Two Hard Days

The last two days have been very difficult.  My mother had a prolonged period of forgetting that I was her daughter, that the flat we were living in was her home and that she was Beryl Heather Merrick.  At one point she left the flat and wandering around Thetford with me following at a discrete distance.  In the end she stopped in a car park and told me that she would accept my offer to go home to my house for the time being.  In the end I asked her friend Keith to come over to see if we could remind her of who she was and where she was.  It worked to an extent but all through today she continued to act as if she were just a guest in her own home.  

One of the things I did learn this afternoon, when her friends Keith and Margo came over for tea was that this disassociation with who she is has been going on for more than a year.  Somehow I missed it and unfortunately, Keith who spent most time with her, never mentioned it.  If I had known I might have acted differently and she might be in a care home by now.  Ah well, no point dwelling on the past.  

I suppose that the important part of tough days is making sure that you learn from them.  Every day of this journey with my mother reinforces my conviction not to let this happen to my family.  I will go into care when the time is right with no complaints or arguments against.  I will start planning now for the next 10 to 20 years.  I will enjoy my present life for as long as I can but also look forward to the future with optimism.  In the meanwhile, I need a few jokes and funny stories to give me a laugh or two each day.

Still Trying to Find My Way Around Dementia

My mother and I have had a difficult 5 weeks.  I have been frustrated beyond belief and very stressed.  I haven't been as nice as I could have to her.  I've been angry with her.  When I'm not angry, she asks me why I am being nice.  That's a telling comment and one I am not proud of.  My oldest daughter tells me I should go with the flow but sometimes that is so difficult.  However I am beginning to learn how to do that in my own way. 

Today, GB waned to iron.  First I let her hunt for the iron and when she couldn't find it, I did.  I didn't offer to help initially because she wants to prove that she can do things herself.  I held my breath and hoped she didn't find the wall socket.  She didn't but she did come to collect water to put in the iron.  I had better remember to pour that out.  Then I suggested she get the ironing board.  In the end she gave it all up and moved on to putting new shoe laces in her trainers.  I learned from this.  Let her try to do things but don't offer help, keep an eye on her to make sure she doesn't injure herself, and let her feel some sense of accomplishment.  It amazed me that she wasn't frustrated by the difficulties she encountered.  She just moved on or went to sleep for a while.

So much damage

One of the things I have learned from being with my mother at this time, is that dementia harms more than just the person who has it.  And oh, how it damages them!  My mother's dementia probably started as long time ago as 10 or 15 years; and so much of what we have taken for granted about her for all this time was probably the result of the dementia unrecognised.  I can remember saying to people that my mother seemed to have lost a lot of her filters and put it down to growing older and being less willing to be tolerant.  She used racist language that I would never have heard from her when she was younger.  Moreover, she became far more critical of both family and friends, and people she encountered in the street.  If she felt someone was over weight, she said something about it and sometimes, she was quite cruel.  It seemed that those thoughts she would once have kept to herself, were now to be spoken aloud.

I have heard that a number of her grand children have been quite upset by her words and actions.  I don't think the she will ever have the opportunity to mend these relationships.  It is even possible that she forgets who they are as she has forgotten me.  However, perhaps one day they will come to understand that it was all part of the dementia and that she would be devastated if she realised what she had done.

Again it's been a long time

The title says it all and I won't add to that.  I have picked this blog up again because it seems to do me a lot of good writing here in times of stress.  I started it originally as a way of communicating with friends and family when I was diagnosed with cancer in 2006.  Now I think I will be using it to help me cope with living with my mother, who has dementia, during the  Covid-19 lockdown.

It has been very difficult.  I think that is one of the biggest understatements I have ever made.  I have even lost track of how long I have been here. I arrived in Thetford just days prior to the lockdown in late March when my mother's part-time carer had to self-isolate due to illness in the family.  I am still here and likely to be so for at least another 3 weeks.