I was reading an article the other day about the computers in satellites and jets that keep the craft on course. As the craft flies along the computer makes hundreds of mid-course corrections so that a jet headed for Ireland doesn’t wind up in Spain, or a satellite heading for Jupiter doesn’t just wander through the universe going nowhere in particular. The article spoke about how this is a job the navigator used to do, using more primitive instruments. I do much the same thing when driving to a place I am not familiar with. I use google maps which uses a GPS to find the quickest and best way to my destination. I used to have either paper maps or someone’s advice written down, “Okay, take M-52 south till you come to US 223. Then…” One thing I like about Google Maps is that I never get lost and have to listen to Harriet say, “Will you JUST pull into that gas station and ask for directions? Would that kill you?”
Another place where we seem to need mid-course corrections is on this journey through dementia. You may recall that in the post, The Journey I said, “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.” From the events of the past few weeks we can say that no supernatural healing is manifesting itself. Indeed, it seems that the Lord has blessed us with a time of remission, where the symptoms stopped progressing. Sadly, in the past couple of weeks Harriet has, increased confusion, she stutters on large words, and an increasing inability to use her smart phone. As this progresses we will need to make a few mid-course corrections in order to live with the new reality.
Mid-course corrections are usually small incremental adjustments in the course a craft is flying on. A few years ago, a jet was flying to Minneapolis and flew past it. They were a few hundred miles east of the city when the pilot woke up from his nap. Making a U turn is not considered a midcourse correction but a failure to pay attention. As Harriet’s care giver I must pay attention to small changes in the way she does things. The reason for this is so we can make any adjustments in medications, or make some lifestyle change, or make an appointment with the Neurologist. You don’t want to let things get out of control before making necessary changes.
Before I go on let me say, please do not pick up any false guilt. This journey is difficult enough without the unnecessary burden of guilt for something that was beyond your control. You can do everything right and have everything wind up badly. Much of what happens in life is way beyond our control. I counseled a woman once whose husband had died of dementia. She was absolutely convinced that if she had done things differently, he would not have died. Can you imagine waking up every morning, the bed beside you is empty, and you think, “I killed my husband.” Of course, she had not killed her husband, she was suffering from grief, with a side of false guilt. The Scriptures say that, “There is a time to be born and a time to die.” Every person on the planet is taking a journey that ends in death. For me, that is not a morbid thought, it’s just the truth.
[Disclaimer: What I’m about to say has no medical value whatsoever. If you’ve been reading the blog for a while, you already know that I was a Lutheran pastor not a medical doctor. Therefore, if you have medical concerns you should see your doctor.]
If you notice an increase in confusion, muscle weakness, or increased lethargy, ask, “have we overlooked something?” People who don’t have any dementia at all can go into a time of mental fog, or confusion, because of something that they did or failed to do. For example, every year hundreds of people are injured or killed because someone has been driving with an inadequate amount of sleep. Anyone who attended college knows the brain fog that comes from pulling an all-nighter. A lack of sleep has a truly negative effect on someone with a healthy brain. Sleep is vitally important for people with dementia, because a lack of sleep will magnify the effects of FTD on the brain. Harriet underwent a sleep study and does indeed have sleep apnea. She purchased a C-Pap machine to help get the good sleep that she needs. Harriet’s sleep schedule is not good, she will often be awake until 2 or 3 in the morning. We do our best to make sure she sleeps seven hours a night, no matter what time of night it starts. Her sleep problems means that we must make some corrections in scheduling. We used to go to church at 10:00 am on Sunday. We now go to the Saturday evening service since we do not know what condition Harriet will be in on Sunday morning.
Another simple thing that can have real negative effects on behavior is hydration. One day my mom passed out and was rushed to the hospital. After a series of test the diagnosis was given, she was dehydrated. The doctors told her how dangerous dehydration was and said, “Make sure you drink 7 or 8 glasses of water a day.” She took their advice to heart and drank 6, 7, or 8 glasses of water every day. A couple of months after the first episode she passed out again and was once again, rushed to the hospital. The diagnosis came back that she was over-hydrated. She had drank so much water that she had flushed essential minerals and nutrients out of her body. No one had taken into consideration that she was only 5’4’ and never weighed more than 110 pounds. All she needed was a small correction, in her fluid intake to make a big difference in how she felt. Some of the problems, your Loved One faces may be made worse by dehydration.
Some mid-course corrections will be met with a less than enthusiastic reception. Too much alcohol is not good for anyone but this is especially true for people with dementia. Harriet loves a glass or two of wine with dinner, and at times she will drink a bit too much. However, it has not become a problem and I’m not sure what I would do if it had. I would probably talk to her first about my observations. I know that this wouldn’t do anything for some of you, except start more trouble than you care to deal with. You may need to talk to your love one’s doctor or find some other way to help your loved one cut back.
Any thing that will help the body, get healthy, will help the brain. For as long as possible encourage your loved one to exercise, Take them for a walk in a park. Go to the YMCA with them. Encourage them by word and example to invest in daily exercise. Did you catch the article, on the news, about dementia and deep breathing? It seems studies have found, that too many people with dementia have problems because they don’t get enough oxygen, shallow breathing is compromising their health. A simple Midcourse correction is to say, “Honey, take a deep breath.” Exercise also helps with breathing.
Finally, keep an eye on medications and learn what they are for and what the negative side effects might be. I have seen people who were over or under medicated whose behavior became completely abnormal for them. A small change in medication can make a big difference in behavior. So far Harriet has been able to manage her own medication. I am sure that the time will come when I will have to assume full control over them.
Some of the things I’ve read, in other places, sounds like your loved ones behave like they have Bipolar disorder. Of course they don’t, so medication for Bipolar disorder would probably only make things worse. Jesus tells his followers that they should be, “wise as a serpent, but gentle as a dove.” I would unpack that by advising you to be as nice as possible, as respectful as you can, and as loving as you are able. That’s how you will be as gentle as a dove. But if your loved one is abusive, uncooperative, and arrogant, you must be wise as a serpent. Have you ever watched a serpent move across a field? They don’t announce, “HEY! I’m gonna crawl across this field!” No, they just go quietly about their business. Some mid-course corrections may have to be between you and your doctor, lawyer, or anyone else who can help you do what needs to be done.
In Part two I’m going to speak about some mid-course corrections that you may need to make for yourself. Remember, this is a marathon and you’re in it for the long haul. Sometimes, things need to change for you to keep on keeping on.