As Caregivers, We Must Pursue The Best Interests And Clear Wishes Of Our Loved Ones

As we approach the one year anniversary of Dad's homegoing, I was recently going through a folder of his paperwork and came upon two documents, his healthcare directive and the Physician's Order For Life-Sustaining Treatment (POLST), which was prepared and signed by Dad's hospice agency and me about 2 weeks before his passing. If you have ever been in a hospital, nursing home, or hospice facility visiting a loved one in a critical condition, you may have seen one of these posted on the wall of the room, almost like an official notice, which of course, it is.

All along the way, service as a caregiver requires us to suppress many of our needs, wants, and feelings to put the interests and wishes of our loved ones above our own. They asked us, trusted us, and may have specifically named us in legal documents. They know they have asked us to do difficult things because they have already been there themselves, watching parents, a spouse, brothers or sisters slip away from this life. They ask us to do things that they also had to do, so they understand the pain and determination it takes.

I sat down with Dad's hospice staff, and we reviewed his final and legal healthcare directive, signed almost 4 years prior, when he was able to state his end-of-life wishes. Dad declared his preference to allow his natural, inevitable death to occur if he could no longer tolerate or take food and liquids. He asked for no unusual life-sustaining measures, only pain medications if needed for comfort. It was a relief to have that document. In fact, my sister, brother, and I re-read it during the final week of Dad's life to be sure that we were in agreement that Dad's wishes were being honored. But still, that document had to be transcribed into the POLST that healthcare professionals use in their practice. As Dad's designated healthcare agent, it was gut-wrenching to fill out that form and mark the spaces that read "Allow Natural Death - Do Not Attempt Resuscitation" "Comfort Measures Only" "No artificial nutrition by tube" "No IV fluids", and then sign my name to it because Dad couldn't speak for himself anymore. It hurts to do that, to fight away the feelings that we were giving up, giving in, or not doing everything we could to help him. But that's what he wanted, and it was important enough for him to write it down so that we would know and not doubt his intent.

It doesn't make the feelings go away. It doesn't mean that it's easy to do what our loved one has asked us to do, but there is peace of mind down the road in having pursued the best interests and clear wishes of the person we love. So if you haven't completed a healthcare directive with your end-of-life wishes clearly outlined, please do so immediately, because one day your loved one, husband, wife, child, grandchild, or other caregiver will thank you for the long-lasting peace of mind that you gave to them. It is a gift, and I thank Dad for it!

Merry Christmas 2018

Christmas 2018 is different without Dad, but not dreadful. We will miss having him at the dinner table. We will miss his smile and kid-like nature opening a gift. But the joy of Christmas is the Lord Himself, not family, friends, feasts, gifts, lights, decorations, or fantasies. One day all of those things will be taken away, by personal choice or by divine providence. Then what do we have left? Well, if you know and love the Lord, you still have Him, all of Him, Christmas, and all of Christmas. His gift of eternal life can never be taken from you. Praise His holy name!

Merry Christmas!

Precious Memories

I recently had lunch with a long-time friend whose father passed away last Christmas Eve. At the same time, my Dad's health was rapidly declining and went home about 2 weeks later. We were talking about how vivid our memories are of those final days. Our minds allow us to travel faster than the speed of light and even travel through time. I remember with video-like recall last Christmas Eve, leaving the Chapel early with Dad and going to the ER; an enjoyable Christmas Day with food, gifts, and family; welcoming hospice into the home December 27th and Dad's adjustments to their care; New Year's Day when Dad's homegoing began with alot of sleepy time and the difficulty I had bedding him down that night; January 2nd when Dad slept all day and never woke; January 3rd, the snow day when Dad sat up several hours, drank, ate a little, received family; January 4th when Dad sat up again but was very weak and we laid him down to bed for the final time; January 5th, 6th, 7th days in bed, resting, family and friends visiting, bringing food; and of course, January 8th homegoing, the three of us being at his side when he left, praying with him, laying hands on him, seeing his eye open to look at us and say his goodbye, the tears, the relief, the thankfulness, even feeling the lingering warmth of his bed after the funeral director removed his body. Precious memories indeed!

Most activities and most people-to-people interactions on most days of our lives are easily forgotten, but the life-changing events, places, and people remain with us. God allows us to retain those memories for our blessing and our growth and our faith, so that we can look back and recall how He worked and how great He is. The result? His Spirit renews our spirits, then we re-commit ourselves to His glory and kingdom purpose.

Merry Christmas to all and to all a good night!

Settling Dad's Estate & Final Affairs

Dad was wise in his end-of-life stewardship. He performed some estate planning about 11 years before his death. He gave away some money and property to those he wanted to have it while he lived. He left a clear, simple, updated will to handle the remainder after he passed away. My sister, brother, and I have a great relationship and have been in complete agreement with handling his house, other property, and vehicles, but still I admit how frustrating and slow all of this is to finish. And again, Dad was wise and a good steward. I cannot imagine the frustration of families who deal with an estate where there is no will, no planning, or little understanding of what assets exist and where they are located.

I can definitely testify and recommend that everyone would benefit from being like Dad in this regard. (1) Do some estate planning while you can. (2) Give away everything you want and can give away while you can and think about the tax implications if it matters. (3) Leave a clear, simple will that is updated after every major life event. Dad was particularly good about that, because he signed several wills during the last 25 years of his life, always preparing a new one after a major life event. He made it as easy as possible for his children to deal with his assets, and I am thankful that Dad was a good steward.

The Schemes Of The Enemy

Christians often underestimate God's ancient foe, Satan. We forget that he is real, the prince of this world, and that his methods are to kill, steal, and destroy. His weapons are fear, worry, doubt, regret, irrational guilt, perfectionism, envy, jealousy, and many more. We are to resist him by submitting ourselves to the power and will of the Lord.

But we also overestimate him too. We say or think "the devil made me do it", the devil did this, the devil did that. While forgetting that many hardships and difficult circumstances, even tragedies and losses, are purposefully designed by our almighty God to grow us in His grace, to purify our hearts, to refine our faith, and so much more. We can mistakenly attribute a divine plan of the Lord to that scheming low-life devil. Do not overestimate him. Believers have the mind of Christ. We are already seated in heavenly places. We are God's inheritance. We have been given God's best gifts, His Son and His Spirit. We have been given everything that pertains to life and godliness. We have been given every defensive shield to repel the enemy's advances, and we have been given the one heaven-ordained offensive weapon, a sharp two-edged sword, the Word of God. It is not a club to wildly, or carelessly bludgeon adversaries. It is a precise instrument to prick our consciences and expose our hearts.

Learn to wield it rightly. Academic credentials are not required to rightly divide it and apply it. What is required? Humble, persistent surrender and submission to its judgments!

The Holidays Have Arrived

And this will be our first without Dad. Yes, there will be some sadness, wistful remembrances of holidays past, mingled with some laughs and many fond memories, but we need not give in to despair or hopeless grief. That's the blessing of being "in the Lord" now.

Last year's holidays are firmly etched in my mind because as we approached them I sensed that 2017 would be our last ones shared with Dad in this world. He was slowly declining in almost every functional way. He did well last Thanksgiving and enjoyed a big meal that day, but I was frequently linking arm-in-arm to steady him whenever we went out in public.

December's decline was obvious, and I began to suggest to people that if they wanted to visit Dad while he was alert and able to recognize them that now was the time. His long dormant hernia was becoming a problem, which led to his early departure from the Chapel on Christmas Eve. He was never able to attend again. Dad enjoyed Christmas Day, ate well, received family, and opened gifts. The week leading up to the New Year was uneventful, and Dad adjusted well to his new hospice nurse. Then, New Year's Day 2018 came, and Dad began the homegoing process. He got up, and we did all of our usual routines, except this day was different from all others as Dad slept alot, and thus began the final week which I have previously described.

I was astonished at how quickly the Lord decided to take him home, and I'm still amazed at the speed of it all.  Primarily because, when Dad passed, there was nothing significantly wrong with his physical body. He was not ill. He was just tired. He went to sleep. And he slept his way home.

The holidays will be good, because the Lord is good. It's important to be reminded that food, gifts, events, and people do not make the holidays special. The Lord does! Believers in and followers of Christ never say a final goodbye. Our separation from Dad and other believing loved ones is temporary and brief. Life is a vapor, which reminds me that I'm on deck. So, when You are ready, Lord, bring it on!

Happy Thanksgiving!

Dad's Last Four Years

For much of Dad's final four years, I was his roommate and primary caregiver. Recently, I was talking with a friend and we were reminiscing about our late parents, and as he was speaking, it dawned on me that Dad did not spend one night in a hospital or long-term care facility during those years. Not even one night! In fact, his last overnight stay in a hospital was for a minor heart condition about 15-17 years ago.

Dad had several doctors, primary care (basic care and routine bloodwork), urologist (treatment for a moving kidney stone), neurologist (testing and medications), podiatrist (toe nail trimming), even a surgeon's consultation (for an opinion on a troublesome hernia). He used the local hospital for some tests, x-rays, and a renal stone crush procedure, but he never required hospitalization. Think about how remarkable that is for someone in his mid-80s and facing the natural end of his life.

What can I conclude? Dad was very blessed! And my sister, brother, and I were too!

Tropical Storms & Dad

We're getting ready for another tropical system (Hurricane Michael) to sweep across south GA. I bought some water and a few supplies yesterday to prepare. But I also had a flashback to September of last year. A tropical system came through the area with 60+ mph winds and heavy rain, which downed trees and caused extensive area-wide power outages.

Dad had become a bit of a roamer, but on that day, I didn't have to worry about him slipping away. The wind and rain kept him confined, but we eventually lost power during the worst of it. As soon as it let up, we drove the van around town to give us a break from being house-bound. That's when I realized that we would be without power for awhile, after seeing the damage the storm had caused. It was only  two days and two nights, not long at all compared to other storm events, but Dad and I really depended on lights and TV. For the last year of his life, Dad didn't care much for TV or sports or the Braves. He couldn't hear it anymore, but between magazines and TV, he could be content and mentally occupied by it in the evenings before bedtime. So for two nights, we sat side by side, with no TV, no AC, no internet for me, and with only flashlights, not enough light to read by. So what did we do? We rediscovered the art of conversation. Amazing huh? Go figure!

Night time was never easy. I often had trouble sleeping, listening for Dad, in case he needed me, but those nights were most difficult because of the darkness of the house. We made it fine. When the power came on two days later, I was grateful, and he was too. He knew things were returning to normal, and I was relieved.

Hurricane Michael, I guess I'm ready to face you too. And I would be OK if Dad were here to keep me company, but honestly, I'm happier that he's home.

Dad's Birthday

Today would have been Dad's 87th birthday. It seems strange not being able to tell him "happy birthday", or sing it to him. No family dinner is planned tonight. We don't get to see him smile while opening birthday cards or gifts. That's what makes today strange, but not sad. Why?

He's no longer trapped by illness, and because of God's grace, he's never been happier or more alive. It is well! He is well!

Feelings Don't Care About Facts

If you ever go down the blessed path of becoming a primary or significant caregiver for a loved one, be ready for harsh, even accusatory, feelings that ebb and flow after that season of life ends. By that I mean, no matter how much you love, you serve, or you sacrifice, unsteady feelings will rise up at various times to accuse you of giving up on your loved one, of doing nothing to help him at the end, of just letting go and letting him go, of being selfish, etc. They are feelings. They are not rooted in facts. But they are powerful. Feelings don't care about facts, so it's an important part of the healing and grieving process to recognize it and be honest about it.

For me, these unnerving feelings started the week after Dad passed away. They come and go, are mostly infrequent, but something unexpectedly triggered them again recently. By God's grace, I'm not paralyzed by them. I'm not shocked by them. And I assume they may rise up to taunt me for months, even years, to come.

And yet, Dad was a blessing. My time with him was precious and rewarding. Our family was blessed. There are thousands of little events, episodes, and decisions that I could obsessively replay in my mind, nitpick, and make different choices. I refuse to do that. I have to refuse that. Of the big picture and the choices we made to care for Dad at home all the way to the end, I wouldn't change a thing!

Dad: My Little Boy :)

Dad's dementia had the effect of producing an innocence, a greater willingness to trust, and a dependence on us to care for him and guide his days. In practical terms, he became my boy, just like a son, during this journey. As a dependent child, he could be peevish and want his way like any kid does. He could demand, pout, walk-out, even give the silent treatment. While individual moments were frustrating, and honestly, a few of them were tense, I look back now and think without a doubt, that it was all so cute and sweet. Fortunately, Dad was mild-mannered for the most part in his wants and whines.

Perspective always helps when we get to pause, look back, think things through more deliberately, and filter issues, events, and people through a divine perspective, God's Word and God's Kingdom.

The Future Was Off-Limits

Huh, you ask? Yes, it's true. As a caregiver immersed in my ministry to Dad and responsibility for his well-being, I could not think about the future. I was never allowed to go there. I could not plan for it. I could not think much about relationships; indeed I had no choice but to allow many friendships to go dormant. I met a godly woman who could have been "the one", but that was not to be, nor could it be, because it was inconsistent with the season of life that the Lord appointed for me. I could not think about future ministry, pastoral or missionary opportunities. Goal-setting was impossible. Vision-casting was impossible. I can't help but laugh at the folly of all the books that have been written on leadership, vision, goals, etc blah etc. Those may be interesting when you're 26 and free to let your mind roam, but not when you're middle-aged and struggling every day to care for a loved one.

"I die every day" (I Cor 15:31): Dying to self is never portrayed in Scripture as optional for a Christ-follower. It is the reality of the new birth; no one can come to Christ unless he is willing to see his old life crucified with Christ and begin to live new in obedience to Him.

"Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus." (Phil 3:13-14)  Could I plan for the future? I often thought, "I have no earthly future." It didn't exist for me. There was no future, just today. Could I agonize over regrets? about yesterday? No! It was over and done. I couldn't give place to that kind of paralyzing remorse. Today was at hand. Could I worry about tomorrow? What? I saw no tomorrows. The present day was completely full and enough on its own.

Could I pastor a church? Not possible. Could I plan a mission opportunity? Not possible. Could I lead a discipleship group or ministry? Not possible. Even the everyday things of this world like personal healthcare, financial planning, reading books, whatever......nope nope nope and nope! I learned to live one day at a time. That's all I could do. That's all that was allowed. What a great lesson from the Lord! And I'm still living that way now. Some may think I can't move on. Some may think I'm depressed and stuck. Some may think I don't know what to do now that Dad moved on up and went home. Some may think I'm not considering the future (oh to the contrary, I think much, often, and highly about our Lord's glorious return).  Some may think I'm not a planner or a vision-caster. Whatever!

Today is sufficient. I live for the Lord this day. I must seize whatever He appoints for me today. I must trust Him to show me what's next. I must be faithful to the last thing He revealed to me in the meanwhile. So, yall can go ahead with your leadership goals, vision-splaining, dreaming dreams, yada yada yada, but I've come too far to turn back now. I hope you know I'm not belittling anyone else of how the Lord may be leading you in your journey, but don't impose that on me. None of that stuff matters to me now.

As far as I'm concerned, the future is still off-limits. Oh, I know what it will be, Rev 21-22 makes that clear, but I refuse to miss today. I'm not giving up on what the Lord has for me today. I must die to myself today, live joyfully in Christ today, and if He allows this body to rise from sleepy slumber tomorrow, then I will gladly repeat it all for His glory. Or even better, if He says "come up here, son", you betcha Lord, I'm ready and eager to meet you.

Maranatha!

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.

He Was My Dad; He Became My Son

I wrote earlier about Parenting My Dad and have made references to Dad's child-like characteristics in several articles, but it still amazes me what happened to our relationship during the last four years we lived together. I never expected it. It was the farthest thing from my mind. I never considered it possible. I intended to play the role of a son who just wanted to help his Dad live and finish well. I didn't think of it as a duty or a responsibility or a repayment, because I knew Dad deserved more than we could ever give no matter how hard we tried, but try we would and try we did.

To my shock, Dad became my son, my boy, my "Boo". It still astonishes me. That's why I write over and over that dementia robbed us of nothing. God added to us far more than anything the disease could take from us.

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.

On This Easter Weekend

We should all be reminded that our hope is in the Lord, and must be in the Lord. Even with all of our inventions and innovations, we cannot solve the problem of death, because it is a sin problem, not a medical problem. Our mortality rate remains 100%, and will continue this way until the Lord returns. Despite our research, we cannot defeat death. Despite our medicines, we cannot prevent or heal dementia. Despite our technology, we cannot stop cancers, strokes, heart attacks, or all of the other conditions that cause our bodies to cease. Technology and medicine is not our ultimate hope. The Lord is our hope.

"Christ died for our sins, according to the Scriptures, He was buried, and He was raised on the third day, according to the Scriptures." (I Cor 15:3-4)  This means that Christ died as the perfect Substitute for our sins just as the Old Testament prophesied and the Lord Himself promised. This means that He did, in fact, lay down His life, and having paid the full and only price for our sins, He dismissed His Spirit, experienced bodily death, and was buried. This means that He rose from the dead, that He raised Himself from the dead just as Scripture prophesied and He promised. And when you become persuaded that He is God's salvation out of sin for you and then place your faith and trust in Him, to follow Him, you will receive His resurrection, eternal life. No one wants you more than He does. No one will ever make you feel more welcome than He does.

Our family misses Dad. We will miss him this week, but we will have a joyful celebration of resurrection. How? The Lord said, "Because I live, you also will live." (John 14:19) He lives forever in the power of an endless life. Dad's faith in Christ was not in vain. In fact, every Christ follower, who has left this world for the next, is more alive now than ever. I look forward to that day too, when the Lord calls me up to go home OR He comes back to gather up all of His kids. What a day! What a glorious Day that will be!

How My Faith Grew

I just watched my Dad trust me completely to provide and care for him. Dad became an object lesson of what faith in the Lord should be. As he became more childlike in many aspects of life, he became a simpler person. By the way, I mean "simple" in a positive way. Maturity in the ways of this world brings with it confusion, corruption, and complexity. But Dad returned to a place of simplicity, quiet contentment with himself and the world around him, a child-like trust that his children would not abandon him, that we would care, nurture, and love him, and when he faced a situation beyond his ability or power, he knew we would step in to wield power on his behalf.

I have written earlier about the stewardship responsibility of being a caregiver. It is an awesome task, involving God-like authority, with life and death decision-making capability, and powers over health, finances, livelihood, etc. Just the thought of it chills me. And Dad learned to trust me more and more. He could accept my help when he was struggling. At meal time, at bath time, at shaving time, at dressing time, and at bed time, he realized that I would be strong and consistent on his behalf to do anything, beyond his skill, power, or ability, to care for him and his needs. He was never completely deprived of his mind or memories. Faith is fueled as we look back across our lives and see the hand of the Lord guiding us and stepping in to act on our behalf. Similarly, Dad knew that I would act on his behalf, not because he could see it or touch it, but because he imagined it to be so, based on what he knew about me.

This reminds me of Hebrews 11:1.  "...faith is the assurance of things hoped for, the conviction of things not seen."  The Lord used Dad to develop my own faith, by reminding me about its nature (child-like trust), its object (the Lord Jesus Christ), and its benefits (watching the impossible become actual). I pray as I grow in the grace of the Lord that my faith will ask big things of the Lord, and expect big things from Him.

Caregiver's Isolation

Caregivers often become isolated, especially caregivers who serve dementia patients. Dementia leads to isolation, a decline in social contact, activity and interest in others. It can spread to the caregiver too. Because public life becomes difficult or confusing for the patient, the caregiver adapts to that new reality and begins to isolate too. I experienced this and had to fight away the impulse to stay home all the time, or decline invitations to be with others simply because that's "easy".

I have written about this already, but feel compelled to repeat it. Avoid social isolation as a caregiver. Don't neglect time with other people. Stay active. Stay sociable. Your needs are not good or bad; they just are. Don't underestimate the refreshment of spending some time with others when you can arrange it. Ask for help, and just enjoy the surprise of someone who volunteers to help you. You will be a more effective and efficient caregiver if you take care of yourself. Caregiving is draining; don't deprive yourself the refreshment of others' company. You will definitely need the energy it offers.

Tension Between The Lord's Providence & Dad's Decline

One of the faith struggles I experienced was the tension, not so much real, as just inside of me, between knowing my almighty, able, loving Lord with His beautifully crafted plans for us AND watching my Dad slowly decline mentally and physically. I trust the Lord. I believe Him. I love Him. I talk to Him. I try to listen to Him, and yes, that is a struggle. I know He is sovereign over us. I know His providential kingdom plans are unfolding according to His will, and that back-up plans don't exist. His plans cannot fail. The tension rose between my yearning for a different future for my dad (in this world), and the faith awareness that God had plans for Dad in the next world. Those plans are good and eternal, but those plans would not give Dad a better mind down here, or a return to physical vitality. Regardless of my dreams, desires, or prayers, Dad was making step-by-step preparation for his journey home to the next world.

The tension was not frustrating or disheartening. It was instructive. It fueled my faith to lean into the Lord. It incited me to pray for incredible things, difficult-to-imagine things rather than lesser things like better hearing, clearer thinking, physical stamina, vitality, or conversational ability. Those things are nice, but they are not eternal. The tension reminded me regularly that "the wages of sin is death, but the gift of God is eternal life through Jesus Christ our Lord." (Rom 6:23)

It is not crass or uncaring to point out that dementia, just like every other physical, mental, and emotional infirmity leading to bodily death, is the fallout from sin that was imported into this world by the serpent (Genesis 3). We were not created for this. We were not created for disease, dementia, or death. We were not created for a casket, a grave, or a tombstone. We were created for life with God and the enjoyment of Him. The just consequence for sowing sin is reaping death, but God offers redemption and life through His Son Jesus Christ. When we place our faith in Him for salvation, God turns bodily death into a temporary rest, and He makes our dead souls come to life, alive now and alive forever. So that when our physical bodies go to sleep (for a season until the resurrection), our souls (the real us) go to the Lord. Absent from the body means that every believer will go home and be present with the Lord. (II Cor 5:8)

Thankfully, the tension is temporary. The joy of the Lord will endure forever!

Nursing My Dad

For about a year or more, Dad lost the ability to communicate, especially his own thoughts. If you asked a clear, simple question, then he would reply "yes", "no", "OK", or "alright", but anything more was challenging and rare, and he really struggled to speak his own thoughts, those were usually gibberish-like. I had to read his body language. I had to read his mind based on our mutual experience and life together. This was especially important when, just like an infant, Dad was not feeling well, but he could not tell me what's wrong.  It helped that I knew his medical history too, and that for much of his senior years, he enjoyed relatively good health with few healthcare needs.

As his nurse, I had to sort through his symptoms and make guesses just like the parents of little ones. For the most part, I guessed right on abdominal or stomach distresses, cramps, headaches, colds, etc. And on two occasions in 2017, I guessed rightly that it was time to see a doctor (at the hospital ER both times). One was related to a kidney stone; I knew the symptoms and I knew his history of those. The other was related to a hernia. He had it for years; I always anticipated it would become a problem and it did.

My point is this. Don't panic. You can do it too. Take a breath. Pause. And think through the symptoms. Use your loved one's medical history to guide you. You will make the right choices too. But above all consider this, loving care and service is always more important than obsessing with medical precision on every thing you or your loved one experiences.

The Joy Of The Lord In Dad, Our Child

That seems like a strange title, and it is to me too. In some ways, Dad returned to childhood, not just a randomness, but his actual childhood. We were given a glimpse of our Dad in the days of his youth. It was informative, and it was often funny. Dad was just like us, or rather, we were just like him. He experienced all the quirks, peculiarities, peeves, deceptions, and moodiness of kids. Many, many times my sister, my brother, and I were brought to laughter by some of Dad's antics. There was so much joy, joy in our Dad, and joy from the Lord, who compensated us in ways that we will be counting for the rest of our lives down here.

Another aspect of that joy was watching Dad move beyond his youth, to become toddler-like, which included innocence and naivete and dependence. In a mysterious way, which was also a very gracious gift from heaven, the Lord reversed some of the aspects of Dad's humanness and fallenness. The innocence was beautiful and sweet and fun. Dad could appreciate what we were doing for him. He was capable of thanksgiving.

It causes me to think about our original creation purpose (Gen 1-2), essentially we are designed to live with God and enjoy Him, free from the distortions that sin causes. Redemption in Christ not only undoes the effects of sin and the fall, but it will take us far beyond into the joy of God's glory than the original creation design. How great is our God!

Factors Contributing To Dad's Dementia

PLEASE NOTE: THERE IS NO SCIENCE OR RESEARCH IN THIS ARTICLE. IT IS MY OPINION AS A SON WHO LIVED WITH AND WATCHED OVER MY DAD'S HEALTH DURING HIS LAST YEARS.

There has been enormous research on the broad range of dementia illnesses and Alzheimer's disease, and while medical developments, testing and treatments show promise, we know that we're not "there yet" with regard to prevention or treatment of the disease. Dad was 80 when his neurologist noted "mild cognitive impairment", age 81 with "mild memory loss and forgetfulness", and age 82 with "mild cognitive impairment likely progressing to senile dementia." While many factors contribute to the disease's onset, genetics are believed to play a role too. My dad's family through his father, also including extended relatives, were known for longevity of life, but several of them also experienced late-in-life memory issues, including his grandfather, older sisters, uncles, and cousins.

While Dad may have inherited a pre-disposition to the illness, other factors likely contributed. He experienced significant hearing loss in the last 15 years, declining to minimal hearing in his left ear only. He tried different hearing aids, but eventually gave up on them and threw them away. He experienced additional vision loss, typical for his age, but he stopped using his reading glasses, and reached the point where he couldn't pass an eye exam to obtain new ones. Add hearing loss and vision loss to memory loss and the result is less conversation, less interaction with others, and less reading.

That's significant and further compounded by the emotional and physical toll on him while he cared for his terminally-ill wife Peggy. He never quit. He cared for her. He drove her to many out of town doctor appointments and cancer treatments. He stressed. He grieved. He lost a lot of weight during that year (2013).

What did I learn? Monitor your hearing. Conversation is important. Social isolation can contribute to dementia. Read and keep reading. Make sure you have eyeglasses that allow you to read comfortably. Stay active. Deal with stress. Meet your needs. Balance your diet. Maintain a reasonable weight.

Then having done all you can do, wait on the Lord to do what He will do, knowing that He does all things well.

Why Me?

We are prone to ask that question in our low moments. We love self-pity, don't we? We bathe in it to avoid whatever problem or personal failure is troubling us.

There is a better question. I'm not writing four paragraphs to combat "woe is me" distress or try to explain away our feelings; in fact, I'm not commenting at all. I'm just going to ask the question, move along, and leave it for us all to think about.

Why not me?

Good Stewardship: Legal Documents

I am thankful that my Dad was a common-sense, good steward of his resources, and that included having appropriate legal documents, which he updated when life circumstances changed. The last major life event he experienced was the death of his wife Peggy in 2014. After that happened, my Dad had the awareness that certain things needed to be done to move on with the last season of his life, which he knew he was entering. He completed a new power of attorney. He knew his life insurance needed to be updated, so he and I contacted the company to name his beneficiaries. He met with his lawyer to update his will, which I haven't probated yet. There's no rush primarily because Dad enjoyed a long retirement, and spent, gave away, or otherwise disposed most of his assets long before he reached his last years. He lived comfortably on a retirement pension, and with no debts and a simple lifestyle, he knew that he wouldn't need much to live well, so he made decisions while he was alert and able about assets, of which, only two remain in his name and can be easily handled through his will.

Very important, he completed a health care directive in which he clearly outlined his end-of-life instructions. Why was this important? Because when he went to sleep New Year's week, my sister, brother, and I knew that he was preparing to leave us. We read his directive together and agreed on what should happen over the remaining days the Lord would give us together. His choices were clearly written. That's why we knew that he wanted to stay home, rather than enter a care facility. We chose to continue with hospice care, rather than be discharged and have him admitted to the hospital. Over that last week, he was not subjected to tests, needles, catheters, or filled with fluids that his body would struggle to process. True, we did not have an exact medical diagnosis of what was happening inside of him, but we didn't need that. He wanted to sleep, and the Lord had other plans for him. He knew it. We knew it. I'm glad he stayed home. I'm glad we were there with him every step of the way. I'm glad it was just Dad and the three of us together when the Lord visited the house that January 8th evening. I'm glad we could touch him, kiss him, talk to him, pray with him, and he could open his right eye to see us as he drew his last breaths. And it's primarily because he made his wishes known with a health care directive.

End of life stewardship is important. Make sure you have a will, a health care directive, updated insurance beneficiaries, and if necessary, a power of attorney, especially if you are single. Otherwise, if you reach a point when you cannot communicate, decisions will be made on your behalf that you would not want, and assets will be spent in ways that you do not approve. It's called stewardship, and it matters. Read some of the Lord's parables and see how seriously He regards it.

Taking Away The Keys

Knowing how and when to curtail an aging parent from driving is a challenge that every family may eventually face, but a gradual weaning worked best for Dad and our family because of several factors: (1) we had already decided that Dad did not need to live alone anymore; (2) we would be active and present with him for all of his needs; (3) that he would never spend another night alone; (4) Dad was still a very good driver; (5) Dad's dementia was very slowly progressing; and (6) he had shown no loss of direction or where "home" is located.

We didn't take away his truck keys or driver's license immediately. another family member or I volunteered to drive him wherever he wanted or needed to go. That helped Dad accept riding "shotgun".  He would occasionally grab his truck keys and ride over to the farm and return home within 30 minutes or an hour, but more and more, he acclimated to riding in the truck as a passenger; sometimes, I grabbed his keys and suggested "Dad, let's get in the truck and go for a ride." With me driving, he adjusted and accepted it.

Even when he stopped driving, having a license in his wallet was very important to him. He often looked at it and checked the expiration date. Yes, he was very aware of that, and renewal was important to him. Fortunately, he also had a state-issued ID, so when the time came for his DL to expire, I knew that he could not complete the renewal process, so I swapped the DL with his state ID, which looked alike. He was content. That ID was more important to him than the actual act of driving. He kept a couple of keys in a ring in his pocket. Even though there was no vehicle key on it, it was comforting to him, along with having his wallet, ID, and some cash, which he counted......often! As the dementia eroded Dad's abilities, he did eventually begin to have moments when he forgot that he was "home" when he was, in fact, home. By then, I had already placed all vehicle keys where he could not access them, and he had completely stopped driving. Though the desire to drive did not completely go away, we had some evenings when I struggled to reassure Dad that he didn't need to go "home" because we were already safely home. Eventually, when Dad began to misplace most things, including his key chain which unfortunately had his Army-issued dog tag from 1953, we reached the point where he didn't need to carry his wallet either, and he didn't miss it too much.

Foresight about what was coming, choosing a gradual process rather than a sudden end to driving, removal of the keys to a safe space, and plenty of respect for Dad's individualism made it work for us. I pray the "how" and "when" is revealed to you at the appropriate time. It won't be easy. Respect your loved one, preserve his or her dignity, and you can do it too.

And As For Tomorrow.....

.....I had to ignore it.....alot! I thank the Lord for His words:

"do not worry about tomorrow, for tomorrow will care for itself. Each day has enough trouble of its own." (Matt 6:34)

We can say many things about worry. It reveals our fears and regrets, the things we dread most. It plays to our feelings, which can crash with the pressure applied by changing circumstances. And most important, it exposes our faith, that is, what kind of faith we have.

Saving faith is active and alive. It is more than a mental acknowledgement of the gospel of the Lord Jesus Christ, but it works. It works for God's glory and on our behalf. It is fruitful and productive. The Lord said we would know it by the fruit. It's not proven by words or mere claims of Christianity. That's dead faith, just words. Saving faith results in an actual product, a transformed life when we turn from sin and follow Christ.

Sure, I had to think through, do some homework, and make plans for a variety of issues that might come our way tomorrow: healthcare needs, in-home nursing assistance, possible long-term care options, hospice, taking away the keys, when communication would become difficult, how and when to use legal documents, end of life issues, handling Dad's affairs, etc. We can do all those things and alot more without obsessing over them, without denying our faith, without offending our gracious, faithful God, or without supplanting His sufficiency with our own self-insufficiency. It is good and right to methodically arrange everything you can, to consider contingency plans and to research options. That's not faithlessness. That's servanthood.

But worry is obsessive, and have you noticed that it is often not real or never realized? We worry about things and events that never happen, except in the strange corners of our minds where we play these fictional events over and over. Yes, worry is disobedience. Yes, we worry. Yes, we are wrong to do it, but thank the Lord that His grace is sufficient to cover a multitude of sins, even our faithless doubts that He cares, provides, and will intervene on our behalf to accomplish His will and purpose.

To Serve Dad Well, Yesterday....

.....had to be forgotten. No question about that. I could not dwell on yesterday's distresses. Today was at hand. Today's needs had to be addressed. Today's challenges had to be met. Today's joys had to be celebrated. Don't underestimate the importance of celebrating every success, every joy, every bit of humor, every happy thing about the one you love, and every evidence of God's care and intervention. Celebrations preserved my sanity!

I have often thought about, prayed over, and recited Phil 3:13b-14:

"...one thing I do, forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus."

The context of those words is clear if you read the surrounding text, but this Scripture has far-reaching applications across many areas of our lives.

Yesterday's missteps would only anchor me down if I dwelled excessively on them. I took each one as a learning opportunity, absorbed my lesson, and moved on, while praying that my application of the lessons learned would make me more efficient and effective as Dad's caregiver. I could not allow yesterday's regrets to multiply into today. I confessed them to the Lord, sought His forgiveness and help, and apologized to Dad for my lapse. Today would offer its own unique challenges (Matt 6:34). I learned that I could not allow yesterday's failings to carry forward into today, or I would lose much of my joy in the Lord and my servant's desire.

Oh yeah, and not only was forgetting yesterday a challenge, but I also had to deny tomorrow's worries from seizing control of my heart. More on that in the next article.

The Caregiver's Guilt, The Benefits Of Stress, Part 8

Caregiving has advantages too. While caregiving has a high cost, there are rewards. It is sometimes known as "caregiver gain." Gains include a greater confidence and sense of purpose, personal satisfaction, and increased family relationships and closeness.  The demands of caregiving cause caregivers to move around more, and stay on their feet. Exercise can improve physical health and mental awareness. Speaking of mental performance, many aspects of managing another person's life and well-being can promote right and better thinking: monitoring medications, meal planning and preparation, scheduling, activities, medical care, financial responsibilities, etc. Caregivers often feel enhanced satisfaction and pride in their work and service. That is an important factor to deal with the stress. Caregivers are more adaptable, skillful with end of life issues, and become comforters during the season of bereavement.

For individuals who are prone to guilt and its crippling effects, you must manage your stress, resentment, and fear such that caregiving serves everyone's best interests rather than imprisons you. You can research and find numerous recommendations or suggestions for enhancing your performance as a caregiver, but here are some issues that helped me most:

-Take action: meet your needs. Needs are not good or bad; they just are. If you need some thing or some time alone, find someone to be with your loved one. Don't underestimate the healing and refreshment of an hour or two of respite, and certainly more, if you can arrange it.

-Ask for help: Call a friend or family member to admit your need. Sharing your burden can relieve some of the burden. You may be surprised to find out who is willing to help if you ask.

-Stay active; stay sociable: don't neglect people; avoid isolation.

-Draw near to the Lord: He will draw near to you. He promises.

You will be a more effective caregiver if you take care of yourself. Your loved one never wanted or expected you to become a slave. When you care for yourself, you become more efficient and effective caring for your loved one. Yes, guilt is part of caregiving. Don't ignore it. Admit it. Learn from it. You may be able to use it to become the caregiver you hope to be and that your loved one wants and needs you to be.

The Caregiver's Guilt, Stress: Part 7

Caregiver stress results from exhaustion, anger, and/or guilt, usually enhanced by unrelieved care for a chronically ill loved one. Over 60 million Americans are providing such care for an average of 40 hours/week. 13 million of them are caring for their own children concurrently. Caregiver stress rises with the additional burdens of memory issues, sleep problems, incontinence and toileting difficulties, wandering, confusion, aggression, etc. Caregivers experience high rates of fatigue, insomnia, stomach disorders, and weakened immune systems. Add to the list: high blood pressure and diabetes, which all cumulatively has a life-shortening effect on the caregiver. Because caregivers are immersed in their roles with day/night hours, they often neglect their own health. As a result 60% of caregivers have decreased life expectancy.

While caregivers have higher rates of physical problems than their non-caregiving peer group, the most common symptom of caregiver stress is depression. Roughly, 70% of caregivers experience depression. In severe cases of Alzheimer's disease, caregivers can begin to experience the symptoms of the patients in their care, most commonly experiencing progressive memory loss themselves. There are many similarities between caregiver's syndrome and PTSD. It is difficult to provide quality care in this state of distress.

Up next: An article on awareness and help.

The Caregiver's Guilt, A Message From Scripture: Part 6

Guilt is often associated with punishment. Personal feelings of it lead to self-punishment. Familial guilt leads to punishment from our parents. Breaking federal or state laws leads to a guilty verdict in a court room and punishment by a judge. Disregard of God's law carries consequential risks now and punishment in the next world. For example, Romans 3:19 explains that because of our disobedience to the Lord we are exposed for judgment in a divine court room. The whole world is guilty before God. Why? How? We have abandoned Him and His ways. We have ignored Him. We have insulted Him. We have offended Him. We have belittled Him. We have disobeyed Him. We have disregarded Him. We have blasphemed Him. And on it goes. Now, that is some heavy guilt indeed.

But thankfully, the Bible doesn't leave us dead and condemned, without hope, joy, or redemption. Instead, according to I Cor 15:3-4, Christ (the perfect fulfillment of God's Word and will) died for our sins (taking our place, our guilty verdict and its death penalty), was buried and rose again the third day (victorious over sin and death). He lives today to welcome you and that whoever calls upon His name for mercy will be saved (delivered, redeemed, forgiven, declared "NOT GUILTY" in the court room of heaven). Christ did not become a sinner when He died on the cross, but as our substitute, He was judged as a sinner (you, me, and all the other wretches just like us), receiving the punishment and abandonment and death that we justly deserve for our sins. Having taken our place and punishment, He rose from the dead in the power of an endless life, and not only takes away our sin, its penalty, its guilt, and its control over us, but accredits His righteousness to our account. So when our Heavenly Father looks at you, dear Christ follower, He sees the perfect righteousness of His own Son Jesus Christ, and He is pleased and satisfied. Forever! (Rom 6:23)

In spite of the deep pangs from guilt that accompany an awareness that you have offended God in your thoughts, motives, words, and actions, the message of redemption is so simple and beautiful: "for God so loved the world, that He gave His One and only Son, that whoever believes in Him should not perish but have eternal life." (John 3:16) And what is the result of that kind of faith? Freedom! If the Son of God sets you free, you will be free indeed. (John 8:36) You will not be a sinner falling into the hands of an angry, offended God, but instead His child, fully and irrevocably adopted into His family, always welcome and wanted with Him. That's the home and family I want. I pray it's true for you too!

The Caregiver's Guilt, Our Conscience: Part 5

Our conscience can accuse us of wrongdoing, of disobeying the word and will of the Lord. A conscience can be evil, corrupted by sin, and yet cleansed by the sacrifice of Christ. A conscience can be disobeyed, ignored, and defiled. Disobeying your conscience leads to compromise, which always multiplies. Compromise never happens in isolation; it produces more of the same. A conscience can be trapped within the pride of dead religious activity; we can imagine ourselves to be something in the family of God when we are not serving the purposes of Christ's Kingdom at all. The conscience can be seared; the gravest condition of all. It can become dull and non-responsive through repeated defiance of its impulses to warn and restrain us.

But most commonly in the church, a conscience can be weak. As mentioned earlier, everyone is on a different growth trajectory in Christ. There are those who are more mature in the Lord, there are those who are less mature in Him, and those who are newborn babes. Each has a conscience that has been informed to the extent of their experience of the Lord and Scripture, and since no two people in a church family are at the exact same place of spiritual growth, this is where the greatest care is needed. The mature have to be careful to exercise their liberty and growth in Christ in a way that does not wound weaker, immature believers. The mature must remember that weaker brothers and sisters cannot just take "our words for it", and go along with us. We don't teach them to deny or defy their consciences, but rather we patiently wait for the Word and the Spirit to grow them to maturity and more fully inform their minds about the truth. Similarly, even though it is difficult food to swallow, immature believers must be instructed to avoid harsh judgments of others in the church who don't agree with their opinions on spiritual matters. We must be patient with younger believers, but that does not mean that we are silent and consent to their improper use of God's Word or the inappropriate judgments of less well-equipped consciences. It's ok to say to a newbie, "hey there, wait a minute; slow down a bit; don't be so hasty or critical. Where did you get that opinion? Where is that idea found in the Scriptures?"

Most important, we must never encourage anyone to violate his conscience. That is devastating. Comply with your conscience to the extent that it is informed in the truth of God, while you wait on Him to grow you further, and by all means, don't ignore your conscience. There is a reason you feel the way you do. Find out why!

The Caregiver's Guilt, Our Conscience: Part 4

We experience the condition or feelings of guilt because we have this amazing internal awareness that was gifted to all of us by God. It is imprinted on the heart and mind of every person. The Bible calls it our conscience. The dictionary defines it this way:

(1) the inner sense of what is right or wrong in one's conduct or motives, impelling one toward right action; (2) the complex of ethical and moral principles that controls or inhabits the actions or thoughts of an individual; (3) an inhibiting sense of what is prudent.

That does not help me too much to explain what my conscience is, it's purpose and function, or why God gave it to me. But from Scripture I learn that it serves several functions and operates on multiple levels. For example, my conscience is active when I am being observed by other people and is active in a different manner when no one can see me. Of course, Christians know that Someone (e.g. the Lord) is always watching.

Searching through a Bible concordance, the word is used numerous times, and we learn it's meaning, uses, and warnings through the ways it is taught by the Holy Spirit. Positively, the Bible speaks of:
-a good conscience (Acts 23:1; I Tim 1:5,19; I Pet 3:16)
-a clear conscience (I Tim 3:9; Heb 13:18)
-a witnessing conscience in the Holy Spirit (Rom 9:1)
-a submissive conscience (Rom 13:5)
-an informed conscience (I Cor 10:28)

Conversely, the Bible speaks of:
-a conscience that accuses us or that we weaponize to excuse ourselves (Rom 2:15)
-an evil conscience (Heb 10:22) from which we can be cleansed
-a defiled conscience (I Cor 8:7; Titus 1:15)
-a conscience of dead works (Heb 9:14) which can be purified to serve the Lord
-a seared conscience (I Tim 4:2)
-a weak conscience (I Cor 8:10,12)

Rather than a dictionary definition, the word's use in Scripture is more helpful for our understanding. Reading down the list we can learn and apply some obvious spiritual truths. A conscience can be "good", guided by God's Spirit and Holy Scripture. A conscience can be "clear", when we live consistently in public and in private, and from one audience to another. A conscience "witness"es or affirms that we are speaking and acting upon the truth. A conscience can be "submissive" to the ways of the Lord, keeping our pride and self-sufficiency in check. A conscience can be informed by the truth of Scripture and by the limitations and stumbling blocks of immature believers. That's why we don't ignore, deny, or disobey our conscience, nor do we use our growth in Christ to lord over those who are immature and judgmental, because they lack a Bible-based worldview. Growth in Christ takes plenty of Scripture, instruction and mentoring in His ways, prayer, experiences with Him, and time; until then, our conscience can deceive us, but we heed it regardless.

Next article: our conscience accuses or exposes us

The Caregiver's Guilt, The Feelings Of Guilt: Part 3

Feelings are real, not imaginary. Guilty feelings are especially strong, even if your feelings are not based on the truth. Psychologists often write about the "notion of guilt", a series of internal conflicts based on your performance (of words, actions, intentions) when compared to standards that are important to you. So what you feel may not be based on the facts of the situation. Because you feel guilty does not mean that you are guilty, but I would never tell someone to ignore feelings since your conscience is one of the powerful warning mechanisms God has given to restrain and correct you when necessary. These feelings are often the most difficult, because they can defy the obvious facts of a situation, refuse to be checked against the facts, and can produce internal paralysis and depression.

Professionals also write about "existential guilt," which is the result of actual harm inflicted on someone else. This form of guilt is usually the most obvious where the feelings can be traced to specific actions. These feelings can result in the best or worst outcomes. When followed with humility, confession, and repentance, this form of guilt can produce internal healing. If the guilt is ignored, an individual's heart becomes incrementally more hardened, knowing the wrong that was committed yet failing to make any restitution whatsoever. It's a truth revealed in Scripture. A person's heart can be hardened and his conscience seared to the point that the individual no longer responds to convicting impulses, nor even have them again.

In terms of a caregiver, you may think that your needs are not important compared to your sick loved one, and so you begin to feel guilty that you even recognize your own needs or want to act on them. You can feel anger that your loved one's illness is unjust. The anger can turn to guilt. The feelings are so potent that you can feel guilty for feeling guilty.  Your feelings can be activated if you begin to think if only you had done more, acted more quickly, served more, sacrificed more, made different choices, worked on the relationship more, had not fractured a relationship, etc etc etc.

This is the part of caregiving that I am receiving the most feedback. People struggle to process the guilt that caregiving produced. Hang on and hang in there. Scripture has a Good Word for all of us!

The Caregiver's Guilt, A Definition of Guilt: Part 2

I looked up the definition of "guilt", and here is the language from on an online dictionary:

"Guilt is a cognitive or an emotional experience that occurs when a person believes or realizes, accurately or not, that he has compromised his own standards of conduct or has violated a universal moral standard and bears significant responsibility for that violation. Guilt is closely related to the concept of remorse."

That's a mouthful, eh? But some of this definition speaks about things that I intend to write about concerning "caregiver's guilt." Guilt is a real phenomenon. It involves your mind and your feelings. It may be a result of actual or imagined wrong-doing, but your mind and emotions respond the same regardless. The feelings of compromise can be triggered by awareness that you have violated God's standard, or your personal standard of conduct, or the standards of people you value most, or your culture/societal norms. Only one of those standards is immutable (never changes) and infallible (never wrong). The others vary over time, with experience and the acquisition of knowledge, with personal growth, and with societal change. You can be deceived into adopting arbitrary standards of conduct, and then surrendering your peace of mind when you miss that mark, which was already way off the mark.

Believing that you have failed the standard you most value, you then feel that the responsibility lies entirely upon you, triggering remorse, regret, a strained conscience, the desire to "do-over" some act, word, or decision, but further pained by the knowledge that "what's done is done".

These are some of the issues that I intend to write about in future articles, highlighting the personal emotions/thoughts/pains and the Scriptural truths that can heal us and set us free.

The Caregiver's Guilt, Part 1

I have been listening to your feedback on the God stories I have been writing about my years with Dad. I appreciate all of you taking the time to read and reflect along with me. The effort and investment to post the articles on the website seems to be edifying some people, and as the Lord enables me, I will continue to do so. I am hearing more and more from those who have already shouldered the caregiver's burden and are struggling to deal with what happened, the decisions that were made, the relationships that were built, re-established, or fractured, and the grief that there are no "do-overs." Caregiver's guilt is a heavy burden. Some of it may have merit to probe our consciences. Some of it is internally contrived, yet almost every caregiver wages a battle with guilt that no matter how much or how little you do, no matter what changes you make in your own life to bear the burdens of another, no matter what decisions you made, it was not enough; it was wrong; it was selfish, etc etc etc. The feelings are harsh and punishing.

We have heard about the phenomenon of survivor's guilt as the result of an accident or mass casualty event, but I never heard anything about caregiver's guilt until I became one. It will likely gnaw at most of us to some degree. I intend to write more about caregiver's guilt, and pray the Lord gives me the wisdom to do so. There is a definite audience to be comforted, but because of the seriousness and pain of the subject, I want to be absolutely sure I am speaking from the Lord's heart and mind rather than merely post my random thoughts.

Every Day Was Good. Many Days.....

....were great! That became a familiar theme whenever someone asked how we were doing. I would say "we're well; we're having a good day." Sure, Dad and I had difficult days, tough times, frustrations, but I can honestly say that we never had a "bad" day. How so? We were living one day at a time in the Lord's grace. Our cares were cast upon Him. He is our Advocate and Protector. Nothing about our family's situation caught Him off guard nor left Him wondering what He was going do. I am thankful that the Lord has His plans, but never any back-up plans.

Dementia added many complications to our lives, but no matter its difficulties, Dad never did anything wrong. When challenges arose, we would pause, take a breath, step back, admit that the challenge was not a big deal, set things in order and move on with our day. So no difficult day was ever a bad day, a day that made me regret my life with Dad or our family's decisions regarding his care. But many days were great. The Lord gave us many days where He miraculously subdued some of the disease's difficulties. He certainly tamed our/my reaction to the hardships, and gave us/me greater wisdom about what is important and what's not. So the good, but challenging days, were often surrounded by great days, filled with the kindness of the Lord, and love, both given and received, for our Dad.

Every day was a gift. And I thank the Lord for adding blessing to some days just in time to help me hold it together. And He often lavished that refreshment through my Dad, by leading him to cooperate in some simple way, or even better, an expression of appreciation or affection.

Good times! And yes of course, I miss them.

Still Growing In Grace

I reaped so many personal benefits from this season with Dad. I can still experience the excitement of the Lord just like when I first met Him. I can still learn. I am still teachable. I can adapt. I must continue to be flexible. I haven't arrived, and I know it. That's good to remember. Contentment is at home with me, and it is so welcome. There's always room for more of it. Knowing that there is a blurry line between contentment and complacency motivates me to be vigilant, and reminds me of the prophetic nature of my given first name ("Gregory"), and what the Lord would eventually do in me and through me. Look up its meaning if you are curious, but in ancient languages, my name is derived from the word that means "to stay awake, to be vigilant, responsible, watchful."

Notice the word "responsible." One use of the word is in Matthew 25:13, "watch therefore, for you know neither the day nor the hour." Talk about responsibility! My task from the Lord is not just to talk about the distresses of the day or complain about injustices or evils; I am responsible to act rightly and guide others in a priestly manner to be watchful of the Lord, His ways, and His return. That's why I sarcastically smirk at this generation's enlightenment that it is arriving to a higher learning and is now "woke". Void of wisdom, our culture today has done less with its learning opportunities than any previous generation with its information and level of discovery. Knowledge is the accumulation of information, facts, opinions, perspectives, etc and much of it has no relevance on anything important or eternal. Wisdom is the spiritual ability to process and apply that information in a way that highlights the person of God and His purposes. Wisdom is the real "woke"ness. HA! And it is in short supply today.

Scripture invites, urges, admonishes, even commands and demands that we "grow in grace and the knowledge of our Lord and Savior Jesus Christ." (II Pet 3:18)  My years with Dad affirmed that I can and am still growing, learning, assimilating and acting upon wisdom, sorting things that are true from the false, and the eternally important from the worldly mundane. I have often asked the Lord to never let me grow bitter as I age, to never let me get away with thinking I have arrived, to always remind me I can and must grow in Him, and that if I reach a place of bitterness, complacency, or self-sufficiency, I expect that He will deal with me firmly. I have asked for it, and I should expect it. Praise God! He's still working me......

Writer's Block

I have enjoyed writing these God stories about my years with Dad. It has been awesome to experience the Lord through this, and honestly, there are some spiritual lessons I'm learning now that I have time to look back and reflect. Time was always a premium, often escaped me, and I did not manage it well. I enjoy getting out and about, meeting folks and being more social again, but strangely, I find it is a hindrance to my writing. I understand why writers often get away to secluded locales. It makes sense now. I have been receiving feedback from the people who are following along. I hear you, and I appreciate you and your interest.

I pray that I will be able to continue as long as the Lord gives me the mind and wisdom to write on. Some of these topics are serious and hurtful. I know I need the mind of Christ to write and speak rightly. I pray He will grant it, and I will properly deploy it to edify all of you.

The Best Medicine For Dad's Dementia

Dad was first diagnosed in 2011 with a form of age-related senile dementia. It was mild in nature, and progressing at a very slow pace. In fact, during the years 2011-2013, he was highly functional, capable of independent-living, and performing the role of caregiver for his late wife Peggy. He could drive safely, run errands, garden moderately, and easily perform most basic tasks. During the years 2014-2015, Dad was functional, but needed more helps and reminders to take care of diet, wellness, hygiene, etc. Years 2016-2017 were the most difficult, as Dad eventually required much more oversight and assistance. By late 2017, Dad could not perform any task without step-by-step supervision or simply having someone else to do whatever was needed on his behalf.

Our family knows and believes that he flourished best at home. He was blessed to have limited physical problems and required minimal medical care, especially compared to the needs of many other aging seniors. I have no doubt that the love and TLC of family, along with the familiarity of his home, consistency and order, were the most effective medicines to slow the progress of his disease.

Doctors prescribed 3 different Alzheimer's medications over the course of Dad's illness. He never took all three concurrently, at most one or two at a time. I did some research and reading on Alzheimer's and aged-related dementia, and while future breakthroughs may find preventative and corrective cures, the commonly available medicines are not that at all. They are prescribed widely because the data suggests that some people will respond to the medicines with improved functionality performing their basic life-skills, for up to 2 years or so, during the early phase of the disease. Ultimately, the medicines cure nothing. In Dad's case, there was no noticeable benefit, but since he experienced no difficult side effects, he took the prescriptions consistently until mid 2017 when he lost the ability to swallow pills. He never lost his desire or ability to swallow food, but pills became a problem for him. I did not worry about his self-weaning from them, and continued to hand them to him to "take" simply because, in trying to swallow them, he would always drink a few extra sips of water which was a more important need for him.

My completely biased, non-scientific opinion leads me to believe that other at-home treatments worked wonders: being home, around family, activity, robust walking (all the way until Spring 2017), doing every task he could do for as long as he could do, reading, looking at newspapers/magazines, getting out in public, shopping, dining out, spending time with God's people at the Chapel, and of course, having regular God talks and moments of prayer.

While I would never dismiss the competent advice and help of medical professionals, we must never put our faith in them or their prescriptions. Don't underestimate what your personal investment and TLC can do to heal the heart, mind, spirit, and body of your loved one.