Butterflies.....

Nana has Alzheimer's Disease and we can see it progressively getting worse.  Her memory is now very short term (probably less than 10 minutes on some days).  Because we have a young family and Nana and Pops live about 10 miles away, we can't pop in easily to see them.  10 miles isn't really that far but, when you have a baby who still naps and a school run either end of the day plus tired and grumpy children after 4pm, it makes it hard to visit during the week.  It's an understatement to also say that their house isn't really suitable for a young toddler.

We are now experiencing one of the additional challenges of having a family later in life as life becomes more challenging for Nana and Pops yet our time is limited because of our childcare responsibilities and routines.  Also having adopted children complicates the situation because routine is important for our family's well being.  Pops is Nana's primary carer but his health isn't fantastic either.  He is now 10 years post a double lung transplant and his recent hospitalisation for heart failure has left him weaker then he was before.  He admitted to us that he was finding it difficult to cope now so some action is required.

The disease is stripping away Nana's personality as well as her memory.  Nana has always had an edge to her personality but she was able to monitor what she said (mostly).  That has now been eradicated and Nana is often very similar to Katie from the perspective of emotional development and literacy.  It's incredibly sad to see this happening and also incredibly difficult to manage because she is now very child-like.  What's making the situation harder from our perspective is that Nana seems to focus all her negative behaviour on Katie.

Katie is a child who finds it hard to accept our authority at times.  She is strong willed and wants to do what she wants to do.  A fairly typical 6 year old in many ways but there is a bit more to it with Katie I think.  At this age they are pushing every boundary they can find and challenging the authority of their parents in mostly obvious and unimaginative ways like shouting and refusing to do what they've been asked.  Add to this the fact that Katie finds it hard to sit still for long and isn't that fussed about eating.  Imagine our dinner table at meals times with that information in mind.  It's been a challenge, it's fair to say.  Nana can no longer understand how we manage Katie at the table so spends an entire meal when we get together glaring at Katie saying things like....

"Can't you sit still"

"Will you just eat your dinner"

"Oh for goodness sake"

"Oh I'm going home if you can't behave"

These are fair points in the general sense.  Nana comes from a generation where children were seen and not heard and it must be strange for her to see us seemingly ignoring unacceptable behaviour.  I often feel the same about Katie's behaviour at meal times but we have a strategy in place that works for us however Nana forgets that she's said these things and repeats them over and over again.  It's incredibly stressful and I'm strung as tightly as an elastic band by the time Nana goes home.

Katie responds to these comments with defiance.  It makes her behaviour worse.  She doesn't like being told off by Nana so intensifies what she's doing and will answer back.  This obviously exacerbates the situation.  I feel my stress levels rising because I'm not going to allow Katie to feel bullied in her own home but if I say anything to Nana a) it's a moot point because she'll forget in 5 minutes and say it again and b) she's likely to stomp off and put her coat on to go home.  I do intervene though if I think things are going too far, which generally makes me public enemy No 1! 

We've tried rearranging the seating so that Nana isn't in Katie's line of vision during mealtime but I do think Katie tries to goad her a little so that hasn't really worked either.  She'll mess about and climb up and down her chair and generally do everything she can to gain attention.  A sensible person might say to avoid having meals together but there is also Pops to consider.  Why should he have to miss out on one of our wonderful meals too?  That feels very unfair to him.  What makes the situation even worse is that Nana idolises Pip and he can do no wrong.  One thing I did try with some success this weekend was to ignore the fact that Nana put her coat on.  We just carried on as if nothing had happened - a bit like we do with Katie when turning our back and ignoring unacceptable behaviour.  Eventually (and sadly) she forgot why she was wearing her coat and took it off again and re-engaged with us. This happened twice more but it did seem to work and I think we'll try this again on the next visit.

A difficult incident happened recently on Nana's birthday when me and the children went to visit with a present and birthday cake.  Whilst we were there Katie was playing with one of those collapsible toy donkeys. Nana said that Katie could keep the donkey so Katie was really happy and excited.  About 15 minutes later as we were getting ready to leave Katie went to pick up the donkey to take home and Nana virtually accused her of stealing it.  Katie was totally confused and upset.  When it became clear that Nana wasn't going to allow Katie to take the donkey I delicately tried to intervene and explained to Nana that she had said that Katie could keep the donkey a short while earlier.  Nana then got really cross and turned her back and refused to speak to anyone.  We had to leave minus the donkey (although Pops has since brought the donkey over to Katie hidden in a bag of sweets, bless him).

I've been trying to explain to Katie about Alzheimer's Disease.  It's hard to help her really understand it though.  She just sees that Nana is being mean to her and that she feels hurt and upset.  I obviously want to protect Katie from feelings of being rejected.  I feel she's going to potentially have enough of those feelings to overcome as she gets older depending on how she feels about being adopted as time goes by.  I downloaded a book called Grandma Rose: A story for children about Alzheimer's by Jocelyne Pouliot and read it with Katie.  It is a simple book that explains Alzheimer's impact on the brain behind the forehead that effects personality and memory and compares this gradual decline like a rose petal slowly losing its petals.  It's emotional and I had to read it alone and have a good cry in the bathroom before feeling able to read it to Katie without crying again.

We've also played memory games to try and empathise with Nana.  I tell Katie something I am wearing and she has to remember what I said when I ask her the question "What am I wearing?" later in the day.  I explain to her that Nana wouldn't be able to play this game because she wouldn't remember what I was wearing.

At bedtime after reading the book Katie said to me that she doesn't understand Alzheimer's and could I explain it again please.  I thought for a moment and said that I think that our memory is a bit like a butterfly that lands on our head.  We are able to hold onto the memory of the butterfly but for Nana the butterfly flies away taking the memory with it.  Katie liked this analogy and it seems to have helped her a understand it all a little better.

Alzheimer's is a sad and cruel and debilitating disease. It's painful to watch the person you know slowly being eroded.  It's horrible to watch the memories fade and be unable to help.  Nana still knows who we are at the moment but that will change.  The hard thing is that Nana doesn't realise that she is unwell because she doesn't remember when you tell her what has happened to her.  I've explained about Alzheimer's to her on several occasions and tried to empathise with how scary it must feel but the conversation flits away as soon as we've had it.  Pops is now finding caring for Nana more challenging and it must be awful to be on the receiving end of constantly difficult and challenging behaviour particularly when you aren't well yourself.  It must be awful to watch your marriage disintegrating at a time in your life when companionship means everything.  I feel sad for TCM who has realised he will never have his mother back as she was again and I think it will be a slow mourning process for him.  Unfortuntately we cannot have Nana to live with us with the children around.  I think it would be too damaging for everyone so we are looking at care arrangements (made more difficult because Pops cancelled the nurses I had going into Nana when he was in hospital!) to help out at home.  The GP has been brilliant and are taking our concerns seriously.  I have asked for a medicines review to assess the level of morphine she is taking for osteoarthritis with a painful curvature of the spine.  The morphine exacerbates her confusion unfortunately so a balance of her medication is vital.  This review has been undertaken and her morphine doseage reduced.  I am also going to contact the Alzheimer's Society to see what information and support they are able to offer our family to help maintain Nana's life and dignity for as long as we are able to but there's an inevitability as to how long Nana will be able to remain at home.  

I would be very grateful for any tips and advice from any readers who have experienced this illness within their own family.  Please comment below or contact me via email at threebecomefour@gmail.com.