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?

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 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.