I hope you survived the holidays and are ready to tackle a new year! Before we can get there, let’s talk about the last of our holiday series we need to get through- New Year’s Eve. Sigh.
I don’t know what your history of NYE celebrations have been in the past. Some people love to be out at parties, living it up, and ringing in the New Year in style. The rest of us prefer to stay at home, watch the ball drop in New York and get to bed early (sorry, not sorry). Where I live, New Year’s Eve can rival the 4th of July for fireworks. The entire valley is lit up and, in years past, it has sounded like a war zone in my neighborhood. In this way, even the homebodies need to think of ways to get through the evening with a little bit of sanity.
For those who love to go out, dementia may not make this as possible as it used to be. Maybe invite friends over for a NYE brunch and “ring in the new year” at noon. You can have mimosas (or fake ones), yummy treats, music, sparklers (if that’s your thing) or whatever you like to make the adapted timeframe festive! I’ve done this at the hospital when I worked on an in-patient psychiatric unit, in nursing facilities, and other locations were providing services at midnight were challenging. It may not have quite the same vibe, but knowing that evenings can be difficult with dementia it could be a great compromise!
For homebodies, we may need to look at alternatives to avoid the noisiness of the neighborhood at midnight. This could mean using a white noise machine or a relaxation app to help mask the outside noise. It could mean making plans to stay up and make your own noise so you are in control during that time. I’ve known families who live in locations that can get noisy who opt for a mini vacation to somewhere quieter for that night to avoid the noise (although travel brings its own sets of challenges).
Whatever your choice it’s good to have a plan for how you will navigate the situation should things become overwhelming. If you chose to go to the party, do you know when will be the best time to leave to keep your person’s dignity in-tact while avoiding significant issues on the way home? If you’re staying home, do you have a plan for what to do should the neighborhood gets noisy and your loved one slides straight into panic mode? Think about what you’d like and how you can get as close as you can to it this weekend. My family has an old saying that whatever you do on New Year’s Day is what you’ll do for the rest of the year (in my case that means cooking and cleaning, which means the saying holds no real weight in my house). I want you to go into the new year feeling confident in your abilities and knowing that you navigated through the holidays the best you could with what you had.
You are amazing. Together, we’ll get through 2023 as well.
Happy New Year!
Avoiding Holiday Hell- part three
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?
Avoiding Holiday Hell- part two
OK. Last week we talked about the big F of holidays (family. Family. What word were you thinking?). This week we’re going to look at expectations. Sometimes the person we’re most worried about disappointing during the holidays is ourselves.
When I was just out of grad school I had to go to a training for my job managing a group home. I couldn’t tell you who was speaking or even what it was about but this one line stuck with me and I use it a lot in my life. “Some days you have to accept as close as you can get to what you want.”
What does this mean? It’s all about recognizing that things may not be perfect, but they’re close enough. I’ve found that this has tempered my expectations and possible disappointment in my everyday life. A day where my patients all make great strides toward their goals. Great. A day where everyone is miserable and not working on anything I have planned? Great. Knowing that the day is going to get me as close as I can get to what I want in that moment makes it easier to accept both the good and the not-so-hot.
How can we use this for the holidays? Well, just like it sounds- we’re going to accept as close as we can get to what we want. We’d prefer to spend a full 8 hours with our family, but dementia decides that 3 hours is enough. Close enough. Three is better than none. We'd prefer to attend five holiday parties, but dementia decides that we can only do one. One is still better than none. We’d love to make all of the cookies and goodies we love this time of year but dementia demands more of our time so we end up with goodies from Costco instead. It’s OK. The world will not end. It’s all about accepting what we have and being OK with whatever that is.
Try it for a few days. Start the day with “today I will accept as close as I can get to what I want” and live that all day long. Going in with the full understanding that our best will simply be the best today (even if it isn’t as best as yesterday) can really shift our thinking and allow us to accept all of the good from the day. In doing so, we also ease some of the stress of the holidays and the potentially crippling expectations we tend to put on ourselves.
Cut yourself some slack. Take the gift of as close as you can get to what you want.