Dear people in my computer,

I think I might have fallen into that social media trap a bit.  You know, the one where you make life look a bit more smiley than it is.  It’s tricky, because nobody wants to read unsmiley or ranty stuff all the time, but there should probably be a balance or I’m not being terribly honest which doesn’t really help anyone.

So, I hold my hands up and admit that I have glossed.   And for today at least, I will not.

Last week when I went to visit Mum, she was really lovely to me – she greeted me with a smile and got out of her chair ready to go somewhere together…until a member of staff corrected her when she called me Sister 2, and told Mum I was actually Pog.  Mum was not happy to discover this (me being her least favourite daughter 90% of the time) and refused to chat very much on our outside escapade, or over our coffee and fruit.

When I left, she wouldn’t look at me, let alone say goodbye (although the Lovely Phylis who sits next to her blew me a kiss, which still makes me smile.) It was a bit tough, but it wasn’t the end of the world.

This week I arrived as Mum was finishing a coffee in the lounge. I asked if she’d like to come with me to put the flowers that I’d bought her in a vase in her room and drop off the toiletries I’d picked up for her at Tesco with Dads shopping.

‘Where are the others?’ she asked, looking around me

‘It’s just me, Mum’

‘It’s not worth the effort of going to my room if it’s just you’ she replied.

I said that was ok, I’d go and pop the things in her room on my own, but that made her cross, so I found her walker and we made slow progress.  We had a small dispute over which direction her room was in, and I think this compounded the grumpiness that I was disappointingly just me.

When we got to her room Mum refused to sit down.

Then she wanted to sit down, but didn’t want to be guided into the chair.  And despite me using my arms and legs and voice to try to help, she did the sitting bit too early and slowly slid to the floor.

I got her back up, sitting in the chair and watched – almost in awe – as she lowered herself to the ground again and started shouting for help.

I got her back up again, helped her hold her walker and suggested we go back to the lounge as this was obviously not working out.

We passed a member of staff and mum smiled brightly and told them she would see them soon.  We passed another resident in their room and she did that happy smile and a wave.

We were part way to the lounge when Mum stopped,  looked at me and told me that she didn’t like me, didn’t want me there, had lots of other people who would come and visit so actually she didn’t even need me.

She then propelled her walker down the hallway, looked at the walker, at me and asked me what I was going to do about that.  As the woman clearly had the strength to get herself from a chair to the floor, do a fair bit of shouting and push away the support I’d thought she needed to walk, I suggested she go and get it.  Which she did (using the wall rails as support…I’m not suggesting there was some sort of miracle here 😬).

And then a member of staff walked towards us and Mum burst into tears and told them I was being so, so horrible to her.  I gave up.  I asked the member of staff to look after her and left.

And that is the reality of how Mum can be.  Not always.  Sometimes she can be lovely, or just a bit tricky.  But sometimes she can be nasty.

She is always absolutely lovely to care staff.  She is always absolutely lovely to friends.  She knows the difference between us and the ones she is always nice to (Sister 1 and 2 have suggested we get tunics like the care staff for when we visit as she might be nicer to us if she doesn’t realise we are her daughters).  And while I think we’d all prefer it was us that got the tough bits, that’s the bit that’s hardest to deal with.

So, top tips for anyone not in this situation right now (and recognising that this is based entirely on my own experience, thoughts and feelings – I’m obviously not an actual expert):

• Do not tell the family of someone with dementia that it is a terrible disease, and they don’t mean any nastiness; they just can’t help it.  Please see above.
• Do not tell the family that they are nasty to you because you are ‘safe’ to let out those feelings to as though that makes it ok.
• Know that the only thing harder than managing this situation is the expectation of others that as it is a disease, it is reasonable to put up with behaviour that in any other circumstance would not be tolerated.
• Please know that even if ‘it’s not them, it’s the disease’, it is really, really hard to keep going back into that situation, while simultaneously taking a huge amount of time trying to work out the admin and the finances and the medical things to make sure that person is cared for in the best possible way, even while they tell everyone how horrible you are.

And, if you are in a similar situation reading this (and again,  recognising that this is based entirely on my own experience, thoughts and feelings – I’m obviously not an actual expert):

• I see you.
• The shit days are shit.
• Some of the good days contain a fair bit of shit too.
• It’s ok to walk away.
• If the person is in their or your home, it is ok to insist (not ask) on more care support to give you more space.
• If the person is in a care home, it’s ok not to visit for a while (I won’t be).
• And I’m sorry that you’re having this experience too.

And that is my bit of honesty.  Normal smiles will resume shortly 🙂