Dementia Days

Sigrun and her granddaughter

Before Alzheimer’s, my mother used to be able to speak 4 languages: German, her mother tongue, English, learned in school and later from her husband, and French and Spanish, also learned in school and during travels to her much loved countries of France and Spain.

Sigrun has visited many cultures, but at her core she will always be German. Depending on your own background, this statement may produce a myriad of images in your mind: From Colonel Klink in Hogan’s Heroes to Volkswagen’s Fahrvergnuegen commercials, from Oktoberfest to pretzels and brats. (German culture has had a curious impact on American culture!) In any case, learning that somebody is German most likely will prompt you to have certain expectations of your interactions with said person.

As an example, if a person encountered another person with large ears, the German would probably state the fact that the person had large ears. It wouldn’t be meant as an insult, merely an attempt to make contact. The American, made uncomfortable by the large ears, would probably comment on the person’s lovely eyes, or hair, or clothes. Again, this also wouldn’t be meant as a deception, but an attempt to connect.

An American may think of German directness as rude. Yet, when we look West (say, towards Japan), it is our American culture that is more direct, and often considered rude. So, it helps to remember that cultural traits are rarely absolute. They are rather a matter of perspective, and shouldn’t be judged out of context.

In my mother I see loyalty, directness, and a critical mind as reminders of her native country.

In dementia, I’ve found that often times people become more direct. It seems that carrying on protocol and pleasantries gets more and more difficult. So directly saying what you think allows the demented to communicate.

When I first moved to the US, I much appreciated how we as Americans like to couch our comments, be politically correct, not offend.

Now, with political correctness run amok and true information being exterminated by infotainment, I sometimes long for German directness. That’s when I love visiting my mother’s reminiscence unit. Before they lose control over their language, most residents say no when they mean no, even if it offends. They refuse the food when it doesn’t taste good, and they don’t participate in games that don’t interest them – no matter how much effort was put into the planning by caring staff. Even without words, residents will find ways to make it known that they disagree, are not happy, or want to refuse something. (see previous blog posts)

Whether it’s in politics, social interaction, or journalism, I believe our society would do well to discover the German or the direct Alzheimer’s patient in us, discover and discuss facts without spin, call that proverbial spade a spade, and shift away from the individual-centered lifestyles, back to a sense of community.

When asked what he thought about newly emerging digital communities, Wendell Berry, one of my favorite authors, cautioned his audience to realize that when speaking of a digital community they are speaking of a metaphor. He reminded us of Aldo Leopold’s understanding of community as the people, the place, and everything in it.

“We abuse land because we regard it as a commodity belonging to us. When we see land as a community to which we belong, we may begin to use it with love and respect.”

from A Sand County Almanac by Aldo Leopold

I belong to a very digitally focused generation. Of course, I am writing these lines on a weblog. How much more digital – and somewhat impersonal – can it get? I love connecting with long lost friends on Facebook. And not a day goes by that I don’t use e-mail for work or play. I do research on the internet, find answers for my children’s questions through Google, love traveling to foreign lands and use my cell phone to talk to coworkers, friends, and family too far away to be considered my immediate community.

Yet that is exactly what I (and I think many of us) need: an immediate community. I believe that cultural exchange in most forms enriches most communities; but in order for a culture to exist, a community needs to be in place – and not one of those metaphoric digital communities that allows you to remain mostly anonymous and without accountability –  a community that takes care of its members, but also doesn’t let them get away with murder (or pollution, or exploitation).

I can’t help but wonder, if BP CEO Tony Hayward lived in a beautiful country cottage near Barataria Estuary, whether this oil spill would ever have happened, and, if it had happened, whether the solutions now would be different. And, of course, right now we all love to be angry with BP – as we before loved to hate Exxon. However, there will always be corporations out there that will abuse our people, our places, and everything in them, because their bottom line is profit.

Communities, true immediate communities – when was the last time you chatted with your neighbor? – will hold its members responsible while supporting them. My much loved digital friends can give me tips and suggestions, but they cannot help me take care of my mother or raise my children.

And I know it is difficult to let go of the safe individuality and anonymity provided by our ever-growing cocooning (my mother used to say she didn’t want the neighbors looking in her cooking pot), but the price we pay for the loss of community, and with it the loss of culture is far greater. So, be your community German, American, urban, rural, or suburban, join me in jumping over the boundaries of your individual culture and ask your neighbor how you can help them.

A couple of days ago, I was sitting next to my mother stroking her cheek, when she grabbed my arm, looked me straight in the eyes and said as clear as a bell:

“I want out of here!”

Now, if you’ve read any of my previous posts, you know that Sigrun no longer forms full sentences, that, in fact, she often struggles to get out whole words.

Yet here it was: “I – want – out – of – here!”

At first, I was thrilled to hear my mother expressing herself so confidently, so strongly, so uncompromisingly. Then, of course, I felt sad.

Now anybody who has a loved one living at an assisted living facility has probably heard that sentence, and it rings to the core of our feelings of guilt and sadness about not being able to take care of our family within our family.

However, I know that many of us who have our loved one with dementia at home have also heard that sentence.

And so I want to step away from my feelings of guilt and my pathologically literal mind (must be the German heritage!), and ponder the meaning of these powerful 5 words.

We have moved my mother 4 times since her Alzheimer diagnosis. The first move was into a reminiscence care unit. The second move was only 2 weeks later from reminiscence care to assisted living – she had proven herself higher functioning than initially feared. The third move took place when we all moved from Seattle to Denver. And the last move took her back into reminiscence care in a different assisted living facility.

At every place I heard “I want out of here!” Though she was generally happy, without fail, every couple of weeks she’d say “I want out of here!” And it took me months to realize that these words could take on a variety of meanings. The most dominant and most often recurring one clearly related to the disease. “I want out of here!” meant: I want out of this situation. I no longer want to have Alzheimer.

How often do we – who are not struggling with dementia – find ourselves screaming in our heads: I want out of here! when we are frustrated with the state of things around us – or even inside of us, for that matter? If it were socially acceptable, I bet quite a few of us would randomly pop-up out of our office chairs and yell: I want out of here! Imagine, instead of prairie-dogging over our cubicle walls to see what the others are doing, more and more of us would stand straight as an arrow exclaiming “I want out of here!” Could it be like a little angrier more direct version of Arlo Guthrie’s movement in Alice’s Restaurant?

Another meaning of “I want out of here!” that I have come to know is: I want to take back control of my life. I want to be in charge again. Then there is: I want to go back to a time in my past when I was leading the life I thought I was supposed to lead, when I was young and beautiful and desirable, had kids and a husband, traveled and partied, basically had the deluxe “American Dream” package. And, of course, there is the literal meaning of “I want out of this place.”

Over the years the meanings have become jumbled. Like a toddler, my mother finds herself overwhelmed with conflicting, puzzling, frustrating emotions, and where my 2-year old’s face goes blank right before she starts wailing, Sigrun would exclaim: I want out of here! (Since her more rapid decline over the last year and her increasing loss of words, she, too, now sometimes wails and occasionally even hits.)

Finding yourself in the eye of an emotional hurricane, disoriented, upset, not knowing why, is really not that unfamiliar; certainly not for the females among us who experience something similar at least once a month. Most of the feelings washing over the defenseless dementia patient I can find within myself, generally deep down in my gut. They seem primordial, vague, but clearly overwhelming. And to wrest back power from this impassioned morass it helps to define these feelings. “Give it a name” William Forsythe says in “Things to Do in Denver When You’re Dead.” Because if something has a name, it is less intimidating, easier to deal with. And during the last year, I feared, that my mother had lost the ability to give it a name. Yet there it was: “I want out of here!” And even if it is just “Aaaarrrrgggghhhh!” I will understand Sigrun. I will listen. “Aaaarrrrgggghhhh!” is as good a name as any.

So, that dreaded ghost of dementia pops up in my family’s midst, and I throw myself headlong into all the logistics that come with it. I take care of living arrangements, doctors visits, safety concerns, food needs, financial matters, and so on and so on, and suddenly I have a moment with nothing to do. I’ve just spent days, weeks, months, even years, adjusting to the new reality, thinking about everybody but myself. And now, there’s me. And chances are, I have this moment right after I realize I forgot something.

And there it is, not a ghost in the room, but more like an elephant: Am I showing the beginning signs of dementia? Have people been politely tolerating my lapses?

Over the past days, weeks, months, years, I have scanned my memories of the past, and there were so many “oh” “ah” and “aha” moments, realizing how long dementia had already been a steady companion to my mother. The continuous searching for keys and glasses, the missed appointments, the oddly addressed envelopes, the strangely stored possessions, the decreasing ability to communicate in a true dialogue – many of these things having been going on since I was a rather intolerant teenager who was more concerned about having her own voice heard.

So now, in this moment after I’ve misplaced my keys or forgot about my sons play-date or just monologue-ed at my husband for 10 minutes straight (he truly is an exceptional person!), I begin to wonder… If Sigrun’s dementia started long ago, maybe mine is starting now? It does run in families, and I’ve found myself to be quite forgetful lately…

It is much easier letting go of stigmas and being understanding and compassionate with your loved ones dementia. When I consider that I myself may be developing dementia, I find myself right back where I was with the fear, dread, and lack of understanding about the disease.

The next step is to contemplate the consequences: So what if I have dementia? If it’s ok for my mother, why should it not be ok for me? My sister Fiona reminds me frequently that it is, after all, a race between the mind and the body. One of them is going to give before the other. Which would I prefer: To be in pain as my body bids farewell, or to feel somewhat confused, but mostly pain free as my mind takes a permanent vacation? In the end, much of the sorrow of dementia resides with the family and friends, and not with the patient. And, if I were to develop dementia, maybe I could prepare my family by letting them know that I’m ok with this new path in life…

Then again, maybe I’m just sleep deprived and hyper-sensitized to the issue, and need to put things in perspective:

When I had kids, I had to become a grownup. Now, that my father has passed away and my mother is barely there, I am becoming the “older” generation. Nobody ahead of me anymore. I am on deck – and I don’t even know much about sports!

Ultimately, I need to realize that there are many reasons to be forgetful and I seem to find myself in the eye of the perfect storm:

I am the mother of two small children (Sleep? What’s that?). I am caring for somebody with Alzheimer’s (not a bad reason to be a bit paranoid). I am about to turn 40 (Time to take stock!), and I am trying to be a decent wife while working from home. So, there’s a lot on my plate. And my guess is that there’s a lot on most of your plates.

Let’s be forgetful together and know that it could be for any number of reasons!

There are quite a few scenarios in life, when one becomes the target of a barrage of unsolicited advice. Motherhood, certainly, jumps to mind as the most prominent example. As we become parents, surviving the trials and errors of child rearing, we feel battle-hardened, involuntarily enlightened, full of lessons-learned and to be shared with newcomers to the universe of parenthood. And bursting with all this new information, one is often hard-pressed not to inundate the unsuspecting new mother or father with – well, that barrage of unsolicited advice.

Caring for a loved one with dementia also puts us into a unique group of battle-hardened people. People who want to share the “had I known this in advance” experiences in hopes that they may save somebody else a bit of trouble; or maybe, in order to tell somebody about the struggles we’ve undertaken to show our loved one just how much we truly love them – knowing full well, that the very person this love is meant for no longer understands.

So, with that, here’s my unstructured, unorganized, stream-of-consciousness laundry list of unsolicited advice about lessons learned from the journey through dementia:

1. Get a Durable General and Health Care Power-of-Attorney!

The most helpful piece of advice (and help – thanks, sweet family!) I have gotten in the course of this odyssey was to get a Durable General and Health Care Power-of-Attorney (POA) for my mother – while she was still able to sign one. Make sure the general POA includes wording for financial matters, as well.

The National Cancer Institute defines the durable power-of-attorney as follows:

A type of power of attorney. A power of attorney is a legal document that gives one person (such as a relative, lawyer, or friend) the authority to make legal, medical, or financial decisions for another person. It may go into effect right away, or when that person is no longer able to make decisions for himself or herself. A durable power of attorney remains in effect until the person who grants it dies or cancels it. It does not need to be renewed over time. Also called DPA.

(National Cancer Institute, U.S. National Institutes of Health, www.cancer.gov)

The Family Caregiving Alliance National Center on Caregiving has a great FAQ on durable POAs at: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=434

Their website www.caregiver.org is filled to the brim with excellent information and advice.

I have had to use that power-of-attorney in so many situations that were logistically challenging as they were, but would have been bureaucratic nightmares without the power-of-attorney.

As wide-spread as dementia is, there still seems to be an indescribable ignorance to the handicaps demented people face.

Before I had the power-of-attorney, I almost got dizzy in some interminably circular conversations with credit card reps, bankers, even newspaper sales people:

“I speak for my mother, because my mother has dementia and can no longer make rational decisions about these matters. No, I don’t have a power-of-attorney. No, she can’t come to the phone to discuss this with you, because she has dementia. No, she no longer is able to read the newspaper (use a credit card, work her bank account), and no, she doesn’t want another subscription (credit card, banking services). No, she can’t come to the phone to explain that to you because she has dementia…”

Get that durable power-of-attorney as soon as you can! And get a living will with it, while you are at it!

2. If your loved one is still able to understand, talk with them about dementia. If possible, tell them they have dementia. There still are so many stigmas attached to dementia, that shame, embarrassment, and anger are ready companions to any discourse, even just thoughts about the disease. But pretending everything is just fine can add challenges that may not need to be there.

A long time before my mother was diagnosed, she used to make jokes about Alzheimer’s. Back then I thought that her humor was simply a bit inappropriate. In retrospect, I believe she was already struggling to keep up appearances, divert any suspicions, possibly even convince herself that dementia was nothing for her to worry about.

For many years, as a family, we came up with excuses, justifications, seemingly reasonable explanations for my mother’s scatterbrained behaviors. And many of them may have been true. After all, having three children within three and a half years, will drive anybody close to dementia.

Yet, when I think how much easier things became when we all acknowledged Mr. Alzheimer in our midst, I wish we had talked about it sooner. Instead of working hard to pretend that everything was ok, my mother felt free to rant at the disease for making her life more challenging. When something wasn’t going right, we could all jokingly blame that darn Mr. Alzheimer (to whom I, of course, apologize, since he’s not to blame).

As my mother’s care level increased and she needed to get help performing some of those tasks for which we need privacy or independence to maintain our dignity – such as bathing and eating – , we could always talk about the disease, and she didn’t need to worry that it was her who was somehow not smart enough, not capable enough, not independent enough. I realize that for some families to talk about dementia might not be an option, but don’t be too quick to think that is you. I never would have guessed that my mother would be able to accept the disease. Yet she did. And she has weathered the many many challenges much better for that acceptance.

3. Get in touch with your local Alzheimer’s Association chapter (www.alz.org)!

Not only do they have some of the kindest people who will listen to your sorrows, they also have a great newsletter with community events and updates on new research, as well as a plethora of information. The main website (www.alz.org) will let you search for contact information for your local chapter.

4. Be the squeaky wheel!

My mother lives at an assisted living facility. So I can’t talk about care giving at home. However, after three moves between assisted living facilities, and researching about a dozen or so on each move, I feel like I have a pretty good sense about what’s out there in terms of assisted living and reminiscence care units. First of all, no matter how much you pay (well, except for the $10,000 or more a month facilities) most assisted living facilities are understaffed, and the staff is underpaid. That, of course, means that turnover is high, and you may get to know many different dedicated, but overburdened caregivers during your loved ones stay at such a facility. On the upside, it also means that if you don’t like a caregiver, chances are, they won’t be around in a few months.

Because caregivers are stretched to the limit, things fall through the cracks. I have found myself becoming educated about medications and treatments, because I am my mother’s only advocate. She can’t say if something isn’t working or she doesn’t want something.

After a hip fracture, my mother had to live at a skilled nursing facility for a few months. She had a great nutritionist, a charming activities director, but a horrible director of nursing unable or unwilling to deal with the challenges of dementia, who, hence, was trying to “chemically restrain” my mother. And since skilled nursing facilities can easily write prescriptions, they bombarded my mother with heavy duty medications that were clearly inappropriate for dementia. I was not asked before my mother was medicated and soon had the added challenge of seroquel anger. (More on that in another blog post)

Note to all you wonderful caregivers out there: I hope you will comment on this blog and let us know about the many difficulties of your jobs and let us know how we as family members can make your life easier.

5. Take your loved one out for excursions while you still can.

My mother loved going out for meals, sunbathing, dressing up to go to the opera, or anything that made her feel like she wasn’t trapped at the assisted living facility. She no longer is able to easily leave, and, although we did a lot, I wish we could have done more.

I will add to the list as more things pop to mind. In the meantime, I hope anybody who reads this blog, will feel inspired to add their own tips and tricks.

It takes a village to raise a child. It takes that same community to care for the elderly.

Sigrun Posing for Photographer

A few days ago, on my way to visit my mother, one of her care managers approached me with a request: My mother’s closet is packed full of clothing, and it is difficult for the care managers to keep everything laundered and organized. Since Sigrun no longer wears most of those clothes, the (very nice and considerate) care manager suggested that I remove some of that clothing from my mother’s apartment.

It seemed like a very reasonable request; a request I agreed to without hesitation.

Then, I found myself standing in front of her closet – paralyzed, unable to remove much of anything. There were some blindingly bright pieces of 70s garb, some sheer blouses in all the colors of the rainbow, tight, form-fitting tops and sleek pants; most items clearly impractical for life in the reminiscence unit.

All of this may sound like the wardrobe of Peggy Bundy, but it is the tool chest of the couture magician I know as my mother. For as long as I can remember, Sigrun has been an impeccable dresser – no, more than an impeccable dresser, a woman with style; not a fashionista following every trend, but rather a connoisseur of elegance that lasts. Her favorite designer – Coco Chanel. Remember the pencil skirts with the tight short jackets? The high heels and the cute little hats? That was my mother, and, if she was still capable of picking out her clothes, it would still be her.

So, who am I to steal colors from the palette of Michelangelo? Sneak instruments out of Mozart’s compositions? So what if my Michelangelo started wearing 13 pairs of underwear at the same time? I’m sure they were carefully chosen and matched in color! So what if shoes didn’t always come from the same pair? I’m sure they, too, complemented each other in my mother’s creative mind!

In fact, Sigrun still holds strong opinions on anything that might compromise a perfect ensemble. When I visit my mother, I am always acutely aware of what I am wearing. As I stand in front of the entry to her assisted living place, I look myself over, regretfully discovering the snot stains on my jacket from my children’s runny noses. I rediscover the little hole that I’ve been meaning to fix in my sweater. And, oh yes, there’s the pimple that’s been forming on my forehead.

And, sure enough, as I then sit across from my mother, the lady who now is confined to a wheelchair and no longer is able to intelligibly utter a sentence, the lady whom I love so dearly, her outstretched finger comes across the table and finds its target infallibly, pointing out the hole in my sweater, or the snot on my jacket, or, unabashedly, the pimple on my forehead. Her facial expression seems to indicate a caring, but concerned recognition that I simply can’t measure up to her understanding of style.

Another Pose

And indeed, I can’t. As a member of the sandwich generation, juggling 2 kids, a mother in reminiscence care, and work, all the while trying to also be a reliable, loving partner to my wonderful husband, I feel I have plenty of excuses for the snot, the hole, maybe even the pimple! Then again, how did my mother do it? She had three kids, worked part-time, traveled, yet always looked impeccably groomed.

Drifting into the oblivion of dementia, my mother continues to set an example for me, not to let myself go, to take pride in my appearance, no matter what the setting, no matter what my mental state may be (and with sleep deprivation and toddler distraction, it often times resembles the early stages of dementia).

Mental note: fix that hole! (since I can’t do anything about the pimple or the snot)

For as long as I can remember, the humorous value of bodily functions has been deeply ingrained in my family. Whether someone starts to giggle uncontrollably as an odoriferous cloud spreads around them, or anything, anything at all, hints at the subject of farts, my family soon has tears of laughter running down their cheeks.

Strangely enough, we’ve always prided ourselves on our intellectual properties, our higher reasoning. Yet, relate a story involving someone passing gas, and all that brainpower disintegrates into a sobbing-with-laughter mess.

In the world of dementia, it can sometimes be a struggle to find things to talk about, let alone to laugh about. We lose so many ways to communicate with our loved ones, one after another, that it becomes more and more difficult to experience moments of closeness and understanding.

And so it was with unrestrained joy that I discovered that our family’s holy grail of humor not only survived in my mother, but flourishes. Sitting next to her as she lets one rip, and then breaks out in a cascade of laughter has me hugging and kissing her and laughing along with her.

In a way, dementia can be quite liberating. Tossing aside societal conventions for a roaring laugh about a fart that makes my mother’s wheelchair tremble is absolutely worth the multitude of offended stares it attracts; not to mention my 4-year old and 2-year old’s excitement to have a partner in crime in “stink-bombing” an entire room.

Over the course of the last year, my oldest sister has been working hard to clean out our parent’s storage unit. One day she found a cartoon of a little boy blowing with great effort into a trumpet; the only result of the efforts being a small music note hovering next to his behind. (I would have liked to post the image here. However, I couldn’t track down the copyrights, so thought better of it. If any of you know who holds the copyright, please, let me know, and I’ll see whether they let me post it.)

I have since taped that cartoon to my mother’s closet where she can see it from her bed. And, so many times when I’ve visited her, I’ve seen her studying the image with a smirk on her face and a twinkle in her eyes.

Dementia for me (in my mother) has been a journey of discovery, of unexpected twists and turns, many sad, but also a great many happy, enriching, and down-right funny. You never know where you might find a connection, some closeness, some shared memories; and it doesn’t pay to be picky and choosy. I intend to make every one of those moments count.

On December 17^th, 2005 my father died. He was a sharp witted man of the World War II generation, happy to tell many a fantastic tale (some quite fictional, I’m sure), generous in spirit most of the time, and a man who guarded his privacy as a treasure never to be touched.

He also protected the little unit he and my mother, his wife, had become after all three daughters had moved out.

I, the youngest of the three, will turn 40 this year, and I cannot claim that I was completely naïve to my mother’s dementia. Yet it felt easier knowing that my father, although in his eighties was standing watch, when there seemed something not quite right with my mother – something that hadn’t felt right for many years already.

When we came together as a family to mourn my father, we instantly knew that my mother would not be able to continue living in the apartment they had shared. We also knew that we needed to get my mother diagnosed, as the word “dementia” started to cross our lips more and more frequently. There were many things we knew, and oh so many more we had no idea about.

It took a few months to get the definitive diagnosis of Alzheimer Disease, and another few months to get my mother who could still be considered to be in the early stages into an assisted living facility with dementia care (the politically correct term these days seems to be “reminiscence care”).

That time now seems an eternity ago. Many tears have flown since, many long conversations between the sisters reminiscing about the past, speculating about when it all may have begun, have taken place; many (web-)pages have been perused to learn about this tragic disease, to understand beyond the stereotypes, what lay ahead.

So, now you’re saying, why the heck is your blog called “Dementia Days – The LIGHTER Side of Loss”? Nothing light so far. Well, you’re right, what I actually want to focus on in this blog are the moments of humor, the lighter side of the loss all of us encounter who have a loved one with dementia, who care for somebody with dementia, and also those who have dementia. The literature is filled with depressing facts and figures. Many moments around dementia are intensely sad. So to balance out all of the tears we have shed and frustrations we have encountered, I am writing to share the laughter, the smiles, and maybe even the sparkles in the eyes when smiling doesn’t come easily anymore.

The first entry simply served to give you a quick background on my experiences with dementia. I promise to delve into some of the fun my mother and I are still having now that she is in the late stages in my following blog posts.

And, of course, your comments, be they humorous or not, are gladly welcomed.

I’d also like this blog to be a place to share knowledge, wisdom, tips and tricks we have picked up along the way; information that travels better by word-of-mouth (or in this case “word-of-blog”).

I dedicate this blog to Sigrun, my mother, the woman who has lived such a full life that even Alzheimer Disease can’t stop her radiant person.