Caregiver Question | 12/14/23

Any advice on how to handle the emotional roller coaster?

DEAR CARALLEL: I’ll make this short and sweet. I’ve been helping my mother for the past six years since her dementia started getting worse. She’s doing ok and for the most part I am too I guess.

Except that I’m really not ok because I’m sick and tired of this emotional roller coaster!

I’m always on pins and needles and my emotional state changes faster than the New England weather. It’s exhausting. 

Happy for a minute when we have a good visit or phone call. Guilty for missing a visit. Angry when people assume I’ve got nothing to worry about because she’s in assisted living. Elated when we have some good eye contact. It all changes in seconds and I’m exhausted. 

Any advice on how to handle all these ups and downs? I’d appreciate it as right now all I want to do is get off this roller coaster and get my feet on some firm ground. – Tina in Concord, NH

DEAR TINA: Virtual hugs to you. Thanks for writing in. 

Before I jump into the heart of your email, I’d like to address one thing. The fact that your mother lives in an assisted living community does not make you any less of a caregiver. 

Okay, on to the crux of your email. These feelings you’re having? They’re real–and the way you describe them as a roller coaster is all too accurate!

Relationship changes are all a part of dementia caregiving (you know this by now), and can definitely trigger some pretty uncomfortable and unpredictable emotions (you know this too). 

It’s important to give them the attention they deserve, so again, I’m glad you wrote in. Here’s some food for thought that will hopefully help. 

Reading the Signs

Emotions, as wild and unpredictable as they may seem, serve a purpose. They’re like road signs guiding you through a new and unfamiliar territory. They’re telling you to slow down, look, and listen – to pay attention to what’s going on.

And they can be a signal that a change is needed. Listening to your feelings brings up questions: “What’s wrong?” “Why do I feel this way?” “What can I do?” “What will help?”

Conflicting Emotions

I’m not surprised to see you describe a set of mixed emotions. It’s normal to feel both love and frustration, gratitude and sadness, compassion and anger. 

Understanding that these mixed emotions are part of the caregiving journey can help. It’s okay to feel a jumble of things; it doesn’t diminish your dedication or love for your Mom.

Expect Them

I personally can’t stomach roller coasters in real life but if I could, I’d still want to keep my eyes open while I’m on the ride. That way I’d know what to expect–and to some extent be prepared for the next sharp turn or steep drop.

The same goes for your roller coaster of caregiving emotions. Expecting the change to come could help. And by the way, having some understanding of why you feel the way you do is also important, because how you feel affects what you do

Go Gently

Cut yourself some slack for feeling this way–and wanting to get off the ride. Even though you’ve been at this for six years, constantly adjusting to the twists and turns of dementia caregiving is not easy. 

But see if you can allow yourself to feel your emotions.. Ignoring them or holding them in can lead to burnout –  and that would affect both you and your mother.

It’s okay not to have all the answers. The roller coaster you’re on is uniquely yours.

Embrace the highs and lows, lean on your support systems, and try to scratch out at least a few minutes each day for yourself.

And remember that you’re not alone! 

You’ve got this, Tina! 

Hope this helps, 

–Jennifer, Carallel Care Advocate

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