Sitting on the floor playing ‘roll-the-ball’ with my little granddaughters, I realized the fun of playing with a ball is an activity that has really stood the test of time.
When my Mama lived with us she was in around the mid to late stage of dementia. One day she and I were in the living room visiting. Mama was sitting on the couch and I was sitting on my exercise ball–I’ve heard some actually use them for exercise, but mine is predominantly used as a chair. She seemed particularly alert and focused that day, so I decided to see if she would be able to play a little two-square.
I stood up, got her attention and gently bounced the ball her way. She caught it. The look on her face was a mixture of surprise and delight. Since she was in a good place, at that moment, she bounced it back to me. We had a blast bouncing the ball back and forth for about 20 minutes. I could tell she was tiring of the game when she quit returning the ball.
We played that game on a regular basis while Mama lived with us. It was fun to have an activity we could do together. On a real good day, when she was really ‘clicking’ I would even bounce the ball a bit off of center to see if she could adjust –which she usually did quite well.
Even if someone does not have the strength to bounce a ball, a balloon can be just as fun. For a group, ‘balloon’ volleyball can be delightful—even batting it in the air by using a pool noodle can be enjoyed by many. Anything that bounces or can be bopped or rolled never seems to go out of style, and can play a part in the joy of life no matter what the age or ability.
What activities do you find that your loved one particularly enjoys?
Today, my Mama is 84 and 1/3. It got me thinking about birthdays and how many she has had. The carehome where she resides holds a birthday party each month for all of the residents who have had a birthday in that month.
Everyone loves it. The festivity always includes music, cake, party hats and of course singing “Happy Birthday”. Only a handful of folks in the room know what day of the week it is, let alone when it’s their birthday. That however, does not stop anyone from having a wonderful time.
I realized, that the elements that go along with a birthday celebration have got to be one of the most repeated, and therefore ingrained aspects of our culture.
Many studies as well as our own experiences have shown that heart songs (such as “Happy Birthday”) live in a place other than the part of our brain we use for general memories. How else could it be explained that my Mama, who hasn’t recognized me for years, can’t remember anything about her life or even the previous three minutes could still sing songs with me from her younger life. Even when she was unable to speak, there were days I could pull one of her ‘heart songs’ out of her – at those times we would live in the moment.
The songs we sung were the ones we knew from her childhood and teenage years. If any qualifies for a life or heart song, “Happy Birthday” would certainly make the list.
I have decided not to wait for Mama’s next birthday to sing to her. Since she is in the final stages of dementia, the Happy Birthday song alone will have to do for her.
But may I suggest that if there is any possibility of your loved one wearing a party hat, eating birthday cake (even if it’s angel food), and blowing out a candle accompanied with a hearty round of “Happy Birthday to you…..”. Give it a try.
Why wait? Have a party as often as you’d like—your loved one won’t realize the repetition, and really, you never know how many birthdays are left.
“Are we there yet?!” What parent hasn’t heard that question? For that matter, who hasn’t muttered it themselves when a project or task seems endlessly endless? Children usually can’t read maps and understand miles per hour, so the amount of time that trips and journeys take can seem like a mystery to them.
As caregivers, we are also unable to predict the length of our loved one’s journey. Even though our intent is to finish well, there will be times that our hands will sag, our eyes will droop and our soul will sigh. We will grow weary, become exhausted and experience frustration at the whole situation. At that point, we, just like the little children will lament, “Are we there yet?”, and “How much longer?”
You need relief. You need help. You need sleep. This is the time when respite moves from a luxury to a necessity. It becomes essential. Look around. Is there anyone in your world who could step in for you for some number or hours so you can get some ‘me time’?
One common characteristic of caregivers is that they don’t usually want to ‘burden’ anyone else with their responsibility. We have to understand and become convinced that our friends and family love us and would be willing to step in and help, but they typically don’t know what’s needed. And if you aren’t willing to ask for help, no one will ever know. Asking for help is not a weakness, it is a gift you give yourself so that you can continue to care for your loved one.
When my Mama lived with my sister, we would take her to our house on occasion to give my sister respite, when she lived with us, we would take her to a care home (we called it her vacation resort) that received ‘guests’ for short periods of time simply ford folks to get breathers and a good night sleep. It made a difference.
It wasn’t until after Mama had to live permanently in a carehome that I realized how much time and energy her care had required. You don’t often realize when you are in the middle of it—I actually gained weight after Mama left because I wasn’t jumping up every few minutes to do this or that in the course of caregiving.
There were a lot of fundamental things we did for Mama’s sake to help her reside as comfortably, safely and joyfully as possible while she lived with us. Respite was the essential thing we did for us.
One of the most surprising discoveries we made in this adventure called “Caring for Mama”, was that the ability to sing does not decline at the same rate at other abilities – even talking. It could be, as my husband says that “Music does not reside in the brain, it lives in the soul.”
That certainly proved to be true in Mama’s case. Even after her capability to talk or carry on any type of conversation was gone, her ability to sing remained. We believe the challenge is to discover exactly which songs or type of music ‘strikes a chord’ with your loved one. We were fortunate as our family had songs while we were growing up on a regular basis–especially on family road trips.
The deepest held songs may be the ones that your loved one connected to in their youth. For example, we took Mama to attend a concert. The music style was from the 1930s-40s. The singers were accompanied by a piano and banjo players. Mama watched the players on the stage intently and seemed to enjoy the music. About halfway through, the band played “You are my Sunshine” and she surprised us by singing along!
I was quite astonished as I had never heard her sing that song before. With a bit of research, I discovered that it became popular in the late 1930s. Mama was born in 1931, so it was one that she connected to early in life and apparently it stayed with her even into her 80s.
Caring for you loved one can be a mix of joy, duty, exhaustion, determination, honor, love and tears.
What is your story? Who are you caring for? What are some of your coping strategies? Who helps you? Why do you keep going? How do you find respite?
Please share any ideas, tips, helps and wisdom with others who are walking down this road.
I remember one particularly difficult day. I was so exhausted – Mama needed so much care. I thought about the promise I made to Daddy right before he passed away. I told him he wouldn’t have to worry, that I would take care of Mama. But right then, at that moment, in the middle of my tired I wasn’t sure how much longer I could go on. I cried out to the Lord and asked Him to help me finish well.
His answer came by providing a variety of help day by day as we continued the journey. The biggest answer was that no one can do this alone. Family, friends, agencies and yes, Blog posts and comments are ways to get help, help others and find coping strategies to continue walking day by day.