Minding Our Elders: Spousal caregiver’s life requires reset after partner’s death

Dear Carol: I know that people with dementia sometimes give up on living if their caregiving spouse dies first but I wonder about how often the reverse happens.
My husband is 72 and I’m 65. He’s in late stage Alzheimer’s and I’ve been his caregiver for many years. We don’t have any children, and, other than his family, we don’t have nearby friends.
I taught high school for decades, but my colleagues are still back in our hometown. I’ve wondered what I’ll have left once my husband dies. I’m not suicidal. I just don’t know what my purpose will be. Is this normal? – Irene
Dear Irene: I believe that your feelings are completely normal. Long-term caregiving can become an all-consuming task. It’s apparent that you love your husband, even to the point of uprooting both of your lives to live near his siblings.
These emotions will likely linger long after your husband passes on. After all, you are grieving all that you’ve lost with your husband up until this time. After he dies, you’ll be grieving his physical loss, as well. You’ll need to give yourself permission to go through this process at your own rate.
Your new normal will be different than your pre-caregiving normal. Your life has changed. You have changed. Still, life can evolve enough for you to find satisfaction. Perhaps you’ll find yourself helping others who are going through what you are enduring now, or you’ll rediscover a long buried passion such as art or music.
For the present, ask your husband’s family to fill in more often so that you can become involved in some outside activities or at least attend a support group for Alzheimer’s caregivers. The Alzheimer’s Association can help you find one near you.
You may want to start a journal where you can write down your feelings, positive and negative, as you continue your caregiving journey and move forward in your altered life. Keep a separate section exclusively for notes around how much you’ve grown as a human being from your caregiving years. I know that you’ve given up a lot. Most caregivers do. But if you try to think of one thing a week that you’ve gained, you may find that you can look at your caregiving years as a springboard for something else. Use the other pages to write about your daily feelings and your husband’s ups and downs. Vent when you feel the need.
I’d like to suggest some websites that you may find helpful. The first two I moderate. They can be found at www.healthcentral.com/alzheimers and www.agingcare.com . The third is the Well Spouse Association at www.wellspouse.org . Caregivers need caregivers. I believe that you’ll find people on one or more of these sites who have feelings very similar to yours. Knowing that you aren’t alone in your feelings may help spark your will to begin life anew once your caregiving is over.
My last suggestion is that you consider grief counseling. You have complicated feelings to sort through, Irene. The end of long-term caregiving can leave a huge void for some people, especially spouses. Take care of yourself now as well as in the future. It’s what your husband would want you to do.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com . She can be reached at carolbursack@msn.com .