I Didn’t Plan This Journey – Through the Valley

“Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.” Psalm 23:4

          The word tells us that man makes his plans but the Lord orders their steps. (“A man’s heart plans his way, But the Lord directs his steps”  Proverbs 16:9)

To say that the things that we had planned, have changed is a massive understatement. But looking back, I can see God’s hand preparing us for this leg of our journey. When we moved to Richland Springs in 2017 and began remodeling our house, Larry was determined to make it a home I would enjoy, letting me make most of the design decisions. The remodel was long and arduous, we laughed, we argued, we kissed and made up and worked everything out, and in the end we do have a home I enjoy being in. But I didn’t plan to be in it alone.

After Larry was diagnosed with unspecified dementia, possibly Alzheimer’s, in 2020, we began making long-range plans, thinking that someday way off in the future we would need them. Durable power of attorneys, medical power of attorneys, updated our wills, all the legal paperwork that we might either one need in the future. Even with our finances, he tried to save as much as I would let him so that we would have money for the future.

Now we have entered another leg of our journey, and when we each reach our destinations, we will be in two different places. Larry will be in glory with his Savior, the Lord Jesus Christ, and I will be alone in the home that he created for me.

To say the events of the past 6 weeks has been traumatic is like saying a train wreck is a unplanned event. Larry had several falls, or if not falls, just found himself somehow in the floor. I was not able to get him up, and had to call for help. He had a severe UTI and three trips to the ER. With each event, his dementia became worse and other symptoms, such as hand tremors, became more and more pronounced. Our daughter, an RN, had first mentioned the possibility of Lewy Bodies disease, and I asked his neurologist about it in July. But he dismissed them as simply being a side effect of one of his medications. It was right after that we had the first trip to the ER with fever and the UTI.

The first week of August, Larry began to refuse to take his medications, and by the end of that week was refusing to eat or drink. His dementia had taken an ugly turn and he became verbally aggressive and angry. Saturday, August the 6th, our daughter, Rachael, her friend Jay, and our granddaughter Kaylee, were here, and I am so thankful God had put in their hearts to come. We had to call EMS to come and take Larry to the ER again. That trip, the ER doctor saw something that others had not. He said “I’m not a neurologist, but it looks to me like he has Lewy Bodies Disease with Parkinson’s”. When I looked it up online and began to read about Lewy Bodies, it was like reading a checklist of all of Larry’s symptoms, going back to 2015 when he was diagnosed with severe Restless Legs, also a symptom of Lewey Bodies. I had told the doctors that he had no sense of smell, and they did not see that as anything significant. But it’s one of the early signs of Lewy Bodies. A VA nurse, and Rachael, also an RN, had been concerned that Larry had Orthostatic hypotension. But no doctor ever put that with his dementia, even though it is one symptom of Lewey Bodies disease. Reading the symptoms of this horrible disease was like reading a checklist of everything that Larry has been through for the past 10 years. How is it that an RN, and an ER doctor, were able to see and put together all the clues that three neurologist that had seen Larry over 10 years had failed put together? To say I’ve lost faith in our Healthcare system is kind of like saying I don’t believe in Santa Claus.

When Larry left the hospital a week later, we had to move him to a nursing home because it was no longer safe for him or me for me to take care of him at home alone. And since then, he has continued to decline. When I have seen him there has only been two times that he recognized me and knew that I was there. Most of the time he was lost in his own little world. And now his condition has taken another drastic turn downward. As of this past weekend, he is no longer able to eat, to chew, or even drink from a straw. The fear is that he will aspirate on his food or drink if we try to force him.

I had not been able to drive to go see him for a week, because I had to have surgery on my wrist that I broke while he was in the hospital. But I had planned to drive myself to see him yesterday, Monday September 29th, but my pastors, Cynthia and Tom Brand, sent me a text that morning and said they wanted to take me to lunch and then take me to go see Larry. I had a plan but God knew it was not the right plan. I am so thankful they were there with me.

After visiting with the hospice nurse I had to make the decision I wasn’t prepared for yet – am I ready to discontinue his other drugs, which he had not been able to take except in liquid form, and have them only administer comfort drugs to keep him comfortable. It was one of the hardest things I’ve ever had to do, but I know it is for his best to let him go. He never opened his eyes or seemed to know that we were there. But I was able to talk to him, touch him, and tell him I loved him. Bro Tom knelt with me on the floor by his bed and prayed, for Larry to be comforted and not suffer any pain.

I talked to our kids last night after I got home, and even though their lives are full and busy, they are coming this weekend to see their dad one more time. I don’t know how long it will be that he is still on Earth, but I will take comfort in knowing that where he will be in the end is far better than anything here. And I can look forward to see him one day over there.

          “We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord.” 2 Corinthians 5:8

Peace and blessings in our Lord Jesus Christ,

Dee