Happy Thanksgiving

Frieda

So my dad and I are sorting through my mother's old things when we exclaim in unison: "Mama!" "Frieda!" What a find: A beautiful hand-tinted 8x12 photograph of my mother taken around the time she met my father.

All work stops to find the perfect spot to hang the portrait. When we are done, Opa asks, "Where is Frieda now?" For me,  one of the hardest things about dementia is having to answer this question with "She passed away, Daddy" and seeing my father react as though he were hearing this for the first time.

Frieda (circa 1950)

The truth was always of the highest value to Opa who wouldn't even tell a white life. When Opa said a thing, you knew he meant it. I have always tried to honor this in my own life. And I wanted to uphold the truth for him even though the truth was sometimes painful. But this changed. After a time, when Opa would ask me where my mother was, I would lie. I would tell him that she was working in her shop and would be home later. Opa always believed me and was content with this answer.

Opa believed me when, in the last hours of his life, delirious and struggling hard to stay alive, I whispered in his ear, "It's time to go home, Frieda is waiting for you there." For a moment he was calm. He looked intently into my eyes, and I saw a single tear roll down his cheek. He knew I was telling the truth and he seemed content with it.

Caregivers Education Series: Class 3

"The past which is not recoverable in any other way is embedded, as if in amber, in the music, and people can regain a sense of identity. . ." — Oliver Sacks

 What stands out the most for me from tonight's class is the research about music and memory.   

While we all know that familiar songs from our personal past have the power to trigger emotionally salient memories, findings have shown that this spontaneous activation is preserved even in persons with advanced dementia (Janata, 2009).

For a testament of the power of music to preserve identity, trigger memory, and enliven the self, watch this moving clip of Henry from the documentary Alive Inside.



References
Janata, P. (2009). The Neural Architecture of Music-Evoked Autobiographical Memories. Cerebral Cortex, 19 (11). doi:10.1093/cercor/bhp008

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.