As I care for people with dementia and Alzheimer's, I can say that it is a challenging journey with lots of unexpected twists and turns. Fortunately there's lots of good information on the Internet to support one's efforts in this endeavor, but even with all that information, there are many challenges to figure out along the way.
Stigma
There's great stigma when it comes to dementia and Alzheimer's. Many have lots of negative, unhelpful reactions to these medical conditions, and that stigma hinders some of the good work possible. Often in society, stigma is associated with situations that we don't fully understand or have little experience with. In the past, many people didn't live long enough to contract the kind of deep dementia and Alzheimer's people have today. I'm sure there are other reasons why we don't know much about these challenging diseases and why there is such stigma attached. I want to learn more about this and how I can contend with the stigma that interferes with good communication, teamwork, support and best care for dementia and Alzheimer's patients.
Every case is different
Unlike illness that follows a mostly similar path, Alzheimer's and dementia look different for every person, and these diseases also often look different each day. For example on one day, I can feel like the caretaker extraordinaire since those I care for will be happy and easy to help. Yet on other days, I can do nothing right to ease their angst and help out with their personal care and other life issues. The fact that no two patients are the same and no two days are the same make these medical conditions difficult to navigate. For example, I was met with a fairly new challenge with regard to behavior yesterday. I researched the behavior and could find no example that was exactly what I observed and had to deal with. I'll continue to research as I think about how to help better, but that will take time since no two cases are exactly the same.
Teamwork is helpful
I was working with a knowledgeable hospice team with regards to my care taking role. They were awesome as they worked with many dementia/Alzheimer's patients and had a medical background. When I met with a challenging situation, I could call them for consult. Then hospice ended their services since the patient's medical statistics were not getting worse even though the dementia was at a high level. Sadly, I'm without a skilled team for consult and camaraderie right now. We're in the process of finding another team to support us, but this lag time between one team and another has demonstrated to me how important it is to team with a knowing, expert team when caring for Alzheimer's/dementia patients.
Know this is a journey
One more difficult aspect of Alzheimer's/dementia is that the patients don't get better. Yes, they can have good days, but in general, the situation gets worse over time. This is a sad reality that I find very emotional and challenging. I have found some meaning in this journey in that it helps you to take life day-by-day, celebrate the small wins, enjoy intimate time with your loved ones and think deeply about what it means to be human.
I care for people who cared for me over my life. This is time to give back with as much love and care as I can muster under this tough circumstance. Writing about this helps me to organize and energize the path ahead. I welcome your insights and advice as I travel this path. Onward.