Thanks to Terri Corcoran, a full-time caregiver and public relations chair for Well Spouse™ Association, for these tips on finding joy and support in the stresses of caring for a loved one.
I find the support I need primarily from God Whom I have learned to depend on, by virtue of being in this very difficult caregiving situation. I also get support from the Well Spouse Assn., which provides emotional support and resources for spousal caregivers; I am very active in this wonderful, unique organization.
What brings me joy is any step my ill husband can take or any word he can say (he is very disabled physically and cognitively by FXTAS, a genetic neurodegenerative condition which he has had for practically our whole 12 year marriage thus far – still going).
I am also very happy that I have cared for him at home, where he is happy and comfortable and very peaceful. I have kept him in as good general health as possible. As I look back over the very difficult years, I feel great that I have been able to give him so much love and care – and he still loves me too!
The biggest obstacles are of course my husband’s extreme disabilities – he needs help with all activities of daily living. I have home health aides 10-11 hours each day to help get him around, feed him, shower him, and stay with him when I go out.
Having to depend on aides who need lots of training and who come in all different levels of competence is probably the most difficult part of my job.