Dolphin Dream

Opa and I are standing at the railing of a ship, cruising down an estuary, when I see what appears to be a shark in the water. I point it out to Opa but he doesn't see it. The shark disappears from view and is replaced by a few dolphins swimming under the surface of the water. I point this out to Opa, but again he doesn't see. Suddenly, dolphins, in a pod of at least 50 in number, begin jumping out of the water. Opa laughs, "I see them now!" And, to our great delight, they accompany us alongside the ship as we head up the estuary.

Impression: This uplifting dreams signifies to me that what appears to be a journey into dangerous waters will in fact be joyful for both me and my father.

Caregivers Education Series: Class 2

I am finding it immensely rewarding to attend these classes. It's not that I am learning new things so much, but more that the classes are helping to consolidate what my experience is teaching me. This is having a positive impact on my attitude, motivation, and self-confidence.

Many ideas from this week's class stand out for me, including these:

1. Let go of the idea of perfection. As a caregiver with the best of intentions, it is easy to get down on yourself for those times when you succumb to frustration. "Remember that practice does not make perfect," said the educator. "Practice makes better,"she said. 
2. Welcome mistakes as opportunities for improvement. As Michael Jordan said: "I've failed over and over and over again in my life and that is why I succeed." 
3. Ask yourself, "Do I want to be right or do I want peace?" In caring for someone with dementia, countless opportunities for disagreement present themselves. During these times, you quickly become aware of your own ego and its defensive need to be right. If you want peace, then you must learn to override the ego.
4. Try "therapeutic fibbing" to maintain peace and promote well-being. An example: "You didn't tell me that I have a doctor's appointment." "I'm sorry, dad, I must have forgotten." What would the effect be if I had said, "Dad, I told you about the appointment at least 5 times"? While this may be factually right, it would be morally wrong to respond to my father in ways that lead to confusion, embarrassment, or loss of self-confidence. 
5. Focus on emotional truths rather than facts. When the person with dementia recounts a memory that you know is factually incorrect, don't point out mistakes. Instead, respond to the emotions that are being conveyed. For example: "It sounds like you had a lot of fun."
6. When negative emotions arise, look for the source. Even though the facts may be incorrect, don't assume that the emotions conveyed are groundless. This reminded me of the one time that my gentle father became angry with me since I became his caregiver. At first I assumed that this uncharacteristic behaviour was due to the dementia. But later, once my hurt feelings had settled, I realized that he was responding to my attitude which, outside of my conscious awareness, had become increasingly patronizing and condescending. 
7. Don't try to communicate when negative emotions are high. Wait until things settle down. 
8. Treat the person with dementia with respect. He or she is your peer or elder, not your child, and should be treated accordingly. 
9. Provide the person with dementia with opportunities to feel useful. For instance, my dad loves to help around the house. Even if dishes don't get washed as well as I would like, it's great that he is still wanting to do those kinds of chores.
10. Remember that, no matter how far the disease progresses, the core of self will always remain. So much of the person is lost with dementia, and the fear is that the disease may make your loved one unrecognizable at some point. It helps tremendously to know that this will not be the case.  
11. Dementia exposes the true self. The self in dementia is often a self freed from social constraints and responsibilities. What you are seeing is the soul of the person. An example from my own life is that my previously shy and reserved father now loves to sing, crack jokes, and ham it up in front of a camera! He especially loves to entertain his granddaughters as you can see in this picture of Opa doing his impression of a gangsta rapper.

The Old Blue Vacuum Cleaner

So I get up at 6:30 am to bring the "large item" garbage out including a 20-year-old non-functioning vacuum cleaner. I have to make sure to bring such garbage out to the curb just before pick-up so that Opa doesn't have a chance to sneak it all back into the house. But later, after the garbage pick-up, I noticed something in the backyard....

Opa makes me laugh, and he teaches me that humour is found in the unexpected. 

Caregivers Education Series: Class 1

Last night, I went to my first Caregivers Education Series class at the Alzheimer Society, and came away with two useful insights.

The first is that I am very fortunate. Compared to many of the other stories that were being shared, my experience as a caregiver is a relatively happy one so far. My father is not exhibiting the more difficult personality changes that some of my fellow caregivers were reporting in their loved ones. For the most part, living with my father has been a joy.

The second is that I am on the right track in terms of responding to unusual behaviours. The educator stressed that maintaining trust should be the primary concern of caregivers. This includes no attempts to point out or correct mistakes in memory or reasoning. Such endeavours will not lead to improved functioning. Moreover, they create anxiety and mistrust in the loved one which will lead to more rapid decline. 

During the class, I was also faced with a pet peeve of mine: the use of the “they versus we” binary (“they” as persons with dementia and “we” as caregivers of persons with dementia). I am not sure how to avoid this, if it can be avoided, or even if it should be avoided. I only know that it doesn’t sit quite right with me (I cringe when I find myself referring to my father as “they”).

Based on social science findings, members of an in-group ("we") will tend to identify more with one another than with members of an out-group ("they"). On the positive side, such group identification promotes greater trust and cohesiveness among members which, in the case of caregivers, paves the way for much needed peer support. However, it may also promote greater psychological distance between caregivers and the persons they care for, as well as a tendency for caregivers to view persons with dementia less as diverse individuals and more as a homogenous group. The “we and they” binary is likely also a defence against anxiety. If persons with dementia are “they,” then we caregivers can avoid confronting our own fears about aging and cognitive and physical decline. Lots for me to think about there.

Oh where oh where is the coffee?

Each week I spend a significant amount of time searching for needed items that have gone missing. For a week or two it was my reading glasses. Before that it was my tools. Locating the watering can was a summer long activity. Although there are exceptions, usually missing items can be found under Opa's bed, in his dresser drawers, in his closet, or occasionally in the basement, He is more surprised than anyone when I find these items there.

The most recent disappearing item is my father's instant coffee.  Last week, I found his jar of coffee on the top shelf of his closet. This week the coffee disappeared again, but was not quite as easy to locate.  After checking the usual places at least three times, I gave up. But then it showed up a couple of days later when I decided to bake his favourite plum cake.

While I prefer brewed coffee, Opa prefers instant. Or does he? This morning, my basket of coffee filters went missing and has still not been located.
 

Three Years and Thirteen Dumpsters...

Three Years and Thirteen Dumpsters. It's from the title of a blog that reminds me I am not the only middle aged daughter who has made decluttering a symbol for coping with her father's dementia.

It's been 6 1/2 years for me. I tried to clean house, the basement most especially, when I first arrived back to this house where I grew up. After my mother died. After my husband died. But, since most of what I brought out to the curb somehow managed to find its way back inside, I decided it must be too stressful for my father (who most people call Opa these days). After all, who was I to decide that some changes were in order? It's not my house. So I abandoned the idea. Until recently.

One dumpster later, there is finally some maneuvering room in the basement. Today I am cleaning out my dad's tool room. But cleaning this house is never easy. Everything I touch triggers some memory.  His tools. All the motors he saved. Not too long ago Opa could fix anything. I linger for a while over his fishing equipment, unused for a decade at least.

How I loved to fish with him! Every summer, my parents would rent a lakeside cottage somewhere in Ontario. There would always be a dock out front and a small boat with motor for me, my sister and Opa. Oma only learned to appreciate the joy of fishing much later in life...

Suddenly basement lights go out, and the chain of memories breaks. I am left standing in the dark, shouting "DAD, I'M IN THE BASEMENT!" Shouting because my dad's hearing has diminished along with his memory. Lights come back on, followed by "Sorry, I didn't know you were down there." And so it goes, once every ten minutes or so.

Opa is my teacher. Patience.

After yet another light outage, but just when his tool room is functional again, Opa comes down to have a look at what I am doing. At first he's speechless. He eyes his row of tools and runs his hand across the decluttered work bench. "It makes me want to start a project!" he finally says, which makes it all worthwhile.

Before we head upstairs, Opa opens the door to the cold cellar. "Wow, there is too much stuff in here!" he says. No worries, Papa, it's on my list.

Living in the Moment

"Alzheimer’s is about living in the present. To exist outside of memory is to occupy the moment wholly... So these days, I sometimes believe I am not so much losing my mother as communicating, more and more so exclusively, with that side of her that exists only in the present." ~ Elizabeth Kadetsky

And so it is with my dad and me.