Being the primary care partner for a person living with dementia is tough.
Beyond the grief of watching a person you love go through an unforgiving disease process, you’ve got the practical matter of another grown person’s life to manage, as well as your own.
Watching live news coverage of Hurricanes Harvey, Irma and Maria filled me with dread. My mind wandered back to Hurricane Katrina. Important changes in disaster preparedness were adopted across the United States for skilled nursing facilities in the aftermath of Katrina.
At a certain point in the disease process, people living with dementia need to move into memory care. This common assumption just isn’t true – at least, not for everyone. As with most anything in life, financial resources create choices. The second, and perhaps most important, part to consider is willingness.
No one chooses to make a move to memory care on a whim. It’s an emotionally bruising experience, often made when you’re most exhausted and vulnerable.
One of the hardest decisions you’ll ever make as a dementia care partner is when to move your parent or partner into memory care. Once the move is done, you next need to know how to work effectively with care staff. The fantasy is that the move goes off without a hitch, and then life just magically gets easier. In my experience, though, that’s about as common as running across a unicorn in the wild…
Caring for a parent or partner living with dementia can become an all-consuming task. It is often an experience that becomes your whole life. Some care partners take on the role because they want to, some because they feel they have to, and others because they never considered any other option.
In working with 1,100 people living with dementia, I’ve found working with them is the easy part! It’s their families who are much more challenging.
I did my first “research” paper in 2nd grade. I chose Harriet Tubman. When I learned what one woman could accomplish against unbelievable odds, I was hooked. I devoured stories of female trailblazers, marvelling at Marie Curie, Elizabeth Cady Stanton, and Dr Elizabeth Blackwell. Rosa Parks, Amelia Earhart, and Malala Yousafzai have inspired me. Being a trailblazer is hard work.