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?

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