommodations and thus misunderstandings, our caregivers are faced with trying to cope on their own and facing failures and misunderstandings. There are very few parenting programs for these children. There are basic courses, but nothing in depth like caregivers require. And if there are, they cost a lot of money. And that sets up a system of the haves and have nots – of the ones that meet success because they can afford it or live in an area with programs versus the ones that can’t or don’t.

Many of our families are on their own or with very limited social supports and networks. Like our children have trouble with maintaining friendships, we have trouble maintaining friendships. We are judged for our parenting. We are told we are too strict. Or not strict enough. We are told “my child would never get away with that” …. we try to explain the invisible disability…. but to no avail. Most people fear what they can’t see. Or fear what is different. So our friends eventually stop coming over or inviting us out. Or we stop interacting because it’s too painful to hear about the successes and milestones their children or adults are achieving. Extended family members are no different. Even spouses and marriages or relationships are strained under the weight of caring for an individual with such complex needs without support.

So here we are. The education system does not support or accommodate the majority of our children, unless we “fight.” However even if we are successful in getting supports and accommodations many of our children are either damaged from years of being misunderstood and labeled or they are bullied to the point of self harm and even attempts or suicide. We are exhausted from dealing with the anxiety and stress of morning refusals, calls from school to pick up or melt downs at the end of the day because of sensory overloads or from them holding it together all day. To the point many of us have had to quit jobs and/or homeschool.

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Even if our children are at home, that doesn’t mean our lives improve drastically. We are still faced with managing and navigating in a world that doesn’t understand FASD. We have specialist appointments. We have to try to investigate unique ways to help our children and adults because there are few FASD informed services. And FASD is a whole body disorder. There have been 428 co-occurring conditions identified. When we do want a break, if we do get time, because we are told to look after ourselves, we have a difficult time finding people to look after our children. We can’t just have the neighborhood teenager come over for a few hours to give us a much needed break. We need to find specialized respite providers who if not knowledgeable about FASD are at least aware of developmental disabilities. But that is if we are lucky to find one. And even if we are, many do not stay. And that provides further disruption for our children and ourselves.

Most of our children can not join clubs or go to regular camps. These are opportunities for other parents to get a break. Specialized groups do exist but many are expensive and far away. Disrupting routines causes anxiety, so many times even a family outing or vacation is out of the question. That’s even if you can afford a vacation because you are no longer working or on limited income.

Most parents have their child’s high school graduation to look forward to. Many 18 year olds are on their way to apprenticeship programs, college, university or simply a job. Many typical 18 year olds are able to move out. Not our children. Not too many of our children are ready to leave home at 18. And it’s not that we begrudge that, but society expects that our children magically mature at 18. And so if we thought parenting a child with FASD was difficult, that is nothing compared to supporting an adult with FASD. Even if your “typical” adult still lives at home, many contribute. Many of ours take much longer to mature, and we cannot expect them to take on roles they are not ready for.

Again, this is not the experience for everyone. But it is for many. So we have a chronological 18 year old who may be at a skill level of someone younger. But now we have the “I’m an adult, I can do what I want.” So now we have a delicate dance of trying to let them grow, develop  skills, explore their world … while trying to maintain their safety. But now they are 18, they are adults in the eyes of Society and responsible for themselves. We lose any financial support we may have been receiving for them as a child. And we are expected to now just pick up our life from where we left off.

In my case, I was at home for 10 years. I had a couple work at home contracts in that time but nothing steady. I left a management job in 2009 to start as an office clerk in a 3 month contract job in 2017 (all I could find after looking for work for a year) that paid $12.24 an hour for 20 hours a week. While I was at work, my daughter stayed with my mom. I managed to get another 6 month part time contract. But then that ended. By now my daughter was 20 and had not received any adult services. But despite her not being capable of staying on her own, and not being able to access any supports during the day, I still needed to provide for us.

We tried doing a job together. I thought it was a good way to get her the support she required to work, and we would both earn money. How many other parents have to work with their adult to support them because they can’t do a job solo? We got a job doing donation bin pick ups. It was flexible and I thought perfect. But it was a disgusting job. It was too overwhelming for my daughter to find bags of feces, broken glass, semen stained underwear and boxes and bags strewn outside the bins. So we gave that up and I took on a full time job. And while I felt lucky to be working for a decent wage again, my daughter’s mental health suffered. She was at home 45 hours a week doing nothing. We live in a rural area which makes it difficult to participate in anything. But again, she needs that adult support. My 74 year old mom was left to take her to manage her daily care.

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So here am I. Ten years of raising her. Any support I had gone now she has turned 18. Still no extended family support. No friends. My 74 year old parent having to be a full time support worker for her granddaughter. 
I am working full time. Trying to cope with office procedures that are 10 years more advanced than when I left. I’m 10 years older. I’m commuting an hour each way.  I still have a house that requires regular maintenance and upkeep. I can’t rely on my mom to manage everything so I’m still trying to manage my daughter’s life. I still have to advocate for her. But now her mental health is spiralling being left day in and day out with nothing to do. My mom is aging. Has her own health concerns. Is overwhelmed at the full time responsibilities of an adult with a disability. It isn’t going to be long before our worlds come crashing down.

The anxiety and depression I had managed to keep at bay came crashing in and pulled me under. Making me more susceptible to any nuances at work or at home. Any refusals by my daughter were amplified and triggered reactions I thought I had overcome. Flashbacks to the rages and extreme difficulty we had years ago cursed through my body and I went into fight, flight or freeze mode.

And during this year I watched a new government come into power that promoted buck a beer and easing access to alcohol above social programs. That decided it could spend millions to cancel contracts made by the previous government that it didn’t want, but slashed costs to social service programs. I watched as they gave themselves raises and increased housing allowances and hired high priced consultants but cancelled a basic income pilot to help lift people out of poverty  and a planned increase for our financial disability support program. I watched as they awarded contracts to corporations to create “jobs”  but refused to look at improving lives of people with disabilities by not addressing the number of people on waitlists for services. I watched as one disability is mentioned over and over again, and FASD which is the most common cause of disabilities and affects the most people, is pushed under the rug.

When we tried to say, hey let’s include all disabilities – people said, get out there and advocate like we did. You have to fight for change.

We have been out there. But we are dealing with alcohol.

But why do we have to fight for change? Why can’t we be decent human beings and support people that need support no matter what their diagnosis. People say we can’t afford to carry these people. I say “these” people? Is it their fault they were born with extra needs? Why are their needs extra? They are just needs they require. So you don’t require those, does that mean they shouldn’t get their needs for basic human rights met? If we looked at supporting people appropriately with services they require, costs will go down in other areas and it won’t cost as much.

For instance, a recent housing report revealed:

Evidence from the nationwide housing-first demonstration project, At Home/Chez Soi, found that $10 invested in housing-first services resulted in an average reduction in costs of other services of $9.60 for high-needs participants and $3.42 for moderate-needs participants. Over a two-year period, every $10 invested in housing-first services resulted in an average savings of $21.72.

And that’s just housing!

Why is that so difficult for people to see? Because when we don’t support “those” people, those people that support those people now become “those” people and require support. We need a radical shift in Society. We need the old structures that promote profit over people to tumble. There is nothing wrong with working hard to create a better life for yourself or your family, but what if you can’t even get a foothold because there is no space in the current  system to allow them to succeed.

But again, I digress. An article called The Dismantling of a Non-Profit – A Bird’s Eye View of Traumatized Adoptive Family Systems published in August 2019 speaks to what I’m trying to say, in a way I can’t even begin to express as well:

And then it fell apart.  One by one the people around me simply walked away. People who rose up to take their places appeared for a moment and then disappeared as well.  They ghosted.  They stopped showing up for the work and the discussions and I found myself standing alone in the middle of a promise without a rainbow. Right back to the start of this project where I felt alone, abandoned and in the midst of an impossible mission. 

What we never talk about is the resiliency of caregivers.  How do some caregivers come out of these battles still intact and ready to help others  and why do some simply shrink away the longer the problems persist? 

Therapeutic parents are walking wounded with wounds that nobody sees except those also walking the same path. Many of us can’t do this anymore.  We have no resiliency.  And if we do survive, the first thing we are energized to do is build a new promise for ourselves and our families – not enter back in to the fray to pull others out.  Because doing that may suck us back in and nobody goes there willingly.

Every day I read dozens of stories inside support groups of parents who are just barely hanging on.  There are a few bright lights shining and encouraging others to find new ways to parent, new energy to support self-care, and even strong actions that need to be taken in order to be heard.  But the people who need it most, are too tired, too scared and frustrated and angry and distrustful to hear it.  These are the people we tried to serve.

I want to state if it isn’t clear, I am trying to open up and be vulnerable and let people peek in on the lives of some caregivers of people with FASD. I cannot speak to the experience for those with FASD. If my life is difficult, their life is amplified in ways we will never know. More people with FASD are speaking up and out and that is amazing. But we need Society to listen to our voices and their voices and then work with us to make lives better.

What would help me not be so exhausted and suffering my own mental health issues as a caregiver?

  1. To have FASD informed professionals.
  2. To have FASD Prevention, Awareness and Support programs in education, health, justice and social services.
  3. For my daughter to be supported so she can lead a productive life and pursue her interests.
  4. If that support cannot be provided by a worker or agency (so I can continue to work and pursue my interests) then the ability to be her full time support person so we can work together and contribute.

You can also read more about what wishes I had for FASD and my daughter in this blog post from a few years ago 12 Wishes for My Daughter and FASD  and 12 Wishes for FASD: A Year Later.

I also encourage you to take 10 minutes to watch this video Hopes and Challenges: Fetal Alcohol Spectrum Disorder created by Jeff Noble for a CanFASD conference. It is a variety of caregivers speaking about their biggest challenge,  their hope for the future and what they want professionals to know. It’s profound. 

My daughter started her advocacy efforts when she gave a note to our Prime Minister two years ago asking for help. You can read about that here: A Letter for the Prime Minister of Canada

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I was part of a Advocacy group – the Ontario FASD Action Network –  that was created last Spring to break down silos (yes there are even silos in our FASD world) and try to unite the voices of people with FASD and their Caregivers. We met with our Provincial Minister of Children and Community Services in August. We brought forward voices and recommendations from across our Province.

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We are only a few of many who are speaking about FASD. Many have been speaking since 1973. That’s almost 50 years of advocating. Many are speaking in their towns and cities. In their provinces and across the country. Many have participated in Roundtables. Many speak to the media and other groups. Many have conversations everyday. We are helping others while we raise children, support adults and try to live our own lives. But no one is listening to what we need for FASD. We are frustrated. We are angry. We are scared. And we are exhausted.

 

6 thoughts on “What happens when no one cares for the caregiver

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