Caregiving and Managing Time

A caregiver does not know from day to day, what they will face. Everyday is different. And though, in our home, life for us basically revolves around Marjory, it does not mean we cannot make plans, that we just have to sit and wait for her to need something, or that we cannot have a life of our own. We can and we do.

It took me awhile to understand that Marjory does not need us 24/7. Well she needs us to be around but not spending all our time directly with her. In the beginning, I felt guilty if I was not engaged in taking care of her in some way. I learned to actually reclaim some time for myself. When Marjory naps, which is often, I have learned I can relax, take a nap of my own, read a book, work on my writing, shop on line, meditate, etc. It is true that we don’t know how long she will nap, and sometimes she wakes up and wants to get up to go to the rest room “right now”, however more often she might sleep an hour or three. She has days she is more awake and alert and other days she is more tired and does not engage much. One thing I have learned is that if she seems alert and I get out a game to play and if she does not flatly refuse to play, she wants to play.

Her refusal is to say, I want to go to that chair – her recliner – and I know she just wants to rest or nap. However, if she hesitates, I recognize that she is interested but might feel confused. So I slowly put the “game” before her and show her what we will do. I guide her through it and play “with” her to match cards, find one that is the same, roll the dice and count the dots, or throw the hoop over the bowling pins(a plastic game). We might toss a balloon, or a tennis ball, or a wad of paper back and forth, or into a basket. She will play for about an hour before she is tired and wants to rest. Engaging with Marjory means a lot to her. You can see it in her face. Sometimes when she is more alert but maybe not enough to play a game, I roll her to the patio and we enjoy the morning breeze, the flowers, sights and sounds of the street and the woods behind us. Because I am not directly engaged, I might get out my guitar and practice. She loves that. Just being outside offers her a different sensory experience than being inside. I might read to her from Shel Silverstein’s poetry or Alice in Wonderland. If you use the same books over and over she becomes familiar with them and the experience feels good to her.

If she is not alert and wants to sit in recliner to rest or nap, I might turn on music or the television with little or no sound to allow her to connect with something less direct, and I go to my list. My list is a list of things I think of during the day that I want to do. It might be to work on my blog, to learn more about making videos, make a new casserole I saw on line, work on getting stains out of a shirt, or chat with one of my kids on line.

When Marjory is awake and engaged in a television program she talks about what the characters are doing and laughs at odd antics or things that look odd to her. During these times that she is engaged with a show, I also do not need to be directly interacting with her and I can get laundry done, prepare food, clean the house, sew/knit, play a game on my device, or enjoy the show with her. Depending upon the status of your loved one’s dementia, she may sleep more or be awake and alert more. The time you have to engage will be different each day and less and less as time goes on.

Keeping a list of things you want to do, organizing what that requires on a shelf that is out of the way but where you can easily get to it, will keep you feeling the freedom of having some time to yourself. Just looking at the list, knowing you can access what you need easily, or ordering what you do need, keeps your brain producing dopamine, serotonin and endorphins that help you feel joy, calm, peace and satisfaction about your life. That is more important than you might think and it can be accomplished by simply opening a tablet, journal, or getting a notecard and listing things you want to do. Then as you pull together the things you need to accomplish these “projects” your brain continues to produce these chemicals that feed your happiness. It really takes so little. Then as you take out items to begin a project, your brain pours contentment into your day. Keeping each project in a basket, box, or bag, makes each one easy to take out and put away, to stick beside a chair where you work or beneath the coffee table – my favorite place. You can trade out projects as you feel like it and have different amounts of time.