I was a caregiver for my late husband who had early-onset Alzheimer’s, my mother who had dementia, my father who had cancer, and my mother-in-law who had dementia. Years after my husband died, I met a lovely widower and enjoyed 3 wonderful years with him until I noticed signs of dementia. At first, I ignored them because I didn’t want it to be true, but it was. I knew I could not go down that road again, and my blood pressure was rising as I dealt with a familiar situation I thought I had left behind. I was then diagnosed with AFib, and knew that the relationship had to be pared down greatly.
A similar thing happened when I was caring for my husband. My support group leader kept telling me I was exhausted and to put my husband into a respite program. I finally took her advice and while I caught up on doctor’s appointments I was behind in, I was diagnosed with beginning stage endometrial cancer. I am fine, but it was at that point I realized I could no longer care for him at home, and placed him in assisted living. That transition into assisted living was the hardest thing I ever did and began a new chapter of our journey. This is not unusual for caregivers to neglect their own health because they are so busy taking care of a loved one.
I was a hands-on caregiver, a long distance caregiver, a sometimes frazzled maniac, and ultimately a competent person who learned to navigate both the healthcare system and the role of caregiver. I think the two most difficult times in a caregivers life are at the pre-beginning, when symptoms are not clear and a diagnosis is difficult to obtain, and at the end, when caregiving is over and the caregiver is left wondering what to do with themselves now that they are no longer a caregiver.
Throughout my caregiving journey, there were many moments of laughter, tears, frustration, sorrow and happiness, and I worked at incorporating them all into my repertoire. Some moments stand out as very special — like the time my husband who had not spoken for almost a year, replied, “You are the love of my life,” when I asked him if he knew who I was. It is these moments that kept me going.
Looking back, I think caregiving was one of the most difficult things I’d ever done. And as I watched the days turn into months, and then into years, I learned how to pace myself, how to reach out and ask and receive help. This did not occur overnight, but with lots of trial and error. Another thing I did that was invaluable was to join a support group. This in itself was a lifesaver and a source of comfort and socialization. Fellow travelers make the best companion on the caregiving journey.
All caregiving stories are unique to each caregiver telling it, and all caregiving stories have similarities. It is through this sharing of our mutual stories, that we learn to go on, make the necessary changes, hear our voice, understand the importance of taking care of ourselves, and find new strength. It is during this period that we change. I am more compassionate, understanding, and have learned to be present, enjoy the day, and glad to be alive. If you are interested in my story, please go to my website at alzheimercaregiveradvocate.com.