Working With Dementia

Loss of Self. After getting diagnosed with dementia, I was also faced with the devastation that my career was over. I was left to deal with this unsettling news before I even had time to process what it actually meant for me. I've observed that some people living with dementia are more self-aware. Consequently, they are more easily able to prepare themselves for the likelihood that their jobs will have to change or that they may have to discontinue working.

For others, including me, the diagnosis was unexpected. It somehow felt like it was a mistake. When I discovered my job was immediately ended, I was left with what became almost insurmountable grief.

For many people with dementia, the impact of the job loss is unrecognized by themselves and others who make the decisions around our ability to work.

As a society, we have put too much emphasis on who we are by "what we do." So, naturally, with the loss of a career comes a loss of self.

I was devastated, terrified, and fearful of what would happen to me. I didn't know where to start; I was numb; what would I do? I suddenly didn't even know who I was. It was an overwhelming time.

           Christine Thelker

This is a period where many people with dementia may end up declining, giving up and losing hope.

Lack of Resources

There were and still are no resources to help guide persons living with dementia through adjusting to the loss of working life. We need to be connected with others who have felt the impacts of losing a career and with peers that truly understand. We need to be offered the same types of resources available to others living with disabilities, such as counselling, occupational therapists, social workers, and all kinds of rehabilitation.

We need people who can help us navigate and support decision-making. More importantly, we need to be seen as people who still are capable of maintaining our jobs. Individuals who get into car accidents or suffer from other serious illnesses are often provided with help to continue to work.

For example, many employers offer a "duty to accommodate" where changes are made to an employee's job descriptions and duties. Often, individuals living with dementia are given none of these essential pieces that allow us to continue contributing in meaningful ways, and it's time we are! I'd like to see more advocacy surrounding helping individuals with dementia who recently lost their job navigate life. I'd also like to see medical professionals offer more resources.

Important Tips

• If you are working for someone who offers disability benefits, your doctor will have to fill out forms and disclose your diagnosis. If you hope to be eligible for long-term benefits, you may not have a choice to work. Also, even if your doctor feels that you are still capable of working, your employer may have other assumptions or rules around it.

"I now find hope and purpose in volunteering with research groups and organizations. There is no right or wrong way to navigate through the loss of a career except to allow yourself the time to grieve."

– Christine Thelker

• There will be various costs associated with unemployment that will have to be updated yearly. If you are going on the Canada Disability fund, for example, there is paperwork that must be submitted by you and your doctor.

• This period can be daunting and draining. It wasn't until around the 2-year mark before I finally felt like I had my feet under me again. It was a lot to navigate emotionally, mentally and physically. So, go easy on yourself and, no matter what, find peers who have navigated these waters.

• It may be difficult for those around you to understand the sense of loss when your career is immediately taken from you. It is essential to talk to your loved ones. They may help you and support you as you move into your new way of life, "a new normal," I like to call it. Reaching out to Dementia Advocacy Canada and Dementia Alliance International are great places to help you find your way and find peers to help you with this transition.

Redefining self

After about three years, I found a store that was willing to let me work part-time. It was good for my confidence and self-esteem. At the time, I worked 4 to 8 hours per week. However, I now find hope and purpose in volunteering with research groups and organizations. There is no right or wrong way to navigate through the loss of a career except to allow yourself the time to grieve. Continue to advocate for yourself and find a new sense of purpose.

Take time to rediscover things you had forgotten about yourself. Try something you have always wanted to, but didn't have the time because you were too busy working. Overall, take the time to learn and form a new life; it can be a very fulfilling and happy life. Remember, time is limitless. You may not have a career any longer, but you do have time for life, take it and make the most of each day.