What the heart remembers

I clearly remember the day I got a phone call from mum and dad’s lovely next-door neighbour.  He said “I’ve helped your dad up off the floor; I don’t think he can walk”.  He was right.  Dad had another big stroke, and within a week he was in hospital-level care in a rest home.  Mum followed shortly afterwards into the dementia unit, as living at home with us just didn’t work. 

This was not part of the game plan; mum and dad were supposed to live happily at home forever.  What also wasn’t in my plan was due to the out-dated health system, they were unable to live together, even though they were just down the corridor from each other.  

Dad lost the love of his life.

When Dad first moved into the rest home he sang manically, almost non-stop for days.  It felt like it was his way of soothing his soul, of finding something familiar within a world that had been turned upside down.  He only stopped when his voice became weak and coarse.  

He then constantly asked “where’s Rosie?”.  Our age-old answer “she’s at the club” that always pacified him, no longer worked as well.  The staff were amazing and almost on a daily basis ensured mum and dad saw each other.  But dad regularly asking me “why can’t I stay with Rosie?” hurt my heart. 

I had never cried so much in all my life.  I felt like I’d failed them both, and I especially couldn’t give the emotional support dad needed; I couldn’t ease his grief, anxiety and loss. 

After some time, dad started to withdraw; he engaged less with the world and those around him.  It felt like dad realised that his ‘Rosebud’ was no longer a part of his life, and I think he became depressed.  And his vascular dementia progressed to the point where his personality changed. He became angry, frustrated and anxious, and he occasionally hit staff.  I sometimes barely recognised my dad who had always been a gentle, calm and peaceful soul.  Again, my heart hurt.

The lessons I learnt from dad only transpired after he passed away. 

Dad exquisitely showed me that all the brain changes in the world will never ever take away a person’s ability to feel.  To feel love, joy, heartache, loss and grief, sadness, fear and anger.  Just because someone may not remember what happened yesterday, does not mean they do not remember how they feel.  I truly believe that a person with dementia remembers what the heart remembers. 

Dad also taught me that sometimes emotional turmoil, coupled with brain changes, can be so tumultuous that all the person-centred strategies and care in the world don’t always make the big difference we hope for.   I admit this sounds like I’m saying it’s easier to give up trying.  But what I’m actually trying to say is; never stop giving compassion and aroha to people living with dementia.  But be kind to yourself and accept the brain changes can be incredibly complex and difficult, and know that you are never a failure. 

Even through all the pain and anguish, I would do it all over again.  Thank you, dad, for teaching me so much through your journey with dementia.