If you have followed this Blog then you know that I try to post an article every Friday. I do this in the hopes that what Harriet and I are going through will bless some of you going through the same thing. Lately I have read quite a few articles about the untimely death of Caregivers. Studies seem to indicate that Caregiving is bad for your health. Some articles say that 30% of Caregivers will die before the one that they are living to care for. An article I read last Thursday claimed that the number was 70%. I was shocked by the 30%, yet, the more articles I read the higher the percentage goes. This is completely unacceptable!! Because of this I have decided to post an article every Wednesday about Caregiver Survival.
Every day I read comments from Caregivers posted on different closed Facebook groups. If you belong to one of these groups, you know, that you are forbidden to quote, what is shared, outside the group. I would never, for the sake of a good story, quote something that is shared. People need to know that they can share their worst feelings without it coming back to hurt them. However, common ideas, themes, and feeling may be shared. I doubt that there is not a day that you won’t find someone in deep depression and even despair. People say things like, “I wish he were gone, yet that thought makes me feel so guilty…I feel trapped with no way out…I have lost all hope…I have no future…I wish for death every day, my life is a living hell… I don’t know why God doesn’t just take me home…death seems to be my only way out.” Can you hear the despair in those comments? People can live without a lot of things but a life without hope is a miserable life indeed. When hope for a good future goes out the window, death come in the door. Victor Frankl wrote, “The prisoner who had lost faith in the future-his future-was doomed. With the loss of belief in the future, he also lost his spiritual hold; he let himself decline and became subject to mental and physical decline.”*
Throughout human history everyone has understood that, suffering is a part of the human condition. As much as we do not want to suffer, for some, there seems to be no other option. Think of the many things that people are willing to suffer and die for: religious beliefs, political ends, dreams and hopes, people they love, a longer life. Think of the endless list of tragedies, maladies, and catastrophes people do all they can to avoid. People have always attempted to find meaning in suffering. Nietzsche said, “That what doesn’t kill me makes me stronger.” Christians often quote Romans 8:28, “God will cause all things to work together for the eternal good of those who love him.” Different faith groups have different ideas about suffering which are all meant to give purpose and meaning to what we go through. This is vitally important for as Nietzsche truthfully says, “He who has a why to live for can bear with almost any how,” Victor Frankl writes, “If there is a meaning in life at all, then there must be a meaning in suffering, Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete”
I’ve read a number of books on suffering, (not that I have suffered much, but pastors get called to comfort people caught up in trouble, and I wanted to be ready). One book that I love, and go back to again and again, is Victor Frankl’s, Man’s Search for Meaning. I love this book because it comes out of his experiences with suffering as a Jew at the hands of the Nazis during WW II. He survived, Theresienstadt, (a Ghetto in occupied Czechoslovakia set up by the SS that Victor, and his family were sent to in September of 1942), and as a prisoner in Auschwitz, Kaufering, and Turkhiem from October 1944 – April 1945. You might wonder how what has happened to the Jews suffering under Nazi domination could help Caregivers who are safely in their own homes with the one they love?
In the 1930s the European Jewish community felt quite secure. Their futures looked good and they were very comfortable. When the German Lutheran pastor, Dietrich Bonhoeffer visited the United States, he thought that whereas Germany had a Jewish problem, they were much better treated than the blacks in the United States. European Jews had their lives planned out, but someone else had a different plan. It was a plan for fear not joy, uncertainty not security, poverty not wealth, sickness not health and death, not life. In the same way, most Caregivers had a plan in their minds of retirement, travel, romance, joy and happiness. Suddenly both groups find their hopes, dreams, plans, and goals torn asunder. They stand in the ruins, shell shocked because, no one saw this coming, it wasn’t on the radar. In the same way before your husband was diagnosed you probably never thought that years of your life would be taken up caring for him.
Secondly, no Jewish person ever volunteered to be a prisoner at a Concentration Camp. They were happily living at home with their spouse, children, and pets. Suddenly, everything they own is confiscated, they are arrested, separated from loved ones and sent to work at a job they were never trained for. The great majority of Caregivers never volunteered to take on this task, it was thrust upon them. Indeed, you read of people who have retired early, given up their dreams, and hopes, to do a job that they were never trained for. Like Mike, a former New York City Cop, whose story was featured on 60 Minutes, gave up his job to care for his wife because of love and obligation. There was no one else available for the job. For many the expenses of caring for their loved one is way beyond their means. Many with dementia no longer know the one who has given so much to care for them. Sadly, some caregivers are treated with contempt by the one with dementia and even the extended family.
Finally, and probably one of the worst things, you don’t know how much longer you will be in this impossible situation. Victor Frankel writes, “Former prisoners, when writing or relating their experiences, agree that the most depressing influence of all was that a prisoner could not know how long his term of imprisonment would be. He had been given no date for his release…Actually, a prison term was not only uncertain but unlimited.” When this first started you probably had a time line in your mind. You didn’t mind serving for three, four, or five years, because of your love for your wife. However, ten years have come and gone and there is still no end in sight. You are way past where you thought this would end and the woman you care for is no longer the one you fell in love with. You’re trapped, caring for a stranger who doesn’t even know your name. The question is, what do you do when all hope is gone, you’re at the end of your rope, and every day you beg God for death?
First, STOP, take a deep breath and assess where you are and what you’ve come through already. While it’s true that you don’t know how much longer your wife will live, you also don’t know if the worst of this is behind you. Frankel writes, “The words of Bismarck could be applied, “Life is like being at the dentist. You always think the worst is still to come, and yet it is over already.” Would it give you hope if you knew that your husband would only live six more months? What about nine months or a year? Truthfully, one of the worst things people do is try to see what is ahead. Nothing sucks the hope out of a human heart faster than projecting way into the future the horrible situation they find themselves in right now. This is why, Jesus Christ taught his followers not to worry or be anxious about tomorrow. Today is tough enough without piling on all of the horrible possibilities that MIGHT happen.
Jesus promises us strength for today, but he won’t empower you to worry about tomorrow. You might say, “I can’t help myself, these negative thoughts just take over my mind.” I’m not saying it is easy to overcome. Frankl says, “Everything can be taken from a man but one thing: the last of the human freedoms- to choose one’s attitude in any set of circumstances, to choose one’s own way.” (italics mine.) I can read those words a lot easier than I can do them. Reading Frankl’s biography, I can see that this isn’t something he did perfectly either. Can it be true that our last freedom is,” to choose one’s attitude in any set of circumstances”? If it is true how can I make it work in my life?
Second, realize that this Dementia isn’t happening because God, or the universe, is out to get you. You’re not being punished because you were stoned all through college, or because you committed adultery with your wife’s best friend, or any other reason you can dream up. It’s happening because you are human, and you fell in love with someone who became ill. Jesus tells us that, “In this life you will have tribulation.” God assures us that he will not abandon us to the promised tribulation. Indeed, Jesus says that God will never “leave us or forsake us.” Once we see that no one is out to destroy us and that God promises to help us, we can face our suffering. Frankl writes, “What was really needed was a fundamental change in our attitude towards life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us…Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.” I would put God where Frankl has the word life. What does God expect from us but to become more and more like Christ and to help those in need. Don’t forget Jesus also accepted help from others when it was needed. This is because love both gives and receives.
If you knew that this would be over in six months to a year what would you do? That is, once the funeral is over, all the friends and family have gone home, what would you do? Would you travel? Take up an old hobby? Contact former friends and lovers to enjoy life with? Is there something you would hate to miss if you died today? Maybe a grandchild’s graduation, or wedding, would be a blessing to you. To hold your new grand or great grandchild might be something to live for. It is absolutely necessary for you to look past this terrible time and see something worth living for. The thing that makes you choose life might be something really important to you. Frankl tells of two men who were suicidal, the first one decided to live because he had a daughter in a foreign country. Her mom was dead, and he wanted to live to raise her. He decided that no matter what it took he would be there for her once the war was over. The second man was a scientist who was in the middle of important work when he was arrested and put in the concentration camp. He decided to live to finish the work that only he could do.
The thing that makes you choose life might be something frivolous. There was a time in my life during which I wished to die. I wasn’t suicidal because I didn’t think that was an option for a pastor. My youngest son had been sentenced to prison for ten years. I thought that this meant that he would spend the rest of his life in misery. My mind projected a horrible future for him, one of frustration, failure and poverty. I feared that he might wind up in prison again and again. That caused me to feel like a failure as a father.** We were in a new church and I was getting beat up for somethings that needed to be done and I had no idea what to do next, that made me feel like a failure as a pastor. Because of all the negativity my marriage was in a bad place, which made me feel like a failure as a husband. I was clinically depressed and needed medication. I would pray and beg God to take me home. Then, one morning, there was a news article about a film that was being made in New Zealand. The Lord of the Rings trilogy was underway and would be released that December. I love good literature and had read The Lord of the Rings multiple times. When I saw the pictures of the movie and read about the release date, I decided I wanted to be around for all three releases. I made a three-year commitment to life over something as foolish as a movie!! What do you want to live for?
Frankl writes, “Any attempt to restore a man’s inner strength in the camp had first to succeed in showing him some future goal. Nietzsche’s words, “He who has a why to live for can bear with almost any how,” [italics mine] could be the guiding motto for all psychotherapeutic and psychohygienic efforts regarding prisoners. Whenever there was an opportunity for it, one had to give them a why-an aim- for their lives, in order to strengthen then to bear the terrible how of their existence. Woe to him who saw no more sense in his life, no aim, no purpose, and therefore no point in carrying on. He was soon lost. The typical reply with which such a man rejected all encouraging arguments was, “I have nothing to expect from my life anymore.”
Maybe you’re one of the Caregivers for whom death cannot come fast enough. You don’t have the energy to even think of something to live for. God knows where you are: cry out to him. Say, “Lord, give me something to live for or take me home today.” Keep your eyes open. It might be something as wonderful as a new grandbaby or something as trivial as a new movie. I don’t know what it is and neither do you. If you knew what it was you would have it on your heart right now. This dementia does not have to be the end of you. Better days are coming! I will be praying for you that you will find that special something that makes life worth living.
*All quotes are from, Man’s search for meaning, by Victor E. Frankl. (My hard copy is in a box somewhere. I am quoting from the Amazon Kindle copy.)
**Michigan has truth in sentencing laws, which means a prisoner must serve the minimum sentence. Our son was in prison his whole term. He was released from prison and immediately enrolled in college. He has earned, a Bachelor’s degree, a Masters degrees, is a successful substance abuse counselor, and has married a wonderful young woman. I have learned to never, Never, NEVER believe the lies, and visions that come out of depression and despair.
I am mad as Hell!! Dementia wants a two for one deal. It wants to kill both my wife and myself. It also wants to take both the one you care for and you down. We must stand together against this great evil!! I have a picture, in my mind, of a group of us standing together in defiance against this disease. I want say to FTD, ” I know you want to destroy both Harriet and me. Your plan is to see us both dead. I don’t know what lies ahead. I might be bankrupt, out on the street, with no place to call home. But when you have done your worst, and this terrible time comes to an end, I will still be standing. I will be standing because I am not alone.