Miracles
Miracles come from places you never wanted to go. Faith grows in the debris of dreams. Strength comes from being broken in every way. I know these things because I have been a caregiver.
I never wanted to be a caregiver, but when Jeff, my husband of 27 years, began to show signs of dementia at the ripe old age of 50, I became one without ever applying for the job. The first thing I learned in my on-the-job training was that you can’t reason with a person with dementia. Jeff refused to acknowledge that he had a problem or needed any help. He couldn’t understand why I was trying to get him to go to the doctor when there was nothing wrong with him. Everything I tried to do for him made him defensive and angry. Everything I needed to do for him was difficult, confusing and foreign. Doctor’s visits, MRI’s, insurance, social security, every day was a new struggle. Each new problem was something I had never dealt with before and didn’t know what to do about. Yet the person I would normally have turned to for help was no longer able to give it. Jeff became paranoid and vindicative. I became overwhelmed and depressed. Things were definitely not good.
But we were not alone. My daily prayer became “God help me, I don’t know what to do. Please, show me the right thing to do. I just want to do the right thing.” Many nights I cried myself to sleep saying those words over and over. Did God answer my prayer? Not verbally, but in so many other ways, yes. He gave me the strength to keep going each day. Desperately exhausted and completely baffled, I was still able to get Jeff diagnosed and prescribed with medication to slow the progression of the disease. Receiving a diagnosis was actually a great relief. At least we knew what we were dealing with, even if it was a progressive, ultimately terminal disease. We found that Jeff had vascular dementia, primarily in the frontal lobe of his brain. This meant that he had experienced a series of mini strokes that had slowly destroyed the reasoning part of his brain, and would continue to do so. While his physical health was fine, he could no longer remember or understand what was being said to him, or why things were the way they were. Though we, and various doctors, tried to explain to him that he was sick and would get progressively worse, he remained convinced that there was nothing wrong with him, and that we were all being mean to him.
Many people tried to encourage me by saying they understood, that their mother or father or grandmother had had dementia. While this was true, and I knew that these people meant well, none of them had actually lived in the house with the person with dementia, being their sole caregiver, trying to manage everything while continuing to work a full-time job. I found that all the literature and online resources available were geared toward elderly people who were retired, already on Social Security and Medicare, and able to be at home all day to care for the patient. Nothing addressed early onset dementia and all the resulting problems of losing the income of the primary breadwinner, wrestling with Social Security, Medicare, pension funds, lawyers, and a college age daughter newly diagnosed with several autoimmune diseases and unable to fully support herself. Remember that I had never wanted to be a caregiver? Yes, I had now become a caregiver for two people. God has an interesting sense of humor.
I felt that I was losing everything. I had lost my marriage; I was now a nurse/mother rather than a wife. I had lost my financial security; Jeff became convinced that whatever income was available to him was “his”, while I desperately tried to keep the household together on my salary alone. I even began to fear that I was losing my sanity. But the one thing I was determined would never be taken away from me was my faith. The harder things became, the more I clung to my God. I went to church, even when Jeff refused to go with me. I read my Bible more than ever before. I prayed constantly. I hummed Christian songs in my head all day long for comfort. Our Sunday school class rallied around me. They prayed for us continually. They checked in on us regularly. And when, I told one of them how desperately we were struggling financially, they presented me with a sizable monetary gift. My love for my church and my faith in my God became stronger as I worked through all the trials one by one. I would never have matured in my faith the way I have, if Jeff had never gotten sick. The Lord does work even the hardest trials for good.
Then came the day that we knew Jeff could no longer stay at home alone while my daughter and I worked. He was a danger to himself and to others. My daughters and I took a day off and went in search of a nursing home. This was something else that I knew nothing about, so we just walked in and started visiting with the administrator of some local homes. We were immensely blessed to find one that was nice, close to home, and had a room available immediately. The hard part was going to be getting Jeff to go. As we had known he would, Jeff adamantly refused to even consider that he needed to be where he could be better taken care of. We tried to remind him that he had made the same decision for his mother some years earlier, and that she had a nice little apartment where she could have all her things with her. Of course, he couldn’t remember that. We tried telling him there would be other people there and things to do rather than sitting at home by himself, bored every day. That didn’t work. We tried explaining to him that it simply wasn’t safe for him to be at home alone all day any more, to no avail. Finally, he was shouting, I was crying, and we had used every argument we could think of. I became so utterly frustrated that I slammed my hand down on the counter and shouted, “God, help me NOW!” … a few seconds of silence, and the next words out of Jeff’s mouth were, “I guess it wouldn’t hurt to go and take a look at it.” If that wasn’t a miracle, I don’t know what is. Well, maybe the fact that he actually liked the place when we got there, and agreed to go. The saddest thing I ever saw was him looking out the door at us driving away, with a look that clearly said he didn’t understand why we were abandoning him, even though two days earlier he had agreed to go. I cried all the way home.
So, here we are 5 ½ years later. We went to visit him the next day, and every few days after that. We finally settled into a routine of visiting once a week, would sometimes take him out for ice cream or to his favorite store. When it became clear that Jeff needed a home with a dedicated memory wing, we moved him to another home. It was farther away, but we still tried to visit every couple of weeks. This became more and more difficult to do as he no longer knew who we were and had virtually no verbal skills, so visiting was impossible. I would show him pictures of the grandchildren, and he would just look at me and smile. A minute after we left, he had no idea that we had ever been there. Then came the COVID-19 pandemic. I spent our 40th anniversary alone because Jeff had no idea he even had a wife, and we couldn’t visit him. We had not been able to visit Jeff for nearly a year when he got COVID-19 and passed away this past December. It was a beautiful day the day I stood at the cemetery with my friends, and family, and, as always, God by my side as we laid Jeff to rest next to his parents he had so recently gone on to see. He is well and whole now, and safe in the arms of his Lord, and there is no greater miracle than that.
