Dementia Days

I have been silent for a long year. Sigrun has been gradually, almost imperceptibly slipping away. At first, she started speaking more quietly, then less, and now only an occasional barely comprehensible word  makes its way past her lips. Her lovely smiles are now so rare, that care managers and family celebrate when we are lucky enough to be present. For a while she seemed to be in a free fall losing weight – all the way down to 77 pounds. Then for a few months, she started eating again, gaining weight and celebrating something of an Indian Summer.

Of course, this blog’s subtitle is called “the lighter side of loss” – and I think for that very reason, I have been having a hard time writing. The joys of Sigrun have become so basic, so elemental, that it is hard to capture them in a well told story. How do you write about laying your head on your mother’s chest, just to feel her skin and recall your childhood – nuzzled against her neck? How do you capture the joy that a gentle squeeze of your hand brings?

Sigrun still makes eye contact, and I know that during her remaining time with us, there will never be a moment where I can say she is no longer here. Whether it is the questioning expression in her eyes, that tells me she is still trying to understand, or the growl with which she communicates that she wants to hold the fork herself, or simply her gentle breath that I feel as my head is barely lifted by her chest.

And so I know, that when the time comes, I will be devastated, as the last bit of rope from the losing game of tug-of-war I’ve been playing with this disease will slip through my hands, and with it my mother will be gone.

I believe that as family and care givers, we spend much time postponing our emotions and letting the management of logistics keep us distracted. Once the diagnosis of Alzheimer’s comes in, we realize, it is no longer about us, but about caring for the individual who is at the mercy of whatever area of the brain is being attacked. Yet I am also starting to understand that it is just as much about us. We who are forced to let go of our loved one bit by bit, need to grieve little by little as we experience the gradual loss, but also deeply and continuously for the whole person that is no longer with us.

Yesterday, while preparing lunch for my children, fielding phone calls for my work, and planning the upcoming visit with family, I stopped to think of my mother. I contemplated her existence at the memory care unit, pictured her sitting in one of the lounge chairs vaguely concerned, vaguely happy, very confused. And I considered that that is her life; that, not just while I am thinking of her or visiting her, but all the time she is relegated to a reality she never would have chosen. Every moment I don’t think of her, am not there with her, am not there for her, she still is continuing to languish in a world she no longer understands.

And, of course, immediately, I felt guilty for not being at her side all the time to help her navigate the stormy waters of dementia, to cheer her up and embrace her with all the love I feel for her. Certainly I know I cannot give up my life to become my mother’s 24-hour a day caregiver, but that does not keep me from feeling guilty that I don’t.

Yesterday, also, my husband told me about the recent study of college students at the University of Michigan, which found that members of the Generation “Me” are 40% less empathetic than college students from the ‘80s and ‘90s. And I am beginning to wonder where this decrease in empathy is coming from? My cousin (in her 60s) spoke of her generation as the generation of inflated egos, where parents told their children how wonderful and fantastic they were. But don’t we all do that? And didn’t those kids turn out to be quite compassionate? Could it be that we simply don’t have enough time to put ourselves in someone else’s shoes?

On the third floor, in my mother’s reminiscence care unit, residents are quite aware of each other – whether it is the ladies halting their nonsensical conversations to observe a good-looking young man cross the room, or one resident snatching the pillow from under another’s sleeping head, or even the few gentlemen jockeying for the most advantageous position among the ladies. Sometimes, you can even see a resident helping another resident, picking something up for them that has dropped on the floor, or covering somebody else up with a blanket, being empathetic. (Sometimes, of course, they actually are in someone else’s shoes.)

I cannot put myself in my mother’s shoes at all times, although I am well aware that only such a permanent commitment could give me the hope of understanding the challenges she is facing. However, I sincerely hope that getting glimpses into her life when visiting allows me to maintain the empathy and understanding I need to stay connected. And maybe those are the key words: to stay connected. Are we as a society to disconnected to be empathetic? Or are we not empathetic enough to be connected?

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.

Today my children received a letter from their cousins – not an e-mail or a voice mail or some other digital form of communication, but rather some carefully thought-out drawings, some letters, some numbers, all assembled artfully with crayons and pens on real paper, sent in a real envelope – and today, deposited into our mailbox.

There are many things in our society that, with the development of new technologies, have changed for the better. However, I belong to the group of people who lament the loss of letter writing as a form of communication. Many values rapidly disappearing among us are represented in a well written letter: It takes time to construct, thoughtfulness to express what is important, more thoughtfulness to leave out what is not, and calm and quiet to put it all down on a piece of paper, not to mention the skill of writing (or drawing – in the case of my kids and their cousins) so other people can understand and appreciate the missive. There is delay of gratification and strengthening of patience when waiting for a response.

In the early nineties, before wide use of the internet and e-mail, I spent a couple of years in West Africa as a Peace Corps volunteer. There was a phone at the post office in the regional capital, about 50 miles from my village, and, about once a month, I’d arrange a call with my parents. Other than that monthly call, all communication with friends and family back home took place via letters. As many of you can imagine, a Peace Corps volunteer has plenty of time to fill (for a great book on this subject, check out “The Village of Waiting” by George Packer). With a longing for home and the calm to dedicate myself to each letter for several days, I would pour out my heart over dozens of pages. Not all of my letters made it home, but my mother and father dutifully collected all they received. And now, upon my father’s death and my mother’s dementia, I once again hold these letters in my hands.

In his responses, my father mastered the quantity of letter writing. Every day he went to work, he’d compose a one-page letter to his youngest daughter – me – during the entire time I was away. These messages mainly consisted of weather reports, some events in the family, mostly what one would today consider “touching base.” However, I will never forget the dedication it must have taken to keep up this connection.

My mother mastered the quality of letter writing. Though not as frequent as my father’s correspondence, my mother’s letters were filled with emotion, caring questions about what I had written, comments about the pictures I had sent home. In many ways, I may have been in closer contact with my parents during this long absence from home than I had ever been before.

Now, as my sisters and I sift through the myriad of boxes of memories, we are, of course, finding an abundance of letters: letters from my father’s mother to him while he was traveling as a bachelor, letters from my mother to friends in former East Germany, letters from cousins on the West Coast, letters from colleagues across the globe, and many, many letters my mother has begun, but wasn’t able to complete because Alzheimer’s got in her way. Finding one of these letters that begins “Dear Alana, …” and is followed by a beckoning blank page demonstrates how so much can be expressed with so little. I want to say, “I know, Mutti. I love you, too!”

Of course, then there are the other “letters” my mother has written since the onset of dementia. The many tribulations that follow the path of dementia trapped my mother in a cycle of anger and paranoia over lost and misplaced items, shining a light of suspicion on anybody in the vicinity of her possessions. Missing music CDs clearly must have been abducted by her husband, my father. Lost keys may have been stolen. Drawers and cabinets never looked the same as how she left them. So somebody was “messing with her stuff.”

When I was a child and things were misplaced in our house, my mother jokingly referred to “the ghost with the name ‘nobody’” as the culprit. In the years of Alzheimer’s, many of her notes were addressed in a similar way: “To whoever has been taking my CDs, Don’t. I really need them.” Or: “Don’t touch my things. They are mine.” It has been over a year now since my mother was able to write these notes, and I miss them. I miss the feisty woman who would battle that ghost named “nobody.”

So, I encourage my children to keep up their correspondence with their cousins; and I hope letters will continue to be written, whether they are addressed to family, friends, pen-pals, or a ghost named “nobody.”

Sigrun, my mother, my Mutti

Last Sunday was Mothers Day and images of the American Dream family of husband, wife, and 2.5 kids, not to forget the yellow lab, have been flashing across our TV screens, are plastered on billboards and into our mailboxes. Flower bouquets and chocolate boxes are becoming second tier to the more high tech higher profit margin gifts of electronic book readers and robotic vacuum cleaners – the schizophrenic message to those super-moms apparently being that, though they don’t have time to turn a page in a real book, they ought to read several thousand at the same time, while their Jetsons housecleaning device will make them the Martha Stewart they have envisioned (not the one in the orange jumpsuit, but the one in the million dollar mansion).

I would like to take the time to say thank you and honor us real moms; moms who come from all walks of life, people who are mothers to their own mothers and fathers – and, of course, these can be men or women! – moms who are alone in their quixotic efforts to fend off the marketing machine telling them what they ought to be, moms who share mom-hood with another mom, dads who are alone and thus have to be moms, too, dads who are together and share mom duties, so many kinds of different moms, so much richer than the Stepford wives of the media. Thank you, all of you moms!

And finally, thank you to my own “Mutti” (mom in German), a woman who loved turning a real page in a real book, a woman who continues to bring joy to her daughters with merely a sparkle in her eyes.

Yesterday, my husband and I carried the last remaining furniture pieces out of my mother’s big storage unit. It was a momentous occasion, the end of a story of stuff that has been going on in my family for a very, very long time.

I grew up in Germany, where my father, originally from Washington State, and my mother, originally from Berlin, consolidated their possessions in a house in the suburbs of Munich. My father had spent a great deal of his life traveling. So, masks and paintings on the walls, bowls and statues in the shelves reminded him of his footloose and fancy-free bachelor days. He also was quite the bookworm and instead of walls, we had bookshelves in many rooms.

My mother had lived through most of World War II in Berlin, an experience that left the child survivor with a passionate need for security, security as an adult often sought in stuff – things with which she could outfit our little nest, items that would show the world in Scarlet O’Hara’s words: “I will never be hungry again!” It is quite possible that Sigrun could have been categorized as an oniomanic. However, I believe my mother never felt much regret for her purchases, but rather, like a child given a special gift, enjoyed and appreciated each one of her acquisitions.(If you have read the post “Coocoo for Coco” you know that she took advantage of her extensive wardrobe.)  Nor did she buy only for herself. She loved shopping for her family just as much, if not more.

I sometimes wonder whether the pervasive need of the WWII generation to collect sweeteners – which, by the way transcends cultures: in Germany, my aunt collected sugar cubes – is linked to the memories of less stable times. In the US we might consider the link between the Great Depression and Sweet’N Low. And, if there is a connection, what will our generation be collecting when we feel our life slipping away from us – computer chips?

But back to our story of stuff: So, my parents had filled a house with two lifetimes of things. Then my father passed away and my mother was diagnosed with Alzheimer Disease. And three daughters, who until then got to be the footloose and fancy-free generation, had to step up to the plate. My oldest sister spent an entire month sifting through the Berlin apartment where my parents had since moved. (How they managed to cram the contents of an entire house into a two bedroom apartment is beyond me.) Everything was packed up and transported to a storage facility in the US.  That storage facility flooded and everything had to be moved to another unit. Then we moved to another city and everything had to be transported to yet another storage facility. And, over the course of the following year, brave daughter #1 sifted once more through all those possessions, all those memories, all that stuff.

Out of three units, she chiseled two; out of two finally one. All that we are left with now is my mother’s memory care room and a small unit of things we are keeping.

I cannot count the amount of times we swore never to do this to our children, to rid ourselves of our proverbial sweetener collections before it is too late, to borrow books from libraries, not create libraries in our own homes, to only keep what we need. Few lessons imprint themselves on the brain as much as the ones that are paid for with blood, sweat and tears. And that is something else difficult to count: the many tears, the laughter, and the bruised knees we shared in the storage units, marveling at two lives spread out in front of us in boxes and piles.

P.S.: Although only tangentially related to this post, “The Story of Stuff” (www.storyofstuff.com)  is an excellent 20-minute animation that, if you haven’t already, you should take the time to view.

P.P.S: If the true price of stuff were calculated including storage, transportation, frustration, and spent energy, and that price were listed when you bought the items, how much less stuff would the average person accumulate?

Sigrun is happy.

For years now, I have explored a multitude of avenues to increase the joy in my mother’s life. In the earlier days, we went shopping – always a winner – we went out to meals, we redecorated her apartment, I have taken her to all the various doctors who would make her feel better. Then, in the later stages, we would sit and chat more, laugh at our bodily functions, I would smile at her to get her to smile back.

And always the underlying discontent, sadness, and disappointment with a life handicapped by Alzheimer Disease would come to the surface again. It was never very far, simmering below the surface, covered up by both my mother and me in a tacit agreement not to dwell on something neither of us could change.

Then, in the last few weeks, my mother has taken a turn – maybe for the worse within the disease, but certainly for the better within her disposition. No, disposition is the wrong word. It is too shallow. Her change goes much deeper. It seems that Sigrun, my mother, has let go of all that discontent, all the worries of life with or without Alzheimer’s, and down to her core, has decided to be happy.

What I do or don’t do doesn’t matter as much anymore (and probably hasn’t mattered nearly as much as I often led myself to believe). My mother is independently, deeply, pervasively happy.

I am not sure whether this is a phase within Alzheimer’s, a step towards the inevitable end, or a unique moment in time for Sigrun. And it really isn’t all that important to define it. As if to inspire me to stop worrying, Sigrun’s happiness is a gift to both her and me.

As a mother, I am tempted to draw many parallels between my own mother’s mental (and physical) decline, and my two toddlers’ burgeoning intellect, their emotional development, and their growing independence. So with this new found treasure of joy in Sigrun’s life, I am considering my toddlers’ complaints, whines, and worries. Somehow, my mother found the strength (or a loophole in the terrible contract of the disease?)  to let go of that dependence on others for ones own emotions. And that forced me to reevaluate my necessity as “joy bringer” in her life and in my children’s lives.

My husband has hinted at this for many years, and sweet as he is, has never given up nudging me in the right direction. But we all know, it sometimes takes an unpredictable, unique event to break us out of our routines and habits. And so, I feel energized to inspire my children to become more self-reliant, to learn to see themselves as the person in control of their emotions. (And, trust me, I know they are still little – 2.5 and 4.5 years now. I also know, that much of their whining isn’t due to their inability to figure out their problems. Much rather it is due to the fact that their mother has been hovering and waiting to solve any issue that arises – partly in a misguided desire to help them, partly for the satisfaction it brings to be able to solve somebody else’s problems.)

And, as my mother has learned in her 70s and in the midst of Alzheimer’s, I, too, need to wonder how much I still look to other people to determine my emotional state. As a wife, mother, daughter, sister, contractor, part-time student, I sometimes have a hard time finding Alana – that’s me – unencumbered by any role, and thus treat myself well enough to find my happiness within myself.

How often do we let somebody else ruin our day with some inconsiderate deed? The person who steals our parking spot; the stressed customer service consultant who blames you for whatever issue you called them about; the tired spouse who didn’t choose his words carefully enough to explain one of his needs. Most of the time none of these people intentionally mean to hurt you. And given a rational response, they are willing to re-approach the situation.

So, with the gift of Sigrun’s happiness, my new determination to be strong (and not just helpful) for my children, and a resolution to be good to myself (and thus to the people around me), I declare this year (and hopefully many to come) my year of happiness. (Anybody who wants to participate is cordially invited .

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.