jmgoyder

wings and things

Still Anthony

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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12 days old

Today I finally got to meet my niece’s baby. She and her husband are now the proud parents of a beautiful little boy and I am, for the second time, a proud great auntie.

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He is 12 days old. Welcome, little one, to the world.

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Grief

Tonight I am in a state of such grief about Anthony that it is as if my eyes are inventing tears over and over again. I know he is cared for, and popular with staff, and I know he has gotten over his terrible fear of the hoist but of course I still worry.

Mostly I can manage the grief, but sometimes I just have to succumb to it by crying and crying and crying until I, once again, reach a point of acceptance, and the anticipation of tomorrow when I will see Anthony again.

Ming and I talked about it tonight – this grief thing – but we were unable to come to an agreement about how to cope. We both love Anthony so much; we both feel guilty to have placed him in the nursing home; but we are also happy that neither of us has the burden of care anymore.

We can just love Anthony now and that’s what I said to Ming tonight. But the grief is potent and present and debilitating.

I just hope that Anthony knows how much I love him, even when he forgets who I am.

Grief has gutted me lately, but it’s not going to win!

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Paperwork phobia

I have a bit of a paperwork phobia.

I don’t go to the post office anymore because it is too scary. Ming usually collects the mail on his way home and brings it to me in my writing room. I politely thank him or else say:

TAKE IT AWAY, TAKE IT AWAY, TAKE IT AWAY – JUST EAT IT!

I don’t quite know why I have this phobia because most of these letters are relatively harmless, even innocuous, and I pay most of the bills online because I don’t have an email phobia (luckily). It would be good to admit that my paperwork phobia was due to my objection to so many trees being cut down to create all of this mail but, even though I agree with myself here, it’s not that. It’s more to do with the envelopes and what might be inside them.

So the letter(s) sit on my desk briefly, threateningly, until I throw carefully place them, unopened, into the box of things-to-do.

Once the box is full, I take it to the nursing home and place it on Anthony’s bed. We hug and I explain it is a ‘paperwork day’ and that I need his moral support. It is only then that I have the courage to open all of the envelopes, file anything important and trash the rest. This usually takes about 10 minutes.

Okay so this is a bit tongue-in-cheek but also very true. I literally can’t seem to do the paperwork unless Anthony is by my side and, once it’s done, I am so happy that I get a bit frolicky and this gets a smile.

I also have a bit of a phone phobia ….

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The enormous power of humour

There are all sort of theories out there that encourage people to combat their despair, depression, and personal tragedies, with positive strategies and tips. Many of these theories and tips are extremely helpful. In fact there are probably more resources now than ever before and it can be a confusing array for someone who is in despair. Nevertheless, despair is despair is despair and I have found, within my own ongoing situation with Anthony’s Parkinson’s disease and other situations (which we all have), that accepting these moments of despair is much more useful than trying to frolic them away on the back of platitudinous clouds. Clouds wouldn’t be clouds if they were constantly shot through with those over-heated parasites of despair. Don’t get me wrong; I am not in despair but it does have a habit of visiting me unexpectedly from time to time and last week it became such a pest that I had to politely ask it to leave. And, hey presto – whatever that means – it was gone! Okay I have my nouns, verbs and metaphors a bit mixed up but what the hell; I don’t teach at the university any more so, as far as I’m concerned, my sentences can do what they want. And the point of this post? The enormous power of humour. Ming, Ants, Meg and I watched our favourite comedy series this week and, even though Anthony’s ability to laugh loudly like he used to, has gone, there were a lot of smiles. The despair left the room with its tail between its legs and, next time it decides to pay a visit I will be armed and ready – with laughter! There is so much more I could say about this but I will save it for another post because it can be quite exhausting laughing despair away!

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Anthony’s room

Every day I look forward to going in to the nursing home to be with Anthony. His room has now become home to me; Ming throws his big self onto the bed, my mother knits, friends and relatives visit us here, and staff are welcoming with cups of tea and jokes. I love being in this room.

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