The spirit in Alzheimer’s

SpiritualAlzheimers_Meganlaughing_zpsd9c24397The following article on the spiritual aspects of Alzheimer’s by Megan Carnarius and is excerpted from an article published in Volume 3#1 of Natural Transitions Magazine (Communication). To sign up for the free e-version of our magazine – fill out the Contact Form on the Natural Transitions website. A high-quality print version of the magazine is also available for purchase. Please visit our Advertising page for details of how to reach our unique audience with your product or service.

Further lessons in letting go and compassion.

For me, Alzheimer’s is about transition and transformation, not about decline. It’s shedding and letting go, and moving into the next reality. For some reason, end of life for people with dementia includes this “wafting off” experience. As caregivers, we sometimes have discussions about whether residents will remember their time with us after they have left their bodies. I say, “Well, they might look back and think they were living in a weird fraternity house for a while!” In truth, my sense is that our inner work with them is what they will take with them when they die. What counts are our intentions, our goodness, and our wish to interact with them. This is what will somehow find itself into their life review when they transition.

As caregivers, we have been put in charge of the bodies of those with late stage Alzheimer’s. We provide water for them when they wake as we would for a monk in deep meditation. As their disease progresses, there’s a kind of quiet and peaceful depth these people enter. To a large degree, they live in this “depth” during the latter phases. It almost feels like a rude interruption, attempting to rouse someone who’s been very busy, even though they’ve been sleeping.

People with mid to late-stage Alzheimer’s often talk about relatives who have died. They’ll say, “I’ve seen my mother.” This phrase conveys, “I just had a wonderful conversation with her.” Who am I to say they’re wrong? When delusions and hallucinations occur with dementia, we have to make sure that the person is not physically ill or that their medicine isn’t causing problems. With these ruled out, there is often still a spiritual aspect to these visions and feelings because the threshold for those with Alzheimer’s has thinned. People can often cross back and forth from the here to the hereafter because of the deep and loving connections they have to others.

I think of myself as a compassionate person, and I felt like I knew a lot about this work. But losing my mom (that sounds weird because I know she’s around, although I have “lost” her in the physical form), not having this best friend to talk to, made me much more raw when I interacted with other families. That led me to consider the following: that which makes us more compassionate usually involves the experience of something profoundly painful. Losing my mom afforded me a greater understanding of loss. Getting diabetes woke me up in another way.

I’d always rated myself as healthy. Then I had the flu, and a virus settled into my pancreas and started killing off my insulin-producing cells. I ended up with type I diabetes.  Although I’m a nurse, I didn’t even know one could get that kind of diabetes from a virus.  Suddenly, I had to watch my blood chemistry. I realized that I had not been paying attention to myself at all. Diabetes and “sticking myself” regularly, forced me to shift gears. I wish I hadn’t had to learn to do it this way, but it was part of the dynamic I needed. I could have said, “I just got the virus and everything was accidental,” but there’s a part of me that just doesn’t believe that. Why was I vulnerable to that virus and someone else wasn’t?  I got it, so what am I supposed to be doing with it? So I try to pay attention to when I’m not mindful of myself because it’s much easier for me to tune in to the other person. I’m like a giant satellite dish. Megan’s available! “What’s going on with you and how can I make your life better?” I have to turn the same attention to myself.


Life recapitulation and review

When someone with Alzheimer’s gets to the stage where they lose fine motor skills, they’re letting go at a fundamental level, so they can cross the threshold. In essence, they’re leaving as they came in (without these physical and mental facilities). There’s a kind of intense spiritual purity about that. The word “occult” speaks of that which is hidden. What is real in our reality and what isn’t? The experience of Alzheimer’s and memory loss is very stark and raw. If I can’t talk to you about my stories, does that mean I’m not here? I don’t have value? We can, however respond with “No, you’re a whole spirit having a handicapping experience.” Those were my mother’s words about my younger, disabled sister. In this life time, we may have grown up, worked a job, raised a family, and “done what was expected.” Then we go through this handicapping phenomenon that causes us to recapitulate our life and review it. We might ask, “What are some of the things you could access through your dementia that you couldn’t have otherwise?” Here are some examples.

Two spouses came from a generation where you married and never divorced. Theirs was a very difficult relationship because the wife had severe depression and the husband was always trying to fill in the gaps. He wanted to make her feel better, but he often felt angry at this role. The husband was in his eighties when his wife’s clinical depression intensified, and she was also declining physically. Around the same time, the husband started to exhibit dementia. When I met him, I had such a strong sense of his inner stance, one of “I must stay! I must be here!”  He couldn’t physically remove himself from the situation. He couldn’t say, this hasn’t worked! I need to go on to something else. He was so committed to the dynamics of the relationship. Then, as soon as his wife entered the nursing home, and he was in a memory facility struggling with his dementia, he started getting clearer. He was able to talk with lucidity about many things. Until then, he’d had no idea how to create a different space for himself, so he could perform a different kind of role. We know that some people suddenly develop a terminal illness when they retire because they cannot redefine themselves. Dementia gave this man an opportunity to review his role in life, and the ability to grieve.

Dementia can also transform strong matriarchal and patriarchal roles in families. The dementing experience can allow people to let go of behavior patterns. Children who have never felt empowered, who have always looked to the parental figure, can find that everything is slowly handed over. By the time the patriarchal or matriarchal parent is dying, the parent knows that their kid is safe and able to function as a responsible adult. Alzheimer’s facilitates this shift in view. If death had come suddenly to the parent, the shock may have further disempowered the child. A gradual transition allows the child an opportunity to pick up the reins.

It’s up to us to remain awake to the spiritual experience of the person with a dementing illness. For the caregiver, it’s a path to learn compassion and introspection; a spiritual opportunity. Our task is to hold people with dementia in our consciousness — when they are “unavailable” to us in the conventional sense.

Our society often disqualifies people with dementia or disregards them. Dementia-ism as well as age-ism exists, and I’ve spent my career distancing myself from both. Who are we to say that those with dementia and Alzheimer’s are not experiencing something holy?

Working with the process of dementia or Alzheimer’s is a lesson in impermanence for me.  We all know that things change, and life moves us into unimaginable experiences. Some of these are good. Others, at first glance appear as bad. It is easy to trust the flow of the universe when events bring joy, happiness, or ease to our lives. It is much harder to embrace the painful things, which challenge us deeply and make us grow. Alzheimer’s has been called the “plague” of modern times, and we often view it with fear. But I believe that our bodies are physical homes for our spiritual being, and this spiritual essence remains eternal and unchanged. We are much more than “the matter” of our brains.


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