My husband is in the last stages of Lewy Body dementia and can no longer do anything for himself. He is in hospice care and he is at home where I am his main caregiver. This is my world.
One of the biggest changes for me after my husband’s stroke was accepting all the things I could no longer do. When he was still able to manage by himself, I could do music at church, volunteer with my favorite organizations, and meet with others for exercise. Since the stroke, and after bringing him home, I can’t leave unless I have a sitter to be with him. I have to prepare him ahead of time by giving his feedings and medications before I leave. I can’t be gone for more than three or four hours max – usually only two.
I started losing touch with my community and feeling isolated.
But now, after six weeks with my husband at home, I’m finding new, small ways to get involved that don’t overwhelm me or cause more stress. This week Mom has joined me and we are stuffing baby bottles. Yes, you read that right.
Every year, one of my favorite organizations, Northwoods New Life Resource Center, does a fund raising campaign. Plastic baby bottle banks are distributed, mostly through churches. People fill them with spare change, bills and checks and bring them back within a couple weeks. Last year I went to New Life Center and helped stuff instruction sheets in each bottle. This year Mom and I are doing it from home. It’s the perfect, low stress activity. I’m also able to do some chores, like washing donated clothing. I have frequent contact with others and get to be involved in a great cause. Volunteering from home, what an idea!
A big anti-isolation factor for me has also been learning to utilize the helpers I pay for and the ones that come with Hospice enrollment. My hired company gives me two morning hours and two evening hours each week day and every other weekend. Now that we know each other, my daily helpers let themselves in and tell me to get lost. I use the time to shop for groceries, pick up prescriptions and other odd errands, or I go over to spend dinner time with family. My Hospice volunteers give me a couple hours more in the middle of the day, once a week. I want to use this time to find out if I can still remember how to ski – it’s a bit sketchy…
Hospice has also been a blessing because of the number of people who come to us in an average week. The husband and I see the weekly volunteer, a nurse, a CNA, a chaplain, and a masseuse (she works on the caregiver too, yay!) We’ve gotten some good conversations and some new friends.
As hard as this time is for the husband and I, there is no sense in adding to the sadness by letting ourselves feel isolated. Separating from meaningful activity and caring community only hurts us. We don’t have to let that happen, and won’t.