I’ve noticed that there seems to be a lot of frustration and anger in various support groups about the part that God plays in our situation. Some people don’t believe God has anything to do with our Loved One’s Dementia. They would say that these things are a part of our fallen world. They might go on to say that God will help us through this horrible time. Others think that God has chosen their loved one to have dementia and has chosen them to be a caregiver. They say, It’s all a part of God’s mysterious plan. They love to say things like, “Whatever God brings you to, He will bring you through.” (I do believe that saying, I just wonder about its application.) Then there are people who either don’t believe in God or are not religious and don’t receive any comfort from invoking God on their behalf. You can see how something that might make one person feel blessed, would frustrate, or even anger, someone else.
It is important for all of us to give people the benefit of the doubt, that is we should be patient with each other. Sometimes people don’t know what to say, and they say something that was a comfort to them. I think most people have good intentions, even when they say something hurtful or stupid. People really do want to be helpful and give comfort.
On the other hand, if you are going to write, or say, words to comfort someone, try to understand where that person is at. They are hurting, vulnerable, and feel pretty beat up. Sometimes the best thing to say is nothing at all, other than,” I’m so sorry.”
Please remember, words that make one person feel loved, may have the opposite effect on someone else. This might mean that you need to unpack some of your religious slogans. For example, if you say, “How fortunate for Harriet that God picked you to be her Caregiver. Aren’t God’s plans mysteriously wonderful?” I might agree that God chose Harriet to be my wife so that our children and grandchildren could be born. Being her caregiver is a part of that package deal that comes with taking vows that say, for better or worse, richer or poorer, in sickness and in health. The implication that God’s wonderful plan for Harriet is that she come down with FTD and slowly unlearn everything it took her 65 years to learn, does not seem wonderful in any way. You could say something like, “Harriet is so fortunate that the Lord brought you two together. Not everyone has the ability to be a caregiver.” Do you see the difference?
I’m not a theologian, but I was a Lutheran Pastor for over thirty years, and I have read a lot on the subject of God and pain. There seems to be a number of different views, about God, fate, and human freedom. One idea is that God causes everything, good, bad and indifferent, on this planet. Another idea is that God allows things to take their course and will strengthen us now and straighten everything out on Judgment day. Finally, some believe that God is an impotent lover, who weeps in heaven over things he can do nothing about, other than sending love and support through other people.
As a Christian I confess that God is love. (I John 4:8) God loves every person on this planet and desires that we love God in return. True love can never be forced, so God created us with complete freedom to choose to love or hate him, to trust or reject him, to choose life or death. The gift of human freedom comes from the creator and makes us like gods, or demons, depending on how we use that freedom. Think about it, you really can do, believe, and act any way you want to. However, there will be consequences for your behavior, both temporal and eternal.
We live on a beautiful, but dangerous, planet. If human evil, or stupidity doesn’t kill you there are always: tornados, floods, earthquakes, animals, sharks, germs, etc. Did you see on the news, how many people are accidentally killing themselves, when they attempt to take a selfie in a really dangerous place? There was a couple who loved to take and post selfies on their blog. They were in Yosemite National Park and planned to take a picture of themselves standing on the edge of a cliff at sundown. Unfortunately, they had been drinking, and instead of capturing this moment, fell 700 feet to their deaths. Would you try to comfort their parents by saying something about God’s wonderful plan must have included them falling to their death. They would probably answer, “If that was God’s plan for their lives you can keep your God because he sounds like a monster.”
I think that God knows everything that will happen to everyone who will ever live, long before it happens. Like most people, I wondered what I would do with the rest of my life after retirement. I felt like the Lord was saying, “Write and take care of Harriet.” I love to write but didn’t really understand what taking care of Harriet meant until we realized that she had dementia. The fact that God knew about this Dementia years before we did has given me a lot of comfort. I don’t think God caused it but knew it was coming and will be with us every step of the way.
I realize that if God said the word, Harriet would be healed. I have faith that the God who created the universe can do whatever He wishes. However, most of the time God will give us strength to go through, not a miracle to pluck us out. I also understand that God promises to, “Work all things together for the good to those who love God.” As a pastor I have visited hundreds of people who were dying horrible deaths. I have conducted funerals for people of every age from stillborn babies, to one lady who was 105 years old. This, “all things together for good,” can only mean some eternal good that I cannot see from this perspective.
I believe God will use everything Harriet and I go through to make us more and more like Jesus. In the Garden of Gethsemane Jesus prayed, “Father, if it is possible let this cup pass from me.” He asked God to provide a way out, but finished his prayer, “Nevertheless, not as I will, but as you will.” The first step, in becoming more Christ like is to surrender everything to the will of the Father. This first step becomes a consistent prayer to the God who loves us and promises to never leave or forsake us.
Therefore, when things are out of control and I am in a rage, I must stop, ask the Lord to forgive and empower me. By myself I cannot be Harriet’s Caregiver. But I can do all things through Christ, who strengthens me. FTD makes me angry, sad, frustrated, and I wish Harriet never had it. But, if I focus on all these negative emotions, I will go insane.
Sometimes I feel like St. Peter when he went water-walking with Jesus. He took his eyes off Jesus and focused on the huge waves, wind, and storm. Immediately he sank beneath the waves. In desperation he cried out, “Lord, Save Me!!” Peter knew he couldn’t walk on water, it’s physically impossible. But when he went under and cried out to the Lord, Jesus came and took him to safety. The same Lord is with Harriet and me as we go through this storm of dementia. Some days I lift my hands and cry out, Lord, save me!” I must tell you that more than once he has come along side and helped me do what I cannot do.
I will continue to pray for all of you. Please pray for me as well. Standing together we will make it through.