Let’s talk about emotions. Living with dementia brings a lot of emotions to mind: depression, anxiety, loneliness, and frustration just to name a few. The holidays can exacerbate and amplify these feelings. While for many, this is the most wonderful time of the year, for us it can simply remind us of everything dementia steals and continues to steal from us.
I worked with a gentleman with Lewy body dementia a few years ago. His wife told me how she used to put up a big tree and decorate their house for the holidays. By the time I met them, they had just a little tinsel garland by the door and a tiny tree in the window. She told me that she focused on that little bit of holiday joy because she chosefor it to carry her through. I noticed that she waited well into January to think about taking down the tree. By mid-January, she had decided that she needed that little tree to boost her through the rest of the year. Each month she bought some little ornaments to reflect each season and turned the lights on each evening. She only took it down when her husband passed away that fall.
Why would I tell you this? Every day we have a choice. We can focus on all of the shit dementia hands us or we can find something to buoy us and find little bits of joy. Trust me when I say I know how overwhelmingly dark and oppressive these feelings can be. I’m not blowing sunshine up your skirt in saying that finding joy can help us get through, but I am saying that recognizing that HOW we choose to work through these things is a choice we can make to help. Recognizing our choice in the situation can help us accept some of the feelings that can come with it. We CHOOSE to be a caregiver, therefore we CHOOSE to accept the challenges that come with it. In accepting this role and all that comes with it, we can find ways to work through the emotions too.
My husband’s friend talked us into an overpriced life management class years ago. I honestly think I fell asleep at one point (which tells you the overwhelming value I found there), BUT I do remember them talking about choice and acceptance. The example they used was that if you choose to drive a car, you also choose to accept all that comes with it. Part is the freedom to go where you want when you want. Part is that it could break down while on the road. This very thing happened to me not long after this class and I realized that in recognizing my acceptance of the role of a car owner, I was much calmer while dealing with the less-than-optimal aspects as well. I find this can work with our role of caregiver as well. I think part of the challenge is that no one tells you the dark and gloomy places dementia can take us. Everyone focuses on the possibilities while sometimes we just need the truth.
All of this being said, if your emotional state is more than just seasonal blues, PLEASE seek help. Find a coach or therapist who truly understands dementia and how it impacts you as the caregiver. This is different than other forms of emotional distress and requires the perspective of someone who gets where you’re coming from. If you aren’t OK, your loved one won’t be OK. Putting yourself into an emotional sinkhole will not help them be better. It won’t make the dementia go away. By taking care of yourself, you help everyone around you.
Getting back to the holidays, take a few minutes to prepare yourself for what you will do should these emotions well up during the rest of the season. Have a plan for who you will call, who can step in to give you a few minutes to catch your breath, and who you can count on to give you a boost if you need. Talk to these people ahead of time and let them know what you will need and how you would like them to execute your needs. By being clear with them and outlining your expectations, you CHOOSE success. Even if you feel all alone and that no one cares, reach out. You may be surprised to find there are people who have been wanting to support and help you, but simply didn’t know how. How amazing of a Christmas gift would that be?