Being a caregiver is physically, mentally, and emotionally draining. It is a big job for one person to take on alone, but many of us don't have anyone else to help.
Can you tell us about one of your most challenging days?
The most challenging days are the ones that require a lot of physical strength on my part. With Multiple Sclerosis, some days are worse than others. Trying to figure out what causes worse days is difficult; it becomes a process of elimination until you see a pattern. One thing we have discovered is extreme temperatures like really cold days or really hot days make David’s movement more difficult and we have no control over what Mother Nature wants to throw our way. On days like that, I have to physically help him walk, get dressed, get in and out of the wheelchair, lift the wheelchair in and out of the car, etc. Those are very challenging days for me because I am a petite person and David outweighs me by 40 lbs so all the heavy lifting takes its toll. I fall into bed with my whole body aching after a day of being nurse, physical therapist, and occupational therapist all rolled into one.
How would you describe your caregiving journey?
Every day my husband’s disease robs him of more and more ability and he needs more and more help from me but with each passing day I am getting older and older and it is harder and harder for me to be able to lift him, move him, push him. So, what happens when I am too old and frail? Who helps us then? What programs are in place for our aging veterans and their caregivers? Neither of us deserve to be forgotten. We are all familiar with the saying, “It takes a village to raise a child.” Taking care of our ill and injured veterans is no different. Caregivers need the entire village to help.
Jo Ann is the caregiver for her husband, David, who served in the Navy as a healthcare provider. They have been married for 40 years and have two grown children, a daughter-in-law, and one grandchild. They have been stationed and traveled around the world. They still love to travel and do as much as they can just in a very different way and at a much slower pace.
David was medically retired in 2017 after being diagnosed with primary progressive multiple sclerosis (PPMS) in 2014. The disease has left lesions on his spinal cord and brain and continues to take away his mobility and cognitive abilities. Jo Ann helps David with all his activities of daily living and tries to find new solutions based on patterns of what makes days worse for David’s multiple sclerosis. For example, they have discovered that extreme temperatures like frigid days or hot days make David's movement more difficult. She has come to rely on the kindness of strangers in public as she helps her husband in and out of places.
Prior to becoming David’s around-the-clock caregiver, Jo Ann's education and career were in the field of accounting/bookkeeping. She also filled her spare time with volunteer work for various organizations.
As a Fellow, Jo Ann would like to investigate a program where caregivers can receive professional training on how to properly care for their veteran from a medical standpoint. Jo Ann also would like to find solutions to make places more accessible for people with disabilities.