Dementia and Memory: Out of Time, Out of Mind II

Mount Hope Angel

Mount Hope Angel

This second part of the post focuses a bit more on the qualitative aspect of memory – memory as meaningful life activity, not just a necessity of daily functioning and detail management that holds together moving parts.  I will include the quote from James Hillman I used in my first post:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.  In case you’re wondering about whether I am promoting some Romantic view of memory or denying all the recent advances in neuroscience, I would unequivocally state “no.”  In fact, a favorite of mine in that discipline is Dr. Norman Doidge’s book published in 2007 entitled The Brain That Changes Itself.  Particularly instructive for purposes here is his chapter entitled “Turning Our Ghosts Into Ancestors,” about psychoanalysis as a neuroplastic therapy that helps a sixty-year-old man recover long-buried memories of the death of his mother (when he was a small child) so they could be transformed and improve his relationships and life.

I think part of what Hillman is talking about is that quality of memory, which often gets neglected in our present culture that glorifies the person as a right-bearing agent of our own destiny, valued for capacity, independence and measurable productivity.   This makes me think of Massimo Cacciari’s book The Necessary Angel.  I find intriguing what he says about our space-filling tendencies of this modern obsession  we have with chronological time, especially where he observes that “the greatest idolatry is the cult of the has-been of the irreducible it-was.”   Cacciari at 51.

If this obsession of the factual, objective or “forensic” memory is idol-worship of the “cult of the has-been,” and indeed widely and universally worshipped indeed as “chrono-latry,” then might the recognition that letting go of details that do not serve life review and accumulation of wisdom be an appropriate response to that greed, of releasing the power of the idols?  If we as human beings are more than our personalities accumulating and exchanging our experiences as a form of “currency,” then recognizing this and getting past the worship of the idols of chrono-latry would look like progress!

One very important aspect of the quality of memory for many elders is as a part of life-review, of integration and wisdom acquisition and consolidation.  Another of the qualities of memory is kairos.  It strikes me that our generation’s dependence on smartphones means that many of us need to memorize fewer of the important operational details of our lives.  This is of course liberating, but it is also a trade-off.  No, I won’t go astray here to discuss that issue!  Suffice it to say that the term “memoria” in the Western classical tradition is based on the Latin term for memory.  Memoria was one of the five canons of rhetoric, which grew out of oratory.  The classical orators used no notes, let alone Power Point slides!  I add this point to draw the connection between memoria and kairos – I’ve blogged about it previously.  Kairos being the right time, the opportunity, based on an attunement to the right time to recall memory – memory being identified in the Ad Herennium as “the treasury of things invented.”  So perhaps we might come to more closely examine and question our relatively recent and very narrow definition of what is memory and look at the historical notion of memory in its broader context.  This broader view of time in both qualitative and quantitative aspects will certainly diminish the power of the idols of chronolatry.

Yes, this reminds me of the Steely Dan song, Time Out of Mind – you can listen to it here.  This is life review, traditionally a province of poets to write about the letting go at the end of a life and there is thankfully much wisdom from that quarter.

From stanza IV of Dejection: An Ode, by Samuel Taylor Coleridge:

… we receive but what we give,

And in our life alone does Nature live:

Ours is her wedding garment, ours her shroud!

         And would we aught behold, of higher worth,

Than that inanimate cold world allowed

To the poor loveless ever-anxious crowd,

         Ah! from the soul itself must issue forth

A light, a glory, a fair luminous cloud

                Enveloping the Earth—

And from the soul itself must there be sent

         A sweet and potent voice, of its own birth,

Of all sweet sounds the life and element!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Aging, Meaning and Memory

Medicine Bow National Forest

Medicine Bow National Forest

This is another contemplative post – so please forgive me.   I am preparing for a retreat on this exquisite topic of memory. . . . !   Since I find the topic of spirituality and dementia fascinating, I have been reading “Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work,” written by Elizabeth MacKinlay and Corinne Trevitt (published in 2012).  I especially enjoyed reading chapter ten “Grief is part of Life,” that speaks to much of my estate planning work with elders and their loved ones.  It begins:

Loss of relationship either through death or through geographical separation is closely tied to the meaning of life.  Meaning does not cease to exist because a person is dying; in fact, it is in facing death that it can be possible, perhaps for the first time, to see the meaning of one’s life.

Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work at 171.

Is our memory informed by our experiences and accordingly limited to our perception alone, or do we have the ability to further construct the memory so as to make it a memory of our whole being, as opposed to some event recalled which can be verified by another?  Therein lies some of the quantity versus quality aspects of memory . . .  but I am focusing today on this topic of memory in the context of aging and meaning.

So much of our important grief work is pushed aside in our death-denying and youth-glorifying culture.  I think this is a big part of the anxiety and depression and despair that so many of us struggle with in our culture because we do not see or otherwise recognize the inherent meaning of loss of youth and dying and death.

Memory is a phenomenon that is both individual and collective.  So to whom does memory belong or to whom should it be attributed?  What part of cognitive decline implicates memory and what is it that we are talking about when we use this term “cognitive decline?”  This can of course be age-associated and within “normal” limits or it can be identified with a disease process, such as the course of dementia of different types.  How do we distinguish the aging process that occurs naturally and that leads inevitably to our death from that process associated with a disease?  This may seem like a straightforward question – but I think it is far from that!  When aging becomes inextricably linked with decline in a way that is viewed as a disease process, we are essentially denying death, killing it off as the culmination of life and viewing the whole aging process and our mortality as a disease, some kind of shortcoming in our biology. If you think I am exaggerating about his, do a search on Aubrey de Grey and his so-called longevity science. . .

Dementia can further complicate a grief process as well.  Even the term “anticipatory grief” sometimes used for grief for the loss of a loved one with dementia before they die – the loss of relationship and the outward self – implicated the complexity of the grief process and the context for the grieving of surviving loved ones.

So now I will turn to the third aspect of this post’s title – memory – to connect the aging and meaning aspects.  What is memory?  Aldous Huxley wrote that “every man’s memory is his private literature.”  In “The Life of Reason,” George Santayana stated that “memory itself is an internal rumor.”  In this respect, we could say, that the memory belongs to the person.  But what about the memory that we share – isn’t that memory too?

What is it that we see and that we call memory?  In “The Marriage of Heaven and Hell,” the poet William Blake observed “If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”

So does memory free us from the constriction of our lives or does it enslave us to our experience of things past?

It seems that once again, I have asked far too many questions than could be answered in a blog post (or perhaps even a lifetime?!) and with that said, I’ll conclude with Friedrich Nietzsche’s observation that “the existence of forgetting has never been proved: we only know that some things don’t come to mind when we want them.”   Yes, there will be more on this topic . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

Dementia, Music, Identity and Memory

 

Lantana and Friends

Lantana and Friends

 

Recently my colleague Kristin D. mentioned an NPR story about the Sundance award-winning documentary film “Alive Inside” – she knew I would be interested in it and I did get a chance to see the film at Chez Artiste.  I enjoyed this movie about music that transforms persons with dementia on several different levels.  If you’re curious about it, take a look at the video clip on YouTube that features Henry.  Henry is a resident at a skilled nursing facility (SNF) a/k/a “nursing home” who was, before getting headphones and an iPod loaded with some of his favorite music, mostly withdrawn and typically lost inside himself.

One of the music excerpts featured in the film is a song by Cab Calloway. This clip is a fave of mine (it’s got some pretty tight dance moves by the Nicholas brothers) and the song was covered by Joe Jackson in the 1980’s.  I grew up listening to my parents’ favorites: Ella Fitzgerald (who sang some scat from time to time), Duke Ellington and Oscar Peterson.

This film resonated with me on several different levels.  First, I have personal experience with the sort of “time travel” that music can perform for someone with dementia.  In a post I published about sixteen months ago, I recounted an experience I had while working as a volunteer “para-chaplain” in a SNF.  I had traveled to a local SNF to lead a holiday service for some residents and because I was lucky enough to be accompanied by a guitarist, at the end of the service I sang an old Yiddish song called Oif’n Prippitchik.  About midway into the song something very interesting happened.  One of the residents who attended was a woman with very advanced dementia who, it was reported to me later, had not spoken in over a year.  She started first to hum and then sing along with the song.  She spoke about her grandmother.  The song had transported her right back to a happy memory of childhood, when her grandmother had sung that song to her.  By the means of music, hearing that melody – she was moved in a sort of time travel.  I was most certainly moved witnessing that event.  Another story of music as a means of transport for the spirit comes to mind, it is from Megory Anderson’s book Sacred Dying.

A basic premise of the film is that people are not human machines.  Often what we see on the outside – when someone is old and frail and seems to have lost so much capacity to be the person they once were – is not the real picture or a complete picture.   Even when we see a loved one or a stranger in such a situation, we might shrug and say to ourselves “he’s not the same person anymore” or we may grieve for what that person was and doesn’t appear to be any longer.  We focus on the losses and often ignore what is left, however difficult or challenging it is to recognize.  It is often difficult to see a person there, who remains – despite the label of a diagnosis or condition that changes them.  Doesn’t all of life change all of us?  It made me think of Tom Kitwood and his legacy of person-centered care, based on the idea that people with dementia have much to teach us.  Yes, there’s a blog post I’ve written about that as well.

Whatever it is, it is the being, the timeless in us (identified generally by the neurologist Dr. Oliver Sacks as a part of the brain that is often left intact by dementia’s onslaught and ravages elsewhere)) – that is the place where music reaches through, past all the mechanical breakdowns and plaques and tangles of dementia, of Alzheimer’s or some other variety of dementia.  In the film, it is apparent that the music’s effect on the residents is to re-animate them.  The music gets through in a way that other communication cannot and the music helps the residents re-member, to inhabit their bodies and lives in ways that are astonishing.  Our basic human need to help others who are suffering and withdrawn is met by the residents’ responses.

After I saw the movie I wondered – should our end-of-life preferences, as stated in an advance directive or other documents, list our favorite music choice?  Perhaps a line on the form would ask: what music would you like to hear if/when you get dementia and become remote?  I know the music preference is sometimes done for memorial services . . .  but why wait?!

Perhaps I will write more in the coming months about the wisdom of aging, aging is what we are designed to do as adults – so why is it that our death-denying and youth-glorifying culture diminishes this process and its mysteries, this important stage in life that many of us hope we are lucky enough to encounter, enjoy and pass through?  Does our American culture’s emphasis on individuality and the capacity-focused, independence of the “rugged individualist” sometimes hamper our acquisition of wisdom or does or culture simply place a lower value on it . . .  because wisdom often comes with age and experience?  Here’s an interesting article in The Economist from a couple years back with some insights about culture and wisdom.  Yes, this post has many rhetorical questions!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

The Music of Family Relationships

It’s springtime somewhere, but definitely not in Denver this morning where the snow from Monday’s storm has melted only a little.  I got a blizzard alert on my iPhone at about 7:30 this morning!  It’s coming down right now.  We do need the moisture and I, for one, am not anxious to get started on the lawn mowing anytime soon. . . .  So here’s a picture of spring that I took last week in Ireland.

For all of you skeptics (or people who have been to Ireland before) the weather was beautiful and I took many pictures with visible blue sky! I took this picture on the grounds of Glenstal Abbey, where I was lucky enough to spend several days in a warm and welcoming Benedictine community.  I took this picture after walking back from a visit to Mass Rock.  There Irish soprano Noirin Ni Riain told our group about the history of the Mass Rock. She alo sang to us and finished by leading us in song.  She has an amazing voice and her music not only speaks to the soul, but moves it.  I purchased three of her CD’s when I was there and they are all available from Sounds True in Boulder.  Her songs are sung in Irish, but I find that the most moving music is not in my mother tongue of English.  I’m also thinking of Gorecki’s Third Symphony which you can listen to part of it (with beautiful visual accompaniment) here .  My favorite is the original million-seller with soprano Dawn Upshaw.

Music and spring and travel. . . .  That leads me also to an experience I had some years ago when I was visiting a local nursing home in my capacity as JFS para-chaplain.  I was there to lead a service and because I was lucky enough to be accompanied by a guitarist, I sang an old Yiddish song called Oif’n Prippitchik.  About midway into the song something very interesting happened.  One of the residents who attended was a woman with very advanced dementia who, it was reported to me later, had not spoken in over a year.  She started first to hum and then sing along with the song.  She spoke about her grandmother.  The song had transported her right back to a happy memory of childhood, when her grandmother had sung that song to her.  By the means of music, hearing that melody – she was moved in a sort of time travel.  I was most certainly moved witnessing that event.  Another story of music as a means of transport for the spirit comes to mind, it is from Megory Anderson’s book Sacred Dying.

So this post is about connections I suppose, and the beauty of writing blog posts is that I can incorporate things like . . . . a bumper sticker that I saw this morning on my way to work.  It read “love lasts longer than life.”  I nodded in agreement.  This post is also about new varieties of living arrangements in this country, which hearken back to some very old traditional arrangements.  I thought about the post after reading an article about it in the April 2013 AARP bulletin.

The title of the April Bulletin’s article is “Saving Money by Living Together,” and it is about money saving, but I suspect that the approximately 51 million Americans who live in a house with at least two generations in a single home, and many of these most likely have three generations, are enjoying more than just money savings from the arrangement.  The money savings factor in substantially for caring for an elder parent, and the arrangement also give an adult child or children the opportunity to give back to the aging parent some of the care they received from childhood.  This can be a beautiful way of modeling productive multigenerational relationships for young children.   I think it also can foster a productive stage of elderhood for many grandparents, a topic I’ve blogged about previously.

One of the biggest challenges that we face as a society is how to take care of the burgeoning number of elders, some of whom have meager savings and many whose savings have simply run out over the course of a long number of years of paying for health care not covered by Medicare and costs of living in retirement.  I sometimes hear the offhand lament “we don’t take care of our elders in this country,” to which I often quickly respond with the numbers of elders and the fact that the vast majority of those elders needing care receive some or all of their care from unpaid family members.  One of the side effects of longevity is reworking family relationships to support elders in their later years.  As an estate planning and elder law attorney, there are a number of legal arrangements that an individual and family can put in place to manage the legal aspects of these often complicated financial, medical and emotional considerations.  In a multigenerational housing arrangement, it is good to start with a plan.  I liked this article’s list of tips for making such an arrangement work which include:  discuss expectations and responsibilities like financial and privacy issues; talk about parental and filial (adult child to parent) responsibilities; check zoning restrictions about renovations for attached dwellings; and share the responsibilities.  I would also add that it might be wise to have a regular place for the family members to meet all together to ensure things are working and so any conflict can be managed productively and not allowed to proliferate.   Some of my clients have made such arrangements and they are usually mutually beneficial.  It is interesting to note the change in structure that economic and age-related considerations can have for families – for so many of us, it brings our dear ones closer to us.

©Barbara Cashman     www.DenverElderLaw.org

 

 

 

What does living with Dementia Look Like?

I recently read a blog post written by a woman in Florida (she blogs under the name “stumblinn”) who has been living with young onset dementia for fourteen years.  Her post of May 8, 2012 was entitled “Dementia and spirituality” and you can read it here .  She writes

I am glad that I have never seen myself as a victim of or suffering from dementia.   Having dementia is not a choice for me, but not suffering from it is.   We suffer when we resist what is, see what happens to us in life as unfair.   When we remain aware at all times that everything that happens is an opportunity for learning and spiritual growth, then there is no suffering.    (That does not mean there are no challenges to face as without them, there would be no growth.)

I found her comments instructive.    It reminded me of an article I ran across a few years ago published by Baylor University.   I liked this article because it considers dementia in the spiritual context and asks “what is it that makes us who we are?”  It is illustrated with a picture of a quilt to demonstrate how the story of each of our lives is connected to others’ lives.  Dementia may rob people from remembering their “story,” but others can help them remember by reinforcing each individual’s uniqueness and honoring the person’s “be-ing” not just their “do-ing.”   I’ll quote Rabbi Abraham J. Heschel’s comments at the White House Conference on Aging, back in 1971:

Older adults need a vision, not only recreation.

Older adults need a dream, not only a memory.

It takes three things to attain a significant sense of being: God, a soul and a moment.  And the three are always there. 

Just to BE is a blessing, and just to LIVE is holy.

The Alzheimer’s Association has a list of resources (articles, books videos, etc) under “Spirituality and Dementia” that is available here.

The U.S. has recently declared a “War on Alzheimer’s”  and some commentators are optimistic that Alzheimer’s Disease may be treatable by 2025 – read an article in the April 2012 Scientific American here,  but while this focus may prove successful to combat and prevent in the future there are many people – both individuals and families who face many different types of challenges right now.  This is why I liked stumblinn’s post.

The World Health Organization  issued a news release on 4/11/12 under the title “Dementia cases set to triple by 2050 but still largely ignored”    and essentially recommended that dementia public awareness and diagnosis needs to be expanded beyond the eight nations who currently have national programs to address dementia.  One of the topics covered in the release was providing more support to caregivers.    In this country, we need to continue to expand our understanding of people with dementia as people first, not medical problems to be fixed.

In the meantime, there continues to be evidence that lifestyle choices and habits still factor into the dementia diagnosis  in significant ways, U.S. News article “Everyday Activities Might Lower Alzheimer’s Risk” is here  and efforts to get people with dementia out in nature to reconnect with it to get back in better touch with their essential humanity  are helpful as are programs reconnecting dementia patients through art (an article in The New Old Age series).  I’ll explore more about gratitude for “what is” in a later post.

©Barbara Cashman, LLC