Staying Balanced While Caring for a Spouse with Dementia: Don’t Stop Writing Your Own Story

caregiving for a spouse with dementiaOne piece of advice stands out if you are caring for a spouse with dementia: Acknowledge and accept that you can’t stay positive all of the time.

Remember that to believe that you can maintain constant positivity is to deny your basic human dimensions. You can’t actually bypass your negative feelings, and if you try to, you’re rejecting a part of yourself. You would only be doubling up on the loss and cause for grief: the memories that your partner no longer shares with you and, now, your own authentic experiences that deserve your compassion.

In this moment, make the choice to be present for the truth of your life, for the parts of you that can be awakened to the uncertain challenges of caregiving and to your own needs and your own vibrant life story. Being whole and successful as a caregiver for your spouse is not about staying unshakably positive; it’s about staying in touch with and staying balanced in your own experience.

Be Awake for the Sorrow—and the Beauty

I’m not going to claim that it’s easy to stay in touch—to choose to feel every difficult moment along with the pleasant ones. From the perspective of Pema Chodron, a Buddhist writer and teacher of mindfulness,

Of course, the reason why we get caught up is so we can miss the sorrow of life, but then we miss the beauty as well. Once you open, you’re open to the whole thing—both the sorrow and the beauty. This does require courage—to allow yourself to feel what you feel and be with yourself. But it connects you with humanity; you realize your interconnectedness with other people. It’s a whole different experience of being alive.

You’re starting a new chapter of your life. Don’t give in to thinking that just because the circumstances are out of your control, your story is set in stone. There’s always great power in taking a step back to witness what you’re experiencing, whether you’re feeling out of balance or whether you’ve been blocking yourself off from your feelings.

In fact, if you’re ever feeling lost or at the end of your personal rope, sit down with a notebook or even just a piece of paper and a pen. Remind yourself, in a very literal way, that you’re still the one writing your story, and you still have plenty of blank pages to fill with your resonant life experiences.

The writing exercises I’m going to describe below can help to remind you of your personal power and your choice in how you relate to your experiences, moving forward toward positivity.

Extend Your Care Toward Your Own Life

In your moments of emotional overwhelment, commit to carving out some time to sit down with your pen and paper. Right away, this gesture extends a significant dose of compassion and self-love your way. Here, you can ground yourself in your real experiences and catch yourself before rejecting those unwanted feelings that are still a part of you, no matter what.

On your paper, create three columns and label them “Negative,” “Neutral,” and “Positive.” Now, stop. Close your eyes. Silently tell yourself, “I’m here just for you. I’m here to listen.” Sit there in your unconditional generosity, and when you feel ready, open your eyes and pick up your pen.

Without any order or expectation, let your thoughts and feelings guide the flow of your pen as you list items among the columns. If you’re feeling encouraged by your spouse’s excitement when the grandkids arrived today, write that down in the Positive column. If you’re feeling guilty for taking this time away for yourself to write, put that down in the Negative column. If you notice moments of stillness between your thoughts, if you notice the cat walking across the room, or you notice the simple ticking of the clock, write these things down too—or just make a mark for each instance in the Neutral column.

Making Sense of Your Compartmentalized Feelings

If all you do is get these thoughts and feelings down on paper, you’re still succeeding in reassuring yourself that it’s natural and acceptable to really feel deeply across the spectrum of emotions. If you can also give yourself the gift of some time for reflection, you may find that this awareness practice helps you to:

  • Put the reality and depth of your feelings into perspective, especially when you’re feeling swamped by negativity and uncertainty
  • Hold space for the positives that now include new, unexpected discoveries and moments that come with your partner’s evolution and that of your relationship
  • Notice the neutral experiences, where there’s space to breathe and freedom to grow through these deep feelings and this new caregiving role

For, as Pema Chödrön explains:

The most important thing is to leave a gap. […] It will change your life because it is very painful to be caught up in the tunnel vision of your habitual patterns. It’s very painful and it limits the potential of your short human life. You’re inside your head all the time and you miss so much.

Does that sound familiar: getting stuck inside your head—perhaps as a defense mechanism against the painful feelings you’d rather not experience? If so, you’ve already been compartmentalizing your feelings, but in a way that doesn’t make room for real life and the whole reality of who you are.

The truth is that in this extensive role as caregiver for your spouse with dementia, you need even more space than ever to feel and to be real and to nurture your sense of self. Those neutral moments you can find to mark down on your paper are what Chödrön is talking about when she says to “leave a gap.” Those neutral moments of stillness and space between thoughts are wonderful assets for you now if you can exercise your awareness of them. In this spaciousness, you can gain perspective on your feelings that now swing in stronger directions than you may have been used to before taking on the role of daily caregiver.

Honest and Grounded Positivity Moves Us Forward

Sitting down to air out your feelings is also a good reminder that you are still writing your personal story. It can help give you clues about how you to better take care of your own needs and make choices for moving your story forward. After reflecting on the scope of your feelings at present, turn your paper over and begin writing your way forward, listing some of the things you can do for yourself now to maintain your well-being and sense of self.

  • Commit to regular time set aside for yourself, such as these writing exercises.
  • Proactively organize time with family and friends, who can help you to feel connection in ways you may be missing with your partner.
  • Get connected with a caregiver support group; even if you’re experiencing an excess of positive feelings, you still want to give yourself the resource you will need along this journey.
  • Explore some of the more progressive sides of the caregiving role, such as being an advocate for your partner and for yourself and for other caregivers.
  • Consider the adventurous potential in this new chapter as you get to know the new and unexpected aspects of your spouse’s life and personality.

Always having a smile on your face and focusing on what’s going right—that’s only one way of looking at positivity. You can also look at it in terms of moving forward, giving your days a positive charge so as not to get stuck. Choosing to look at only the feel-good aspects of your day may actually be just another form of being stuck; it takes courage and practiced awareness to be fully there for your life.

Even if your partner were not experiencing the difficult transition of dementia, you would still be responsible for the choice of whether to live inside each and every one of your real experiences, or to pick and choose your reality. Your role as caregiver is shining a light on this choice for you. Give yourself compassion as you approach this illuminated space of honesty and vivid experience. It is within this light that there is space for both you and your partner to be truly together now.

You may not be aware of the many supportive resources available for caregivers like you. At Institute on Aging, it is our mission to make those resources known—to support your sense of self during this challenging caregiving journey, so let us know how we can help.

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