I have been a caregiver and mother of my 22 year old daughter who became seriously debilitating in 2012 from an unexpected grand-ma seizure. Our family was going through a separation although we were fortunate enough to pull together as a family.
I realized after leaving all the false promises from doctors once leaving the hospital how much trouble we were really in. There were many service that to they believed was still available to help support disability. We traveled far and wide to find the proper resources that will provide for my daughter. Unfortunately there was very little service out there for a daughter of her age.
It is time we start to look at the overwhelming care we provide and the shortage of services to help support our young disabled at home. If a child has mental illness then they most likely have a caregiver by their side.
I would like to share some of my real concerns for our future caregivers if we do not act now. When I first became a caregiver my income was $40 000 a year. There was no coverage on my daughters behalf once she reached the age of 18.
Our journey started when my daughter’s ongoing symptoms became to confusing for doctors to understand. She suffered from memory loss, her behaviour was very much like a teenager, she repeated herself and had pseudo seizures daily.
The doctors began to convince my family members she was faking and much of her behavior seemed to happen at the most convenient times. This is the point that our lives were about to take a very big turn.
As a mother and caregiver I stood by my daughter and never gave up on her. Rather then offer financial assistance, drives to appointments or help with picking up her medications, my family chose to walk away. Doctors can be very convincing and rather then offer services they convinced my family to take the approach of tough love and walk away.
Sadly our addictions made it impossible to live and I was no longer able to gain support from family and friends. I was no longer able to live a lifestyle of depression and chose to go back to work. I had only one member of my family that stayed close and was there when I needed him. My brother Kenny took on the role of care giving during my employment.
Kenny had several issues himself and could not always keep up with Brittany’s meds, diet, hygiene and cleaning. I became more depressed and relied on majuana as a relief from reality. I picked up my first joint at the age of 45 when I started to hear stories that it can relieve arthritis pain. For me it did much more then just help my joints.Brittany had already been smoking for years and it was obvious with her behavior there was no stopping her. She had contacts from the past and they were never to far from home. The funny part of smoking together is how much your willing to share.
Brittany started sharing a story of sleeping with a 47 year old man for pot, how suicidal she felt at times and her inner personal feeling. She would have a normal conversation, more relaxed but still repeating herself.
I knew in my heart changes needed to happen. During my working hours I told my boss I had to give notice. Shortly after my boss started noticing signs of a stroke. She immediately callede 911 and I was rushed to emerge on a breathing machine.
It was in the month of December and I was not waking up. All I can remember are strange visions of my son doing a tracheotomy and visions of nurses force feeding me. After a long battle I was fianlly able to awake and saw my 17 year daughter with a huge smile waving at me. It was then I realized I had forgotten about my other children.
After a long recovery several events started to consume my life once more. I had been staying at my ex husbands. It was obvious after a stroke I could not live under such a high level of stress. This put me at high risk for eviction under the Coop bylaw. My daughter Brittany began to suffer from severe dental pain,panic attacks, anxiety and eventually osteomalitus.
I made the desicion to move back in and after a long battle of fighting my eviction we were able to remain in the Coop. I was promised so much from family and friends and Brittany was getting the support she needed from family members.
We are now back in the same position once again, my family has exausted the financial favors and tranportation. One by one everyone gets tired of her long stays in emergency room and appointments. Once again I am forced to care for my daughter alone with the support of my brother.
Brittany has a 5 year old son and she has supervised visits to this day. She fights an addiction to marijuana, very confused and forgetful, has strange behaviors, but most importantly after many visits to the dentist and infectious control we are still awaiting for the remainder of her teeth and bone fragments from jaw to be removed.
As for me I have a marijuana addiction and am battling to stay away from my past smoking habit. I was diagnosed with COPD and fail to get any support from ODSP since 2013.
We have a much better health team although disappointed in long wait lists that are out of their control.
I represent caregivers and loved ones and some day hope to have a mediator that will challenge our government with these issues
- What are the rights and services do you plan on providing for our young adults who suffer with mental illness
- Would you consider opening a building plan similar to COOP that allows caregivers and loved ones to live together with resources similar to retirement homes
A care giving action plan is under consideration will this involve
- Temporary financial aid and help freeze any financial legal contracts to avoid bankruptcy
- Spousal support during divorce or separation for caregiver and young adult or senior under 64
- A caregivers rights to view their loved one during any mental disability
- Personal support systems for transportation and parking vouchers
- Travelling charges due to not have health equipment in certain regions
- Add caregivers to the priority list in hospitals
- Add new regulations for residence that face eviction due to mental illness
- The time is now to think about our caregivers in the future.