My siblings, dad, and I are caring for my elderly mom who after a series of medical issues has landed at late stage dementia. On the upside, she is mostly happy and peaceful. She's not in pain and has a good quality of living for the stage that she is in. Yet, her condition is worrisome since we're all treading in new territory. In many ways, it reminds me of when I had my first child--I wasn't a mom before and everything was new, but with a new baby there were lots of popular guidebooks, positive support, and happy conversation. Yet, when it comes to the aging process and dementia, the landscape is not as bright, discussed, or known--in some ways, it is every person for themselves. This was true for me as a working parent--I was at the relative start of moms working and there weren't a lot of worn paths with regard to what to do and how to do it. It's the same for caring for someone with dementia--it's as if we need a popular guidebook like the one that led me through the early stages of motherhood, What to Expect When You're Expecting.
So what is one to do in a situation like this? What should be included in that yet to be written What to Expect When a Loved One Has Dementia book.
First, consult the literature. There are countless articles about demential out there and there are probably lots of books too. The articles are very helpful, and as situations arise, these articles provide very useful and helpful information.
Next, find a guide. Though not a simple process, it is helpful to find a guide. My mom is under hospice care since she suffered a stroke and the resulting complications. The hospice staff see many patients like my mom and are very helpful when it comes to guiding our efforts and supporting my mom's care. More and more, I am finding myself relying on their support.
Find ways to support your own emotional and physical journey. Caring for a loved one with dementia is emotionally upsetting and draining. You do need to find ways to support your own physical and mental health during this chapter of life. This support can come in all kinds of ways. For example, I watched the series, Call the Midwife, and I learned a lot about caring for my mom via that series since there were many episodes focused on the elderly. I've been reading and talking to friends too. Soon I will reach out for additional support to learn how to deal with new aspects of this life chapter.
See this as a life chapter. When I began this journey, I thought of it as an event, not a life chapter. Now several years later, I realize that this is a chapter of life not unlike any of life's chapters. By looking at dementia as a life phase, it becomes easier to enjoy the good times and deal with the challenges. For example, my mom's silly and sometimes ambitious moments very much resemble the person she has always been--we can enjoy those moments together which brings a smile to her face. I can prepare foods she enjoys, and sometimes even play "beauty shop" with her as I wash her hair and get her ready for the day ahead. Just as you shift your life for any stage, you have to shift your expectations and actions at this stage to best accommodate and care for your loved one.
Set the stage for success. The big learning curve at the start of this process included setting the stage for success which means remaking my mom's home to prompt as much independence, happiness, and success as possible. Amazon products have been a lifesaver since I can find the care products she needs and have them delivered. Many personal health and home products truly support good living for people with dementia. Chair and couch covers have been an awesome way to keep the home clean and bright. We've covered the walls with loving, happy photos of good times which serve as reminders of the people she loves and the good times we've had together--these are great conversation starters for family members, caretakers, and other visitors. Having handy to-do lists that include important names and phone numbers help too. Just like you childproof your home, it's important to dementia-proof your home too in ways that make living safe, warm, and welcoming.
Care schedules. Throughout the demential process the care schedule will continually change, but being able to rely on a good schedule of care brings some peace and comfort. Right now our care schedule includes family members, hired help, and hospice staff. It's a good crew of dedicated, loving, and skilled care. In the days to come, we'll likely add more staff and/or time to make sure Mom gets what she needs as much as possible.
Alter your expectations. The dementia stage of life brings with it many unexpected events, and these events prompt you to both alter your expectations and change the routine to accommodate new needs and circumstances. It's good to approach this stage of life with an open mind and a sense of collaboration with the many caretakers and family members involved remembering that no two situations are exactly the same and there's a lot of adjustment involved--adjustment of expectations, adjustment of care, and adjustment to lots and lots of change.
I was awakened in the wee hours this morning by an unexpected dementia-related event that prompted me to look at the situation as a whole beginning with my mom's first dementia episodes until now. The most memorable first episode was when she got lost in a department store one day--I could not find her. I was very worried, yet for the most part she could live her life as she always had. Then she had a small driving incident which ended her ability to drive, and after that we noticed that her conversation became repetitive demonstrating little memory and less connection making. For a large part of this early stage, she was in a lot of pain due to an arthritic type of ailment, and I believe that took priority so we may have missed much of the progression of the early stage dementia. In the late stage, most of the arthritic pain has passed which has made her more peaceful, and now, the dementia is the most noticeable ailment she displays so we are well aware of what that looks like.
As I move forward with this chapter of life, I'll do the following:
- review the home situation and update with regard to resources that make my mom comfortable, happy, and safe.
- review the care taking schedule and likely adding a bit more care throughout the week.
- remaking the household charts that guide visitors and caretakers in light of recent developments.
- listening more to the hospice experts and following their lead with regard to what we do and how we do it.
- making time for greater joy by being present, smiling, and engaging in activities that bring peace and joy to my mom.