Days like these

I like to think that I have my life planned out and that every morning I’m ready to roll. That’s the plan.  It is, of course, all in my head and whatever I might have planned in there rarely pans out that way in reality.

Sometimes it’s because something exciting turns up and the essentials are done to allow me time to do something fun for a while.

Sometimes it’s because I’m so tired and/or utterly fed up that I decide everything can wait until tomorrow.

Sometimes, as is the case today, it’s because my mum’s life dominates things.

My mum is 92 years old, has severe Alzheimer’s Disease and is in a dementia-specialist care home 250 miles away from where I live.  She has had Alzheimer’s Disease for 20 years that we are aware of and it has steadily and relentlessly engulfed Mum during those years.

My mum’s life dominates things because, when things happen with her care I jump into action – immediately.  I’ve yet to decide whether it’s from a sense of guilt and my Catholic upbringing; a sense of compassion because I know that Mum wouldn’t want anyone to have to look after her like this; or whether it is from a sense of administrative duty – “this needs doing, I can do it, I will do it”.

Or maybe it’s all three that kick in simply because I love my mum and would do anything to stop her suffering.

Whatever the reason or reasons, today is one of those days.

I’ve been talking to all sorts of people, gathering information and trying to understand what is going on with my mum’s care.

The staff at the home all love Mum and care for her in a way that everyone who needs help should be treated and they’re trying their best to manage Mum’s wellbeing.  The NHS In-Reach department are trying to help Mum live a decent life by weaning her off some of her medication – what people call a “chemical cosh”.

Things were going well with the medication being very gradually reduced but now that she is off it completely, things aren’t going so well.  Pregabalin is a very powerful and at the same time, destructive medication and it’s probably still in her system.  It’s probably why she has become aggressive again and they’re all hoping that once the medication is completely out of her system she’ll be better.

The trouble is that she started on Pregabalin BECAUSE she was being aggressive and it worked to keep her safe from her own behaviour and it helped the other residents and staff too.  Mum might only be just over five feet tall but she’s very strong when she wants to be.  Pregabalin, in a low dose, works well for my mum.  Having reduced the dose she calmed down even more and started to engage with other people and things happening around her.  She even started reading to others again.  Staff were able to take Mum to church again and most recently, to Mass, something she has always enjoyed.  I’d be happy for her to continue with the low dose ad infinitum because it has given her some semblance of life again.

However, today I was told that the guidelines say that there is a requirement for her (and others) to stop taking it completely because it could kill her.

I snapped back “She’s 92 years old!” and I shocked myself when I said it.

My mind is in turmoil because I want Mum to live a good life but she has Alzheimer’s disease.  I want her to live a life where she remembers me and also where she remembers my dad and the life they once had, but she has Alzheimer’s Disease.  I want her to stop being violent to other people because that was never her way, but she has Alzheimer’s Disease.  And, I want her to die because she has Alzheimer’s Disease.

And here’s the thing, she doesn’t have Alzheimer’s Disease; IT has HER.  It had Dad too.  It has me.  And my husband.  It even has my cat.  Not in any actual or medical sense for the rest of us but it affects our lives completely.  It affected Dad by robbing him and Mum of the final years of their lives together; Dad died a broken and beaten man. It’s affecting me on a practical and also an emotional level – it never, ever goes away; not for one day. And it affected my husband because there is always a part of me that belongs to my mum’s Alzheimer’s Disease rather than to us and our lives.  It is ALWAYS there.

No wonder I’m so tired and in pain all the time.  No wonder there are so many people who are feeling the same way – utterly exhausted and seemingly incapable of advancing with anything meaningful in their lives.

Alzheimer’s Disease kills people who can’t physically or emotionally take any more.  It saps the life out of those whose loved ones have it.  It invades the lives of those whose loved ones are having the life sapped out of them.

But, in Mum’s case it isn’t killing her, not physically.  I can’t speak for her emotions because I can no longer find them.  And as for her soul – – – I can’t begin to imagine what’s happening.  All I can do is pray that it is keeping them both safe.  Safe until the day Mum is set free from it.  Until the day when we are all set free from it.