The beauty of dementia

On Dec 31st 2015, somewhere in the air between Dubai and Zurich, I decided to follow my heart, which is to take 5 months off, go to Indonesia and be with my Mum, as she was recovering her health.

I was excited and nervous at the same time, as I felt so strongly that I won’t be coming back to Zurich the same person. A lot was waiting for me in Indonesia, although the one main thing that was obvious to me then was my Mum.

I arrived on January 29th and I have enjoyed every minute of it since. One big question mark that I had then was how can I be a productive support for my Mum who has dementia. I don’t know exactly what dementia is. There is a lot to get to know.

Between then and today, trust me, I went through a roller coaster of emotions. I’ve experienced my Mum often got highly disoriented, and even delirium. She seemed to live in a parallel world to mine, that I could not see what she saw so vividly. She had her own reality, and I was not in it.

When she napped, she would wake up for a few minutes to call out my name or her carer’s. Our response was what she was looking for as one of the scariest thing for her was to be left alone. I saw how my voice saying “Yes, Mama, I am here” gave her the permission to fall back to sleep again.

Then there were times when she called me as her older sister or her younger sister. When this happened, I did not even correct her anymore. I felt that the last thing she needed was for people to correct her. She did not do this on purpose. Her brain could not function the way it did, so no matter how often I corrected her or answered her for all the repetitive questions she asked me every 2 minutes for a period of time, she could not remember it.

It was sad, yes, as I knew her as one of the sharpest persons with a memory like an elephant. My Mum rarely forgot anything.

Today, actually for over a year now, she could not retain much of  the short term memories. Moreover, she starts to loose her older memories and regularly blurring her experience awake and in dreams. For her, the two are merging together.

When I arrived in January, I still had a bit of time for myself during the day. But since early April, this has changed. I have been with my Mum all the time, including when I sleep. When I had to excuse myself for grocery shopping or take some extended phone calls, her world seemed to be out of order. We could calm it down after a while, but I genuinely saw how confused she was.

It was difficult, very difficult at first. I feel sorry for her, particularly when I could not see what she saw in her own world. Over time, I let go the need to understand what is going on in her mind, and just play along. I utilise my heart instead. I feel her, tune into her, sense her. All the above. This is how I relate to her these days.

Never did I think that my Mum is going crazy. Not at all. Her mind is just shutting down slowly and consistently. This is what is going on. I keep telling myself, focus on her soul as it remains as is, as it has always been and as it is always will be.

Yesterday was a special day.

Mum was complaining about some discomforts she had and I, all of a sudden, started asking her if she’d let me guide her in speaking to God. With no resistance, she did. I was so surprised and mesmerised. Never did I ask nor did she ever ask me to do something like this as long as I can remember.

I asked her to repeat after me sentences after sentences after sentences. It was quite long. When we finished, I asked her how she felt and she said her heart was peaceful.

A light bulb got switched on in my mind. I realised then as her mind did not work normally anymore, she may not be able to express what she wants to pray anymore…. I just realised it then. So, I decided to see whether she’d be happy for me to do this again with her.

And, we did, before she went to bed that evening. She did not repeat after me, she just looked into my eyes when I spoke to God for her, closed her eyes and fell asleep peacefully. My heart sang, so loudly.

All of a sudden I understand what I was saying yes to her soul for (yes, I did speak to her soul in July 2015 as it came through as a premonition to me). I agreed with her soul to accompany my Mum on her passing away journey, regardless how long it may take.

Now, I realised that this is one of the ways to help her getting peace within her. I am grateful to have come to realise this so I can do this more and more.

So, today, I did the same thing I did yesterday, more frequently.

This evening, we did praying session together and when we finished it, she, all of a sudden said: “Papa (my Dad) is always close, right? “
I am so happy she said this as she seems to feel connected. She then said, “it is nice that they will take care and protect us when I sleep. I can now go to bed”.
Aaaah, I am so elated inside my heart. I feel and see now the beauty of dementia, where the mind has no control anymore and it gives opportunity for her heart to connect and drive the journey. Her mind that was very dominant does not rule anything anymore… it is all about how she feels. Expressing feelings is something she does now and rarely did so before she got dementia. She was not comfortable being vulnerable back then, instead she expressed herself with anger. Not anymore now…
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A friend of mine sent me an excerpt from the Koran that says that it is a blessing when you lose your ability to remember. I was not sure what that means until just now.
This afternoon, I put on some music from Mum’s favorite artists and she was responding with sing along sometime. This made my heart sang with her…
I am discovering the lessons that come with dementia as I support my Mum. It is becoming more and more clear to me that I need to use a different tool to communicate so I can actually be communicating with her soul, rather than her mind.
Communicating through vibration is what this whole experience is teaching me.
I am very touched as I experience what dementia is giving both me and my Mum. My Mum is becoming more and more in-tune with her own feeling and more and more upfront and honest in expressing them.
I am learning to communicate in a different way, and I am sure this will come in handy at some  point in my life.
Now I can see how everything that happens in our lives are gifts.
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