Without Experiencing The Caregiver Role, It's Hard To Understand The Struggle

I didn't understand either. I have known individuals who are/were caregivers; some serving longer than I did. I have pastored fellow church members who were caregivers. I admired them, prayed for the Lord to help those families, but I couldn't truly understand or empathize. Until, that is, the Lord arranged a season of it for me.

The lack of understanding was most notable to me through the multiple requests I received to pastor local community churches while I was fully immersed in my pastoral/caregiving ministry to Dad. Some of the lack of understanding is raw spiritual immaturity. Dad was not just a full-time job, although he was a round-the-clock responsibility. The Lord gave Dad to me for a season of ministry, a season that lasted 4 years. We were essentially a church of three, the Lord, Dad, and me. I was more than a caregiver, responsible for Dad's physical and medical needs. I embraced a pastoral responsibility for him, to shepherd him in the ways of the Lord as best I could given the disruptions caused by his illness.

My hands were full. My heart was heavy. My mind was often racing with all kinds of concerns, but I absolutely could not think too much about the future, nor could I accommodate many distractions from the "main thing" the Lord had appointed for me. That's why the pastoral requests became frustrating. Some of those asking me about my availability didn't or couldn't understand my situation no matter how I explained it. One even felt emboldened to question my ministry choice (to pastor a flock of 2). At a prime age for ministry and still possessing physical vitality, some church folks have different ideas about the best course my life should take at this point.

Those asking me to consider serving as their pastor didn't know me. They know "me" from 15-20 years ago, or something about my ministry reputation from back then. Except, I'm not that guy.....at all. I've grown in grace alot, and changed alot. And that's not just from my years with Dad, but also my years in church planting and church revitalization.

If you get to know the updated version of Greg, you may not like him very much in a pastoral role, but you probably better get to know him a little bit before you ask him to pastor your flock. You may be asking for trouble, and you will probably get it.  :)

Even With Few Words, Dad & I Could Still Communicate

In Dad's last year, "yes", "no", "ok", or "alright" were his primary words. Sentences were still possible, but very rare. Sometimes, Dad spoke gibberish words and phrases. Sometimes, "yes" meant "no". Sometimes, "no" meant "yes". When he strung a few words together, that was a special treat and blessing. I smiled and rejoiced every time.

I have no doubt that the Lord untied his tongue and freed him to bless me with a few beautiful words just when I needed the blessing. When he was tired of sitting around the house, he would say "let's go." Often, I would grab the keys and say "ok". I didn't matter where we went. A drive to the farm or to town to run an errand usually met the need of the hour. He could be honest when asked something and simply say "I don't know". When asked if his coffee was good, he could say "it sure is". When asked how he was feeling, he would usually say "I feel OK", and for the most part, because of his overall good physical health, that was true too. When told "I love you, Dad", he would always reply "I love you too." My goodness, I needed to hear those words and never got tired of them. And yes, I miss hearing those words.

Even when he spoke gibberish, I told him I understood. Somehow I did. God be praised!

Father's Day, 2018

It's Dad's Day, but my Dad's not here. After 51+ years, it's a strange feeling, not sadness or emptiness or merely reminiscent of years past; it's just different.

And yet, I am reminded of that fifth of the "10 commandments", "Honor your father and mother...." (Ex 20:12) which was also re-affirmed by our Lord (Matt 15:4). For those of you who still have one or both of your parents in this world, I pray that your honor is not limited to one day, but is a lifetime of blessing your parents, and thanking God for the gift they are.

Happy Father's Day!

Hospice Care

Access to hospice care has significantly changed and improved in our community since Mama's cancer illness 23 years ago. Back then, the closest hospice agency was 90 miles away in Macon or Savannah, but an office in Macon took her case and helped us by contracting some in-home services with local nursing agencies, and hospice staff visited our home by commuting from either Macon or Dublin. They were dedicated and effective. Mama spent her final two months at home in peaceful dignity where she wanted to be.

By late 2017, our family realized Dad needed hospice help too, but now, our community has multiple agencies, including an in-patient facility for families who need or prefer that level of care. As Dad became less functional and needed more oversight and help for everything, I began to have doubts that he could stay and finish his life at home, but that changed when he developed a problem hernia. After trips to the ER, and consultations with his primary care doctor and a surgeon, Dad was not a candidate for surgery, and in-home hospice care would help us meet his needs and keep him comfortable.

Dad's doctor made the referral to Solace Hospice. And immediately, they contacted us and began the process to admit Dad into their care. We received in-home visits from the administrator, RN, case worker, and chaplain. Hospice met Dad's and our needs. The RN began on a twice weekly schedule, but when Dad suddenly declined and began his sleep week, the RN attended to him once or twice daily and was on-call and willing to visit for whatever we needed. When Dad left us, Dad's nurse arrived within 30 minutes after my late-evening call to help us take the next step to arrange funeral services.

All of this allowed Dad to finish at home, where he wanted to be, and to finish well and with dignity. Some families may prefer or need the in-patient facility to best serve their needs, and that is fine. But at-home care is possible too.

For me, hospice care was a breath of fresh air. We averted the nursing home, and I know Dad wanted that more than anything. But we did need professional help for Dad's bathing, medical check-ups, and managing his hernia/pain situation. When we needed a wheel chair, a bed, medicine, or basic supplies, all of it was provided immediately.

Whatever your family situation, hospice is not a death sentence. It enhances end-of-life care and promotes the dignity of human life. I encourage you to take advantage of the potential benefits to your loved one and your family.

Thinking About Dad's Departure

When you are a caregiver, you are immersed in a season of life that is an amazing blessing, but it is all-consuming. It is difficult to think too much about the future or to plan ahead. Each day was enough of a challenge in itself to dream about days far in the future, but I did occasionally think about Dad's departure and what the next season of my life would bring.

I thought about the grief of his departure. My buddy and my "boy" would move on to the next world. I knew I would miss him, and I do.

I thought about the relief of his departure. Dad would no longer be trapped inside. He had a lifetime of knowledge and experiences, but could no longer apply the knowledge nor act on the lessons of experience. His departure would free him from that condition, and I am happy that he's free.

I thought about the change of seasons that his departure would bring for me. The four years with Dad were a season of my life appointed by God as a gift to me. I have no doubt about that. One of the great blessings of this world is to love and honor our parents, through every stage of life. I knew a new season would come, but I had no idea what it would look like, what I do next, or how the Lord would choose to use me. I still don't know, and that's OK. It's good and right to wait upon the Lord.

It's been good to re-connect with people again, to begin building relationships that went dormant for awhile. It's been good to have a reinvigorated prayer life. It's been good to transition back from a devotional Bible study life to a verse-by-verse study of Scripture. It's been good to start reading books again.

Dementia has a strange way of spreading and affecting the mind of the caregiver too. I felt it. I sensed the loss of mental sharpness, but I think and hope my effects will be temporary and fade over time. Yet, my next season of life is not clear right now. Again, that's OK. The Lord knows what He's doing. He will reveal it to me when He's finished whatever work He's doing in me right now. I learned to say "No." I have been reminded that saying "No" is the right thing to say, because I'm just like most people and too prone to let "good" things get in the way of God's best things.

Next season of life, here I come. I'll know it when I see it. But glimpses of it are coming into view.  :)

When The Lord Calls & Dad Leaves Us

I started thinking about that years ago, the how, the way, the when, what it might be like during and after, etc. Were we doing the things we needed to do to help Dad to the finish line? Had Dad taken care of the spiritual, physical, and financial matters that should be handled early on as a good steward? At the end of his life down here, nothing happened as I had imagined, not the how, not the when, not the where, not the ease with which he would make his trip home. The "how" was by way of sleep and fatigue, not illness or organ failure. The "when" came a year or more early based on the natural decline of a dementia patient, barring an intervening medical calamity. The "where" was home, and Dad wanted that more than anything, but I had begun to have my doubts that we would make it. The "ease" was just that, no pain, no sickness, no distress, no struggle. I've never witnessed a homegoing so pleasant and peaceful.

When the Lord came, we cried, we grieved, we hurt, but we also prayed, celebrated, gave thanks, and received our extended family and friends to share in our joys and sorrows. In the weeks thereafter, I have reminisced alot about Daddy with family and friends, and even though I have always loved and appreciated him, I have raised my opinion of him even more. It helps to be quiet and think through the facts of a situation or person and then draw better informed conclusions. He trusted the Lord (most important of all). He attempted one of the most sacrificial, redemptive works I have ever known. He gave away, spent, or otherwise disposed of just about every material asset he had in the last 10 years of his life. He was a good steward. He left instructions for his final days (what a huge relief for us!). He left us with no doubt about his wishes for a simple memorial and burial. He left instructions for a few last material possessions that remained after his passing.

As for the three of us, we did our best, based on what we thought was right at the time, always willing to learn and make adjustments along the way when we realized that what we were doing needed to be tweaked. We did not force Daddy to conform to us. We allowed Dad to be Dad, and adapted as appropriate. It was not easy at all. And at the end, death never is. It hurts. It reminds us that we were never meant for a grave and a tombstone. That's why the gospel of Christ is such good news.

Dad's age and health situation was very different from Mama's cancer illness and passing 23 years ago, but God was very good to him and to us. Dad was blessed, and so were we.

Dad Stayed Home

Miraculously, dad stayed home until he left our world. I began to have doubts that we could make it all the way to the finish line, but his wish was fulfilled. He slept his last week, quietly and peacefully in his own bedroom. No tests, no needles, and no hassles. Just quiet, comfort and rest.

Of course, hospice care helped Dad to finish well and with dignity, but that was the Lord's doing and it is marvelous in my eyes. God is merciful. God be praised.

An Easy Homegoing

In his final days, Dad did not reach the full end of dementia. He still had an appetite and mobility. While he had that annoying, and occasionally painful, hernia, he wasn't sick, and he didn't get sick with any observable condition. On New Years Day 2018, he began to go to sleep. It was OK for him to go. He knew it. We knew it. The Lord was calling him home. He slept right into the next world just 7 days later (1/8/2018).

Dad's journey from this world to the next world is the easiest I have ever witnessed. No struggle. No pain. No distress. No confusion. Just peace and calm and rest. Laying hands on him and praying with my sister and brother as Dad took his final breaths was beautiful and divine. When the Lord visited our house, He took Dad to His home where he will always be welcome and wanted.

I agree with King David (Psalm 23), and I also greatly anticipate dwelling "in the house of the Lord forever."

Medications And Treatments

Do your own homework! Having good relationships with reliable and competent medical professionals is important to all of us, but the responsibility to ask questions about our prescriptions and treatments and to do some basic homework on medical recommendations belongs to each of us, and those who oversee the care of loved ones who can no longer make decisions for themselves.

As an example, one of Dad's doctors prescribed an anti-psychotic medication for him. Dad had the obvious memory recall issues, memory loss, and skills decline symptoms that accompany dementia, but he had no swings of mood that resembled any condition like bi-polar disorder or depression. Our request was simply for a sleep aid to help Dad on those occasional nights when he was more restless and needed a little assistance to get his full 11 hours rest. The need to take a bedtime sleeping aid was usually less than once a week. Sometimes, he could go weeks without needing a sleeping pill. Thankfully, he slept well and long most nights.

When I researched that medication, I was shocked at the doctor's decision. It is prescribed for those with bi-polar disorders, depression, and Parkinson's disease. The side effects could be detrimental and difficult to manage at home, especially with regard to an elderly dementia patient. Fortunately, the doctor closed the office and moved to another state before Dad had his next 6-month check-up. I certainly lost confidence in that physician.

What did I learn? That my nature to research, research, research served us well. That it's always right to ask questions, question assumptions, second-guess, get a second opinion, and do my own homework. I don't believe in blind faith, especially blind trust in a doctor. Do your homework too!

Regulations Are Undermining Our Health

My comfort and hope is in the gospel and everlasting life in the next world, because if my hope was in this world alone, I know my future would be grim in many ways. Healthcare regulations, insurance mandates, along with declining access to quality medical providers and facilities would only add to my woe. I am thankful that Dad was in good overall health for a senior citizen, and that his healthcare needs were less than most 80-somethings. But still, I had to interact with the medical and insurance infrastructure, on Dad's behalf, enough to know that serious trouble is coming. The warning signs are already evident; we're just ignoring them. What warnings, you ask? Life expectancy has been declining and mortality rates have been rising the past 3 years or so in the United States. And the more burdensome and onerous government regulations persist and insurance mandates rule our lives, these trends will continue.

Take one look at a Medicare reimbursement spreadsheet with all the write downs and confusing randomness, and your head will spin. Then look at the co-insurance statement that covers the same procedures and/or office visits, and the head spinning turns into headaches. Prescription costs and insurance coverage made no sense at all. Fortunately, Dad already had an established long-term relationship with a primary care doctor, but when it was time to schedule a specialist, it was an awkward and slow process to get scheduled and complete all the paperwork and medical history info. The bureaucratic nonsense (AKA trying to cover every base to avoid a lawsuit vs. providing quality efficient care) at doctors and hospitals was frustrating too. Being told, you can't do that, OR we can't do that, OR insurance won't allow that is an insult to the dignity of the life that God has created.

None of this diminishes the quality work by the doctors, nurses, and technicians who rendered professional care to my Dad, but the "system" is breaking down on every level, forcing quality professionals to leave it or avoid it altogether, causing costs to rise, and making access to care more difficult. All of us will be making tough financial, medical, and quality of life decisions in the coming years.

I urge you to be persuaded of Christ's salvation and find your hope in Him, because this world's madness will lead you to despair.