After feeding the cats I return to our “bedroom” to start Cindy’s day. If her eyes are closed, droopy or alert I go about my normal routine. On this day her eyes are fixed on the ceiling in a vacant gaze, giving me cause for concern. Before I get near Cindy I chat about anything that comes to my head. I turn on the music and overhead light for more stimuli in the room. Then as I draw near I announce:
“Hey, beautiful! I’m going to give you a hug. OK? Are you ready for a nice hug? Here I come.”
Whenever I see that gaze in Cindy’s eyes now I go into these precautionary measures. A few weeks ago Cindy also had a vacant gaze in her eyes as I was about to start her day. When I walked right over and hugged her, she immediately went into seizure. Her face turned beet red, revealing intense physical and/or emotional distress.
I continued hugging Cindy while adding soothing words to lessen the seizure. I did not give her lorazepam after the seizure was over since they usually are weeks apart. Plus I have been giving the anti-anxiety medicine only at night; I keep Cindy calm by other means during the day.
A few hours after her wake-up seizure Cindy once again vacantly gazed at the ceiling. I played guitar as a strategy that has worked well in the past. Not this time, though. Her body again went rigid and she started to breath convulsively. I threw the guitar on my bed and rushed to limit the seizure activity from round two.
Now that I am concerned when I see Cindy’s vacant gaze in the morning we have reached another milestone in Cindy’s decline. I gauge her condition by her only tell-tale feature, her eyes. Her vacant gaze indicates some type of internal agitation, occasionally accompanied by spasmodic rigidity of her limbs. This upsets me even when seizure is not the result.
At times Cindy still has alert eyes. She will look around the room trying to make sense of what she sees. Sometimes they follow me or another person around. Sometimes the alert eyes are joined with a smile. Ironically, Cindy becomes most alert for the few days after a seizure, as if she has shaken the fog away from her head.
When Cindy is neither agitated nor alert her eyes are closed or drooping, revealing Cindy to be asleep or barely awake. Another milestone had been reached a few months ago when I let Cindy sleep whenever she wanted during the day. She still sleeps at night as well.
I know what to make of the vacant gaze … that’s bad … and the alert eyes … that’s good. I am never sure what to think or feel about the closed or drooping eyes. Part of me feels relief, even comfort, in knowing that Cindy is at least not going through some internal agitation. I occasionally imagine that she might even be having a pleasant dream. The other part of me recognizes the increased amount of time Cindy has a vacant gaze or sleepy eyes, rather than being alert.
I take pride in Cindy lasting so long in hospice care, now going on twenty months. I take pride in how the nurses and aides still marvel at Cindy’s appetite and skin. I take pride in Cindy’s will to live continuing indefinitely. She cannot become any more nonverbal, immobile or incapacitated than in this final stage of Alzheimer’s, but her appetite, health and will to live remain strong.
Unfortunately, a will to live can prevent dying but provides no remedy for being fully incapacitated, at least not for Alzheimer’s. A will to live does not reverse the declining alertness. A will to live may not even mean life is being enjoyed. Make no mistake, the decline continues. It’s all in the eyes.
Kirk….I can easily imagine that you might dislike my thoughts on what is happening with Cindy. I often think I should just not say anything. But to not say anything, might be the wrong approach on my part.
Cindy’s experience sounds very much like my experience over the past four years. I do not look for diagnosis and thus fear of what might be happening, does not become part of my day. I know that Cindy was quickly diagnosed, based on family history.
Four years ago, I was also losing my “mind”. I will not go into the whole process, but I will tell you that because I was aware of what was happening cosmically, I did not have fear, other than apprehension about coming days and years of what this all would mean. In April of 2017, I went to visits Andy in East Canaan. Andy Jack is Anneke’s younger brother. I was losing my “marbles” and my memory, and I thought it was because of “energy” that predominated in Westerly RI where I lived. Andy and my friend John agreed that I was having a breakdown. I had wanted to move up to East Canaan to get away from the energy. When I got there, I found that I was affected in a worse way, that I really could not think well at all. I say this because you and Cindy live in Norfolk, nearby.
Probably none of this makes sense. It is extensive and one needs to understand astrology to understand how these energies affect some people and not others. I knew about Cindy and I wondered what her astrological “map” looked like, because I knew what mine looked like and I knew I might be in for some very difficult times mentally. As it turned out, over the next four years I had very difficult times with my mind and my nerves, and therefore my physical body. However……I did not fear. Looking at my “map” I knew this might last for quite awhile, but that if I could stay out of fear, I would survive and be ok. This has happened. However, over the past summer, when Cindy has been having “seizures” I was having what I call releases. Releases of a lot of anger, primarily; and of sadness and of memories of trauma of my childhood. As I read about Cindy, I wonder. I wonder if she, too, has held in anger and maybe other emotions. It sounds like that to me. It also sounds to me that perhaps she may feel guilty. You have been an amazing caregiver. Amazing. However, you are a caregiver with an assumption. I finally went for therapy, and my therapist is an energy worker who understands energy blocks. This past summer, while Cindy had “seizures”, I was exploding, at first every week or so, but more recently every other day and then every day. What surfaced was hidden memory and the feelings of fear that I had held onto connected to those memories. I was continually frightened because those memories took me to very frightened places and feelings.
It sounds to me that Cindy may have been in a similar place in her mind, her own experiences or even past life experiences which would resemble this life.
This is not modern mental health. It would not have been suggested to you.
During this time, I have been told to go for help from medical doctors. To get help and medication. I refused. I had my own trauma connected with hospitals and early death of my own mother, which intuitively I knew had been caused by the hospital. This turned out to be true. Thus, my fear of modern medical help. So I took the alternative route, and used herbs for anxiety, and my astrological “map” as a way to find hope. I was more explosive than Cindy. I was not married at the time, and owed no one any allegiance. Had I had a loyal partner and friend who I owed my life and lifestyle to, as Cindy has had in you, I might not have chosen the route I took.
I know that this idea does not set well with you. But Cindy’s progress sounds similar to mine, except we took different paths. You say she looks healthy, her skin, her eyes when she focuses etc. this process that I, and I am suggesting Cindy, have been going through in a process of changing awareness and consciousness, if it is allowed. Medication interferes. I have a friend who chose to use medication. It has affected her physical body.
Cindy is blond. She is recessive, like me. She walked your path with you, thinking it was also her path. It may have been, at first. She had your enthusiasm to carry her forward.
I chose an alternative route, using herbs for anxiety, instead of medication. That one simple difference may have been a life saver. I am now alive and well. Also I had hugs from people to whom I owed nothing. They were from Guatemala, and knew how untended sadness and depression can cause ‘illness’. They were there for me during these four years with hugs and soups and listening.
When you say that Cindy looks healthy, I am thinking ‘yes’. She is healing. If you could find a therapist, an energy healer, who would ask Cindy her thoughts, someone who would persist and not represent you or family. I know she stopped talking, but with a person like I suggest. She might ‘hear’ and begin to have confidence to say what has been stuck.it is the ‘stuckness’ of emotions and feelings that causes the Mind to stop working. I am sure of this.
Cindy has been in my heart and my mind. How could she not be? Off and on I have tried to share my thoughts with you on what has been happening. I have been learning as I have been experiencing. This is novel thinking and not medical. It is state of the art.
I think of Cindy often, and pray for her healing in my thoughts. It is possible. There is more to what I am telling you, but I have already given you too much.
Be patient with me, Kirk. You are one of our favorite people because of what you gave to Anneke and her friends, a love of hiking the trails.
Thank you for being so concerned about us. To sum up the experience you shared, you were skeptical of the conventional wisdom by modern medicine and relied on your own experiences to lead you towards a different path. I am also a skeptic. I am skeptical of all scholarship, including that of science and medicine, unless my own experiences lend credence to it. This blog has long challenged the conventional wisdom of amyloid plaques and tau tangles, advocating lifestyle factors as the key to brain health. That is another similarity between us.
I am neither more nor less skeptical of your approach than I am what science and modern medicine has to say. That is part of being a true skeptic: everything has a chance at validity; everything must be vetted through experience. It sounds like you don’t want me to be a skeptic. Sure, you don’t want me to put blind trust into science and medicine, which I don’t, but you do want me to trust your wisdom over what my experiences tell me. In other words, you don’t want me to do what you did yourself when you deviated from conventional wisdom. You are sure of your position and I should trust in your wisdom rather than my own experiences.
A few differences of note: Cindy was let go of work and first examined by doctors in 2010; she was diagnosed with Alzheimer’s in 2013. That’s not a quick diagnosis by any means.
When we hiked the ADT she got better, but when we went to hike the PCT she got worse. While there is nothing in my experience, ie, the health of fellow Norfolkians, to suggest there is something bad about the energy of this town, I certainly doubt that a whole 2600 mile wilderness trail has bad energy. She got worse because she was more advanced, to the point of no return. I don’t think any healer thinks energy can cure cirrhosis of the liver, since that is called by a toxicity to the organ. The same thing happens with the brain in Alzheimer’s.
Were you referencing last summer’s seizures (2019)? There were none this past summer. We went months without one, then in September I gave her way too much sugar for breakfast one morning and she had a seizure that afternoon. She had a lot of seizures a year ago for a similar reason, too much holiday sugar that spanned a month. Then she went a couple months without one until June. I forgot what might have caused that one. The most likely cause for seizures this fall? Constipation that has gone on for days. I’ve acquired a laxative for Cindy but, like with medicine, I try to use it sparingly.
I use medicine very sparingly because I believe in lifestyle factors first and foremost. The original prescription for lorazepam took over a year to use up. Until this fall it was a very last resort.
There are other details that I think you are projecting. You want them to be true for Cindy as they were for you, but that’s not always the case. To sum it up, out of the goodness of your heart and desperately wanting our situation to get better, you want to believe our experiences are similar enough to your experiences. Accordingly, you want me to do as you say, but not what you did. You don’t want me to question science and modern medicine by relying on my own experiences, instead. You want me to trust your wisdom over theirs. I like to think of myself as a very responsible person. Part of that responsibility is trusting in my own experiences, just like you did, over any other input.
I am glad you found the right path for yourself. I have no doubt that, by relying on your experiences, it indeed is the right path you found for yourself. May you continue to live well.
What sadness and challenges we go through as a part of being human. Life was not meant to be this way, and yet, it somehow is. You seem to have done a remarkable job. A love story, true through good and bad.