It’s life, Jim, but not as we know it, not as we know it…

August 21, 2009 at 9:00 am (Uncategorized)

I finally located Nana this afternoon after repeatedly missing her in her room today. I eventually called the main Crowley number, and they put me through to the duty nurse’s desk in Nana’s wing. Nana wasn’t terribly impressed by the news she had a call – apparently I’d interrupted her soup.

“What sort of soup?” I wanted to know.

“All different sorts,” she said, and that really set the tone for the rest of the conversation.

“What have you been up to today?”

“Oh, I’ve got things,” she said. “I’ve got some… some nice things in my room, actually. I have a nice thing on my bed.”

“The bedspread?”

“Yes. It looks very good.”

“I’m sure it does,” I said.

“You’ll have to wait to see it when you come.”

“I’m afraid I will.”

“I’m stepping out to come and see you shortly,” she said briskly. “I was planning to come in a little while. I was just on my way out.”

As Nana said this, I realised there was another, largely subconscious reason I’ve been putting off calling: it feels terrible telling her that actually, no, that’s not possible. It’s the same thing every time and it makes you feel like a mongrel.

“Oh,” I said, “that would be so lovely, Nana, but I don’t think that’s possible. I’m a bit far away.”

“Are you?”

“Well, it’s a plane ride.”
“Is it?” Always the same genuine surprise. It’s gutting having this conversation over and over again. “I didn’t think it was so far.”

“I’m all the way down in Manly.”

“Oh,” she said. “But you’re not always there, are you? You don’t live there all the time, do you?”

I paused, trying to figure out what she was talking about before answering. I had nothing.

“You’re not thinking of Kate’s, are you?” I ventured at last.

“No, I know where Kate’s is,” she said tartly. “I was thinking… some place…”

“I wonder what it is you’re thinking of,” I said (sincerely). “We only live here. We’ve lived here for four and a half years now.”

“I was thinking about the other place,” Nana said, her voice drifting. “I was thinking of where you live, actually.”

I decided to try to change topic.

“So how’s the social scene?”
“They’re not very bright,” she said.

I laughed.

“Not sharp enough for you, Nana?”

“No,” she said, “but it’ll get better. They’ll improve. There’s… things, there’s… equipment here, but I don’t really use it. A toaster. This thing says line 2 and conference and office.”

“The phone? You’re used to your own phone, aren’t you, and it doesn’t have any of that confusing stuff on it.”

“No, it doesn’t.”

“Have you seen Kate?”
“Last week, yes, this week, no.”

She sounded so definite that for a moment there, I almost believed she knew the difference. But I’ve since spoken to Kate, and she did visit this week. It’s Nana’s default response to tell me Kate hasn’t visited; the heartbreaking thing is I honestly think it’s an instinctive strategy to get me to visit as well. Maybe I’ll come instead, goes the logic (I think), if she says Kate hasn’t been in. Nana just has no idea how far away I am. None. Anyway, I told her about work, and IVF (“What’s that?” she said sharply ), and Llew trying to get a laptop from work so he can at least avoid the office of a weekend (“Yes,” she said. “I agree he should…do the thing he … wants to do.”), and a rush of bits and pieces of news.

“Well,” she said, “I really want to see you.”

“I know, Nana. I’d love to see you, too. I’m just so far away. We’ll have to do better. We’ll have to put our heads together and come up with a plan.”

“I suppose I should be going,” she said vaguely. “I have things to do, too.”

“Yes,” I said. “Like finish your soup. Sorry I interrupted.”

“People are laughing and talking,” she said. “And it says line 2. Conference.”

Hmmm.

“Um, well, maybe I’ll catch you in your room next time so you can use your regular phone.”

“I’d best be off,” she said.

“Okay, Nana. I hope your soup’s not gone cold.”

“Oh,” she said. “I finished that while I was doing the other thing.”

“You finished it? That’s my girl.”

“Love to Llewie.”

“I will give Llewie a big kiss from you.”

“And love to you, pet.”

“Lots of love to you, Nana.”

“Okay,” she said. “Bye for now.”

And she rang off.

Boy, she was having a lot of problems with thought and sentence completion today. And the vocabulary has definitely diminished; everything is now designated “thing.” It was a bit scary – her condition seems to have worsened since we last spoke. She was perfectly upbeat, just not making a whole lot of sense. The most crushing, crushing, crushing thing of all is that when I spoke to Kate, she said she got there the other day and a nurse said, “Oh, good, you are here to take her to lunch,” and Kate had to say, no, sorry, she could only come for a visit. Apparently Nana had said over and over – and says over and over – that her granddaughter was or is coming to take her to lunch, and talking to my sister, we deduced she’s probably talking about me, because that’s what we always did together. Lunch. When I was still working at UNSW during my doctorate, which was close to Nana’s, we went to lunch every week. And this seems to be part of The Day that Nana has left. That’s the way I think of Nana’s reality now: it’s like she has one day she relives over and over, a day that is a composite of all sorts of days she’s had in the past. Some husbands don’t make the cut; they don’t appear in her day. But the lunches, my taking her to lunch, that’s in there, and so daily – daily – she expects me to arrive. That’s The Day she has planned. And writing this is making my gut twist and my mouth pinch and my eyes smart, because I can’t BEAR that on that basis, I will disappoint her just about every day of the rest of her life. Okay. I’ve just remembered why it was getting so hard to call. I’m blubbering again.

Advertisements

14 Comments

  1. litlove said,

    Oh Di, this is so tough, but you put two and two together in a way your nana can’t now. It’s just not possible to know what emotions she attaches to events, or how much she really means what she’s saying, or even what good it would honestly do to fulfill the fantasy plans in her head. She can’t remember when Kate’s come and gone, and the chances are she wouldn’t remember the things you did, either. It’s all one big mess in her head, and not one that you can fix by doing what she seems to want. I can promise you, from watching my grandmother grow old and my own mother, that as they age, they are never satisfied with what you give them. You could turn up every day and it still wouldn’t be enough. All the dissatisfactions and the insufficiencies of their lives seem to focus on making the younger generation jump through hoops. But it isn’t the solution. There simply isn’t a solution at all.

    All that matters is that you do what you want. That you see her and speak to her enough to satisfy your own sense of what’s right and loving. Give what you can, so there’s nothing you can truly reproach yourself with, and leave it at that. Would she like to receive photos of where you live, or of what you and Llew are doing? Or letters? I have no idea here, you understand, what she can take in. But you’re creative and you really are loyal to her, so I know you’ll find just the right things to do. Even more hugs!

    • doctordi said,

      Thanks, Litlove. I think you’re right; and I know for a fact she wouldn’t remember even if I did fly up and take her out, because that’s already happened to me plenty of times when she was still living down here. And then she’d tell people I hadn’t turned up! Also I think you’re right that they’re never satisfied, certainly not older to younger women at least. Granddad was pretty cool. Women can be so punitive. I’m sure men can be, too, of course they can, but when I think of this dynamic, a thousand woman-to-woman examples spring to mind, although Llew would probably say he knows just what I am talking about, so perhaps it’s just my perspective is so skewed.

      She wouldn’t be able to read letters, she can’t concentrate long enough, but photos are a good idea, and maybe short cards. Kate could read those out to her or she could maybe even read it herself. But they’re great ideas, thank you!

  2. charlotteotter said,

    It’s understandable that you feel sad and guilty and desperate, but your Nana is lucky to have you and Kate who love her so much and a safe place to live. You two have done and are doing the best you can for her. Wishing you the strength you need in this long, long goodbye to the Nana you know.

    • doctordi said,

      Thanks, Charlotte. She is in a really excellent place, and there’s no question her situation up there far exceeds what we could have found for her in Sydney, so I don’t question or regret that part of the equation at all, especially not since Kate and the kids now get to see her often without having the burden of actual care. I guess I underestimated the impression I’d made in the past 7 years of my caring for her and spending time with her. I never really believed until now that she cared much for me, so I honestly didn’t imagine she’d miss me. It’s very nice for me that I appear to have been wrong about that, but conversely that means that yes, it’s a long and painful road ahead, I think, a very long goodbye.

  3. Fugitive Pieces said,

    Oh, love. I’m so, so sorry. But Litlove and Charlotte are (as usual) bang on the money. ‘Lunch’ will soon be stripped of its meaning, and it may already have become her own code for the social pride that comes with having relatives who care – she’s telling the nurse that she’s busy, thank you, and loved too. Her Day is a very attenuated version of her Life, that she has to re-state constantly. She really doesn’t have a plan that persists, so you can’t disappoint her, and any disapproval or distress are more likely reflexive, or a natural response to her own confusion. She’s a tree that’s clinging to a few leaves.
    Please don’t tangle up grief and guilt any more than you have to; if Nana was fully compos mentis, tough old broad that she was, she would tell you to take bloody good care of yourself right now. So that’s what we’re doing.

    • doctordi said,

      Fugitive, thanks, and I think that’s also true, that’s exactly what’s happening with The Day, and she does restate it constantly. Of course, this makes it very wearing for Kate during her visits, particularly because she understandably feels she’s not giving Nana what she says she wants. But in truth she is; Nana really just wants attention, and she’s getting buckets of that.

      Thank you – you’re all doing a wonderful job!

  4. Grad said,

    When my father was dying from a brain tumor in Chicago, I had to move with my husband and children to Savannah, leaving Shorty to fend with only the help of my brother (who really WAS a great help). It was February, and I told him, “Dad, when the kids are out of school, we’ll be back to see you.” He died on May 25, just days before school let out. Shorty told me that every day, he’d say, “Lindy is coming over today as soon as the kids get out of school.” And every day, my Mom would say, “Rudy, she didn’t mean out of school for the day. She’ll come when they’re out of school for the summer.” “Oh!” He’d say. But then, the next day, the same expectation would be there. The brain tumor acted very much like Alzheimers. I was eaten up with guilt when I learned all this upon going home for his funeral. I thought to myself, while I was at the store, or going to the park, or picking out furniture for the new house, my Dad was far away waiting for me to come home. At the wake, I waited until everyone else had left the room to get in the processional cars. I stood by his casket and asked him to forgive me. But I know he’d have told me, in his tough Chicago voice, “Oh, Lindy-loo, youse didn’t do nuthin to forgive ‘ya for.” Your Nana would say the same thing with her lovely Australian lilt. You see, Di, they love us…these folks. And they would no more wish us to suffer for something we cannot control than we would wish it upon them. Be well, and stay your happy, upbeat self. You are doing all you can, and that is all anyone can be expected to ask of themselves.

    • doctordi said,

      Graddikins, not only did this make me cry, it made Llew cry, too, and he’s never cried at anything on this blog before, nor does he cry often (I have been a bit prone lately, as you know). That is just so sad and unfair and lovely and heartbreaking, and I know that’s just what he would have told you. Thank you; it does really help hearing your own experience of this. xx

  5. Lilian Nattel said,

    I’m blubbering too. But the thing is–it’s a good day that she has left. She still feels the love and the goodness of the lunches. That is staying with her.

    • doctordi said,

      After reading Grad’s comment, I was back to blubbering too! That’s true, Lilian, that’s a very nice way of looking at it. It’s a good day, which is why she always sounds so happy. If I have contributed in any way to why she sounds so upbeat now, that’s a good thing.

  6. kate4samh said,

    Much better words than mine above, and I agree with them all. Much love.

  7. doctordi said,

    Thanks, Kate. And I guess I just want to say that by being there visiting her, you ARE giving her EXACTLY what she wants and needs, I’m sure it doesn’t feel like it what with the constant lunch references, but really that’s just what she’s got left at her disposal, and not literal at all. And the irony is, I’d take her out and then she wouldn’t think I had. I was so glad Christmas Eve that Janet and John were with us, because otherwise I could feel that the chemist and his assistant just wouldn’t have believed me when I assured them that no, no, I did turn up, and yes, yes, we went out for lunch. Nana does a very convincing line of denial because she really does not have a clue. So take heart in all of that – it does mean a lot to her seeing you every week even if she can no longer express that. Much love back. xx

  8. davidrochester said,

    This is so, so hard. We’re having the same types of experiences with my aunt, with the notable exception that because she was an incredibly difficult borderline personality before she developed Alzheimer’s, nobody liked her much anyway, so the emotional impact is quite different. But adjusting to the fact that she just doesn’t remember, and misdesignates events and objects continually … it’s really challenging, especially for her primary caretaker, her sister, who still unrealistically expects her to be somewhat rational.

    It’s an incredibly cruel disease, and far more cruel to onlookers, I think, than to the sufferer, after it gets to a certain point.

  9. doctordi said,

    Oh, David, that really must be a handful. And Nana could be a real wretch, so narcissistic and sometimes cruel, but it’s the best of her that’s been left to us, and I can’t describe what a mercy that’s been. I completely understand your other aunt’s expectation that reason will be forthcoming if one simply perseveres; it’s a really natural expectation, particularly if you’ve known the person your whole life. It’s hard accepting that person’s gone, for all intents and purposes.

    Incredibly cruel, and definitely more to loved ones in cases like Nana’s, where at least she’s locked into a mind that thinks nothing could be finer.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: