By Paul Martin

I am sole caregiver for my spouse, Linda, who began exhibiting symptoms of Alzheimer’s disease around 2008 and is now in what I would describe as late stage 5—requiring more help choosing her daily outfits, and having trouble remembering basic details and close friends and family. I am just in the beginnings of suspected Parkinson’s disease.

Paul Martin worries about long-term care costs

Biggest challenge: Long-term care

I would say that our biggest challenge is and will continue to be looming costs for long-term care for Linda and assisted living for me. We age in place. We have about $300,000 in total assets including our home, and about $3,300 monthly income and no long-term care insurance.

We are both professionals with post-graduate training and we are members of the first of the baby boom—Linda technically a bit earlier, being born in 1944. After 25 years of professional work as a counseling psychologist and rehab caseworker I was able to retire early from the Veteran Administration in Virginia and begin a second career as a ranch hand in Montana. Although the pay was not great, my 20-year experience was a wonderful introduction to our “golden years.” Linda worked as a charge nurse for awhile at the Central Montana Medical Center’s Long-Term Care Unit, in Lewistown, Montana.

What I need, is a benevolent hand on my and each caregiver’s shoulder to turn us towards the services that really help us and away from the resources that attract our attention, but never fulfill any of our needs while demanding our limited resources of time and effort.

Help through direct contact or outreach

As her Alzheimer’s progressed, our children told us that if we would like their help at all, we should move back to Virginia, and so, in 2016 we moved to Staunton. Our two daughters live in Glen Allen near Richmond, and in Northern Virginia. We are still looking for our perfect answer for help and care. As the planner, I am beginning to feel a bit overwhelmed and probably need help to solve our fiscal dilemma as we look forward to the next 10-20 years.

The areas which need money (from my perspective) are not the associations and foundations, which are primarily seeking a cure. Their programming largely does not address my problems, or those of people like me who need help through direct contact or outreach. What I need, is a benevolent hand on my and each caregiver’s shoulder to turn us towards the services that really help us and away from the resources that attract our attention, but never fulfill any of our needs while demanding our limited resources of time and effort.

I was talking with another friend who was trying to build a space in Michigan that would be in accord with Alzheimer’s-friendly protocols. Describing resource assistance that he sought for his endeavors, he said about folks who were sincerely interested and filled with advice: “What I find is that when all is said and done, there is a lot more said than done. ”

Another friend, also trying to build a life that was more friendly to himself and his loved one (who also has Alzheimer’s) told me: “All I’d like to get from folks who care would be hope, as every day, I am becoming more and more hopeless.” Hopelessness seems to grow as time passes and optimism wanes. I hope one day no one needs to face the family demands that dementia-related caregiving invoke. Linda and I never expected that we would fail back then, but today, for me, resources are dwindling.

Paul and Linda Martin
Linda and Paul Martin

Beyond caregiving: More about Paul

Paul attended the U.S. Merchant Marine Academy, U.S. Navy Machinist Mate A and B Schools, Welding, Diver and Underwater Hull welding schools, U.S. Naval Nuclear Power School, Lake Superior State College, Aquinas, Carrol College, Northern Montana University, College of Great Falls and the College of William & Mary. He studied everything from nuclear engineering to English language, welding, diving, powerplant operations, education and counseling psychology. He could both operate a nuclear ballistic missile submarine and change diapers. He planned over a dozen family moves and loves to camp, fish and hunt. He has designed raised garden beds, written poetry, replaced a toilet and a roof, and torn down several major buildings including the town theater. He can drive all kinds of farming equipment, ride horses, push sheep and cattle, comfort the dying, analyze problems, engage others and cook a meal. He is welcoming, kind, grows in relationships and offers compassion. He is a loving, uncompensated sole caregiver for Linda. Paul is a cancer survivor, has rehabbed from joint rebuilds, open-heart surgery and lives everyday with arthritis, COPD, diabetes, compromised immune system and sleep apnea.