Wednesday, February 18, 2009

A Shared experience

I listen to a fascinating snippet from the BBC Best of Today on my i-pod as I prepare dinner for the masses. It is so reassuring to learn that millions of people have similar experiences of care giving to relatives with dementia and share similar frustrations. I relate to people who stand on the fringe to watch dirty plates dried with hand towels, people who put dirty plates back with the clean and so many other tiny details. I learn that other people have also learned to do the same things, to let the person with dementia do their own thing, the way they need to do it, and then when they’re finished, afterwards to step in and correct.

I suspect that this is easier for me than for some other people because of my experiences with my own children and because Nonna is not my own mother, father or partner. I am one step removed from that tie that colours perspective.

Nonna is curious about everything, which I consider to be a positive asset. That said, her short term memory is not what it used to be, which in turn means that most things remain new and therefore still noteworthy, of interest. My constant dilemma is whether to give the same answers to the same questions, or whether to answer as if it were the first time?

So often it is difficult to judge what is for the best. Every once in a while Nonna wishes to be helpful. It is difficult to be helpful in someone else’s household, even when it has become your own. I refrain from my first instinct, “it’s o.k. I’ll do it myself.” Instead I adopt a different tactic. I rearrange the kitchen shelves so that someone who is much shorter than me, has easier access. I refresh all the labels on all the doors and drawers that used to help my children.

Whilst Nonna visits the doctor accompanied by her son, I spend a few moments contemplating how to overcome some of our communication difficulties. I am more accustomed to the company of people who think differently. All I need to do is think a bit more differently, probably in a different direction.

Nonna has a whole stream of questions that need to be answered at regular intervals throughout the day. Every so often she adds a new one to her string. A longer piece of string is in many ways commendable, because it means that there are more things that she needs to keep tabs on, such as the new dog. This is infinitely preferable to the question that preceded it, just a few weeks ago:- “Did you know there is a dog in the garden?” Yes, Thatcher has entered her lexicon, which is a thoroughly good thing. It is so much better to hear “where is Thatcher?” fifty times a day, because a strange, unknown dog in the garden is a cause for concern, if not alarm.

Now that I know what to expect, it is far easier to respond to the list of queries in a calm manner. My performance faulters somewhat when we have a houseful, but during the school hours, I am usually able to keep on track.

Our home is full of trip wires for the unwary. The new fridge is an added nuisance. For ten years we have had a fridge that opens out to the left, when it wasn’t frozen shut or broken. The new one opens to the right. It’s an adjustment that flummoxes her every day. It annoys her every day because she knows that she makes the same mistake every day, many, many times. I avert my gaze as she swears under her breath. I ignore it because as yet I have no answer and I sympathise with a body that doesn’t obey.

I learn to be more observant, notice the signs. A bad and sleepless night reveals itself in the overflowing coffee grounds, the dirty plates of the night eater, the snacks of diabetes.

Other hic-cups can be addressed. The new calendar is at just the right height, not for the children, nor for the adults, stuck in a prominent position which is also free from onlookers. I check off the passing days with a thick black marker. She can check out the calendar as she passes, a quick glance without pause, in the passage way, between her bedroom and the kitchen, her regular route. The milk carton is kept half full. Half full because a gallon is too heavy for independence.

The fruit is still a foil. Although we live in the fruit basket of America, the abundance lives in the fridge because it is also warm. The label marks the drawer but as yet, it is still off radar. Nonna is used to easy access fruit, on the table, prominent. Her lament is pitiful, “yes……I do miss fruit,” which prompts me to adjust.

I dig out the three tier contraption, a buried mishap to small children, fill it with fruit and plonk it in the middle of the dining room table. A beacon in an open plan house, the roundabout to all traffic.

I’m in two minds about this change. The sight and smell of the bananas is abhorrent to my son. It evokes his gag reflex, before they’re even opened. It’s all a question of balance and I’m not sure how tot get it right? With seven for dinner around the crowded table, the fruit tier is relegated to the floor where it is open season for Thatcher who is more than partial to apples and not averse to some stealthy theft. I seem to fix one thing and snap another at every turn.

I think these things as Nonna returns from the doctor with a clean bill of health and a bag of nectarines that she bought whilst waiting for her prescription to be filled. Her son is a picture of stress and angst after only an hour and a half of one on one, first hand experience in a public forum. I wonder how many times he lost her, but I don’t like to ask. “There!” she announces with a triumph, “fruit! At last!” as she drops the bag on the table, approximately six inches from the overflowing, three tiered fruit bowl. As she leaves to change into something more comfortable, we exchange glances. His expression of despair and exasperation is strangely reassuring. I’d like to prompt him to greet his children but ‘overload’ is plastered to his furrowed brow. We prop each other up in the kitchen in the semblance of a silent hug. A few seconds later, Nonna appears in the kitchen with a face of fury waving something with violent incandescence, “look! Look at dat!”
“What is it?”
“Peach! Peach! Stone!”
“Oh dear.”
“Gawd dat dog is a thief!”
So often the truth hurts. Frequently the truth is a painless pleasant pin prick that marks a moment forever.


deb said...

Oh, Maddy- I feel for both you and your husband. I am much further along on this "Sandwiched" journey- I am the guardian of my father, who has end stage Alzheimer's, and also have two special needs children. My Dad can no longer walk, talk, toilet or care for himself in any way, and recognizes no one. My heart breaks for you. It is not easy. If you ever need a sympathetic ear, please feel free to email me-
You are in my thoughts-

Chris H said...

I think its admirable that you take such good care of Noona....YOU ARE SPECIAL... so there!

Almost American said...

Being one step removed certainly helps. My FIL refused to raise the topic of incontinence with my MIL. I guess he didn't mind when she peed on his furniture. Nah, I know he did - he just had no idea how to approach the topic and must have been terrified that she would throw a temper tantrum. I went out and bought her some Depends, and explained to her that she needed to use them and that she would be a lot more comfortable and she took it very well. Even asked me to help her put them on! Then she told me she loved me for caring!

I didn't have to live in the same house with her 24/7 though, so it was much easier for me. None of us knew the true extent of what was going on until she was hospitalized with a broken ankle.

Has Nonna found the marker for the calendar and crossed extra days off yet? My grandmother would have done that - she was always convinced the calendar was wrong!

I wonder if there is a US equivalent to an Admiral nurse? We certainly never found one around here! Nonna is certainly lucky to have you!

Anonymous said...

Inasmuch as my Hubby and I hope to offset the need for our children to take care of us I so want to rejoice in your story. I so wish others would not pity what is obviously a loving and adaptive family arrangement.

And I thought my dog was the spirit of omnivore since she gladly eats tomatoes.


Wonderful World of Weiners said...

I am impressed. What a huge task you have undertaken...

And yes, I too, would love snow from afar...but alas, mine is ALL AROUND ME and more coming tomorrow!!

Hallie :)

buffalodick said...

We had two in college, when my dad ended up in a home. My mom lived by herself in their old place, so we had to pickup mom, visit dad, then go make sure she had heat, food etc. It was like a weird hobby for about 3 years- took up a huge portion of our time, as my wife and I both worked full time..

All Rileyed Up said...

Nonna, and your children, are lucky to have you. It's great that you're always looking for new ways to accommodate the household. So many people are resistent to change, which I find is so necessary to keeping up with my household (and mine is not nearly as hectic as yours).

Have you heard of the book Mother in the Middle by Sybil Lockhart? I'm about to start reading it and the subject matter sounds like one that you might relate to.

Thanks for such a thoughtful post! You're a beautiful writer.

Anne said...

I shouldn't think it'd be too hard to flip the 'fridge door so it opens on the other side. There is usually a name plate over the place where the handle would screw into on the other side.

Nancy said...

Very moving.

There is great humility in being human, is there not? We are who we are, we give what we can. We can do no more than that.