When the mind has gone

My Grandma has recently been diagnosed with Dementia. I thought I had a good understanding of it because many years ago, I worked for a team of doctors whose specialism was psychogeriatrics. My Great Grandmother (on my Grandma’s side) had dementia and my Grandad had a rarer form called Dementia with Lewy Bodies. I was only 21 when my Great Grandmother died and I didn’t really know her and I wasn’t particularly close to my Grandad either, nor was I around him very much when he was ill. I’ve realised very recently that although I may have once had some knowledge of what Dementia is, I have never really experienced it.

I’m very close to my Grandma. When she was younger she wasn’t that great to be around. She wasn’t the type of Grandma who was particularly warm and affectionate, although she did have cakes that she would give out freely from her pantry, so she wasn’t that bad. She wasn’t unkind either, she was just very stern and matronly. There have been a couple of occasions in my life when I have lived with her for a while and as I got older I just visited her more. Over many years we became closer and more like friends. My parents immigrated to America in 2007 and she became my surrogate mum. My kids were still young and I only worked part time. We would spend a lot of time with her and we’d go to different places or just go over and hang out for a while.

My parents returned but I still continued to visit my Grandma weekly. Over the last few years it has been every few weeks and monthly sometimes, but we remain close. Recently it has gone back to weekly again because she lives close-by. For the last few years she has struggled getting about and has this odd thing where if she hits her foot in a certain way she ends up falling. She is also very unsafe on one of those whizzing scooters you see old people on, that really shouldn’t be on because they go far too fast.

She’s never really been happy but she would reminisce about days gone by and what she used to do. She’d tell me all about her childhood and her sisters. She’d find joy in some things and we would often laugh about insignificant things that just seemed amusing at the time. I got her to do her first selfie a few years ago too. I don’t think she really understood what a selfie was but was happy to smile all the same. She is a born again Christian and so she has always found happiness with the Lord and talking about that. She went to church every week and had joined in Bible classes and various things that go on in the church. In the past couple of years though things have changed somewhat. It started with small things. She started to forget names and stopped being able to write. She’d always write letters to everyone and whenever she got a bill that wasn’t right or a letter from something official she would always hand write back.

She stopped going to Bible classes because she couldn’t articulate what she wanted to say and although she loved singing she would often forget the words. She was still Grandma though and still going strong beyond 85 and I have often thought she’s doing pretty well really. After too many falls and near misses on her scooter, forgetting too many things and everyone being worried about her being alone, she moved into an assisted living home. She still has her own self contained flat but it’s just set within a bigger home where there’s a communal lounge and a restaurant for her to have dinner, a shop and other places everyone can get together. There is 24 hour assistance and more people milling around for her to chat and hang out with.

Since moving she seems to have deteriorated ten fold. My mum finally took her to the doctor and she has been diagnosed with Dementia.

It wasn’t a shock. We all knew really and it just seems like one of those things that comes with old age to some people.  She is 88 in May.

My mum told me that Grandma had stopped going to church. I was totally bewildered because she loves church. Loves the pastor, the people and everything about Sunday mornings. She is devoted to it. I said I’d speak to her when I went to see her.

She said that she can’t go anymore because they’ve changed it, that the service is totally different and not how it usually is. The pastors have now been trained in a new way of doing things and that from now on it is going to be different. I have been to the church service with her so I tried to understand what was different. She couldn’t tell me but just got more and more cross with me the more I asked. We even went through each stage of the church service so that I could pinpoint which part had changed. She told me that after the children go out of the main church service to Sunday school the rest isn’t the same. I asked if the pastor was still preaching from the Bible and she said of course she is but it isn’t the same. They are doing it all differently and she doesn’t understand it.

She then said that the pastor won’t tell her about it and explain either. She had asked her friend there who picks her up and brings her home again but she said that the pastor won’t tell her. I was so shocked and totally confused about it that I rang the pastor on my way home.

I was actually surprised to learn that none of it was true. The service remains as it always has been. Grandma has been becoming increasingly agitated at church and with people who go to church. She has been ringing people and getting upset. She has been upset at church and not sure where she is or how she is getting home and on the day I had gone, that morning, the lady had gone to pick her up for church and Grandma had told her that it had been arranged she was not going and to go away.

What struck me is how believable she was. She was just Grandma talking about a problem at church. I didn’t even realise when she was getting cross, because she does get cross sometimes if you keep asking her things she can’t explain. That was always quite normal even when she didn’t have dementia! She always says something and follows the sentence with, ‘and such like’, because ‘and such like’ just explains everything.

I did a bit more research on dementia and spoke to a few people who have had relatives with dementia and concluded that I would just agree because I didn’t want to upset her or agitate her by asking questions when things just didn’t make sense.

I knew I needed to accept that the dementia meant that Grandma was now different but she was still Grandma and so for me it felt difficult to be any other way with her than we had always been. She didn’t chat as much as she used to and we couldn’t go out like we did, but I didn’t want her to not be Grandma or for her not to understand me.

I went to visit her yesterday and bumped into her as I walked down the corridor. She’d missed the buzzer so came out to see who was there. Her hair was so short! She usually wears it short but I realised, trying not to stare, that it was completely cut short to her head. Not only that it had been totally hacked. The sides had different layers that were just chopped lines and the front was all different lengths, but it was just cropped short, close to her head.

‘Have you been to the hairdressers?’ I asked. There is a hair salon in the home.

‘Yes, dear’, she replied. ‘She did it a lot fancier than I have it now, she did it up a bit here and there and she went to so much trouble with it, it looked lovely. When I woke up the next morning though it had gone flat and I couldn’t do it well myself so I just flattened it down.’

‘Oh,’ I said, ‘well it looks lovely’. I could hardly tell her otherwise but was secretly a little bit annoyed that a hairdresser had made such a bodged job of her lovely white hair.

‘She told me to do these wispy bits at the front spikey, like this,’ she said fluffing the different wispy lengths that barely grazed her forehead. ‘Then she told me to just smooth this bit down’, she said patting the sides.

‘Right’, I said smiling as we got to the lift.

‘It was very expensive,’ she said.

‘Really?’ I asked feeling annoyed again that not only had the hairdresser made a complete mess of it but that she had charged her a small fortune too.

‘£2’ she said.

‘£2?’ I asked, smiling. Now I did know she often got mixed up with numbers and especially money.

She screwed her face up and said, ‘not £2 but you know a lot of money and such like.’

We went down in the lift and walked through to the lounge for some tea.

While Grandma was settling herself into the chair I quickly text my mum to say that the bloody hairdresser had made an absolute mess of Grandma’s lovely hair.

There is a lady there called Barb. She is usually sitting with someone. I think there are a few women who probably look out for her because she doesn’t know anything, even where or who she is. Each time I go Grandma will tell me that Barb has lost her mind.

We sat down and I could feel Barb staring at me. I smiled.

‘Do you live here? she asked me.

‘No, but Grandma does don’t you Grandma?’ I replied.

Grandma nodded.

‘Where do you live then?’ Barb asked me.

‘I live in a village nearby,’ I replied.

‘I don’t live here either,’ she said.

‘Yes, you do,’ the woman next to her sighed.

‘Really?’ Barb said looking quite puzzled.

The lady next to her nodded.

‘Oh,’ Barb said bemused.

We sat in silence for a few minutes.

‘Well I’ll be off anyway this evening,’ Barb said and smiled.

‘Are you getting picked up then to go out?’ the lady next to her said.

‘No, I’m going home’, Barb replied assuredly.

‘You live here Barb,’ the lady said firmly.

‘Really?’ Barb said.

I smiled and became mindful as I did, really fully present as I looked at Barb. It was clear she was not present at all. The conversation was oddly funny to listen to, but my smile waned and in that moment I felt incredibly sad.

We sat for a short while longer before Grandma and I headed out of the lounge.

‘She’s lost her mind,’ Grandma said as we left the room.

‘Yes, I can tell that,’ I replied as we walked down the corridor to walk for a bit to give Grandma some exercise.

When I left it had started to rain. The double doors whizzed open and I turned to wave at Grandma as she shuffled along with her walker back down the corridor. The air felt cool and I lifted my head to feel the rain falling across my face. Such a contrast to the heat inside, but it wasn’t just the heat that felt stifling, it was as though they were all just trapped in there. I know they aren’t of course, they are free to come and go, but they actually don’t. They just come and go from their rooms back and forth to the lounge where they have similar conversations over and over again.

I took a breath in and headed towards the car to ring my mum.

‘Shelley!’ she exclaimed as she answered the phone. ‘She cut her hair herself.’

‘What?’ I cried, not believing what I was hearing.

‘I went to see her the other day. I meant to tell you before you went today but forgot. She said she’d woke up one morning and her hair was sticking up all over the place so she’d cut it to tidy it up.’

‘But…’ I stammered, recalling the elaborate story and detail Grandma had gone into about the hairdresser and how she had told her how to have her hair and what she had done to it. I couldn’t believe it.

It had happened again. I couldn’t and haven’t figured out whether Grandma told me the story about the hairdresser because she didn’t want me to worry about her cutting her hair or whether she had truly believed what she was telling me. I know deep down the latter. She believed what she was telling me herself. She even pointed to the hair salon as we passed it walking out of the lift to show me where she had gone.

There have been other stories weaved in and out of those; about the TV being different, the staff, the laundry facilities and I wonder which are true and which aren’t. It doesn’t really matter because I just believe what Grandma tells me. She is my Grandma.

It struck me today about mindfulness. In that moment when I was in the lounge and became fully present. It was so noticeable that Barb wasn’t present at all, but I wondered if maybe she could become present, would that help? If I could get Grandma to be more present, would that help, or would her present be somewhere different to where we were?

I thought about what Grandma says about Barb, ‘she’s lost her mind…’ not realising that she has perhaps lost her own too.

I have wondered how you can be mindful if you have lost your mind. I thought I might try that with Grandma and just like I felt with Barb, perhaps then I would know when she is present and when she isn’t….the times when her mind has gone.

When the mind has gone where does it go?

Mindful of Others

A little background before I begin the story to this post…

I freelance as a brand and marketing consultant, which involves a myriad of different work situations from writing and creating artwork to branding and managing social media. I work for a variety of companies, some regular and some just on a project basis.

Yesterday, I was at a marketing meeting for a business where I’ve managed their brand and marketing provision for the past 3 years.  I enjoy being freelance because I can work from home and manage my own time, but obviously providing regular provision for clients means that I also dip into scenarios where, for all intents and purposes, I am seemingly an employee. I get involved in day to day operations and that includes meetings.

I don’t consider myself conventional in many areas and this lends itself well to being able to work different to most people. I am flexible and can adapt to changing environments and workloads. I like the variety and of having a different ‘head’ on depending who I am working for.

Someone new joined this particular company and although there is great benefit to the business in this person’s role, there is also, in the process, as there often is, a lot of toes being trodden on. Egos are bruised, emotions are high and the meeting became rather fraught. As a parent, it reminded me of when my kids were younger and I would go pick them up from nursery. In this tiny space there would be all these kids jostling for the slide or arguing over who had something first.

Having been through a journey of self development for over 10 years I have come to realise that as we grow into adults, unless we become aware and address our dysfunctions that form from our childhood experiences, they will continue to play out and actually become stronger the older we get.

What better way for them to appear than in the workplace.

I meditate daily, I practice yoga every morning before the birds wake up, I eat a healthy diet, I don’t drink and I have worked on my issues more than I can myself comprehend at times, but this does not make me super human, in fact I would say it makes me more human. It makes me more sensitive and certainly more aware. During the meeting, I too felt a surge of emotions come to the surface around my own role and the benefit of that within the organisation.

I am a constant work in progress and so naturally when I drove home and later mulled over in my mind the events of yesterday, I realised how attached we truly are to things that really, in the grand scheme of things, do not matter.

I don’t say this in the sense of not caring about your job or that the work you do doesn’t matter, I say it in the sense of the way we allow our egos to steer the ship. For when it does, we are allowing our emotions to take control and run away with us. This is what happened yesterday for me and I believe most definitely, for a couple of other people in the room too.

Not only was the meeting difficult, but in jest my beliefs were also questioned. My Buddhist path and the core of what I believe and that which I choose to guide my life with. Together with my role in the business, I not only took these things to heart, but actually questioned them to a degree that resulted in me feeling stressed.

Is it bad to question yourself? Not at all. Tony Robbins always says, ‘quality questions create a quality life.’ I try to avoid good and bad but it came to me in meditation that questioning myself wasn’t the issue. That was just part for the course I was on. The problem was in that I allowed myself to respond unconsciously. I wasn’t present or being mindful at the time. I had slipped into autopilot and the old patterns that had previously for most of my adult life ran the show, were once again in control. You could think of this as your child like self acting out and as I said earlier, jostling for position to keep on the slide or hold the toy. The common saying is known as, throwing our toys out of the pram!

When I am mindful I have empathy for others. I see that often people act out (much like children) their dysfunctions and let their egos run the show. They respond to each emotion as they arise. If you have ever watched children in a playground before, you’ll know the behaviour I am talking about. Adults in a meeting are at times no different.

When we are mindful we are present and aware of our responses. We notice emotions within us, but because we are present we can choose how to respond. We can remain silent, we can ponder on a question or a comment before we say it.

The outcome of being mindful in a situation like I was in yesterday, is vastly different from one where you are on autopilot.

I would not ordinarily question my core beliefs, because over the years I have chosen for them to be there. They are part of who I am and how I choose to live my life. I would not question my value because I have come to know my value and I would not question my behaviour because I always try to be the best I can be and to help others.

However, when you are on autopilot you are not clear and when the ego and emotions run the show there is confusion, doubt and fear.

I left the meeting yesterday feeling all of those things and they plagued me as I went to sleep and during my yoga practice this morning.

Meditation of course brings clarity and during my practice it came to me, that of course I am human (people often need to remind me of that fact), and I can only do my best. To keep on giving, whenever there is opportunity to, to remain humble and keep learning as if a beginner, to continue working on my own personal development so that I can help others, but most importantly to be mindful. Mindful in every moment I can be, because ultimately that enables me to be mindful of others.

When we are mindful of others we can smile and let things go, because we see the humanisms in others that are also present in ourselves. Everyone has their own set of dysfunctions that they play out on a daily basis, everyone is doing the best they can with what they have and who they are. When you are mindful, you are in a place of forgiveness and acceptance of that.

Being mindful of others means you do not need to be right, instead you can choose kindness.

Namasté (I honour that which is in you that is also present within me).

[This beautiful ink and letters image is from Geli. You can visit her blog and read and see more of her work at http://hellogelibee.blogspot.co.uk/ Thank You Geli!]