Uncertain Times but a Faithful God

When my devotional Uncertain Times was published in March 15, 2024, we were over two years into my wife’s diagnosis of progressive supranuclear palsy. This disease is considered atypical Parkinsonism, which in many cases is another way of saying “Parkinson’s on steroids.” This is the same disease former presidential candidate and political activist Rev. Jesse Jackson passed away from a few months ago. Patients with this disease are misdiagnosed for years before backing into this rare disease that has no known cause or cure. Since she was finally diagnosed accurately in early 2022, I can trace Connie’s symptoms back to 2018. My meditation in 2024 generated some nice notes from readers—such is the love and generosity of the Upper Room family!

This disease has numerous possible manifestations, though patients will not experience all. Typical symptoms are falls (over one hundred for my wife); trouble swallowing (I’ve done the Heimlich ten times); cognitive decline; tremors; inability to walk without mobility aids, many eventually becoming bedbound; and severe fatigue.

We have difficult days. No different from Bible characters like David, Habakkuk, Thomas or Jonah, we ask the infamous question, “Why?” At times we cry together, and we also do so separately. We used to think in terms of good days vs. bad days. We now think about good hours and take advantage of those moments, such as a drive to the Jersey shore to stroll the boardwalk (see picture).  

But even through this difficult health challenge, we continually learn God is faithful. We both feel closer to God than ever. Our prayer life is more deliberate and focused—not just for us, but for others whose needs are equally important to their daily living. We’re thankful for online church services. We read our Bible faithfully, as Jesus provides daily spiritual nourishment. 

We thank God that my wife has been spared some common manifestations with this disease, as she has retained good eyesight, excellent speech, and an appearance that causes people to be surprised she even has a disease; not bad for eighty-seven years old! To date, God has given me the strength to care for my wife at home, and thus far I have not needed to hire outside help (this is likely inevitable, however). We have much to be thankful for, especially our blended family.

As a caregiver who spent my career in business, I’m doing things I never thought I’d be doing. Washing, preparing meals, cleaning, helping my wife get dressed, and much more. The Lord continues to teach me as I minister to the most important person in my life. I actually enjoy taking care of my wife, which is not to say it’s easy. I’ve learned a few things that might be helpful to others:

• I get up a few hours before my wife to pray over my growing prayer list, read my Bible, then read a few devotionals, the first being The Upper Room.  This sets the tone of my day. I’m ready to go! (See 2 Timothy 3:14-16.)
• I participate in two zoom calls a month with other caregivers and patients who have similar diseases. Having done over one hundred zoom calls, I can now make suggestions as to what has worked for us. Getting practical advice from others is Biblical. (See Proverbs 15:22.)
• It’s OK to make plans, but hold them loosely. Patients with neurological diseases are physically and mentally exhausted. They need a recovery day after any activity or appointment. The patient needs rest . . . and so does the caregiver. Things change—everyday. Be flexible. (See Proverbs 16:9.)
• Exercise regularly so you can stay in shape to take care of your loved one. (See 1 Corinthians 6:19-20.)
• Do something pleasant or fun that invigorates you spiritually and mentally during the moments you have some free time. For me, writing became my outlet, and I recently published a book of weekly devotionals. My wife reviewed and critiqued each devotional. It was good for both of us! The book recently won an award from the Independent Press Awards. (See Philippians 4:8-9.)
• Take time each day to write one note, email, or card to encourage someone. It gets my eyes off of myself and helps put life in perspective. (1 Thessalonians 5:11)

My wife and I are thankful for God’s faithfulness even in our weak moments. We lean on God’s wonderful promise of Romans 8:18, “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us” (NIV). Each day brings us closer to that glory of being with Jesus in heaven! Yes, life can be uncertain and difficult, but our Lord is indeed faithful . . . and his promises are certain.