Winter Lock Out

I reheat a delicious Moussaka that my dear friend Penny sent home for me and Opa. I cook up some green beans and a salad to go with it. When everything is almost ready, I decide to dash outside to the green bin to dispose of the vegetable scraps. This takes only seconds, but when I return the door is locked.  

It’s December, minus five degrees and windy. I am in jeans and a t-shirt. Oh well, no biggie. I run around to the front porch and ring the doorbell. No answer. I ring again harder. Still no answer. So I ring and I ring until the old, wind-up doorbell gives up the ghost. Through the windows, I can see clear through the house and into the kitchen but no Opa. Where the heck is he?

I run around to the other side of the house. No light in the bathroom. No light in the bedrooms. I run back to the front door, shivering. I knock hard. Nothing. I run to the side door again and see that the basement light is on. Aha! He must be down there! I bang on the side door a couple more times. Nothing. So I crawl under the stoop and start banging on the basement window. No signs of life.

Now I’m worried for us both. Did something happen to Opa? Am I going to get hypothermia and die out here? Is the stove on high? I’m considering kicking in the basement window when I see Opa peeking around a pillar in the basement. He looks scared.

I yell through the window, “Dad it’s me! Unlock the door!”

“Oh, okay, okay,” he says.

When the door opens, Opa is annoyed with me. “You scared me! What were you doing making all that noise?"

But then he sees my frost-bitten face and notices how I'm dressed, and he looks at me like he's sure I've lost my mind. Then he pats me very kindly on the shoulder, "You know, Helena, you really shouldn’t go out without a coat in this weather! It's freezing!”

"Yes, you’re right, father. That was foolish of me," I say, unable to keep the sarcastic tone out of my voice. Opa shakes his head and walks away.

Fortunately, the stove was on low and dinner was saved! Yay! Once my fingers are thawed out enough to use utensils, I serve us dinner. It's a wonderful meal. The Moussaka is outstanding and the beans are soggy just the way Opa likes them. But lesson learned: NEVER, ever, under any circumstances leave the house without keys! Or without a coat in winter.

Opa Chef for Cats

Opa goes through periods of heightened creativity, particularly at night when the rest of the house is asleep. One of the activities he likes to do is prepare interesting and nutritious breakfasts for our cat Michael. Sometimes he forgets that our cat Mia passed away this summer and will prepare breakie for two.

Recently, there were two bowls of milk garnished with fresh sliced strawberries along side the regular bowl of cat food. Michael ignored the strawberries and milk.

   
The next day, there was more of a variety: bread soaked in milk, orange juice, leftover vegetable pulp from the juicer, and a liverwurst sandwich cut up into bite size pieces.

 

 

As usual, Michael ignored the tasty offerings and went straight for his cat food.

 

 



On the third day, there was a cup of sugar, a bowl of mango juice, a caramel pudding cup, a bowl of sugar, and two wedges of Laughing Cow cheese.

 

Only this time, Opa decided to remove the bowl of cat food, presumably to entice Michael to sample the latest breakfast smorgasbord. Michael was not pleased.

 

Visuoperceptual Impairment

Visuoperceptual distortions are problems that involve both vision and perception. Common mistakes are illusions (seeing a face in a shadow), misperceptions (mistaking a stain on the carpet for a hole), and misidentifications (difficulties distinguishing daughter from grandaughter).

Understandably caregivers might mistake these distortions as delusions. But it is important to know that what the person with dementia is experiencing is not a true delusion. It is not based on incorrect reasoning or delusional thinking. Rather, it is the result of damage to neuro-visual system. Consequences include but are not limited to:

• needing more time to adapt to changes in light levels (eg when going from a dark room into sunlight or viceversa)
• changes in the reaction of the pupil to light
• loss of peripheral vision (being able to see things outside of the direct line of vision),
• reduced ability to differentiate colours
• problems directing or changing gaze
• problems with the recognition of objects, faces and colours
• loss of ability to name what has been seen
• double vision
• problems with depth perception.

As a result a person  may:

• become lost or disorientated, even in familiar places
• have problems locating people or objects
• misinterpret reflections (i.e. seeing an 'intruder' or refusing to go into a bathroom because it appears occupied, mistaking images on the TV for real people).

Regular eye examinations are important since cataracts, glaucoma, macular degeneration and retinal complications from diabetes also cause visuoperceptual distortions.

As a caregiver, the best approach is not to point out or correct distortions unless they are disturbing to the person experiencing them.

What a big store!

So Opa and I have added a new activity: Sunday night grocery shopping at Walmart. He likes it because there aren't too many people and we can always get parking close to the store. But the thing that impresses him the most is the store's size. Each time we go there he marvels, "What a big store!"

Tonight Opa must have been particularly impressed because even on the way home while waiting at a traffic light, he said: "What a big store! Huge!"

Noticing that I failed to share his amazement, Opa pointed to the next set of traffic lights about half a kilometre down the road. "Unbelievable!" he said. "Look at the light at the back of the store! Can you see it? This store is huge!"

I got with the picture then, commented on the hugeness of what we were seeing, and how good Opa's eyesight is for a person of 85 years. Once we started driving again, Opa talked about how satisfied he is with his life. As we pulled into our driveway, I asked him if I had told him lately what a great person he is. He answered with a grin, "Yes, but I wouldn't mind hearing it again!"

So there's the bitter-sweetness of life with Opa. There are daily indications of continued cognitive decline, like this visuoperceptual difficulty, and reminders of mortality and change and the shortness of time. But there is also humour and tenderness.  I think to myself, the more accepting I can be of death, my own as well as Opa's, the freer and more open I am to the beauty of our shared experience.

Drug Treatments and Dementia

Cholinesterase inhibitors (ChEIs) are the most common medications used for the treatment of symptoms of Alzheimer disease (AD). Although not recommended for the treatment of vascular dementia (VD), standard recommendations for AD often include a trial of treatment with ChEIs with discontinuation of drug therapy in non-responding patients.

Currently, three ChEIs are prescribed in Canada: donepezil (Aricept), galantamine (Reminyl), and rivastigmine (Exelon). The benefits of cholinesterase inhibitors for people with AD are generally small. The drugs do not reverse the effects of dementia. However, research suggests that in about half of patients, the drugs delay the worsening of cognitive decline for between six months to a year. A minority of patients may benefit more. Side effects of ChEIs include nausea, vomiting, diarrhea, anorexia, weight loss, dizziness, bradycardia (heart rate of under 60 BPM), myalgias (muscle pain), and insomnia.

It appears that the cardiovascular toxicity of ChEIs is underappreciated by physicians. At St. Michael’s hospital in Toronto, the health records of elderly patients were examined. Researchers concluded that ChEI therapy more than doubles the risk of hospitalization for bradycardia.  Of the ChEI-bradycardia patients studied, 11% required a pacemaker and 4% died before discharge. Findings showed that among those patients discharged from hospital more than half resumed ChEI therapy.

Non-drug therapies for dementia include cognitive-behavioural interventions, validation therapy, multisensory therapies such as music and art therapy, and others. Studies of non-drug therapies for dementia have been shown to delay cognitive decline without adverse side-effects, with studies yielding effect sizes similar to those of ChEIs. These therapies have also been shown to a) enhance the ability of AD patients to carry out activities of daily living (housekeeping, meal preparation, eating, personal hygiene, dressing etc.), and b) enhance the quality of life for both patient and their primary caregiver. Data show that day-to-day functioning and quality of life are not enhanced by ChEI medication. 

Increasingly, second-generation antipsychotic medications (or atypical antipsychotics), (originally developed to treat schizophrenia and other psychoses, have been used in AD to stabilize mood and reduce anxiety, tension, and hyperactivity, and control agitation and aggressiveness. Increased use of these drugs has continued despite the known side-effects and risks, including sedation, higher risks of falls and hip fractures, tardive dyskinesia (Parkinson's disease-type symptoms), cardiovascular events (stroke and heart attack), and overall greater risk of death. In response, Health Canada issued a warning in June, 2005:

"…treatment with atypical antipsychotic medication of behavioral disorders in elderly patients is associated with an increased risk for all-cause mortality. Except for risperidone (RISPERDAL), these medications are not approved for use in elderly patients with dementia."

In 2007, the BC Clinical Practice Guideline on Cognitive Impairment in the Elderly recommended environmental, behavioural, and psychosocial interventions as the first line of treatment for behavioural and psychological symptoms of dementia. The Guideline also recommended that physicians exercise caution when prescribing antipsychotic medications for elderly persons with dementia due to their side effects and the increased risk of death. Yet data collected in British Columbia between April 2010 and June 2011 showed that 50.3 percent of residential care patients were prescribed an antipsychotic. The data included 477,765 prescriptions dispensed at a cost of $9.245 million.

Earlier this month, the pharmaceutical company Johnson & Johnson agreed to pay over $2.2 billion to resolve allegations that the company downplayed known side-effects of Risperdal and aggressively marketed its use for seniors, children and the disabled. Other drugs companies have also agreed to pay billions of dollars in response to similar allegations regarding other atypical antipsychotics. A class action suit against Johnson & Johnson is currently underway in Canada (see http://risperdalcanadaclassaction.com/).

References

British Columbia Ministry of Health. (2011). A review of the use of antipsychotic drugs in British Columbia residential care facilities. Retrieved from http://www.health.gov.bc.ca/library/publications/year/2011/use-of-antipsychotic-drugs.pdf

Globe and Mail (November 2013). Johnson & Johnson to pay $2.2-billion to settle U.S. drug probes. Retrieved from http://www.theglobeandmail.com/report-on-business/international-business/us-business/johnson-johnson-settles-suit-over-marketing-unapproved-drugs/article15242384/

Graessel1, E., Stemmer, R., Eichenseer, B., Pickel1, S., Donath, Kornhuber, J., & Luttenberger, K. (2011).  Non-pharmacological, multicomponent group therapy in patients with degenerative dementia: A 12-month randomized, controlled trial. BMC Medicine (9)129. Retrieved from http://www.biomedcentral.com/content/pdf/1741-7015-9-129.pdf

Hagen. B., Armstrong Esther, C., Ikuta, R., Williams, R. J., Le Navenec, C., & Aho, M. (2005). Antipsychotic drug use in Canadian long-term care facilities: prevalence, patterns following resident relocation. International Psychogeriatrics, 17(2). Retrieved from https://www.uleth.ca/dspace/bitstream/handle/10133/378/Antipsychotic_drug_use.pdf%3Fsequence%3D1

Health Canada (2005). Health Canada endorsed important safety information on atypical antipsychotic drugs and dementia. Retrieved from http://healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2005/14307a-eng.php

Lee, P.E., Hsiung, G. R., Seitz, D., Gill, S. S., & Rochon, P. A. (2011) Cholinesterase inhibitors. BCMJ 53(8). Retrieved from http://www.bcmj.org/articles/cholinesterase-inhibitors

Park-Wyllie, L. Y., Mamdani, M. M., Li, P., Gill, S. S., Laupacis, A., & Juurlink, D. N. (2009). Cholinesterase inhibitors and hospitalization for bradycardia: A population-based study. PLoS Med (6), 9. Retrieved from http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1000157 

 

Smith, B., Chur-Hansen, A., Neale, A., & Symon, J. (2008). Quality of life and cholinesterase inhibitors: A qualitative study of patients with Alzheimer's Disease and their carers. Australasian Psychiatry, (16), 6. doi:10.1080/10398560802375990

 

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.

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.