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My 2015 Failure Report: A year of being a caregiver 

It has been almost year since our mother passed away and I have become my brother’s primary caregiver. I am spending some time looking back and reflecting on our year.

Engineers without Borders believes that success is not possible without taking risks and innovating which inevitably means failing sometimes. They also believe that it’s important to publicly celebrate these failures, which allows us to share the lessons more broadly and create a culture that encourages creativity and calculated risk taking. In the realm of non-traditional caregiving for people with intellectual disabilities, innovation is needed, so in that spirit I have created my Failure Report for my first year as my brother’s caregiver.

I spent time when I could learning and engaging with people at HUB Ottawa, the HUB is an incubator for social innovation.  I am going to model my failure report after the one HUB Ottawa  recently published. Mostly as a tribute to a place and the people that have saved me in countless ways this year by providing me with hope for my future.

Failure #1 – Assuming that there were just a few adjustments needed for our lives to be back up and running

My brother is the first generation of persons with intellectual disabilities to live in the community and have decent enough health to outlive their parents. Despite breaking relatively new ground, I thought that adjusting to our new life together could be fairly straightforward. 

Intended outcome

I assumed that if I could take a few months off of my full-time work to organize supports, I could sort out our finances and apply to increase my brother’s government funding then hire a few people to help out. Everything would be sorted out and I could get back to life as it was in about a year.

Actual outcome

I have met only two other sisters, living without parents and taking care of a sibling with an intellectual disability. It is a huge endeavour, the complexity and difficulty is not to be underestimated. As one other sister told me, it took her YEARS, yes that is right, years to right herself after becoming the sole caregiver of her brother. Now, I can clearly see this to be accurate. It too, will take me YEARS, to right my upside down world.

My workplace was kind enough to hold my job for one year but unfortunately this is not sufficient. I need more time, so I will have to resign. Also the government funders do not respond to situations like ours in a hurry, so a year later we are still waiting for additional funding so my brother can have the help he needs to keep his (and my) life moving along. There is also the issue of grief that throws a wrench into plans. Life does not snap back into place for people with or without intellectual disabilities who have undergone a traumatic loss. That too will take YEARS of recovery time.

Learning and path forward

I believe that our lives will indeed find a new normal and we will continue to live our best lives in the future. But it will take time and a lot of patience. Being patient is extremely difficult for me, it is hard for me not to come out guns blazing when something isn’t going as I planned. But this process (organizing financial security, hiring support, grief and healing) doesn’t react to my big guns. I just have to take a deep breath, relax and while remaining diligent, go with the flow.

Failure #2 – Attempting to maintain same standards for my brother as my parents did.

The blessing and curse of my parents life with my brother is that they did a lot for him. All that they did for him was their gesture of great love and deep compassion. They were there for him everyday, washed his clothes, made his meals, chauffeured him around. They made decisions for him, encouraged him at every turn, supported him no matter what.  They solved problems for my brother without him ever having to ask for help. My parents great love contributed to my brother’s success in life, a great job, good health, security and stability.

Intended outcome

In the first few months after my mother died, I attempted to maintain this same standard for my brother. If my parents could do it, I could do it too. I intended to maintain the same circumstances for my brother. 

Actual outcome

Attempting to maintain the same standards as my parents was for me impossible and soul-destroying. And frankly I don’t think my brother wants me to do that. Changing my life to be in service to my brother made me deeply angry and made him deeply resentful. We had fights like we have never had before. After one particularly blazing fight, I decided to just let go.

I am letting my brother be his own man as much as I can, making his own decisions and actioning his own accomplishments and paying for unexpected and undesirable consequences. If his socks are dirty, his hair is a mess, he can’t wake up in the morning after being on Facebook all night, he is late for an appointment or eats popcorn for dinner once in awhile, so be it. Although there is a sense of groundlessness, there are also aspects of not having his life managed that he loves, like shopping, strolling around Westboro, new friendships, self-confidence and independence. 

Learning and path forward

I believe that my brother and I are both on an extreme learning curve that will plateau at some point. Our relationship is better when we are both allowed to live our own lives. I have re-framed my role from a parental role, to advisor if he wants it, I still do chauffeur service if needed, and I am definitely the clean up crew, when things don’t go quite as expected. I am not very good at advising at this point, I am still too bossy and make too many assumptions. Moving forward, I wish to be a better listener, to react less abruptly and again dig deep for patience. Most of all, I will focus on my own life and my own dreams, without them I am bitter and unhappy which doesn’t serve anyone well. 

Failure #3 – Asking for help when I need it 

Asking for help is not something our family has been known to do. My parents were self-sustaining survivors in many aspects of their lives. My brother and I can’t help it, neither of us know how to ask for help.

Intended outcome

Not asking for help ensures that we can maintain a circle of people around us who don’t mind being with you. Afterall, if you are perpetually asking for help, you become a burden, right?

Actual outcome

Not asking for help has not yielded positive results for us. For my brother, he rarely asks for help, resulting in frustration and anger which is difficult to deal with for those around him. Instead of just saying “Can you help me please?” he will growl or slam something or redirect his frustration to me. It is very disruptive.

Who can blame my brother for his behaviours, I am the same way (without the growling and slamming), Thankfully half way through the year, I clued into this failure and have been working on how to ask others for help lately. For example Paul wanted to attend a Christmas concert on my book club night. I asked some neighbours (and Paul’s Extended Family members) if they could go with him. I sweated over this ask, how to do it, when to do it. It worked out very well. Paul had a great time, as did our neighbours and I enjoyed my evening at my book club.

Learning and path forward

With my brother, we are practicing asking for help. I ask him to “use his words” to say what is wrong. Growling has been outlawed in our house.

I am also practicing. There are a number of steps. Firstly I have determined it is figuring out what help I need. This is the hardest. The best has been when someone says, “this is what you need to do”. Most notably has been the hiring of two amazing Independent Living Support Workers. I would have never done that without a friend saying “call this person and hire her”. Secondly is asking people and finally how to appropriately thank people who have helped. If anyone can help me with any of the above, I would like to hear from you! 🙂

That is the end of my 2015 Failure Report. You might think three failures is not a bad outcome but of course I am limiting them. I have plenty more to share over a cup of tea. I will continue to innovate and reflect on my new caregiving role in 2016.

Wishing you all the best for the New Year.

Helen

Twitter: @helenries

LinkedIn: https://ca.linkedin.com/in/helenries