From Dave & Harriet

Harriet:

I have an update on the lost hearing aid, I spoke of last week. My sweet Grandchildren had nothing to do with the missing hearing aid. Dave asked me what the name of a book he had been reading. I went to get the book off the shelf behind my bedroom door and there was the hearing aid. I can only surmise that I was getting a book off the shelf and heard, “Battery,” which means the battery is going dead. I must have taken it out and put it on the shelf. What a relief!! Mystery solved.

What I’m going to with share you isn’t an easy topic for me, but I have a feeling that I’m not alone with this problem. I don’t sleep well. It is so hard to get to sleep, I’ve been that way most of my life, but it is so much worse. Sometimes it is 3 or 4 AM when I finally get to sleep. I get up late, as you might imagine with the hour of when I was finally going asleep. I drag around awhile, get something to eat. I might take a shower, or not. If so, I might get dressed or put a gown or sweats on. (This not showering can last for a day or two or three). I’ll be lethargic, try to figure out what I should be doing that day. I’ll be sad or just blah, not understanding what’s going on. This can go on for days. I can’t believe I’m sharing this with you!!! It is so embarrassing!

Dave is so patient and caring with me; I don’t know how he does it! I pray for us both. I asked, just today, the how and why, Dave had not talked to me about my lack of personal hygiene. He said, that people with FTD just seem to get this way and if I got really bad he would bring it up. Clearly, I felt the need to do something different to change the way I’m living. I prayed for God’s direction. I ask Him to please help me take the steps I need, to re-center my life in Him. I am going to go to bed earlier, so that I’m asleep by midnight and get up by 8:00 AM. This is very painful for me to write about, but I’m hoping by sharing, I will feel accountable and really start to make some positive changes. Please pray that I will be able to do this. This seems to be a common problem for those with dementia. I’m going to be searching for help for this problem and, I will also tell you, if I have success with my ideas for changing my sleep schedule, or not.

Blessings, love, peace and joy. Harriet

David:

This has been a strange week, emotionally speaking. Mostly I seem to be either cursing, swearing, blaspheming, or crying with occasional periods of giddiness. Does that sound like a weather report to you?

This is a Channel Eleven First alert forecast.  You can see on the radar this line of very angry clouds producing lots of very bright cursing, see the picture, one after the other, like lightening, from the clouds to the ground. Of course, you can bet we’re hearing rumbles of swearing that are so loud all the dogs are running for cover. Look here, the red wrapping around the green, and, Yes, the National weather Service has just sent out a Blasphemy warning. We can only hope this doesn’t touch down anywhere. This could cause some real damage. Once this front blows through it will be a night of heavy rain, a real soaker. This should be out of the area by morning which will be a bright, sunny, beautiful morning. The kind that makes you, well, just giddy.

Harriet remarked that I am so patient with her. You can tell from what I wrote above that I am not patient with everything in life. Since her diagnosis of Frontotemporal Dementia, I’ve come to see, through learning about FTD, that most of what used to make me angry was the disease. not Harriet. That is, if she behaves in a certain way that hurts and angers me, it’s because she’s sick and I shouldn’t take it personally. I had to learn to let it go and pick my battles. I’ve prayed and asked God to give me the grace I need day by day so that I will not get angry about every little thing. The patience must be the gift of God since, right now, I don’t have patience for anything else.

I think the childish cursing and swearing comes from grief. My mom died in April 2017, my brother-in-law Terry died in December of the same year. Since then I have watched Harriet change as Frontotemporal dementia destroys more of her brain. FTD is death in a crock pot, very slowly cooking her life away. Thus far, she has had two major personality changes and is not the woman I lived with for the past, fifty years.

Because of the positive effect reading, watching You Tube, and listening to others, has had in my life, I always share when I’ve found something that is especially good. I am reading a book by, Martha L. Garmon, entitled, I Am Not Alone, Conversations with Care Partners of People with Dementia. Each chapter is different person answering questions about what they’ve gone through and where they are today. If you are a caregiver, get this book, it will be a huge help to see how others have coped with this terrible disease. I bought a Kindle version but now I’m going to have to order a bunch of hard copies to pass on to family and friends.

One thing I am grateful for is that Harriet is still in stage one. The average person with FTD will live for 8-10 years after diagnosis. We know Harriet has had this at least eight years already. The first time we realized something was wrong was in 2010 when Harriet was making dinner for the church council. She has made dinners for huge crowds of people before and really enjoyed it. Everything would be ready and in place at least two hours before the first guest arrived. On that night, 30 minutes before dinner was supposed to start, the potatoes weren’t peeled, the hot cider hadn’t even begun to get hot, and Harriet still needed to take a shower and get dressed. As you can imagine, she was not having fun getting that dinner together. That was a wake-up call, something was wrong.

 That was eight years ago, and she is still in stage one. Rule of thumb is usually someone will be in stage one for 50% of their illness, stage two and three will both take 25% each. Of course, with FTD there area no fast and hard rules. Unlike Alzheimer’s where you can look at a chart and say, “Bill is now in late stage 4 and early stage 5.” FTD seems to be different from person to person. Also, it seems like many people with dementia will die from complications or something else. Therefore, it is vital to take one day at a time and try not to see what the future holds.

I have a dear friend, in Owosso, Michigan, whose husband died with Frontotemporal Dementia in 2011. Jim King was a well-known and much-loved professor, therapist, and pastor in Owosso, Michigan. He was known as a very patient, loving, kind and compassionate man who was never mean towards, or angry with people.  Sometime around 2001 he began to have trouble forgetting words or saying the wrong words. He also began to get very agitated with people. For example, one evening, around 6 o’clock, a few good friends dropped over. It was okay because they had that kind of relationship. About forty-five minutes later Jim stood up and said, “It’s late, I’m really tired, I guess I’ll go to bed.” Everyone was a little surprised but figured he was getting older and maybe he was just worn out from the day. Jim went off to bed. About an hour later he came out of the bedroom, in his pajamas, and asked, “What are you still doing here? It’s late, please leave now.”  This was something he had never done before and the next day he felt bad and wrote everyone a letter of apology. Sadly, this type of thing continued to happen. At first, he would apologize, but after a while he didn’t see the need for an apology as if he didn’t know he was being rude. Unfortunately, he was misdiagnosed with Alzheimer’s and put on Aricept. This caused double vision and he was taken off the medication. For some reason, about a month later the doctor put him back on Aricept and the double vision returned. This time when they took him back off Aricept, the double vision remained, the damage was permanent. However, he got glasses with a prism on the lenses which took care of the problem. His wife thinks that stage one lasted from 2000-2006.

 Jim was in Stage two from 2007-2009. He had to retire from the ministry because he was having a difficult time writing and delivering sermons. He got to where his speech and writings were often gibberish. Later Janet had to hide the matches and lighters because he was, lighting fires, with leaves, branches and, tools, such as pliers, screwdrivers, wrenches, etc. He told Janet that he couldn’t sing anymore, something he always loved to do.  He voluntarily stopped driving when he realized that he couldn’t judge distance and parked so close to a car that a person couldn’t walk between them.

Late Stage two and Stage three was from 2009-his death in 2011. During this period, he developed Sundowners and seemed agitated much of the time. He wanted to stay at home and when he did go somewhere, he didn’t want to go home. When his Respite visitor, Brian, would come he would beg Janet not to leave. When speaking to Brian about Janet he would say, “Don’t you think he should stay with us?” He had times where he wouldn’t recognize Janet and asked, “Where do you live?” Then in 2010 he had emergency surgery for a twisted hiatal hernia.  Following the surgery, he was very agitated and paranoid and wouldn’t follow instructions. He was admitted to rehab center for 3 months. His return home was very short because he became angry about roofers telling Janet that they were doing his job. The visiting nurse urged Janet to take him back to hospital. Things went downhill very quickly after this.  He refused to eat and would spit his pills out. A feeding tube was inserted, and he gained strength. When the tube was removed, he once again, refused to eat. Later the doctors said this was because of internal bleeding. He didn’t feel hungry because his stomach was full of blood.  He slipped into a comma, and died on February 16,2011

His death was quite a shock to those who loved him. Before the surgery he seemed confused but strong and full of life. No one thought he would go down hill so fast. His wife figures he was in stage three for a year to eighteen months. The rule of thumb would say if state one was six years long, that stage two and three should be three years each. For Jim stage two was about two years and stage three was about fourteen months.

It seems to me that with dementia nothing is definite except for the brain damage and lessening abilities. To be honest, none of us knows if we will be alive tomorrow. This is also true for our Loved Ones with Dementia. If you find your thoughts focused on next week, next month, or next year, ask the Lord to help you stay centered on today. You will be truly blessed if you can train yourself to do this.

God bless you! Hang in there and let’s get through this together.