Days Like These – an update

It’s been three weeks since my first post on this subject and today I got a long awaited update.  It’s pretty good as it turns out; Mum is doing much better with far fewer episodes of being difficult.  She’s been off the Pregabalin for a while but they reckon that there’s still quite a bit of it yet to leave in her system.

Still, Mum is engaging with people once more and as long as she has the option of squirrelling herself away somewhere when there is too much going on, she’s quite happy.

She’ll be having a review next week which I’m hoping I’ll be part of so it would seem that things are on a bit of an even keel again.  For a while anyway!

Once more I’m hopeful about things with regard to Mum’s wellbeing and once more I feel I have the space and time to get on with my life.  This is the thing with Alzheimer’s it’s always lurking there in the background despite your belief that everything is working out as it should again.

Unbeknownst to my conscious brain, my subconscious is always on alert for the next episode with that underlying and subtle sense of unease that always seems to be present.  An ever present thought that there’s no point in starting anything or forging ahead with getting my life on track again.

Strangely I’m not feeling angry about that anymore despite it also being a memory from my childhood – the persistent refrains “Don’t do that now, dinner’s almost ready” or “Don’t do it there I’ll be needing the table in a minute” or “Put that lot away; look, it’s everywhere!”.  

It’s only the details that are different; the protagonist and the outcomes are the same though.  Something that Mum does causes me to put everything on hold.  I used to resent it hugely but now it’s just another instance of the same old thing.  It causes me to procrastinate all the time – putting off starting something for weeks, months, even years – but then when I do start some project or other, finding it almost impossible to complete it for some spurious reason or other.

I’ve so many ideas just hanging around waiting for me to begin again and my intention is there to start them one day.  Honestly!  I just have to find the right way of getting through the backlog and sorting what goes on the “must do” or the “ought to do” list or the “bin/file/shred” list.  Ahh, and there I go again; another way of procrastinating!

There must be a solution for me somewhere.  I’ve started with the acceptance of things being what they are; isn’t that enough?  Shouldn’t it all start falling into place now?

No?  No.  No, you’re quite right.  I’ve got such a long way to go yet – discovering me once more; trusting myself and my intuition; strengthening my intuition in the first place; allowing myself to be educated in profound subjects as well as trivia; kicking social media into the gutter; having the courage to say no when I need to; reconnecting with those who mean the most to me and, – probably the biggest hurdle for me – letting go of the pain and regret of the past, the grief of loss in all its forms and, bit by bit giving up the destructive need to hang onto things that no longer have any relevance or joy for me.

It would seem that after all these years, both Mum and I have reached our goals in life and who would have thought that they’d actually be so similar:      the need to be part of a supportive and safe community that supports our respective need for space & peace; to know that our loved ones love us; and the freedom to follow our own thoughts & desires.  And all of that pursued without feeling guilty because we’ve put ourselves first or the thought that someone else’s needs are more important than our own.

Imagine the audacity of living a life that way.  Sounds good to me!



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.