me, my dad and dementia – a seatbelt for my mouth

Well dear reader…this one will not be easy to digest.  I suggest you think long and hard before you read it and if you do choose to read it, grab someone you love and hug them before and after.  here goes….

The other morning, my father announced that he wanted to quit the choirs before he was no longer “good at it”.  Yes, this is the thing he loves most in life.  
A few days earlier, he had gone for a long walk (without his boots or cane) thinking it would be good to just walk until he dies.  Normally, he loves going for walks.
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My husband talked to him (a lot) about his desire to quit the choirs and couldn’t get more of a reason out of him other than “before I’m no longer somewhat decent at it”.

I finally went over to chat with him about something else and he of course hit me with “I want to quit” plus “you know I’m getting too old” and “I will die inevitably”.   How does one address any of this?  Especially a daughter with whom he lives and has worked with for the last 30 years. 

I couldn’t persuade him for love nor money.  I pointed out that there is no reason to die well ahead of your death and “why not keep living until you die” and “why not keep doing what brings you joy” and “why not choose happiness” and “the people around you know and love you – they are happy you are there”. etc etc.  To no avail.  (although “love” almost worked….I played the “do it for me” card and he agreed but it bugged me that he wasn’t doing it for him….and there’s the human in me…more to come on that…..)

I pointed out that I could be hit by a bus tomorrow but that possibility shouldn’t preclude me from living life fully until that moment.  He didn’t care.  I pointed out that many others in the world meet their end at completely unforeseen times and many also know when their end is arriving and yet choose life until they end.  It didn’t matter to him.

And that’s when I made the brutal and deeply regrettable choice to yell, to lecture and to threaten.  It worked.  But I regret it with every fibre of my being.  And I cannot do it ever again.  I will not.  
I completely and totally understand that he needs to feel how he needs to feel.  He is grieving the loss of his memory afterall.  The loss of himself.  He should be allowed to feel what he needs to feel.  He absolutely needs to mourn.  And I have told him that repeatedly.  But repeatedly no longer matters.  In fact, “repeatedly” is now my bane, not his.   And so I resorted to something more base, something more vile, something perhaps unforgiveable.

I yelled.  Yes, many words of love – but in a very loud fashion.
I lectured.  He pointed it out to me and asked me not to lecture him.  Point taken.
I threatened.  We had just had a talk about possibly moving him to a care facility some day….that talk was about 2 weeks ago….and he wanted me to know, at the time, that I was in charge and he was totally fine with me doing what I needed to do.  So I threatened him with moving him into a care facility if he intended to just sit around being a recluse hoping for death.  Hit him with something shocking.  He was appalled by the way and yes, he had a right to be.  shit.   

And that was my breaking point.  I will never do that to him again.  I just can’t.  This is where dementia blurs the lines in inhumane ways.  I hate the disease.  But I love him.  I blame the disease but I must not blame him.  Is he making choices?  no, not really.  Is the disease speaking for him?  yup, probably.

He’s always been a loner.  He’s not a social butterfly.  He loves music.  He loves singing.  And I have seen, over the years, his love of people around him.  He spent a ton of his life working in a field that helped others.  He used to love visiting with people.  So what is he now?  And does that even matter?  Stupid dementia!  I hate you dementia!!!  I just hate you…….

 

But I love my father.  And I must distinguish between his disease and him.  And I must also figure out how to be a good and decent person.  So, I will never ever again yell or lecture or threaten.   I cannot.  And yet, for me….the question remains….how do I get him to participate in life and enjoy music and other people?  
I honestly don’t know. 

And there it is.  A hard read.  I’m sorry.  But on a much happier note….my Dad LOVED Cleopatra’s rendition of Jingle Bells the other night!  Just loved it and can’t wait to hear more swing stuff – how cool is that?!

UPDATE:  He tried to quit everything again 2 weeks ago on the spot, and I inmediately agreed to let him.  Later when I checked in with him, he denied saying he wanted to quit but rather that he just wanted me to be aware that someday soon he would have to quit since he is no longer the singer he once was.

And since then, he’s been great!  We’ll see what dementia throws at him next but in the meantime, I will be there to fight for what Eric wants and needs and not what dementia dictates.