Help Me Make It Through the Days

Understatement of the month: serving as a caregiver, while holy work, is difficult even in the best of times. Reflecting on my six years living with a spouse with Alzheimer’s disease, here are some practices that help me:

  1. Have fun together.  As difficult as times may get, J and I still manage to enjoy time together, whether she is keeping me company as I make dinner or accompanying me to the opera or a baseball game, having forgotten that she doesn’t care for them. At this point, visual stimulation works well, including movies and art. 
  2. Take breaks. I travel for work and find it restorative to visit another city, have a night or two in a hotel and only have me to worry about me.
  3. Exercise. Life would be harder if I didn’t work out. However I’m feeling, it’s always better after a run or session in the gym.  J sleeps more than I do, so I work in my work outs early in the morning. 
  4. Get sufficient sleep.  Patience comes more easily after seven hours of sleep. It can be difficult for me to make this happen since my daily alone time is generally after J goes to sleep, but I am mindful of the enormous difference it makes and so I try my best to have the discipline to go to sleep at a reasonable hour. 
  5. Ask for and accept help.  If you are a caregiver, you cannot do this alone. Period. We are lucky to have dedicated friends and family. We also are part of a faith community that not only supplies spiritual nourishment but ready hands when we need them. We have a group that takes turns having dinner with J once a week. This gives her a social life separate from me and gives me a needed and predictable evening off. I organize the evening through online Doodle calendaring. Friends sign up via the Internet and there is very little administration on my end. 
  6. Laugh.  Keeping my sense of humor is key. Laughing together is cathartic. 
  7. Cry.  If you are an Alzheimer’s caregiver, sometimes you will feel sad. After all, you are living with loss on a daily basis. Allowing myself to cry when I feel like it sometimes gives me the release I need to go forward. 
  8. Cultivate gratitude.  I start my day grateful that I have another one to enjoy. I am fortunate to have loving friends and family and meaningful work. Most of all, it is a blessing that J is happy almost all the time, and that she enjoys most moments most days.  Noting the good things on a daily basis provides armor when the difficult times threaten.
  9. Don’t get too far ahead of yourself.  I try not to look too far into the future. This may seem like avoidance, but I don’t think so. The course of Alzheimer’s is very individual. People react differently to the disease, display difference symptoms and decline at different rates. I attempt to meet the now now and trust that I will have the wherewithal to deal with tomorrow, next week and next year when they come. 
  10. Find community.  I am repeating myself, but whether you reach out to family or friends, a faith community or an Alzheimer’s Association support group, reach out to someone. Today. You cannot do this alone. 

2 thoughts on “Help Me Make It Through the Days”

  1. Thank you so much for your honesty, your Iove, your humor, your words. We are blessed that you so graciously share your hard won wisdom. To another day that you know-and perhaps we can recognize-is a gift.

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  2. My husband has dementia secondary to MS, he remembers much of the past and yet he has the reasoning ability of a 5 year old. I find myself lost often and angry for what we’ve both lost. I’m just starting to come to grips with the idea that I need help and that I need time away. The VA will provide 30 days of respite care annually for me and I am going to start taking advantage of it. One week each quarter should help me keep my sanity. Glad to find your blog.

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