In our family we had a saying, “We’re doing the best we can, and so is Mama.”. It was something we repeated frequently to each other throughout my Mama’s journey. Mama’s care was a family affair. It took my sister, my husband and I all working together in order to navigate the shoals of this difficult journey called dementia.
When Mama was in the very early stages of dementia, my parents lived what they would consider ‘independent lives’. Their ‘independence’ was augmented by several trips a day out to their little cottage in the country. We needed to check on them, fix meals, and administer medication. My dad did the best he could to care for Mama, but he was struggling with Parkinson’s so he needed our help as well. When Daddy passed away, we knew Mama wouldn’t be able to continue to stay alone.
At first, we didn’t know a lot, but one thing we did know was that we wanted the journey to finish well. Our experience with dementia began over a decade ago. At that time there weren’t a lot of books on the subject other than medical types. The one thing we were convinced of was we wanted Mama to have as much joy as possible in the process. It was the pursuit of joy that guided us up and down the pathway.
Since every person and family dynamic is different, what works well for one may not be good at all for another. It required both wisdom and knowledge. Wisdom was found in the general philosophy of joy, along with Knowledge of what unique activities bring that joy to Mama.
I have five thoughts to keep in mind while you progress along your journey. We will explore the first two in Part one. They are rather a matched set, and will help provide the basic groundwork.
- Look for the Joy. Activities that will bring joy to your loved one may not always be apparent.
- Who knew that my sweet, kind Mama would get such a kick out of watching the ‘Three Stooges’. Slapstick made her laugh and laugh. When she laughed, we laughed. We watched them over and over, and over. To Mama, it was new every time.
- Singing was also an area of joy. Mama loved to sing. We sang all the time. I believe that it was one area that she may have felt she had some control.
- Your loved one may not enjoy watching movies, but perhaps taking a walk or petting a dog or cat would bring her joy.
- Holding a hose and watering flowers might be just the thing.
- Folding warm towels from the dryer was another activity that brought her joy. I would hand her an armload of warm towels and she would hug them smile for a while. Eventually, she would begin folding them.
- Mama was a Lab Scientist and loved to sort and count. We would hand her a container of colored beads and ask her to sort them by color into ice cube trays. She would enjoy sorting for a half hour or so. Once she was done, though, she was done.
- Before dementia, Mama had been an avid reader. The disease robbed her of the ability to follow a bunch of words. Photos, however, were a different story – especially faces. She would spend the longest time looking at the faces in our church directory. Mama also enjoyed looking at a smiling baby faces in a book or magazine.
- Watching bright, yellow finches’ flit, fly and fight around a thistle sack was also a delight for Mama. She would watch them in fascination. Even though she wouldn’t be able to tell me what they were if I were to ask her, the little yellow darting objects caught her attention. And, they made her smile.
- Celebrate every victory. Dementia often begins gradually taking away bits and pieces of memories, abilities, and interests. This is why it is so important to celebrate every accomplishment. It may seem silly at first, but as time goes on there may be fewer and fewer successes to celebrate.
- It doesn’t have to be a big deal, simply “Yea! You did it!” (big smile) or “Good job!” (big smile). Or “Wonderful! Let’s go get some ice cream to celebrate”, (big smile). It may be a good idea to add ‘jazz hands’ to the mix (hold both hands up and wiggling fingers) while saying ‘Yea!’ along with a big smile. No matter what you do or say, always include a Big Smile. Over time, the words will mean less and less, but the smile will always mean happy, loved, joy, wonderful, safe, and secure, etc.
Concentrating on joy and celebrating victories – along with a big smile might be enough to take you a long way down dementia’s path. Even so, as the commercials say, “But wait, there’s more!”. Part Two will provide a few more tips to take you even farther. Stay tuned…
Has your world been touched by dementia? My recent book, “FinishingWell: Finding Joy in the Journey”, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find the joy on your own, unique journey.
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