Our Mums

I spent the whole day with my mum today. 

It was horrible. 

See, even as I type that word I feel guilty about it.

No-one died (came close to being a murder a few times). Yes, we all still have our limbs. No kittens were sacrificed.  So on the scale of 'horrible things that could happen', it was on the low end in the world scheme of things. 

But for me, it was horrible. It was tough. Frustrating. Infuriating. Emotional. I had trouble getting my mind around some things she said and did. I had trouble finding my compassion and by the end of the day, finding my patience. I wanted it to end. And I felt guilty all day for wanting it to end.

If you don't know, my mum has dementia.  This disease sucks because it seems to present differently with each person and, in my experience, the degrees in which it presents can change hourly. It steals some of her long term memories some days and replaces them with others on other days. Sometimes she forgets something the moment she's asked it. Other times, particularly when challenged it seems, she can completely remember an entire conversation.  It causes her to ask the same question or tell the same story over and over again. I heard 'there use to be koalas in all these trees' and 'can I have a cigarette now' about 57 times today...said like they were never said before, with no recollection of it the second time around. 

Our entire 9 hours felt driven by her addictions. Every hour I argued with her about something she wanted then and there (usually a cigarette) or I had to remind her that she had already had whatever it was she wanted. My mum has always had an addictive streak. She loved to gamble and there were many nights in our lives as kids where she left us to go gamble (along with my father). Together they lost hundreds of thousands of dollars....they lost our home, their businesses, our entire inheritance and my mum, just like my dad, will die penniless wondering how her life came to this. She wonders that question out loud all the time and now, with her disease, there's no point even telling her the truth. She won't believe any of us. According to her, everyone else did all those things...not her. 

She has become the ultimate victim. 

If you know these five things about my mum you will know who she is right now. 

1. She loves to smoke and would most likely give up her firstborn for a cigarette (sorry bout your luck Ali). 

2,3,4. She is now also wildly addicted to mentos, lip balm and farmers union iced coffee. If she doesn't have those on her at all times, she freaks the fuck out. 

5. She constantly complains about how lonely she is and how she never sees anyone and no one ever talks to her. She will tell me that tomorrow even though I spent 9 heartbreaking hours with her today...and I'm pretty sure she didn't ask me one question all day. 

It fucking sucks. 

The biggest reason it sucks? 

It's not her. 

Oh don't get me wrong, she's always been narcissistic, needy and had a whopping gambling/iced coffee/smoking addiction but at least she used to have a sense of humor about it. She used to be cheeky and witty and would always have a joke about something. (Mostly dumb jokes but, ya know). She would play the fool for the laugh (her favorite thing to do when I was a kid was play 52 card pick up - she would throw a pack of cards in the air and then tell us kids to pick them all up). She would always be up for an adventure. (She flew over to see me in the US when she was 70 and got off the plane physically devastated because it's the longest amount of time, since she was a teenager, that she went without a cigarette. But she was ready to see my life and meet my friends.)

This week, the only smile I got out of her was this morning when I finally gave in to her begging me for her second cigarette in 15 minutes. She clapped her hands together like a little kid, did this weird tongue poking out thing and smiled a big smile. 

It really hurt my heart. 

She didn't smile when she saw me for the first time in a year. 

She cried and told me she was lonely. 

She didn't smile when I told her we were going to the zoo (once, her favorite place).

She asked me how often she could smoke. 

She didn't even smile the night the whole family was together (sans one, who was in Bali, so no sympathy for him).

She told me how no one comes to see her and she hasn't seen my sister & brother in months (Not true) and then sat and stared into space for the whole night answering questions with one word answers and not willing to engage in anything, but smoking.

It feels like it has come down to this:

She only smiles when she can have a cigarette. 

I don't like this new person. This kid that I have to parent. She's mean and has tantrums if she doesn't get what she wants, when she wants it. She told me 4 times today to 'grow up' and 'stop being childish' when I wouldn't give her a cigarette every time she asked. (Back story: she gets 9 smokes a day. Last week when she stayed with us over night and I just gave her the cigarettes, thinking 'it makes her happy, why not'....she smoked 40. I was schooled today by her carer that It's really hard for her 'habit' if she smokes 40 one day, and 9 the next. Makes sense.)

I look at her now and grieve again for who she once was. To know that Jamie will never know her as she was, only who she is now. I know we have stories to share but you know, it's never the same as experiencing the person first hand.

I also am very aware that I come on here once a year for a few weeks and I call her almost weekly but my brother & sister are here all the time. My brother gently laughed at me today as I talked with him about it and said 'welcome to my life'.

I have some thought process that I am working through around how our old people 'go out'. The fact that my mum has this disease that has eaten away her personality and replaced her with a blank staring, non conversational, whiny individual who is just not pleasant to be around, just doesn't seem right. There's no celebration of her life, or her adventures, her lovers, her career, her kids, or her grand kids. The sum of life now has been reduced to cigarettes, mentos, lip balm & iced coffee. 

She looked at me blankly through her now pale pale blue eyes today and said;  'I never thought my life would end like this.' 

And all I could say is, 'I know. Me neither Mum, me neither.' 

Crushed.