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Dementia and Children Young and Old:

My experiences as a mother to my children and my mother.


By Connie Baxter Marlow
February 6, 1999
Dear Family I want to write you and explain to you what I experienced with Mother during the three weeks I was
with her. I want to shed a little light on who I am , what my experiences have been and what is behind
my thinking so that as we all approach finding a solution for the situation at hand, you will have a
better understanding as to where I am coming from.
As you are all aware, I committed twenty years of my life to mothering and I showed up in as
conscious and present manner as I could. My entire focus was to honor the human heart and spirit. It
was in that way I felt I could best contribute to society - by bringing up people capable of making a
positive difference in the world. This recent experience with Mother underscored why I structured my
life with my children the way I did. Mother at this time is very much like a 3-5 year old child, but
then, she is also our wife and mother.
I have discovered that the human being is much like the horse in its need for connection. For example,
if you separate a horse from its friend or group and take it off on a trail ride by itself, you find you have
half a horse on the way out, sluggish, always wishing it were back with its friends. When you turn
around and head home, instantly you have a lively, happy horse - two completely different animals.
This is what I found with mother, and with my children. If I was conscious and present with my
attention either 100% focused on them, or if I was sitting in their presence with my attention split
between them and a "busy project" like organizing photos or sewing or cooking I would have a bright,
happy individual who felt loved, connected, fulfilled. If I separated myself from them, put my
attention elsewhere (which I seldom did in the whole 20 years) in a very short order I would find a
needy, whiney (in mother's case bitchy) person who was unpleasant to be around, a situation which
could have, had I let it, spiraled downward into a typical child/parent relationship of the 90's. I chose,
however, when I was in the presence of my children (and Mother) to be fully present - with eye
contact, touch, and undivided attention when in conversation.
With Mother it was like I was the energy source for her. When I was with her and present - looking
her in the eyes, touching her, laughing, singing, dancing, talking directly to her she was happy,
smiling, bright, curious, attentive, funny. When I got distracted, walked out of the room (I would
always tell her where I was going and for how long) her light would begin to dim and the longer I
stayed away, the dimmer it would get until she would come and bitch at me to come back, and I would.
So, if I had anything to do that required my full attention and concentration I did it while she was
asleep - between the hours of 8:30 or 9:00 pm and 6:00am(I got up at 4:00am) - actually she would
keep herself busy with breakfast and getting herself ready for the day until about 9-10am. Those were
the hours when I "had a life" - I wrote my book, coordinated with the publisher and co-authors, etc.,
talked to friends on the phone and if I needed more time, I would say to her "now today I need to do
this or this for an hour and at such and such a time I will be ready to be with you." and she would give

me the space to do that, unwillingly. Just as a child does she resented anything that took my energy
(attention) away from her - not because she was selfish or spoiled, but because she was lonely(deenergized) and unable to self-motivate given her condition when I was not present.
With my children, when I needed time to "recharge my batteries" I would hire a babysitter. That way,
they were cared for and energized by another caring, present person and I could do my thing so that
when I picked them up I could be fully present with them again. The battery analogy is a good one, it
is as though they take their energy from you, which drains you of energy. So in order for you to have
enough energy for them and yourself you have to "recharge" by doing something that feeds you
energy. I have been very conscious of this process and knew that the children's time with the sitter was
critical to my success as a mother. Their time with the sitter did not replace their time with me
energetically, but I knew they were getting positive, important socializing experiences there. This
commitment I made to the hearts and spirits of my children is why I never went to work, never joined
any boards, never went to any meetings after 3:00 or 5:00, never watched television. I would tell
anyone who wanted a meeting in the evenings or on weekends " Sorry, I work then, I'm a mother."
And so it is with Mother at this time. I spent the month with a lovely, happy, curious, funny individual
who was up and going everyday with "Well, what's up for today?" as long as she had a plan,
something to do and look forward to, get ready for and get out the door for she was happy. She needs
to feel involved, productive, connected. And when things are structured at her pace and at her level
with someone to pick up where her memory could fail she is elegant, gracious, funny, smiley,
beautiful.
One thing I noticed was how she enjoyed old movies, things she had known in the past, things that had
familiarity. She spoke of her sister, her brother, Dora. We talked with her sister(Connie called) on the
phone and mother said how she would like to take a trip with her, she closed by telling her she loved
her. We spoke to Dora(I had to speak to her on another matter) and she told Dora how much she
meant to her. Dora was very touched. In mother's closet is a picture of her parents. What I came to
realize is that Alice Comee is in there and is very connected to her family and life as a young girl in
Brunswick, and that Alice Comee is a beautiful, fun-loving person - emotional, loving, connected.
Somehow, with the falling away of certain aspects of her mind, parts of herself that never developed or
were never demonstrated are coming to the fore. Her love, her caring for others, her heart are in
evidence now. She is becoming the girl Dad fell in love with or maybe even more than that, maybe
she never felt free or able to express herself, even as a young girl. All I know is that my experience of
her throughout my childhood and adulthood was that somehow she was very disconnected from her
heart and spirit. For me "the lights were on and no one was home." Well, for the past month, I
experienced the lights being on and Mother more present and connected than she ever was. I've been
saying this throughout the past few years since the erosion of her memory and former self has been
occurring. That to me she has been actually more present, not less. Anticipating the India time she
actually told me she was excited to see me, she was actually excited to have me come. Strange, but I
had never experienced the tone, the words before. I saw Ali's expression of disbelief when mother said
something caring and connected to her.
There is something happening here that is beautiful and will be a great gift to everyone in Mother's life,
something everyone who is close to her has been thirsting for (except perhaps Dad, maybe she was
present and connected with him) a piece of her heart, her love, her smiles, her humor. I truly believe
something that has been dormant all these years now wants to bloom and I want to give her the gift the gift of freedom to find and become her true self. She gave me life and she gave me all she had to
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give while I was growing up and I was in a position during the last month to give her the gift of my
attention, love and energy.
So now, I am speaking to you from the bottom of my heart. I am asking that we do everything in our
power to create an environment for her within which she can flourish these last few years ( months?) of
her conscious presence here on earth. Just as it is our responsibility as parents to choose what is on the
plate our children take their nourishment from(their emotional environment) so it is up to us at this
time to choose a life for mother where she will feel happy and fulfilled, connected and at peace. When
she came to realize how lonely she was in Black Butte and how she wanted a change, she cried with
the seeming hopelessness of the situation. I told her about Maine and all the loving family that was
there. The possibility of returning there hadn't even entered her head - she felt she had been away too
long. I told her I had been away all those same thirty years and that the whole damn state loves me to
death especially all the family in Brunswick. And she knew that Dad was dead set against going back
there, and since he means everything to her she could see the no win of it all. She just cried and cried
and I told her that everyone was aware that the current situation was not serving her and that we would
stand up for her and see that something happened that would help create a life for her where she would
be happy and fulfilled. She was afraid and confused because she could not see a solution.
From my point of view, we as a culture are enmeshed in a system that does not honor the human heart
and spirit. The nuclear family concept with humans separated into structures(houses) with often times
little meaningful contact with those beyond the immediate family to me makes no sense. To me the
pressures and limitations imposed upon each individual to show up in the "accepted" state are a "crime
against humanity" that are magnified at each level - from home, to community, to state, to nation, to
world. We have "accepted" practices that have never worked for me and I spent the last twenty years
creating a life for my children that went beyond the norm- and I have committed my life to bringing a
broader awareness on the planet.
To me, Mother's situation is demanding that we break through this "accepted norm" and we free
everyone from their insolated, isolated roles and let them show up for "someone in need." "Necessity
is the mother of invention". We are being forced to break out of our patterns, our thinking. I see the
whole situation as an incredible opportunity. By going to India Dad gave me an wonderful opportunity
to spend very important time with Mother-a key piece to my life. Dad has done an incredible job
showing up for Mother in the best way he knows how. But he cannot be all of what Mother needs. As
she said "Of course he can't, he's a male.".
I believe that if we get Mother into a situation where she will feel connected and nurtured just by her
surroundings, she will need less constant, intense emotional care by others. I have suggested that
something happen to get Mother back to Brunswick. There are so many people there - Debby Libby,
Dora, Ed, Connie (she is their aunt, their sister) and all those people she grew up with, Pittsfield
people, Fendlers, Eric, Scott, Jayne who can feed her emotionally which will take the burden off of any
few individuals. I found so much love and support in Brunswick and I never even lived there!
I truly feel Mother needs to go "home". Just as the Hamlin's went home to their "homeland" as Dad
put it. I think to only take her back to Brunswick in a pine box will only rob her and her family siblings, children, grandchildren, friends of a connection with her (and Maine) that we all are thirsting
for at deep levels.
Now, I know that Dad feels resistant to this idea, that it is not what he had in mind for his life. But as
he witnessed the other night when circumstance made the transition with Gabriel from
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outsider(housekeeper) to caregiver(cooking us dinner, putting mother to bed after a full body massage)
happen in a lovely natural way. I believe circumstance is again going to serve Dad and bring him gifts
that he wouldn't choose to bring to himself. If we open up to the flow of things something will come
that we couldn't have thought to orchestrate. I view Mother's situation as an incredible opportunity for
opening the heart within our family, immediate and beyond.
We are so lucky that Gabriel has shown up in this transition time. Only the day before Mother
allowed Gabriel to put her to bed and accepted her as a caretaker Mother had been disliking her style.
Mother is not stupid and knows now that she needs help and has accepted Gabriel as the only solution
right now. Gabriel cannot substitute for family, for people Mother is connected to at deep emotional
levels, but she is a fine person and is performing an invaluable service at this time.
Mother will not speak up for herself. She will accept whatever we give her. I have told you what I
feel will be a wonderful solution for her. I know that she is your wife and mother too, and that this
impacts Dad to a huge degree. I have done all that I can do and that is express my thinking to you. I
also offer my time wherever it can be helpful. I'm planning to be in Maine most of the summer and fall
- from mid-June on - with a 2 or 3 week visit to LA sometime in July or August. I would be happy to
participate in any Maine solution for Mother that comes to mind. I am somewhat free and very flexible
as to how and where I spend my time.
Thank you for reading all this and taking my experiences and point of view into account.
Lots of love,
Connie
P.S. I didn't tell you what Mother was like on our trip to California (via the Oregon Coast). Before we
left, I was contemplating flying and Mother would have none of it. "Flying is boring." she said. "I
want an adventure, I want to drive." So on a snowy Sunday we set off. First buying chains at the local
hardware store who put them on for us. Up over the pass we went in a substantial snow storm, till we
came down the other side in rain and slush. I had to take off the chains, and she was right there
offering constructive suggestions. We stopped for tea and hot chocolate in the pouring rain at a little
woodsy town and enjoyed the owner and her young child - who gave us a tip on where to stay in
Florence(the child did). Anyway off we set in the rain through some really beautiful country magnificent trees with all manner of different configurations and growths (a rain forest type place) - I
pointed out this and that astounding feature and she became excited and noticing all sorts of things.
She said "You sure make this interesting with all the things you notice." (Dad was always racing
against the clock to see how quickly he could get from point A to point B). Through Eugene and off
into the hinterlands in a downpour to Florence. We went to the place the child suggested and it was a
really nice place right on the beach, with a nice restaurant next door. I wanted to stay in a bed and
breakfast, so we went back into the car and I called all the places in Florence - mother was very patient
and flexible - up for whatever I came up with. Ultimately we decided to stay in the nice place and we
had a lovely evening and wonderful dinner.
The next day we headed out in the rain and I picked up a magazine that had an article in it about
enjoying the Oregon Coast in the winter. So we ventured to the sights they suggested - to the Dunes,
to a place to see the largest waves on the Oregon Coast. Every time we got to the place we wanted to
see the sky would clear and the sun would come out but in between we were in torrential downpours
(Mother will vouch for this phenomenon.) Mother was up for everything. She is very adventuresome.
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The cold and wind got to her a bit but other than that she was up for exploring and seeing things.
Further south there are huge rocks formations in the water just off the coast and she was very curious
about them and how they were formed. She said "I'd like to read up on how these rocks were formed,
they just don't make sense." And really, they don't. So anyway - we explored the Redwoods, where
we found a great restaurant for dinner(an old whorehouse with a resident ghost) and generally had a
wonderful adventure.
Weeks after she still remembered details and experiences from the trip. I put together a photo album to
help her memory.
One thing I want to mention is that she often talks of her grandchildren and how she doesn't really
know them. She comments that she just hadn't spent much time with them. Is curious about them, and
I sensed a longing to be a grandmother and know her grandchildren. In San Francisco she was happy
to be with Ali and thrilled to be with John. I'll never forget her tone of joy and surprise when she saw
John, and when she walked with him she put her arm in his.
We helped Ali get her room put together in Berkeley, got her enrolled in school and played in San
Francisco - went to see a movie "At First Sight" that Mother liked. We also went to Finocchio's with
John and Sharon and she really enjoyed it.
On the way home we slept at Mt. Shasta and she was curious the next day to drive up the mountain which we did.
She was very adventuresome, curious, up for things. She looked at and read every sign we passed.
Everything that everyone was doing along the way she would study and comment on - "Now what is
that person doing over there." She got a little bored while I was helping Ali with this and that - which
is understandable. But she was patient and kind.
I would say that the change of scenery, the looking forward to the unknown of the trip was stimulating
and something she needs in her life. Repetition, boredom, lack of stimulation, a feeling of noncontribution are all things that contribute to her bitchy behavior and her seeming to be out of it. Given
the fact that she cannot self-motivate, or function without a right-hand person this presents a challenge
in how to structure her life.
Just wanted to give you all the input I have - so we can put our heads together and figure out
something that will serve both her and Dad in the future.
CBM
The family decided to take Mother back to Brunswick, Maine where she was born, grew up, married
and birthed 2 of her 3 children. We rented an apartment in the independent living section of The
Highlands in Topsham for 3 months. Dad and I shared the responsibilities of living with her. We ate in
the communal dining room at night, and no one knew Mother had dementia as she was personable, and
we answered any questions directed at her.
It was a wonderful time of reconnection to her childhood and friends and family. Once when we were
out and about she asked to go to her parents home on 33 Federal Street to see if they were there. We
went and knocked on the door and the woman who answered the door knew of the Comees and
welcomed us in.
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Dad and I spent our time organizing and framing a photography exhibition for Bowdoin College
Three Generations: Impressions of Indigenous Peoples of the World with my, Alisons and Dads
photographs and had an opening which Mother attended. The exhibition went on to hang in the US and
Chiapas, Mexico.
My book Greatest Mountain: Katahdins Wilderness was re-published by Tilbury House Publishers
with pieces written by Arnie Neptune, Penobscot elder, Dennis Kostyk, Buzz Caverly and others-along
with quotes from Uncle Percy. It brought in the Indian connection to Katahdin that had been only
suggested in the 1972 edition. There was a opening ceremony on Indian Island and a book signing at
Bowdoin College, both of which Mother missed because she passed away mid-July several hours after
a brain hemorrhage while at dinner with me at The Highlands. Dad was in Oregon at the time. It was a
blessing as our time in Maine was over, and the plan was to return with Mother, who was quickly
deteriorating, to Oregon.
I spoke at her memorial on the Gifts of Dementia

Thoughts from Connie on the occasion of her mother's memorial service


July 17, 1999-Bowdoin College Chapel
As many of you know, Mother was experiencing the deteriorating effects of dementia. I want to speak
to you of the gifts I felt this disease brought to our family.
While many tend to look with sadness upon changes that come in the course of our lives, my
orientation is to look at the beauty, to ascertain how the loving nature of things is working its magic
upon our hearts and spirits.
As what we consider to be the crucial aspects of our personality fell away with the loss of her memory,
Mother moved into a state of being that was innocent, childlike, endearing, funny and adventuresome.
Without the trappings of the mind, she came into the present. Aspects of her personality came to the
fore that had been hidden behind the armor that protects our hearts and allows us to fit into a way of
life that we see as appropriate and good, but which perhaps does not serve us at deep levels.
Instead of mourning the loss of what had been, her family, each in their own way, moved into new
roles, new ways of being and thinking that would never have been considered without the impetus of a
dramatic, life-threatening disease.
Her condition demanded that we move out of a fast-paced life and become patient, loving nurturersvery present and very conscious each of her waking moments.
We came home to Maine where mother's life came in full circle after being away for so many years.
We spent time with the people who meant so much to her, and to whom she meant so much. Our
social calendar was full visiting and being visited by friends and family. It meant so much to her to
feel loved and connected. When she left the dining room at the Highlands on the stretcher she waved
goodbye to Happy Aldred, one of her mother's best friends who had seen my grandmother Connie
through her last days and who had eaten dinner with us that night, and whose presence had meaning
for Mother we can only guess at.
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And so I honor the circumstances that gave me so much heart-centered quality time with my mother
and I am thankful for the way her life on Earth ended, with the beauty and dignity that she embodied as
a model of graciousness, service and kindness.
Thank you for coming today and thank you for the love you have given our family over the past 50-80
years.

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