When At-Home Care Becomes Difficult

I learned the role and responsibilities of a caregiver with experience, day-by-day, by reflecting on my mistakes, celebrating the victories (big or small), and trusting the Lord tell us what to do next or to act on our behalf when I didn't know what to do. That was especially true about knowing when we would need outside professional help for Dad. During our first two years together, Dad was more functional, so we were closer to roommates and buddies than a care giver/recipient. The last 18 months were different, as Dad needed much more help and supervision to live well. But still, we did our best despite the difficulties. I didn't have any idea when we would need more help, such as in-home nursing aides or even a long-term care facility, but I believed I would "know" it when we got to that point.

Last September, I began to "know" it. That's when we started doing our homework about in-home/visiting nursing agencies and local care facilities, to consider the options, prepare for the costs, and think about how to ease Dad's transition through these options whatever happened next. It's gut-wrenching when you realize, that despite your best efforts, you cannot continue to do what you have been doing, even for years, because it's no longer good enough. It hurts, but we all have to do this at some point. I got "over myself" because Dad's needs and care mattered more than my feelings.

I feel for every family that reaches this point. We reached it too. We were able to stay home until Dad reached the finish line. The difference was God's providence, but I know not all families will face the same circumstances or have the same options. Because of Dad's problem hernia, and not being a candidate for surgery, his doctor recommended at home hospice care. I will write more about our experience with hospice and its benefits for our family, but I can say that having a nurse making regular visits, performing Dad's health check-ups and baths, and providing end-of-life equipment and medicines was a big relief.

Admitting that we need more help, even professional care, is difficult to accept, but it is possible when we put the focus on our loved one and think through which options are best for him or her.

God's Handiwork

I have written in previous articles about the sanctity of life and the dignity of aging. This is such an important topic that I wanted to pull together some thoughts from earlier writings to affirm the Christian worldview. Pragmatism, worldliness, and the emerging embrace of socialism is pushing our culture toward self-destruction. In my Dad's case, I state emphatically that: (1) he was never a lesser person; (2) he was never a burden on his family or society; (3) he was not expendable; (4) he was always a man with the touch of the divine.

It was difficult to watch a man "unlearn" his life, but those were just skills. Life skills or talents do not make the man. The Lord makes the man. Our value comes from Him. Even while Dad's skills ebbed, he was never robbed of his personhood or worth, and he was always our Dad. But the socialist worldview, which includes the emerging social justice movement, will force a moral showdown, as we struggle against the mob push for assisted suicide, burdensome healthcare regulations and insurance mandates, cost-benefit assessments on the sick and elderly, and more. Our culture is moving toward a dark place where we extract what we can from people and then discard them as debris.

In our family, Dad was never a burden. We were privileged to honor him. And without a doubt, Daddy gave far more than he received. The Lord gave to us all far more than we gave to each other. These last four years were a gift from God. That's why I pray that God will give all of us the wisdom to value life as the marvelous gift it is. Life is God's handiwork, and we must reverence the elderly with dignity that affirms God's greatness. Dad was worthy of our best, loving service.

Encouragements From Dad

I wrote about this subject earlier, but hey, it's just so good, why not write some more? My care of Dad was never just a one-way relationship. The Lord aided my Dad to help and encourage me too. I have written about some of these little gems, like a timely smile from Dad, a breakthrough that produced cooperation in some simple way, a pat on my knee, hand, or arm, but the best of all was tucking him in bed at night.

Our night-time routine was fairly consistent over the last 18 months. I would suggest "let's go to bed", and Dad would make a move to his bedroom. I helped him with his clothes, took care of any personal needs, and pulled the blankets up over him once he settled in his favorite "go-to-sleep" position. I kissed him on the forehead, cheek, or both, and then said "I love you, Daddy. I pray your sleep will be sweet." And it's Dad's response that cheered my heart, and that's what I want to highlight now. Dad had trouble speaking for over a year. If asked a simple, direct question, he could say "yes", "no", "ok", or "alright". Occasionally, he said 2 or 3 coherent words. Complete sentences were long gone. When he tried to speak on his own initiative from his own thoughts, the words were mangled or like gibberish. But here's the sweet thing about Dad's encouragements at bedtime, whenever I kissed his cheek and said "I love you", he always nodded his head affirmatively and said "I love you too." The Lord almost always freed his voice to give love in this way. I am blessed!!

Losing My Cool, Regaining My Cool, Maintaining My Cool

I experience all the frustrations that everyone else does. With Dad, our family had all the joys AND distresses that other families have. Keeping my composure was a battle. The Lord taught me a few key things that ultimately produced victory to keep my emotions and frustrations in check.

(1) I had to stop teaching, or trying to "fix" Dad. Fortunately, this happened early in our journey together, while Dad was still highly functional. Training, instruction, repetition of a task were pointless methods. I accepted the nature of his illness, and realized all of these "problems" were not problems at all, just minor details.

(2) Dad knew when he missed the mark on some task; he experienced the discouragement. I eventually began to say "Dad, that's not a problem. You did nothing wrong. We'll take care of this, and move on with our day." I wish I had learned this one sooner, but thankfully, the Lord got through to me eventually.

(3) When a tough moment arrived, I paused, took a deep breath, stopped talking, thought about the mercy that I will want in 30 years or so when my health declines, and prayed inwardly "Lord, help me get over myself; this too shall pass, right?"

(4) Knowing that Dad was neither "lost" nor "gone", only hindered by illness. He was still the same wonderful man with the hand of God at work in his life. Dementia wasn't stealing from us. God was adding to us.