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My Deepest Fear (It may not be what you think it is)

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My Deepest Fear (It may not be what you think it is)

I chose to focus on older-adult mental health while I was still studying Clinical and Health Psychology. I began my internship in a large healthcare organization specializing in rehabilitation, chronic illness, dementia and brain damage. I started working with people with dementia, families and staff, specializing in moods and behaviours.

Over time, it became personal.

Deep down inside of me, a dark fear emerged. It never left me.

It is not what most people think it is.

It was not a lingering angst that one day it would be me, or that it would be a family member, although that would be difficult too.

My fear was that other people would not truly see me anymore once I had dementia, that I would not be accepted for who I would be in that moment.

You see, one day, as I was sitting in the living room, observing residents with dementia, staff and interactions, my eyes fell on an elderly woman named Angie.  She was sitting quietly, seemingly in a sort of absent state.

She didn’t respond to anything that happened in the living room. She looked depressed and nervous.

Suddenly, she stood up, holding tightly to the table. She looked frightened, as if something horrific was happening in front of her. She began to cry passionately.

The intensity of her tears, the pained look on her face, the anxiety and the despair chilled me to the bone.

The nurse in the room, meaning well, told her to calm down and requested she sit, but Angie didn’t want to hear any of it. The nurse tried to convince her and insisted that everything was okay, that there was no need to cry, but Angie refused and pushed the nurse’s hand away.

A cup of coffee fell to the ground. The nurse appeared somewhat frustrated.

It didn’t go well.

As I witnessed Angie’s heartbreaking plight of fear and sadness, a long-lost memory resurfaced that would have a profound impact on the rest of my career and, in fact, my life.

I must have been about five years old when, nearly every night, I would wake up crying after the same recurring dream.

I can still remember the feelings of loneliness and confusion as I heard my own weeping in the empty silence of the thick darkness. It was as if I was abandoned and lost.

In those dreams there were no scary zombies or monsters or anything we generally consider frightening. Nonetheless, there was something inexplicable that upset me. For years I didn’t really understand what it was, and later I purged it from my memory.

Now, looking back as an adult, I’m better able to describe what I felt as a child.

During those nightmares, what I experienced was similar to being locked inside myself without any ability to escape or ask for help.

Feelings of pure loneliness, desertion and abandonment in a never-ending silent darkness prevailed.

It was my mother who would come to me and calm me down, reassuring me and staying with me until I felt safe again.

It turned out Angie was re-living horrendous experiences from her youth, when her father would threaten her and her mother with a gun. Her old trauma re-emerged, and in that moment in the living room, it was real to her. This happened about three times a day.

 

I found that the way to calm her and bring her back to the feeling of safety was to carefully and slowly approach her, seeking eye contact, while gently touching her hand. Once her teary eyes met mine, I would hold her hand and “tell” her with my gaze:“I am here for you. It’s okay now; you are safe.”

I would maintain eye contact, and then I would say aloud in a calm tone:

“I am here…

I see you, and you are safe….

It’s okay now…

I am here for you.”

 

She would calm down and eventually we would sit together while still holding hands. Then we would listen to music, and she would remain placid for awhile.

My deepest fear, you see, is to feel lonely and lost again, to end up in a situation where nobody takes my feelings, my experiences and my perception seriously, to find myself stranded where I’m not heard and nobody looks me in my eyes, letting me know that they see me, that they are there for me, and that everything is okay. Sadly, this is the reality many people with dementia experience daily.

The intimacy of belonging, the feeling that you are not alone, is one of the most important and profound experiences for our wellbeing. This is not only true for the social butterflies among us; it’s fundamental for each and every human being.

It’s not about how many people we feel connected to, as long as we experience an authentic connection with someone.

In essence, we don’t survive if we don’t have others to care for and support us. People with dementia need to feel those moments of true connection too, regardless of their ability to communicate or level of functioning.

People with dementia have been voicing that one of the hardest factors of the illness is when their loved ones suddenly don’t include them anymore.

Even in later stages when they may not be able to express it, they can still feel that they’re not being acknowledged.

Our environment plays an important role in feeling safe and whether the people around us make us feel safe, as assessed by the deeper parts of our brains. Our brains also assess whether a person is sincere or not.  This happens on a subconscious level, and it’s where our “gut feeling” comes from. The same holds true for people with dementia.

Feeling safe with another person depends on a variety of factors, including compassion, empathy and authenticity (whether the person truly cares about you). Most people, including those with dementia, can sense when you are present and sincere and when you’re not.

When you feel lost, alone and confused, the most precious gift is for someone to just be there for you, to offer their presence, look you in the eyes and say in a loving way:“I hear you. I am here for you.”

The genuine presence of another person can feel like a precious eternal moment. In that moment, things are okay.

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I have been able to turn my deepest fear into a strong drive, and, based on my experiences, I have adopted a penetrating belief that every person living with dementia can experience true connections, joy and profound, meaningful moments.

With the help of the latest neuroscience findings and best practices, we now have a much better understanding of what we can and should do to reduce stress and anxiety for the person with dementia and increase his or her quality of life.

The same goes for caregivers and family members, who too often feel abandoned while battling loneliness on their journey, and for professionals, who need the right strategies and tools to be able to serve their clients on a deeper level.

This is my mission: to make life with dementia worthwhile, to increase moments of joy and develop meaningful connections for everyone on the dementia journey.

I would love to hear your thoughts, stories or questions. It may help others and it helps me writing articles and tools to help.

Please leave a comment or question below, or send an email: njans@uptimizeyourlife.com

With love,

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Connecting with a Person with Advanced Dementia

a Person Who Has Dementia

One of the most difficult things

One of the most difficult things I’ve experienced when my dad started to change, was the fear of losing him.

While he was still alive.

I’ve heard others mentioning similar feelings, and I think this is one of the most profound fears when your loved one who has dementia.

Feelings of anxiety, sadness, distress and frustration are normal.
But what if we could remain in a state of deep connection with them through their change?

Even when dementia has progressed to a very advanced stage and communication is incredibly impaired or no longer possible at all?

What if we could still reach the person on a deeper level and touch his or her deepest core of self?

A story that changed my life

Allow me to share a story with you.

Years ago, when still in University, I’ve heard a husband sharing his story. At that time, I had no idea how much this would influence my work and career.

His wife had Alzheimer’s disease for several years, and the disease had progressed to the extent that she wasn’t able to talk anymore, walk or do anything on her own. She also needed help with eating.
He visited her every day and helped her with her meals. Every day they had the same ritual.

He would sit next to her at her bed and talk to her.

She then would open her eyes and he would give her a kiss and help her with her meal. After finishing, she would be so tired, she would close her eyes and fall asleep.

Then one day he got sick and had to be admitted to the hospital.

He was worried and felt guilty that he wasn’t able to care for his wife during this time.Of course, his wife would now get help from the staff, instead of her husband.
Fortunately, he recovered and was able to visit her again after two weeks.

When he first saw her after, he  noticed things were exactly the same, as if nothing had changed in the last two weeks.

He came into the room, talked to her. She wouldn’t say anything; her only reaction was opening her eyes to look at him.

He sat down next to her at her bed, helped her sit up, took the spoon and put food on it, and brought it to her mouth, and she looked at him as she ate. After that, she was tired again and fell asleep.

Things went exactly as they had been before his two-week absence from his wife’s side.

And maybe for a brief moment he had a deep sense of loneliness when he realized she probably hadn’t even noticed he had been gone.
After his wife fell asleep again, he spoke with one of the staff members before he went home.

The staff member told him that everything went fine during the time he was in the hospital; she ate well, despite that it was difficult to communicate, and she always kept her eyes closed, even when the nurse talked to her while giving her dinner.

She always kept her eyes closed while he was away..

This struck the man as a vital piece of information.

His wife only would open up her eyes when he came to visit her.

During all that time he was ill and kept away, she had not opened up her eyes.

Now he knew!

He knew that he and his wife still had a deep and special connection!

This is when he decided to share this story with students, professionals, families and anybody who was interested. He started giving talks about dementia and that’s how I heard his story.

That story will always inspire me.

I will never give up finding ways to connect with people with advanced to severe dementia.

There is always a sense of self that can be reached. We may not always notice it.

The most important thing is to believe in it. If you believe in it, it allows you to touch the person and maybe even see it happening.

If you don’t see it or are not noticing anything, that doesn’t mean that you’re not making a difference.

We won’t always see what is happening inside someone’s heart.
Maybe you wonder what to do, and at times it may seem very difficult or even impossible to connect.

But you can still do certain things.

Here are some ideas. Give it a try, play with it and after a while you may want to become a bit creative even.

And again, if you don’t see a reaction, it doesn’t necessarily mean that it has no impact.

Touch

Touch and intimacy are crucial for human beings in order to feel connected. The brain and body respond to it and can result in a deep sense of connection and positive feelings. Gently hold his or her hand or caress it lovingly. A hug can be very powerful, if it is done carefully.

Sound

Turning on music or singing a song can have profound effects. You can listen to it together and just be there with the person being fully present in the moment. Find the music that the person enjoys or responds to with joy, relaxation or excitement. These days we can access different kinds of music easily. Use your I-pad or cell phone. You can look up some music on Youtube.

Scents

Just as the sounds of music, scent can have a positive effect, especially when the brain is impaired. People tend to respond positively to the smell of fresh coffee, freshly baked bread or lavender. Experiment with this. If you use oils, use premium quality.

Taste

Try giving the person something to eat that he or she really enjoys. Don’t we all enjoy eating delicious food or snacks. Our brains love the experience of good food.

Visual

If it’s possible, make eye contact and smile. Do this for a longer time than you usually would do. A damaged brain needs more time to process it. It may feel awkward when you’re looking into someone’s eyes for a longer period of time, let’s say for instance with a neighbor, but a person with dementia gets a chance to process it and to experience a beautiful smile.

One last thing…

When communicating with a person with brain damage, we have to let go of “awkwardness” and simply focus on what works. As a result it will open the way to true connecting. If the other person enjoys looking at your smile for minutes or enjoys hearing you sing, then go for it. In fact, once you overcome the idea of “awkwardness”, a whole new world opens up to new possibilities. It may even feel liberating, helping you to do what really matters to you.

I’m curious, what are your experiences?

Please leave a comment below. It may be helpful for others to hear your story or questions.

Thank you so much,

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Author: Nadine Jans M.Sc. Clinical and Health Psychology

Client Question about New Alzheimer’s treatment

New Alzheimer’s treatment

This week I’ve received a question from one of my clients about the following article:

New Alzheimer’s treatment fully restores memory function

Of the mice that received the treatment, 75 percent got their memory function

back.http://www.sciencealert.com/new-alzheimer-s-treatment-fully-restores-memory-function

Hi Nadine, What are your thoughts about this new development?

Kind regards,
Kyle.

Dear Kyle, 

Thank you for asking my thoughts on this article, Kyle!  It’s great that a new breakthrough in Alzheimer’s research has occurred. Research in the field is progressing and this provides much hope for the future.

I believe that it is important to keep in mind that “a breakthrough in science does not automatically mean that it is a breakthrough for Alzheimer’s patients themselves at this time. For example, this research is successful on mice that have been artificially given Alzheimer’s disease. Now they will do further studies on larger animals (sheep) whose brains appear to have more in common with people. Obviously, the question is whether this method also works for larger brains without causing damage. To be able to do this, new devices will need to be developed before any testing on humans is possible, provided that the further studies are successful. So unfortunately it will likely still be many years before there is an actual breakthrough.

 For those animals / people who already have dead brain cells and damage in the brain, (resulting in cognitive deficits such as poor memory) the symptoms cannot be reversed. However it shows of big progress if further developments can be prevented inside the brains.

There are many promising results and research going on, which is difficult to track, as it’s a very complex neurological disease. So they have recently discovered that the real problem regarding damage to the brain is located in the oligomers which are the precursors of the plaques. This is a breakthrough indeed, but also the identification of genes and the elucidation of the chemical processes ensure that these accumulations occur.

Nevertheless it’s a very good development that researchers are putting so much effort in it and that consequently new pieces are found (breakthrough) of the huge complex puzzle.

When reading articles like this it is always important to remember to focus on the core of the research (the research setup and what they have discovered precisely). Don’t fall into the trap of misinterpreted “facts” by many journalists who are writing about the research (newspapers, magazines, websites). They often come up with their own conclusion which is not scientifically backed or is not displaying the correct nuance.

In other words, there is a difference between interpreting results and connecting claims.

I hope this helps!

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Author: Nadine Jans MSc. Clinical and Health Psychology