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