The Journey

If you’re like me, you like to plan ahead for a journey. I like to read about the various places we plan to visit, and buy the most current atlas. Having bought the atlas, I will look at the map of each state and city we will be passing through, even though I will be using GPS for travel. In the past Harriet would plan every trip we went on. Once we took a five-week camping trip from Miami Florida, to the Grand Canyon, up to Yellowstone, over to Michigan and back home to Miami. Harriet had this trip so well planned that there was only one day with nothing planned. Thanks to Harriet’s ability to research, organize and plan, we saw some amazing things. (I planned our trip out west, last fall, which means we were not quite as well organized.)

 Having Dementia is a different kind of journey. When we thought Harriet had Alzheimer’s it was an easier journey to map than Frontotemporal Dementia. Many articles speak of the different stages of Alzheimer’s and the things to look for at each stage. Therefore, Caregivers are looking for the signs of where the loved one is on their journey through Alzheimer’s. Frontotemporal Dementia is not so well marked out. While there are markers for beginning, middle, and end of the disease, people can be all over the place with different signs. FTD seems to be somewhat different for each person, so much so that often one will be tempted to think that there has been a misdiagnosis and dementia is not the problem at all.

From the beginning of this journey, a number of people in my family have been very dismissive of our concerns about Harriet’s diagnosis. If Harriet speaks about her frustration with losing words or saying the wrong words, they will say something like, “Don’t worry about that, it’s just a part of getting older. If I had a Nickle for every time I forgot a word….”    When she struggles to remember something they will say, “You’ve got a better memory than I do.” We realize that this is their attempt to be supportive but it comes across as belittling.

One change in personality, that is common to everyone with FTD, is that they become apathetic and indifferent about things and relationships. In the last few postings I spoke about how this was true for Harriet for the first four or five years, but something has changed in the past six months. She has become very compassionate, loving and empathetic. Another improvement is in speaking, she seldom uses the wrong words or struggles to come up with the right word. I cannot remember the last time she stopped in the middle of a sentence and asked, “What were we talking about?” I don’t know if these improvements are permanent or temporary.

Some of our family members see this as answered prayer; the beginning of the healing that they have been asking the Lord for. I certainly believe in miraculous healings because I know that, with the Lord, nothing is impossible.  If the Lord is healing her it really is only the beginning since she still cannot remember how to use her laptop and her cell phone causes her much confusion. Harriet has always been very good using computers, having worked with them since she was in her early thirties. If the Lord continues to heal her we will praise Him for his wonderful compassion.

Other family members see this as proof that she never has had dementia but has been misdiagnosed. Our Primary Care Physician was the first to diagnose her with Alzheimer’s, and he referred her to a Neurologist. Between the two doctors she had blood tests, sleep apnea test, thyroid test, alcohol and drug testing, if there was something that could cause dementia like symptoms Harriet was tested for it. Other than mild sleep apnea, for which she now is the proud owner of a c-pap machine, all the tests came back negative, reinforcing their original diagnosis. However, some in the family refused to believe the diagnosis and would argue with us about how this was a misdiagnosis because we had gone to local doctors instead of going to the University of Michigan Hospital.

Mayo Clinic has classes for people with Mild Cognitive Impairment, which is what many people struggle with before it develops into dementia. Mayo Clinic has had real success with people who suffer from MCI, keeping it from continuing on into dementia. After her diagnosis I tried to get Harriet into one of these classes. I sent the test results from the Neurologist and the MRI that she had in Ann Arbor. After reviewing her case they said that she was too far along, with Alzheimer’s, for their classes to be any benefit to her. However, they advised us that if she had an in-depth evaluation with a Neurological Psychiatrist they would reconsider. Therefore, in September of 2018, she was evaluated by a Neurological Psychiatrist at St. Joseph Hospital in Chelsea. Two weeks later the test results came back, and the diagnosis was that she was struggling with Frontotemporal Dementia. Mayo Clinic will not enroll Harriet in their classes since she has gone beyond MCI into full blown dementia.

Since we’ve seen real improvement in attitude, memory, and speech, it makes you ask, “What is going on?” The idea of misdiagnosis is absurd because 3 doctors and Mayo Clinic all agreed that she has dementia. The idea of a miraculous healing is possible. I’ve seen enough miracles to know that they do indeed happen. But I also did funerals for people that many, prayer chains, prayer warriors, and loved ones, were begging God to heal. Can God heal her? Of course, God can do anything he wishes to do. Look in the New Testament where Jesus, and the early church, had countless miracles, healings, even raising the dead. When we pray the Lord might say yes.

So, what do I really think is going on? I see three possibilities; Divine healing, a temporary remission, or Harriet is learning new skills.

Do you recall the story of C. S. Lewis and his wife Joy Davidman? Lewis was 58 when he married Joy. Sadly, shortly after their marriage Joy was diagnosed with terminal cancer. Even though there was little hope, for those suffering with cancer in 1956, Joy underwent cancer treatments and surgery. Naturally many people prayed that she would be healed of this disease. Joy came out of the hospital and shortly after her cancer went into remission. They had a joyous year together, going on a honeymoon, setting up house keeping, and traveling to Greece. Tragically, the cancer returned with a vengeance. This time it did not respond to  radiation or anything else the doctors could think of. Joy died on July 13, 1960. God in his mercy, gave the them a wonderful, joy-filled year together. A year in which they could travel together, play together, and live together. Joy had always wanted to go to Greece and her desire was fulfilled during the year that she was in remission. I wonder if the Lord is blessing Harriet and myself with a time where the symptoms of dementia seem to go away. We too have used this time to take trips that are on Harriet’s bucket list; we’ve taken a hot air balloon ride, drove from San Francisco up the Pacific coast to British Columbia, and later this year we will visit Vermont, which is the only state Harriet has never been in.

I’ve been in contact with some of the good folks at the Association for Frontotemporal Degeneration. They said that there are times when some people symptoms improve as either another part of the brain takes over some of the functions, or new skills are learned which make carrying on a conversation easier. For example, the other day Harriet was speaking with our daughter Michelle and was commenting on something that Michelle’s husband Mike had done. She said, “I saw on Facebook where your husband threw the bucket of hot water and it immediately turned into snow.” In the past Harriet would have never said “Your husband,” she would have just said his name. Harriet has always been very intelligent, and intelligent people will learn how to get around difficulties. In the same way that Mike became, “your husband”, other items have become those things, that stuff, etc. It’s not that she has stopped forgetting words, rather, if she forgets a word, she quickly substitutes a generic word for it.

At this point I do not know if the Lord is healing Harriet of Dementia, is giving us a time of remission, or Harriet is just learning new ways to get around her difficulties with speech. Therefore, the only thing to do is to take it one day at a time. The Lord has blessed us with today, we are not promised tomorrow. When a day is good, we will enjoy the blessings and thank the Lord. When a day is difficult we will go through it in the strength of the Lord. St. Paul reminds us that God’s will for us is that we, “Pray without ceasing, rejoice always, and give thanks in all circumstances. Please continue to pray for us as we walk on a journey, not knowing where we are going.

2 thoughts on “The Journey

  1. Prayers continue for you both. May God always be with you wherever your journey takes you.
    A phrase Gail and I heard this morning may apply.
    God is writing your journey for you; don’t try to steal the pen.
    Your love for each other and I’ll get you through this.


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