Language

This is a tough one.  MH talks to me...with me...in English, but her words are not often connected to one another.  As an English major, I am interested in the building of her sentences.  She corrects her grammar when it is wrong...although I would have no idea of the wrong-ness. She tries various forms of a word to get a feel for which is correct within the sentence, when actually none of them make sense.  The words she chooses are close in weight or tone to the ones that would fit the sentence, which is fascinating to me.  Tall=thick=deep.  I cannot imitate her, because she talks so quickly, and with certainty.  It is her own language, and there is a sense of it I am gaining, but proificiency seems far down the road.  Once last week, when she was telling me a story, we both laughed at the same thing, and laughed much harder than usual...we shared something fabulous....but I had no idea what it was.  Still, it felt wonderful.  I do not understand her jokes, but it is clear to me that she has a good sense of humor.  There is a casual quality about her that I like, and the ease with which we spend time together is growing.

I have always been so connected to language...to literature, to poetry, to songwriting.  To foreign languages.  My interaction with M leaves me both with a sense of lack and intrigue. I am tired when I get home after just 4 hours.  The concentration is intense.  She demands it.  She deserves it.  She appreciates it.  I truely feel that.  She knows I am not just elder-sitting her.  It takes about 20 minutes for me to settle into her cadence, and off we go about our day together.

memory is/memory isn't

I read an article, but did not reference it, for some reason.  I took an entire page of notes, and these are the lines that have stayed with me;

Memory isn't just about remembering, and memory loss isn't just about forgetting.  Memory is responsible for creating continuity, meaning, and cohererance both for ourselves and for those around us.
Memory isn't just a mechanism that records events; it's an internal clock responsible for the impression of moving forward in time.

connection without memory

Two days after Mom died, my partner of 4 years announced that he had a new lover, had been with her for a month, and had been waiting for the right time to tell me.  My first life-crisis for which I could not call Mom....the anger has not yet eased on that particular ripple-effect...

At work, IB noticed, and continues to notice, that I am struggling.  She is AWARE of me like few are, a reminder that dementia effects memory, but not the ability to understand and connect emotionally. She does not remember that my Mom has died.  SHe does not remember that my partner has betrayed me.  But every morning, she wakes up and asks me how I'm doing, and holds my hand with concern and tenderness...she doesn't know why, but she definitely knows that I am hurting.

My boss seems to think that I am not checking myself enough...that IB worries about me, and I need to get it together.  I disagree.   I am finding that for IB to reach out to me, to wrap me in her arms and hold me like a child are things that she is good at....VERY good at, and it gives her the motherly feeling that she still holds deep in her body's memory.  It gives her a sense of purpose, of balancing, of caring for me just as I care for her...our relationship has become deeper and has found a new dynamic.  We get through the shit of life together, and I love her all the more for it.  At a time when I am so despaerately missing my mother, she has those same qualities and is happy to step into the role.

Perhaps I am not very professional.  I don't know...I'm still so new in this business...but to make deeper connections late in life cannot be a bad thing, can it?  KS has the same effect on me....when I go to visit him, he asks about my life, wanting to know how I am dealing with my heartache...maybe it feels good to talk about something outside of swallowing, toileting, and where he may end up.  Maybe it feels good for him to extend himself to another...isn't that, after all, one way to be "of use" in this world?  It is a constant concern with seniors to not feel needed anymore.  He knows it helps me to see him, to have him hug me...after all, I am missing my Dad as well, and KS is Dad's contemporary in many ways...it was the initial link we shared.

We do not grow out of needing parenting.  After our parents are gone, others step in to fill that gap...they step in voluntarily.  I say go for it.

tomorrow

Don't wake up tomorrow, Mom....please go in your sleep.  You're ready.  We're ready.  Just let go....and know that we send you off with love and tenderness.

IB went crashing to the floor just as I was coming in the door this morning.  It was my first ambulance call.  In between the getting up of her and the examining of her by MR, I got a call from Shan to see if I could have one last talk with Mom.  I could hear her making noises to me as I told her over and over that I loved her and thanked her for being such a good and supportive mother all those years.  Just a few minutes after that, KS's daughter texted to say he was being transferred to a bigger hospital...spitting up blood, and getting weaker.  Then back to IB, my lovely Capricorn the Goat.  Back on schedule by 10am, sore and tired.

I spent some time with SN at LMR, walked the familiar woods and sat at  my grandparents' table....good to be quiet and social at once.
Back home, a soaking in the tub, followed by a couple hours in bed with a book...nap...nap...up again, a snack, and soon to bed.  I am learning to find the balance that cargiving requires.

I hope no calls come until morning....slip off tonight, Mom...Milt will meet you half-way...

Bearing Witness

So much of what I do for a living is about bearing witness.

end of life processing

Mind. Blown.
IB was late coming to breakfast the other day.  I went to check on her, and found her looking at photos. We took them into the front room, where she spent the afternoon while I shopped for groceries.  When I got back, she showed me the pile.  There were about 15 that stood out with coloring from the 70's, and I glanced at them...then again, then again, in further disbelief.  They were photos of a wedding, HER wedding, to a man other than the man we know as her husband.
I called the weekend aid, who has also noticed her doing a lot of photo searching.  She took a look, and she was blown away.  She asked.  IB layed out her tale of a boring marriage, an interesting man at work, a divorce, a marriage to whom was now a lover, a death of said lover, and consequent remarriage to the first husband.  WOW.
The next day, she pulled out the photos again, and showed them to me.  We talked for a long time.  About love and loss, scandle without regret, following our hearts, all that stuff that holds the juice of life.  How fabulous.  As I was leaving, she said, "Honey, there's only a handful of people who know...".
I met privately with MR, wondering if there was anything we needed to know about helping IB process all of this as she continues to "Awaken"...MR had no idea about any of this (I'd assumed she knew)...MIND BLOWN.  Keep on as we are, she said.  Keep the family out of this.  Have IB lead the way in any conversations, be supportive.
The processing at the end of life...I am stepping into this now, and I am so very interested.


KS is weakening quickly.  I have begun a series of small discussions with him and his daughters and MR about the coming months...how does he want this to go, how can we help him set up his house to stay in it, how can I help his family to prepare...
They have skipped the Assisted Living step.  He's on several waiting lists, but we all realize that he is no longer capable of the ADL's required to live there...nursing homes don't feel right for him.  If he continues to fade away, that may be best for him...it fits his style, inch-by-inch...he will stay with us, we will up the shifts however possible, and call Hospice when the time seems right.  I have asked MR if I can be on his Hospice team, and she is all for it.  His duaghter told me that one of the reasons they did not want him in AL is because they wanted him to keep me as his caregiver.  Wow.  Just wow...

Things are getting very big...very real....very enlightening.

gravy lessons

IB stopped cooking because she could no longer sequence. Her kitchen is stuffed with cookbooks.  She was a member of the cooks of America group.  To date, I have been excited to have her placing slices of cheese on home made pizza.
A few days ago, I made braised short ribs for the first time.  IB asked if I was going to make gravy.  I told her I had never made gravy...I could have knocked her over with a feather.  She told me to save the drippings...that night, we would make gravy.
We started just after 5.  She was in the breakfast nook, I was in the kitchen. When she smelled the drippings starting to steam, she made her way into the kitchen.  Within minutes, she was in front of the stove, spatula in hand, asking me to ge this, measure that, pour more, scrape that, wait some more, don't be shy....it was awesome.  She's done enough exercising now to be able to stand for a while without her walker, and I was amazed at her stamina.  Sequencing was spot-on, her face was so focused...what a treat for both of us.
Good food.  Good exercise.  Good sleep.  Good lovin'.  This is posted in the front room.  It is our motto.  Look what it unfolds.

how do we make them feel?

Maya Angelou died one year ago.  There have been many quotes on FB, and this one spoke to me:
"People will forget what you said,
 people will forget what you did,
 but people will ever forget how you made them feel."

This is my connection to IB in a nutshell.  My goal at the end of the day is to have her spirit in a good place. Period. All the small things throughout the day add up to that end-of-day summary, which in her brain, is more feeling than thought.  How do you bring about a mood that leaves her drifting off to sleep in a safe and sweet presence of mind?  I am a Libra, and I know this helps me here.  For every heavy conversation we have, I balance it with some humor.  Effort is balanced with rest, engagement is balanced with quiet.  

Bad things happen. We watch and discuss the news.  I don't try to sheild her from the darker things of life. She knows they're part of life.  We deal with the harder stuff together..that is part of that safety at the end of the day.  She doesn't always know what bad thing happened, but she does know that she will be helped through it.

There seems to be something slightly amiss lately.  I cannot really identify it or guess what it may be about, but I am aware of it.  We are in sync, and I am listening....the balancing act is more deliberate now, but I don't yet know what I'm balancing her for...

one room

Mom's now in one room. One Room. It signals to her that which is inevitable...that which we do not mention...that which everyone tip-toes around.  She is in her FINAL place, and she wishes she had known before she ended up there, as she thinks something else could have been done, some other option tried. One day she was in her apartment, the next in the hospital, then transitional care, and then this....the SENIOR CARE UNIT.  My sisters did the best they could.  At the time, she was too far gone, too close to death, too weak, to think about any other idea.  Now that she's stronger, I'm sure they may have had a few back-tracking moments, maybe not.
In my work with IB, I've seen with my own eyes how someone can go from near-death to a sort of thriving within a couple of years...when most their age are going downhill, she is rising...waking up.  Mom is one of the downhill gals, I'm afraid.  And she knows it.  And is, as she has been for what seems like ages, ready for it.
I think about the physical and pchychological aspects of the One Room.  Mom is bothered by the fact that she did not have control of what she might bring...and that has my mind going, often as I'm out walking Bubba, letting my thoughts float around.  If I had say, one day to decide what I would like to bring with me to my One Room, what would I bring?  The functional and the thought-provoking.  God, only One Room. Would it be possible to create a studio in a nursing home?  One Room that was a functioning studio with a hospital bed in it?  Probably not. I am thinking almost daily about the need to figure out something else by the time my time comes to move into constant care. A studio assistant/home caregiver, perhaps?  Shared living/studio quarters with other old artists, with a shared home caregivier would also be nice.  A barn should be in that picture somehow.   I just don't think One Room is going to be enough for me.

Off the Wall

I've been with I.B. for 31/2 months now.  Everything is different...enhanced. Everything.  #'s are lower, muscles stronger, balance better, brain sharper, with awareness that now resides in the "keen" catagory. There is great freedom here, in this space that floats between us.  Humor has always been a key component of our relationship, but recently, it has expanded to loud, raucous laughter...the kind that buckles the knees and brings a sense of ALIVE-ness to the surface.  It is joy...simple and powerful joy that we have found.

She taught me how to make fried chicken one evening last week.  Stood side by side with me for longer than I've ever seen her stand.  I've waited for that moment for a long time....it's hard to keep focus on hot oil with tears in your eyes.  Later that night, we were debating something...I don't remember....but I suddenly told her that I would thumb wrestle her for it.  She'd never thumb wrestled before (or so she claimed).  It took 1/2 second for her to catch on, and we were off...I got the stink-eye from her as she tried to psyche me out before and during the match.  She's really quite good.

We've started screaming to/with each other while doing the evening's standing stretch.  I guide her up out of the big lounge chair, and while holding hands, we together swing our arms all the way up towards the ceiling....something about that movement makes both of us open our mouths...it was a quick transition to screaming like children on a rollercoaster.

She told me the other night (after stretching) that she's been feeling more aware lately, and wondered if I had noticed any change in her..."every day", I told her.."every day".

Namaste

Along the same lines as the last post, for this is a recurring theme....IB and I were discussing memory..she said she felt so sorry for the old people in the nursing homes who cannot remember their loved ones who come to visit.  The irony slapped me all over the place...we talked about how those "old people" may remember their kids, but only as kids, and may not understand that those kids have grown up... But the fact remains, the senior remembers the kid on the HEART level, regardless of age.
I taught IB the sanskrit word "Namaste".  "The light in me sees the light in you".  Age makes no difference. Names makes no difference.  Brain function makes no difference. The heart knows, and the heart remembers.  She loved the term, and asked me to write it down.  It sits on the kitchen table, where she can look at it every day.

what's in a name?

The weekend aid and I have been given name tags to wear.  IB admitted to MR the other day that she does not know our names, and that bothers her.  I wondered if it would be embarrassing for her, this sudden name tag thing, or if MR had told her we'd be wearing them.  As I was putting mine on, I told her the story of how, when I was a kid, we were given the assignment of researching our names...most of my schoolmates were named after saints...I, according to Webster, was named after a breed of cattle in Ireland.  I was horrified, and confronted my Dad with all my tiny power.  That night, he came into my room, turned on the light, and sat on my bed, National Geographic in hand.  He had an article about Ireland, and on the page was a gorgeous photo of the Ring of Kerry.  "That, Sunshine, is how you were named...after the prettiest part of Ireland".
IB and I talked a bit about our dogs, how they had no idea what their names were, or ours, for that matter. For all Molly knew, her name could be Dolly, or Sweetheart.  My Bubba could just as easily be Fluffer-fart....but our dogs KNOW US....they know us like no humans could possibly know us.  Whether or not they know our names has little to no consequence...it was a sweet conversation, this sorting out of what is important on the personal end of things.  Still, I understand her desire to know the specifics. We are alone most of the time, but once a third party comes in, she should be able to refer to me.
Mon has a nice saying for this thought-thread:
We live in the heart.  Our brain just takes care of the details.

insulin, diet, exercise

In the two months I've been with IB, we've brought her insulin down from 25 units to 15.  Remarkable.  There are a lot of moving parts to this exploration (which feels more like experimentation, but that doesn't sound good, since this is a human being we're talking about).
The exercise is pretty well set for now...getting them done on a regular basis is on an OK projectory.  Someday we'll up the reps or add new ideas, but for now, just getting her to move is a big enough challenge.  I have stations set up around the house, and exercises to do at various times of the day, so she doesn't get overwhelmed and start making up excuses to get out of it.
Food is quite another story. So far, we've made a move from what I call "neutral food"...food that doesn't necessarily hurt her, but doesn't help her either...to nutrient-dense food.  Almost every single meal and snack contains a protein and a fruit or veggie.  We're also moving toward a gluten-free diet.  But there is still an uncomfortable time of day for her, right after her morning BM, where she groans and whines for around an hour.  Her small intestine is in pain. She is exhausted.  She is pale. One Dr. suggested I read about Diabetic Dumping Syndrome,  where the food dumps from the stomach to the Sm intestine too quickly, causing cramping and discomfort.  One of the triggers is milk products...which has lead to a smoothie experiment.
I'm trying smaller amounts: 1/2 cup yogurt with banana as my control.  I know bananas sit well with her.  The smaller amount of yogurt seems to be working.  I've also stopped her coffee (she has yet to notice..?).Three days with less cramping.  I'll keep off the coffee for a while, and start playing with different banana-combos to see what sits well and what doesn't. If they're all OK, then we know the trigger is either too big a smoothie or coffee.
As the insulin units required has decreased, we've been discussing the next move.  It seems to be mini-meals, to allow the insulin to work more efficiently.  I've started on that, but the CNA schedules will have to change in order to do that correctly.
This blog is uncharacteristically dry, but I wanted to get the day-to-day info down first and comment on the personal impact at another time.  

A sweet morning

Yesterday will be big in my caregiving memory.  I.B. had asked for a book.  She likes intrigue, mysteries...I thought of the Kurt Wallinger books, but wonder if she'd be able to follow them without the ability to sequence.  Going through the bookshelf, I pulled Laura Munson's memoir.  It's well-written, and each chapter can be enjoyed as its own piece of writing for anyone who appreciates the written word.  I.B. and I speak often about relationships, and I brought it over to see if she might read it.

After breakfast, I started breaking down the turkey her daughter had brought over, getting stock ready, and chopping veggies for a soup.  I.B. went into the living room, and was very quiet...I peeked around the corner and found her propped up with great posture, reading the book.  Hours passed...hours...the house was quiet, peaceful, and we each enjoyed it temendously. When she came into the kitchen for lunch, the book came with her.  When she found sentences that were especially powerful (Laura is a powerful writer), she read them out loud to me.  This continued until it was time for me to go.  I left her at the table, book in hand.

I wonder...when she picks the book up again, will she start at the beginning again, or will she take up where she left off?  Her brain seems to be getting stronger...is it just my imagination?  I made a sign for her living room that says,  "What does it take to get to 90?"  Under that is a list:  good food, good exercise, good sleep, good lovin'. I think it is working.

What About Memory?

I.B turns 90 today...or yesterday.  The paperwork in 1925 was not the same as her Mother's memory.

And what about memory?  I.B.'s dementia is different than Mom's, is different than any other's...I wonder about the frustration level. Is there a point at which they give in a bit...start to let go of hanging on?  Start to become OK with the loss, and start to think more in terms of what is in front of them? I wonder if I.B. knows my name. L.D. has been caring for her on weekends for over a year, and every Friday, I tell I.B. that she'll not be alone, that L.D. will be with her....every Friday, she asks who that is.  I have no doubt that, come Saturday morning, I.B. hears a familiar voice, and responds with the joy that is in her each morning.  Names do not matter anymore.  She knows our ENERGY...our personality, our intention to care for her and give her the highest quality of life our individual potential allows us to give. I.B. may have been frustrated at first, maybe for a long time...I've just now come into her life...but she lives now in a state of trust, and in a state of present-moment, and finds quite a bit of joy and contentment there.

Which is not to say that her mind has become simple.  M.R. told me when I first started that I.B. engaged on whatever level the people around her expected.  That has been the best information she could have given me. Game shows have been replaced by the morning news.  She reads the paper to me, and has started asking for novels.  This woman has an 8th grade education, and the subjects we discuss get deeper and deeper as our time together goes on.   And those subjects may be discussed 5 or 6 times in one day.  Sleep seems to wipe the slate clean, but until a nap or bedtime, we may have the same conversation over and over again...it is a great opportunity for me to change the jist of the subject slightly each time, to see how many more layers we can explore. Added into the mix might be irony, sarcasm, humor, complex sentence structure, etc.  She gets it all....for the present moment.  5 minutes later, it is all gone....but that stopped mattering to me after the first week.  We live in the present moment together 5-6 hours a day.  What a great gift for me, who always likes to PLAN this and PLAN that...plan A, plan B, endlessly.

For me, it seems that to be able to let go of the fight to keep my memory would rely on my feeling of safety.  If the people I trust tell me not to go into the garage, I have to assume the garage is not safe for me.  The reasons no longer matter....the curiosity for that went away a while ago...I just do what I'm told.
What does it take to get to that point?  Just do as you're told, and trust that everyone around you is acting well on your behalf.  Wow, the trust factor is HUGE there.  But if you can get there, let go of that fight, maybe those around you can help you concentrate on something a bit more engaging...let go of what no longer is on your scope, but really take a good bite out of the scope that is in front of you.

And it is that SCOPE that is my job to nurture.  If her scope bores her, she will have less and less to look forward to.  As long as she can have discussions, I need to keep her engaged.  And her mental capabilities are stronger when she eats well, exercises, and gets plenty of sleep.  I see how it all goes hand in hand, how a routine that involves healthy habits and mental connection can keep her in this world and keep a smile on her face.  It is a goal of mine to get her back into the kitchen, where she used to shine. One of the exercises I've set for her takes place in the kitchen, just before dinner, so she can see and taste what I'm cooking.  By Summer, I'd love to have her strong enough to stand in the kitchen with me and cook for a bit.

I've been with I.B. for one month now.  She has dealt with her son moving away, and one of her beloved dogs dying.  Both took their toll on her, and both have drifted into the background. She deals with things directly and fully.  The whole-body greiving for Tucker was immense and deep.  But the last two weeks have been steady and we have had a chance to find a good routine to the day that enhances her health, and she is responding with fabulous FBS numbers and more of a willingness to stretch and do strengthening exercises. Her mind seems to be responding, too. Asking for novels was huge the other day....she wants something MORE than the piles of magazines that surround her.  She still has teeth to sink into things.  I speak often of day trips this Spring...picnics by the lake, drives into the mountains.   Every time we do ROM on her ankles, I remind her that the grass from the road to the picnic table is uneven, and ROM will help her ankles and feet to maneuver the path.  On Tuesday, she won't know that we discussed this same thing on Monday...but the Tuesday talk will get her thinking about Spring, about the hope of touching into the nature that is Montana, about stepping out, broadening that scope even more.  And it will get her moving with a sense of hope.