Mama Gaga

Banishing demons

I haven’t written on my blog for over a month. I haven’t had the time. Or made the time. I’m not sure which. I was too busy. Too tired. Preferred to go out to dinner with friends or watch a movie than to sit down and write about the things I was going through. I made notes, of course. Scribbled things down, started some stories, filled my blog with rough drafts. But nothing was ever finished.

Then yesterday it occurred to me that perhaps that is why I am feeling so out of sorts. Writing has been my way of sorting through my thoughts and feelings. Of understanding them. And coping with them. And so I decide to make the time right NOW! And I sat down on the couch and started to read through my notes and drafts and finally write down the stories I never finished.

Time flew by. It was already 2.30 am. I have to get up early and go to work the next morning, but that doesn’t matter to me any more. The urge to write is back and feels like the urge to breath. I NEED to do this. I don’t finish till 4 am, telling myself I will post what I wrote on my blog tomorrow.

Then this morning, after less than five hours of sleep, I awoke before the alarm clock went off, feeling more refreshed and rested than I have in weeks. It was a short night, but it was also my first night of uninterrupted sleep in a very long time. This is why I must remember to keep writing, because it is the only way I know to banish my demons.

After the fact

I thought I had coped so well. I had given myself time and taken all the precautions. I had insisted on sleeping in my own room. I had spent time away from my mother, with my own friends. I had made sure I slept enough. And I had repeated my mantra over and over: “it’s not my mother, it’s the disease”. I did everything ‘right’. Yet here I am, after the fact, back home, feeling like I’m slowly falling apart. I understand why I feel an overwhelming sadness. Of course I feel sad. But what I don’t understand is how this visit stripped me of my self-confidence and my self-esteem. I held my head high and was strong, so why am I now a tiny pile of insecure sadness?

And then they came

Ten days we spent together. Lying in bed in the morning joking, stopping in the street to admire the great view of the church tower, laughing as we’re greeted with a flourish by the waiter at the local restaurant, playing jokes on each other, working through papers and administration… I adjusted my pace to hers, I breathed deeply to calm myself when the tension ran high, I used toilet breaks to gather my thoughts. The first days were the best. The easiest. The most fun. But as the days passed, I began to feel my muscles tense up, to hear my voice become strained. Still, I smiled and all was as fine as I could make it. Until this last day, when my bus pulled around the corner and they came. For ten days I held them in, hidden from her, but now, as her waving figure disappears from view, they come without hesitation, my tears of frustration, sadness, loss, confusion, exhaustion, fear… and love.

One last little thing

All we had to do was answer one last question about her will. It should have taken no more than fifteen minutes. My whole visit, she had been putting this off. “Let’s have lunch first…” “We already dealt with the accountant today, that’s enough for one day…” Every day she would find another reason why we shouldn’t sit down and deal with this, the last step in the long process of her will and powers of attorney.

Not wanting to push too much, nor wanting to upset her and knowing how little work it would be, I let her put it off. So, now, on my last day, we sit down behind her computer and I explain the last decision she needs to make. “Oh, leave that, I’ll deal with it later,” she sighs, already getting up from her desk chair. But I know she won’t deal with it. She never does. What we don’t do together, simply doesn’t get done. I try to explain this to her. Tell her it’s been almost a full year since we started and we still haven’t finalized her will. But this only annoys her more and she turns to me in anger: Why am I so bossy? Why do push her so? Why am I always so tense? Why do we have to do this at the last minute? Why don’t I trust her to do what she says? Disapproval, blame, reproach…

I wait. Breathing deeply. Fighting back tears. I wait for her to calm down. Wait for her to change the subject. When she finally does, she’s decided it’s lunch time. As we head downstairs for bread and cheese, I quickly grab the papers from the printer.

When she pushes her plate away, leans back and takes a last sip of wine, I slip the papers forward, underlining the last paragraph: “If you’ll just read this last paragraph from the solicitor, and let him know your decision, he can finalize your will.” She slams down her glass: “Really, you want me to do this over lunch?!” And so I apologize, again: “You’re right, let’s go for a walk instead.” As we head out the door, arm in arm, I glance at the clock. Twenty-one hours until my bus leaves…

Groundhog Day

Every morning I first hear her footsteps in the hall. Then my bedroom door slowly creaks open. I’m waiting for her, either with one eye open, or my arms spread out, or upside down in the bed with my feet sticking out, anything to surprise her and make her laugh. She will then slip into the bed beside me, talking about her morning so far. Then she will notice the teddy bear, smile and pick him up. “Have you seen the lovely little bear?” she will ask and then proceed to tell me where she bought him, ask me to confirm his elegance, complain that his fur is covering his eyes, start to comb his fur away from his eyes, finishing with a flourishing: “There, doesn’t he look better when you see his eyes?!” The same ritual, with small variations, every morning.

Every time we walk down the street, my mother will pull my arm at the first corner, demanding I look left. And I will look at the beautiful library that has become visible now a wall has been torn down. Then she will pull my arm again and make me look right, at the spectacular church tower. On the way back home, she will repeat the ritual.

The first time I realized we were repeating a conversation or exchange for a fourth time, it was a shock. Almost unreal, something out of a movie, Groundhog Day. Then for a while it was something lighthearted, something simple and easy to deal with. But as the same stories played out between us, day after day, it became more and more difficult to react spontaneously. It became harder  to laugh at the jokes I had heard so many times before. I started to want to answer questions before she asked them. Wanted to say her lines for her, to fast forward to get past the bits I already knew. But when I did that, I would see she her become confused, even hurt, unable to understand why I was reacting so impatiently to an idle comment she made.

Last night, when I went to bed, I looked up at the dreaded teddy bear on the shelf, realizing that tomorrow, once again, we would be talking about him. Then, before the bear knew what hit him, I had swept him off the shelf and under the bed. Out of sight. I go to sleep smiling, tomorrow will be without bear-talk. I slept so deeply I didn’t hear my mother come in. I wake up to see her standing by my bed, her head tilted to the side, staring at the shelf above the bed: “Where did the little bear go?”

The bossy one

My mother is annoyed with me. I’ve been trying to do too much today. To get through some paperwork, to get her to make some decisions. And so she starts with the reproaches: why am I always so bossy? Why do I take over? Why can’t I just relax and play? Why am I always so tense? And as she continues her litany, I silently reach for my mantra: “it’s not her, it’s her disease”.

Then suddenly it hits me. I’m wrong. It’s not her. Nor is it her disease. It’s a process that took place decades ago, where through some strange alignment of characters, events and chance, the roles in our family were assigned. When I was assigned the role of organizer, fixer, helper, was defined as the practical one, the serious one, the bossy one…

And so today I am helping her get organized, as I have for decades. This has nothing to do with her disease, this is who we are to each other. From the day when seven year old me unpacked the kitchen after a move and we as a family agreed I was the organized one, this is who we have always been. I didn’t like my role then. I don’t like it now. But it’s the only role I know. And the only one she knows for me.  

Banshees

My sister and I had a great day out together. We laughed, chatted, got along better than we have in a long time. As we head home I look over at her, appreciating her more than ever. Recognizing the bond between us. We are in this together!

As we drive down the highway, I tell her the I feel we’re a team. She agrees. And the conversation drifts to my mother. She tells me how difficult it is living so close by, always at my mother’s beck and call for all the little daily mess ups: “What does this entry in my diary mean? Where is my handbag? Do you know when so and so is coming by?…” I tell her how hard it is to live so far away, not being able to see my mother for such long stretches of time, trying to deal with her administration and finance from abroad…

Our stories spiral around each other until it becomes obvious that we are playing a game of it’s-harder-for-me. I see what I am doing, but am unable to stop myself. I feel misunderstood and want my sister to understand what this is doing to me. And at the same time my sister is telling me that I don’t understand how bad the situation has become. I retort in anger. Telling her I’m well aware of our mother’s state, but that we are still in the beginning stages, this is still the easy bit, our mother is not wandering the streets or setting fire to her kitchen. My sister’s voice becomes shriller as she tries to convince me of the severity of the situation. Tries to make me understand her point of view. And my voice gets louder as I try to convince her that things are relatively okay, desperate for her to accept my version of our story. Soon blame starts flying through the car. She accuses me of conniving behind my mother’s back. I am furious. Conniving?!?! I am doing everything I can to get the administration in order, my sister takes no interest in that, has no idea what I’m doing. “Well you have no idea what I have to deal with” she yells back. By now we are both screaming like banshees.

I think we both realize what we are doing at the same time, because we stop shouting at the exact same moment. The rest of the trip we sit in silence while the car speeds down the evening roads. When we are nearly home, one of us finally speaks:

- “It’s not easy.”

- “No it isn’t. We should communicate more.”

- “Yes, we should…”

Which truth?

I am visiting my mother for ten days, and am confronted with a recent development I already noticed a few weeks ago when she visited me. She has started to express disapproval; commenting on the way I dress, too much cleavage, too extravagant an outfit for the occasion. She has started to criticize my behavior; asking if I need to be so talkative, wondering if I am perhaps not too shallow a person, too obsessed with partying. All of this is new to me. Not once have I ever felt that she disliked the way I dress. My mother has always been an incredibly approving person, never prone to criticism, born to compliment. I am not used to these criticisms. Nor have I learned to build a buffer against them. They hit hard.

Someone once said that I should look at her Alzheimer’s like a drug altering her behavior. But I struggle with the analogy. What does it mean? Sometimes when on drugs, people’s perceptions change and they will say things they won’t mean when sober. But just as often, people who are high will suddenly share their deepest truths. And so I am left wondering: has the Alzheimer’s changed my mother’s perception and is she suddenly seeing me in a less positive light? Or has she always seen me this way and is the Alzheimer making it easier for her to tell me what she always felt?

I will probably never know the answer to my question and know full well that I should put it out of my mind. But I can’t stop myself from mulling it over. And so here I am, a woman in her forties, suddenly worried that her mommy doesn’t like her that much…

Easy solutions

Sometimes I cope better than others. Sometimes things get too hard. Sometimes a telephone conversation can completely throw me. Sometimes I can’t deal with my mother’s repetitive stories, her insecurities, her forgetfulness.

I sit in my therapists office, attempting to analyze why, sometimes, I didn’t cope so well. Like last week, when I had been very short with my mother over the telephone. I had just come home when she called, hadn’t even had time to think about dinner… My therapist leans forward: “One question, were you hungry when she phoned?” I was.  “Ah,” she says, leaning back with a smile, “It’s always difficult to deal with anything when hungry. Especially emotions.” Later, when discussing a similar situation, she asked if I was tired. I was.

Thanks to my therapist I am slowly beginning to realize that not all problems are actual problems. Sometimes the problem is not the Alzheimer. Nor the way it makes my mother behave. Nor the way my sister deals with it. Nor the way it upsets my world. No, sometimes the only problem is that I am too hungry or too tired to be able to cope. And this insight is incredibly liberating, because hunger and weariness are much easier problems to solve than Alzheimer’s.

Why does it matter?

My mother left yesterday and I am left looking back at five days with her; seeing where I coped well and where I did less well. One incident keeps coming to mind. She had bought a quiche. That afternoon she mentioned she’d like the pizza she bought for lunch. “Pizza? You mean quiche.” It’s out before I realize. Of course she means quiche, she says in irritation, she doesn’t even really like pizza.

While we make the salad, pre-warm the oven, my mother keeps referring to the quiche as a pizza. And even when we’re eating it, she remarks on how lovely the pizza is. And every time she mentions the pizza, I have to actively stop myself from correcting her. I know full well what she means. So why does it matter that she uses the wrong word? But it obviously does matter to me, because I can barely control the urge to correct her.

It seems so simple, all I have to do is just go along with her. I am surprised at how difficult it actually is.