Early Onset Alzheimer's - Caregiver Emotions

A friend gave me a devotional book called, Grace For The Unexpected Journey - A 60-Day Devotional for Alzheimer’s and Other Dementia Caregivers. You can find it on Amazon and other booksellers.

In the second devotional, the author, Deborah Barr includes a list of emotions and says to circle the emotions you have experienced so far on your unexpected journey. I laughed after circling almost every emotion. Caregiving for my husband with early onset Alzheimer’s has been the biggest challenge of my life so far.

Three things I have learned about emotions while caregiving.

The emotions are not bad or wrong. Our world was turned upside down. The most difficult part of having all of these emotions was that I didn’t have my husband to share the burden with or to confide in or to comfort me. I basically held them in and I felt like I was going to self-combust.

I had to get some respite care. During the first 5 months after his diagnosis of early onset dementia, I left the house alone 4 times and he never left the house alone, because he couldn’t drive anymore. I didn’t even like saying the word “respite” because I didn’t want that to apply to me. Don’t wait to look for respite care for yourself, even if you don’t call it that. I should have been arranging something so that I could get out of the house. Honestly, I thought I was doing okay even though I couldn’t figure out why I was gaining weight and so exhausted all the time.

Many of these emotions were because of grief that I didn’t understand. There were so many things and each day there was something new as my husband’s disease progressed. But one thing that I learned that really helped, was journaling. I’m going to share more about that in a separate blog post. But, I found a way to journal that helped me process all these emotions. I also had a couple friends that I could talk to unapologetically.

The first time I did this same study was a year ago, and I circled only about half of the emotions. Caregiving for a loved one is complicated, scary, and an uncertain path. I didn’t expect to feel so many emotions, and it’s not that they have gone away, I just accept them better now.

Grace for the journey.

Anne