Interview With Cindy Tewes

An interview with Cindy Tewes whose husband Bob Nadir was diagnosed with ALS in 1998.

November, 1999

Do you feel healthcare has changed since Bob's diagnosis?

I didn't have any real prior knowledge, so I can't say. I do know that the insurance part of the problem is huge and without the help of a friend who comes over monthly and helps Bob file for all the insurance benefits and fights our insurance battles for us, we would be lost in paperwork and money hassles and less able to enjoy what time we do have together.

Through ALSA's television and print awareness campaigns, you and Bob have made a significant impact on raising the national level of ALS awareness and have touched the lives of many. What does that mean to you?

We have been in the position to ask for and receive a great deal of help from others, friends and strangers. It is rare when we get a chance to give back in a tangible form - a true expression of our gratitude. Creating the awareness commercials was an opportunity for us to respond with our talents (we are both actors) in a format that in turn can, and has, helped many others. We appreciated the opportunity to DO something instead of just react to our situation.

You and Bob continue to enjoy vacations. What kind of preparation is needed before, during and after travel with your husband?

Travel requires a lot of planning to be successful. At each stage of Bob's illness, we have traveled, and the challenges increase as the illness progresses. However, the rewards are worth it!

Initially we just needed a wheelchair to get us through airports and a roomier more comfortable car to rent at our destination. Now, we need a wheelchair accessible room and bathroom with guaranteed access to all public areas(make phone calls, and double/triple check!) We need to be sure that the restaurants in the area have food Bob can eat comfortably or we need a refrigerator so we can bring our own. We don't travel by air anymore - too many hassles with his power wheelchair being damaged or mishandled, but we do have a van that we are comfortable travelling in. We had an easy-lock device installed to make tie downs fast and easy, I pack a cooler with pureed foods for him, lots of water and syringes. Bob's computer goes on his chair up front with me, a good map and a guidebook of accessible trails and we are off. I have to remember to pack the charger for his chair, toilet necessities, pillows, extra clothes (he gets cold),a blender, all his medications/vitamins, emergency communication device(alphabet board) ,etc, and a smile.

We have been very lucky and have found that getting away even for 2 days gives us both a change of scenery and renews our strength. We have seen some gorgeous mountain trails that are wheelchair friendly! Once we get back home it is important to give Bob a lot of down time in a comfortable chair, because one of the drawbacks of car travel is he is confined to his wheelchair all the time.

How has Bob's diagnosis of ALS changed your life?

In every way. It has narrowed the focus of life to its essentials - love and respect, and has deepened our love and commitment to each other. It also has me always alert (sleeping is a challenge),and trying to care for the details of someone else's life as well as my own is tough sometimes. With each change in Bob's condition, using the wheelchair, having to feed him etc., we have grieved the loss and struggled to handle it. I am, however, truly grateful for this time we have together, and am amazed at the grace with which he makes each adaptation. No matter how it has changed my life - his has changed a million times more!

What does the word "Caregiver" mean to you?

For me, it is a lot of responsibility with a lot of rewards. It is a chance to outwardly express my respect and love for my husband. When hiring outside help I ask for kindness, attentiveness, gentleness and respect for Bob and his changing needs. Knowing that Bob's mind is functioning at top speed, even though his body doesn't, is a challenge for some people. I need people who have the heart and inclination to get to know this wonderful man.

As a primary caregiver, it is often a challenge to maintain facets of your own personal life. How do you maintain a sense of balance in your life?

Well, I didn't, initially. But now, we have hired outside help (no help from the insurance unfortunately) and I have re-established my friendships and work associations. Not knowing how long we have together has made me reluctant to miss a moment, but having help 5 days a week, 8 hours a day, makes the 16 hours a day I am Bob's caregiver now have more balance.

I also realized early on that I would need guidance and I continue to see a counselor to help me deal with the incredible loss and grief we experience daily. I try to get a massage at least twice a month too!