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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

 
March 2016
Wading through the mental health care system
Mar 28, 2016 12:00 PM

I have been desperately assisting my husband, a father of three children, navigate through the mental health care system while he has been in a mental health crisis since the beginning of March 2016.

I knew this time would come. I didn't realize how much I would be solely responsible for managing his symptoms, safety, his dissociated, depressed, agitated and delusional states. I didn't realize that when my husband actually surrendered to the impact of his horrific chronic childhood abuse, his life would be left in my hands alone. When this time came, I felt so hopeful. I felt once the awful memories would start coming into his conscious mind he would finally be given the chance to heal. Somehow, I presently am unable to work because my husband is unable to retain information, or be aware enough to describe what he is experiencing, or is so ashamed he will not describe his pain and loss of control. He is either extremely depressed and cries all day, or wakes up extremely agitated and enraged. He has moments he feels his thoughts are out of his control. I see these moments and his safety is out of his control. This becomes my responsibility.

I have no idea of  the triggers or when these moments will come. I never imagined he would experience any of these symptoms, that I would be his sole caregiver, or that I would have had to have to stop working. While my husband is making 60% of his income while providing for three children. I'm also struggling; how to minimize the traumatic exposure of my husband's illness on the children. My eight year-old son says to me, "mom, be careful with dad, he will start crying", or "mom, dad’s not the same". My husband used to play, laugh and be silly almost always. Now he could sit in the living room with our children and does not say a word or interact for hours.

Our son has not been sleeping. He comes down to our bed and snuggles up with his dad and just can't sleep. As for my teenage girls, they ask why he is always angry now. They avoid him, I see their concern for him and for themselves because my time is spent finding my husband treatment, a safe place for him to heal without his children watching. When we moved to Guelph, he was becoming increasingly disabled. He was put on a waiting list for a psychiatrist, minimum one year. He was struggling and he needed medication to manage his thoughts and mood. At that point he was diagnosed with major depression and ADHD. The doctor decided to send him to Toronto to be assessed at the ADHD/Asperger’s clinic ($1,200 on the credit card). The assessment concluded he has severe ADHD and PTSD from his childhood abuse. They said they could not help him until he received treatment for his PTSD. Our family doctor at least felt more comfortable treating him with an assessment. He admitted his knowledge of ADHD in adults was limited.

We found an adult ADHD support group ($25 per session) that was very informative. It helped my husband feel supported and less isolated. However, his ability to use the tools he (we) learned were not accessible due to his crippling anxiety, depression and brain damage from experiencing chronic abuse and neglect. So we tried the same counsellor for intensive individual cognitive behavioural counselling ($130 per session, twice a week on the credit card, not covered). It was debt we couldn't afford, but he was desperate to function. He was practically unable to maintain daily household and family responsibilities. I always wondered how he kept a job, but he was often laid off, or he left most jobs because he seemed so overwhelmed, made mistakes, causing employers to become very frustrated. We now know anger and frustration is a trigger. He becomes emotionally paralyzed and has made many errors during these moments. They increased as supervisors and other employees became more frustrated with him, but he kept working.

Many times in the past he took himself to the emergency department because he couldn't manage the shame and embarrassment. He would find a new job and try again. His counselling became overwhelming, I was asked to attend so maybe I could assist in his "homework" at home. I could help him remember what he needed to do, stay focused and motivated. This became unsuccessful and a financial burden. Our doctor said he had an available psychiatrist and we jumped at the opportunity. He had been charged with sexual assault of a patient but we couldn't wait a year and were desperate. He put my husband on new medication that included high doses of ADHD medication and medication for anxiety and depression; they were increased weekly until his new diagnosis. It was this moment that sent my husband into crisis.

Our doctor told me first that he was unsure if my husband could handle his new diagnosis - he told my husband that he had Dissociative Identity Disorder. He told him it was unlikely that he could find someone to help him and gave us the referral he was aware of. They were unavailable, however, a nearby mental health clinic had a PTSD inpatient program. My husband then told the doctor that he wished he has told that he had a brain tumor. I thought it was a bit extreme, but now, while I am writing this, he would have had a better quality of life because our insurance would cover that treatment. He would have medical support, a treatment plan and a possible date to return to work. Presently, we have some outpatient educational groups that offer tools to manage stress and flashbacks, and two of six sessions left with his psychotherapist, one of which he missed because he was too depressed to get out of bed that day.

My husband began having extreme difficulty at work. He always did, but something happened and he broke, so he was sent home. A week later I woke up and he was pacing around the room, scattered and agitated. He was supposed to take the kids to school because I was sick but I didn't feel he was safe to drive. The rest of the day he just cried uncontrollably. He became so agitated he was frantically writing in his journal. He was panicking. He thought he saw something, but I had to tell him that it was not true. My parents watched the kids and I took him to the emergency department. Earlier he had called a 24-hour crisis line, and he had to leave a message and was called back a couple hours later. It was too late. He was admitted, his medication was increased and ADHD medication was decreased. He was told he needed intensive inpatient treatment, and that he would be admitted to a nearby mental health program in a week or two for one program if his benefits covered it and another if not. He was told he could stay admitted if he wanted but we felt we could manage that short time with him home, if not we would return - we had a plan. But we then found out that our benefits didn't cover the whole program, and we needed $8,000 for him to be admitted.

He was put on the urgent list allowing him to be admitted immediately but not without the outstanding $8,000. I asked the clinic if there was a payment plan but they it had to be paid upfront. So, I contacted his human resources. The sent his file to acclaim for further assessment. Our family doctor sent a letter indicating his present symptoms were severe and we were told we would get a call from a caseworker the next day. A week and a half later we got a call for a phone assessment from a caseworker from "back to work services” in British Columbia. She said he needs intensive treatment for him to return to work. She called everyone that had seen my husband and would try and figure out how to get him admitted. He were hopeful... again.

When my husband was discharged from the emergency ward, the medication seemed to have concerning side effects. We had his psychiatrist appointment the next day, but when we arrived we were told he had retired. We were supposed to be called but this didn't happen. Now we have no psychiatrist. The family doctor is decreasing his medication due to the side effects and will find out in two months if there is an available appointment; however, we figured he would receive that assessment and treatment in the clinic that required an $8,000 fee.

We got a call on Thursday from the caseworker and she informed us our funding for the mental health program was not approved. He was approved for immediate admission but not for financial assistance. We can barely afford our rent right now. Our debt is out of control because we are paying for medication at full price while my husband was without benefits for his new job. We're trying to avoid this crisis by paying for whatever counselling we thought would help, and now we have nothing. When the caseworker called and told us the bad news, I felt like I have lost my husband, and that my children have lost their father. He has worked hard for his whole life. As a child he raised his family, he was left at home as a 10 year-old boy when his mother went into fits of rage. He endured endless physical, mental and emotional abuse.

My husband has never used drugs or alcohol to cope, he's never smoked. He just worked and tried to keep moving forward. His brother is an alcoholic who needs a liver transplant, but he cannot stop drinking. He was held in the hospital for two weeks to detox, and received disability benefits because he could work due to his physical illness. My husband can't work but he is crippled just the same. He did everything right; he had no family support, instead he supported them. He had no childhood, as he was abandoned by his mother. He couldn't let go because he didn't have a sense that he would be supported.

He didn't choose this. He was a productive, hard working, kind, law abiding citizen, and he was an amazing husband and gentle, caring father. For him to receive affordable treatment he needs to become a drug addict or alcoholic because that's covered at the treatment facilities. Or, if he was reckless and hurt his body to numb the painful physical symptoms for his mental illness, he could have his physical symptoms cared for under OHIP.

My plan was to get him admitted to start the process, and I would remain home for a week to help myself and the kids adjust. I would then return to work, as I've been on sick leave. However, now I need an independent medical assessment to determine my eligibility for sick pay. I looked over the benefits and there is nothing stating that a caregiver has the right to stay home to care for a family member during mental health crisis, only physical illness and possibility of death within 29 weeks. It's likely that I've lost a month’s pay. My husband is getting worse by the day, and I continue to see him struggle. He said he doesn't know what's real, that he doesn't trust his eyes and ears, and it's inhumane that he's left alone like this. His symptoms have taken over, there are only moments we get a glimpse of the dad and husband we know. I look at him struggling and I wish he had a brain tumor instead.


  

 

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