I laid awake the morning after Halloween reflecting on how things have changed. Once upon a time, during these caregiver days, I would say “I love you” to Cindy when I woke up and her response would be a contented purr. Eventually her response faded into nothing, no indication that anything was registering, which generally continued through the morning until we ate breakfast. On this morning I was glad she could not register that I was fighting back tears.
The tears this particular morning were brought on by the dream I had combined with the song that lingered in my head from the day before. The Stevie Wonder song was the actual instigator, with the lyrics: “I believe when I fall in love this time it will be forever.” Now that I have a more detached calm while sitting at my computer I can reflect on why those lyrics haunted me.
I have been convinced, and still am, that I will be fine after Cindy passes away. Throughout my whole life I’ve been an optimist, a planner, a problem solver, a positive thinker; that has helped me as a caregiver; that will help me as I move on. I also believe I am not now nor ever was depressed, just occasionally sad. I realize now that at the heart of what makes me occasionally sad is knowing that “this time it will be forever” applies to when I fell in love with Cindy. I will not stop loving Cindy after she passes away, nor should I for the sake of moving on. I doubt this will bring me down, but I’ll have my moments, just as I do now.
The news is not all sad. In my last post I mentioned I was starting a new treatment for Cindy, due to the high correlation of spirochetes with amyloid plaques. There are a variety of reasons why this probably will not work; but there also are reasons why it is worth of try, including perhaps ruling this out as a treatment if/when failure proves to be the case. So far there have been mixed results.
As a trained scientist (though I now prefer the term empiricist for geeky reasons I won’t get into), I’ve been keen on observing the changes since the start of the treatment. The challenge for a slowly degrading disease like dementia is that recovery would be just as incremental. I focused on two indicators at this stage of deterioration for which I might detect incremental changes.
The bad news is the physical decline continues. The effort it takes for me to walk her from one room to another increases daily. We take hugging breaks every few feet for Cindy to catch her breath and feel more stable. Based on this alone I would say the treatment is not working.
Yet there is some good news in the other indicator I’ve been observing, alertness. Soon after taking the antibiotics Cindy started mumbling often. That could be an indicator of further decline, except she also started laughing harder. Granted, the cause for laughter often seemed to be just inside her head, but I’ll not dismiss laughter no matter what the cause.
On Halloween there was a distinct cause for Cindy’s laughter, my Goofy hat. Our tradition was for me to greet trick or treaters at our door wearing the hat. Our situation prevents us from being Halloween hosts and we keep the lights off, but the Goofy hat remains available.
The silver lining to Cindy’s affliction is that nothing good gets old. I walked into the room wearing the Goofy hat and Cindy laughed. I walk out of the room, then back in again, Cindy laughs again. At bedtime I sang one hymn while Cindy drifts off, but she doesn’t yet fall asleep. When I stop singing she looks at me wearing the Goofy hat and again laughs. I sing another hymn and the cycle repeats. I substitute a Chicken Soup story and the same cycle occurs. Each time I get a genuine guffaw, rather than mere giggles.
The physical decline tempers my expectations from this good news. I suspect her muscular atrophy eventually will affect her heart, though I much prefer heart failure over the more typical causes of death for dementia patients, infections and starvation. At least the most recent trends in alertness suggest joy even up to the time of passing.
My dream featured many elements, including acquaintances alive and deceased, that could provide much fuel for a dream analyst. I bother to interpret only those elements directly connected to Cindy. In the dream I was carrying her around as if she was an oversized infant in my arms, yet a glimpse at her head revealed a much older woman than what I see everyday, more the white-haired shriveled woman you might see in a nursing home. No dream analyst needs to decipher those dream elements.
Where I was carrying Cindy around was at an event held by an adult day care center. Hmmm. What does that mean?
There was a brief time when I brought Cindy to adult day care, either driving her or riding with her on the bus. Sometimes she suppressed tears during the ride. This was a time when she was mobile and more interactive, yet she was still by far the youngest person at the day care while also the least capable. I think that contrast was galling to Cindy, even though they treated her well. She would have good moments and bad moments at the center, but in either case she beamed brightly at the end of the day when I walked into the room to pick her up. The staff noticed, as did many of the elderly. If they spotted me first they quickly turned to watch the look on Cindy’s face as I entered. Her smile never disappointed.
I could not stand the thought of any sustained sadness for Cindy and the experiment with adult day care ended after but a few weeks. Why then was the day care revived in my dream? I remember an aura of warmth and contentment emanating from us, as I carried around Cindy as a combined infant and elderly lady. Other people in the dream could feel this, just as they did in the room of the adult day care we once attended.
Wearing the Goofy hat from the night before also may have contributed to this dream, a reminder that the two of us still have an aura of joy when we are together. In any case I knew what I had to do as I climbed out of bed, still fighting off the tears from “this time it will be forever.” I retrieved the Goofy hat from the next room and came back in to get Cindy up and start her day, leading off with “Gawrsh!”
Cindy laughed. Fortunately for me, I know her laughter will live on forever.
near or far, sending love, prayers, support and infinite blessings to you two.
I will be around next week, please lmk if and or when you might like a visitor : )
So will we 🙂 .
Tuesday and Thursday afternoons will work out best next week. Hope to see you.
I’ll be up this weekend and would be happy to visit if and when you feel like sending me a message.
Greetings Hannah. Sure, please come on by! Sunday afternoon probably works best. Be well.
From Mari Louise – Kirk every time you walk into the room and/or when I warn Cindy that you’re coming, she always smiles and often laughs out loud. I often hold back tears when I witness the incredible love that you and Cindy share. Cherish that love.
Warm hugs,
Mari Louise
If it is indeed spirochetes that are causing or contributing to the dementia, then very likely Cindy got bitten by a tick years ago.
There is a lot of work being done by herbalists to help with Lyme disease and it’s co-infections, and it might be useful to learn more. Apparently antibiotics can only do so much, and there are herbal protocols that are more effective.
I suggest Stephen Harrod Buhner’s “Healing Lyme” http://amzn.to/2yumvHi
and a site: http://buhnerhealinglyme.com/
If you are interested in getting more info or finding an herbalist to work with, I am happy to help.
Blessings to you both, Iris
You know I generally agree with your orientation Iris, but your claim here is not true. By far, by far, the most common spirochete associated with dementia is a different family than that for Lyme. I’ve had Lyme three times and have been successfully treated three times (so much time spent in the wilderness attuned me to this). Cindy acquired Lyme after her dementia struggles already started, was treated for the Lyme, it’s eradication confirmed, yet the dementia symptoms continued. People need to be alerted even more to their gums than ticks in this particular matter.
Ah. I don’t know that much in this area, was just suggesting from my limited knowledge.
So what is the spirochete, and what does it have to do with gums? Darn, I thought maybe I had given you a clue.
In the previous post, “A Shot in the Dark,” I covered spirochetes a little bit. In brief, they are helical bacteria. There are three main families (if there are more than 3 I don’t know the others). One is usually associated with bad water, usually abroad, but remotely possible to get here. One is the family that includes Lyme, Borrelia. The third is the Trepenoma family, comprising both the syphilis bacteria and those associated with gum disease. One study found the Lyme spirochete in about 30% of folks with Alzheimer’s, but Trepenoma was in 90%. Some caveats: 1) the correlation is with amyloid plaques/Alzheimer’s, not with all the total dementia cases. 2) A person like Cindy with early onset is likely to fall into that 10% without spirochetes, with a genetic mutation being responsible for the accumulation of amyloid plaques, but it’s worth a try to treat her anyways, because of low risk for any type of harm if we are conscientious about maintaining the gut bacteria. 3) However, it’s not known what role spirochetes might play. Do they compromise the immune system? Or does a compromised immune system allow for an invasion of oral spirochetes? The spirochete relationship could be cause, could be effect, or simply spurious. OK, so that wasn’t really brief.