Just Say OK

 

I’d been writing for an hour in the chair across the room from where Mom was resting. She often likes me to just be with her. They call it, ‘shadowing’ and it’s supposed to be reassuring.  My chores were done, and it was so nice to have a little bit of quiet time to myself. I was lost in writing and research for my book, “Bread Madness.”

Then I heard my mother call out my deceased Aunt’s name. From the time I was a kid, Mom called me Barbara, but I didn’t mind it.  I knew she meant me.  She sometimes called my sister our dog’s name, ‘Twister’ so it was not something to get upset about.  I went to see what she wanted.

“Get away! Where’s Barbara?” she yelled to me when I tried to sit next to her.

“Can I get you anything?” I went to put my arm around her shoulders but she pulled away.

“I don’t like you!” she said to me through clenched teeth.  Distraction wasn’t working.

I knew I should just let her sit quietly and wait for the mood to pass.  I tried to resist the urge to ask her, “Do you know who I am?” I failed, asked the question, and searched her face for some sign of recognition. Perhaps the problem is that neither of us recognize the other. We are so different – both of us – from whom we used to be. I was a brunette, but my hair is almost white in the front now and I wear glasses almost all the time, which is not the way she remembers me. I took the glasses off.

I thought I detected a hint of recognition in her eyes, but she threw me a curve. “I want the other one!  Where is she? She was here this morning.”

I had to laugh a little.  If this was a comedy skit, we’d all think it was funny. I hadn’t meant to make her anxious, but I was tempted to leave the room and come back with a different sweater on.

“What? What did you say?” She had a strange, faraway look that made HER look like someone other than my mother.

“I said there’s no other lady.  Just me.  I’m your daughter, Hillary.”

“I don’t care if you’re the man in the moon. Get away from me!” She thrust her chin out. Her hands are small but powerful, and she clenched them into fists. She has a grip of iron, and a temper to match, so when she gets like this, I make a quick exit. I make sure she’s safe and I keep an eye on her, but basically I leave the room and wait for her to ‘sleep it off.’

“O.K. Mama.” My friend John coached me in the beginning to just say okay when she acted up. When she first came to live with me, I’m afraid we ‘locked horns’ quite often, just like we did when I was a teenager. It was really hard for me to do, but I came to see the wisdom of his words. His mother had suffered with Alzheimer’s, and although I had worked in a nursing home during the summer between high school and college, I had never really experienced the Dr. Jekyll / Mr. Hyde thing before this.

‘Don’t take it personally,’ I reminded myself. And at least she wasn’t repeating herself.  I sat down to write again:

So, when your mother doesn’t recognize you,
Or if she accuses you of stealing all her stuff,
Or if she asks you just one more time where her mother is,
Or her brother, or father or sister,
Or, if she demands to see the death certificate of the husband who died 29 years ago,
Or cannot be calmed that there is no body in the bed upstairs,
Or if she is not convinced that she didn’t go dancing last night
Or that she must make supper for the baby,
Or that she just took a bath last night,
Or she insists her teeth are in her mouth when they clearly are not,
And she misses her mouth and pours her tea on her plate,
And asks where her glass of milk is that is in front of her
Or where the bathroom is
Or whether her bed is her bed

Just smile, and say, okay.

No Technology Day

Besides being Pasta Day (Gluten Free), Wednesday is now ‘No Technology Day” for us.   I decided that yesterday in the early morning hours when I realized that I turn on my laptop every single day.  Not a day goes by that I am not ‘hooked up’ – not to use Facebook, not to do emails, but to research and write and sometimes watch movies on YouTube.  After all, even doctors and lawyers take Wednesday off to play golf – so why not me?

What ever happened to good old pen and paper? The regular post mail? Print books and magazines? Ordinary to-do lists? Why are my journal entries so erratic and all over the place (I have two laptops and a tablet)? What is all this EMF doing to me?  Is there really such a thing as “better living with technology”, or is it just an illusion?

I attempted to find out.

The first thing I did was to get my head around the idea by pulling out my paper journal and dialoguing with myself.  Julia Cameron in her book, The Right to Write calls it the “morning papers” and I used to do this without fail years before I had a PC at home.  It’s amazing how much garbage comes to the forefront of your mind when you allow it full reign – grocery lists, calls to make, chores to do, memories and connections to those forgotten bits floating around inside your head. It’s really rather cathartic, although it can be disturbing – which is probably why I don’t journalize that much anymore.  At this age, I don’t want to dwell on things I can no longer do or missed opportunities that will not come again.

I wrote eight 5×7” sized pages in longhand while my mother ate breakfast.  I saw her stop to watch me write several times, but it was probably less disruptive to her than if I had sat at the table with my laptop open.  I recall how in the 1990’s when I was on an engagement at Simon & Schuster, the executives would walk past our office filled with consultants at their computers and wonder what we did all day.  We wrote manuals and reports and created diagrams, flowcharts and presentations, but somehow the new technology was still mysterious to the onlooker.  I’m sure they thought we should somehow be more involved.

I was having such a good time that I had to force myself to stop and get on with my day.  I truly believe I have some form of ADD or ADHD because I can go for hours without looking up from a project I’m enjoying, but on the flip side, I can also start and stop and dart around like a chicken with my head cut off!  I reasoned it was like being on a diet – a technology diet – and I had to stick to my guns.

Several times during the morning I had an idea which, normally, I would look up online or go to one of my digital documents. In order to stop myself from doing this, I took a Post-It and jotted down my thoughts.  That way it didn’t have to become a bona-fide part of my journal and I could just grab the shopping list or idea for an article, etc. when I needed it. I began to find the book was a catalog of things that I didn’t even know were cluttering up my mind.  Measurements and creative ideas vied for my attention the way students who know the answer wave their arms wildly to get a teacher’s attention.

One by one I ticked off things I accomplished like the thank you notes for gifts recently received, clearing out the cedar closet, and taking inventory of my kitchen cabinets.  I even had time to take a short nap in the afternoon and though I didn’t sleep, it was incredibly relaxing.  I felt more organized and less frazzled.  This was the way I felt when I was working and knew precisely what was required of me and when.  How had I lost that way of operating since retiring?  It was as though everything had slowed down enough to let me catch up.

I found a recipe in a cookbook rather than searching for one online.  Heck, I must have a hundred of the best cookbooks in print and even though I can whip things up from memory, sometimes I like to see how other people put together their meals. The microwave was off limits too, so everything I prepared during the day was on the stove and in the  oven.  I began to think about growing my own herbs in pots on the windowsill and starting a compost pile.  Amazing how one thought leads to another! I just jotted it in my book.

After dinner my mother is generally quite tired, but I like to sit up and spend a bit of time with her before bed.  Sometimes we put M*A*S*H on the TV because it makes me laugh, and then she laughs at me, and a good time is had by all.  Since television was verboten, I asked if she wanted me to read aloud to her.  Usually she says no, which she did at first, but then I said it was a “no technology day” and she changed her mind.  I scouted the bookshelf.  Jane Austen-no; Poetry by the Brownings-no; Gone With the Wind-surely not.  What could I read to her?  Most of my books were reference books and biographies.  Then my eye caught a thin little volume:  Jonathan Livingston Seagull.  I hadn’t read it in decades.

We sat at the kitchen table with the radio off for a good hour, until the part where Jonathan decides to go back to the flock.  I changed my voice for the different characters, just like when you read to a child. She heard every word I said and was smiling and really enjoying our time together.  “Let’s save the rest for tomorrow,” Mom said to me, and I was reminded of all those bedtime stories she read to my sister Andrea and me and how it was my favorite part of the day.  I always liked to stop before the end so that there would be something to look forward to. Maybe that’s what she was unconsciously doing: She liked the idea of something good happening in the future.

I’ll have to find some more easy-to-understand stories, perhaps some classics written for young adults.  But I’ll have to do it on a day when I’m allowed to use my laptop.

 

Gaslighting and Dementia

I spent a couple of hours last night watching videos on YouTube about Caregiving and Dementia.  I’m afraid that if I don’t educate myself on a regular basis, I fall into the trap that many others do that all ‘memory disorders’ are similar.  They are not.  There are actually 46 different types. Forty-six!

I’m not going into the whys and wherefores of plaques and tangles – it’s all over the internet, which is a technological blessing because generations before us had to navigate in the dark, relying on scant information from books and personal experience, and incomplete knowledge from doctors. I’m not a medical professional and for the most part avoid detailed clinical explanations, but suffice it to say ‘forewarned, forearmed.’  I gloss over the gory parts and take what I need.

Have you ever glanced at a shelf of books, or a list of titles or internet search results and found one that figuratively leaps off the page? Well, that’s what happened to me last night.  I found a series of lectures by Tanis J. Ferman, PhD on YouTube entitled, “Behavioral Challenges in Dementia with Lewy Bodies“, and if I have heard the information Dr. Ferman gave before, I must have been looking out the window because I missed the one word that put everything I’d experienced with Mom since 2011 in order.

The word was, “fluctuation.”

Dementia with Lewy Bodies, the second most common dementia which claims about 25 percent of cases, is not a progressive loss of memory such as what occurs in Alzheimer’s.  It is a condition that fluctuates – one where the symptoms are good one day and bad the next. It’s unpredictable. It progresses like the stock market does when you don’t see any real earnings, but the direction keeps hinting that you might win or lose it all. You just never know for sure and so you, as a caregiver, have these incredible ups and downs. Sometimes I feel as though I’ve just gotten to sleep and suddenly there’s this big light in my face waking me up. And then I’m allowed to go back to sleep for a reprieve before it all starts again.

Something that Dr. Ferman said was so important that I had to rewind the video to hear it a second time:  “There are some studies that show that if caregivers are educated about the disease, if they learn about what to expect – how maybe to cope with some issues, there’s a reduction in caregiver burnout, there is an improvement in caregiver health. And not only that…when they looked at the patients themselves, the patients’ mood improved. So educating the caregiver actually had an impact on the patient!

Wow!  I took notes as though I was attending a lecture at college.  There it was: A full description of the challenges and concrete suggestions for overcoming them almost exclusively without medication!

By understanding that people with DLB can remember you one day, but not the next; that they can walk unaided and wake up after a nap and forget how to move; that they can hallucinate one minute, and then act perfectly rational right after.  Some have hearing and vision problems that cannot be corrected with eyeglasses or aids and so they can’t see the food on their plate or hear what you say even if you shout. It’s perfectly normal for them to stop eating for time only to pick up a fork and consume food as if there’s no tomorrow.  Or sleep days away with very little awake time other than to eat.

My son, like others, thought Mom was manipulative and playing some sort of game early on, but I knew she was not.  What she was doing was driving me crazy.  The 1940 movie, “Gaslight” comes to mind where a husband dims the lights in a house but convinces his wife that she is only imagining it.  Last night’s YouTube session set me straight.

They say that you should use few words, slow down and not explain things in depth to a person suffering with Dementia.  This is why Mom has trouble with television – there is too much going on.  But  after my sleeping beauty spent two days in bed, she stayed up to watch her favorite documentary until far into the night. It was entitled, “The Men Who Built America.”  Go figure.

 

 

 

My favorite day of the whole year…

Christmas Eve. There’s magic in the air – love, generosity and hope.

Listening to the beautiful hymns and carols from the now 500-year-old Kings College in Cambridge, England, has become an annual event for us. The phone rings to wish us a Happy Christmas, and cards from friends and relatives surround us.

My hope is that every caregiver – every person – reading my blog will come to know the joy that I have found in being with my mother at this time of life. She makes me laugh, she makes me cry, sometimes she makes me angry, but always she makes me grow. I am grateful for all that she’s taught me about living and loving, reading and music, and gratitude and God.

I thank all of the people who have unknowingly helped me in my journey, and wish you a very special holiday.

Merry Christmas to All!
Hillary and Adrienne

We were made for these times

I came across this piece by Clarissa Pinkola Estes that touched my spirit, and I simply had to include it here. Those of us who are baby-boomers may recognize a call to action within its beautiful prose.  We changed the world back in the 1960’s; I believe we can do it again for our aging population. Does that sound too hopeful?  I think not…

We Were Made For These Times

My friends, do not lose heart. We were made for these times. I have heard from so many recently who are deeply and properly bewildered. They are concerned about the state of affairs in our world now. Ours is a time of almost daily astonishment and often righteous rage over the latest degradations of what matters most to civilized, visionary people.

You are right in your assessments. The lustre and hubris some have aspired to while endorsing acts so heinous against children, elders, everyday people, the poor, the unguarded, the helpless, is breathtaking. Yet, I urge you, ask you, gentle you, to please not spend your spirit dry by bewailing these difficult times. Especially do not lose hope. Most particularly because, the fact is that we were made for these times. Yes. For years, we have been learning, practicing, been in training for and just waiting to meet on this exact plain of engagement.

I grew up on the Great Lakes and recognize a seaworthy vessel when I see one. Regarding awakened souls, there have never been more able vessels in the waters than there are right now across the world. And they are fully provisioned and able to signal one another as never before in the history of humankind.

Look out over the prow; there are millions of boats of righteous souls on the waters with you. Even though your veneers may shiver from every wave in this stormy roil, I assure you that the long timbers composing your prow and rudder come from a greater forest. That long-grained lumber is known to withstand storms, to hold together, to hold its own, and to advance, regardless.

In any dark time, there is a tendency to veer toward fainting over how much is wrong or unmended in the world. Do not focus on that. There is a tendency, too, to fall into being weakened by dwelling on what is outside your reach, by what cannot yet be. Do not focus there. That is spending the wind without raising the sails.

We are needed, that is all we can know. And though we meet resistance, we more so will meet great souls who will hail us, love us and guide us, and we will know them when they appear. Didn’t you say you were a believer? Didn’t you say you pledged to listen to a voice greater? Didn’t you ask for grace? Don’t you remember that to be in grace means to submit to the voice greater?

Ours is not the task of fixing the entire world all at once, but of stretching out to mend the part of the world that is within our reach. Any small, calm thipublic-domain-images-free-stock-photos-woman-earth-globe-white-short-outdoors-water-reflectionng that one soul can do to help another soul, to assist some portion of this poor suffering world, will help immensely. It is not given to us to know which acts or by whom, will cause the critical mass to tip toward an enduring good.

What is needed for dramatic change is an accumulation of acts, adding, adding to, adding more, continuing. We know that it does not take everyone on Earth to bring justice and peace, but only a small, determined group who will not give up during the first, second, or hundredth gale.

lighthouse during night time

One of the most calming and powerful actions you can do to intervene in a stormy world is to stand up and show your soul. Soul on deck shines like gold in dark times. The light of the soul throws sparks, can send up flares, builds signal fires, causes proper matters to catch fire. To display the lantern of soul in shadowy times like these – to be fierce and to show mercy toward others; both are acts of immense bravery and greatest necessity.

Struggling souls catch light from other souls who are fully lit and willing to show it. If you would help to calm the tumult, this is one of the strongest things you can do.

There will always be times when you feel discouraged. I too have felt despair many times in my life, but I do not keep a chair for it. I will not entertain it. It is not allowed to eat from my plate.

The reason is this: In my uttermost bones I know something, as do you. It is that there can be no despair when you remember why you came to Earth, who you serve, and who sent you here. The good words we say and the good deeds we do are not ours. They are the words and deeds of the One who brought us here. In that spirit, I hope you will write this on your wall: When a great ship is in harbor and moored, it is safe, there can be no doubt. But that is not what great ships are built for.

Written by Clarissa Pinkola Estes, American poet, post-trauma specialist and Jungian Psychoanalyst, author of Women Who Run with the Wolves.
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Mission: to change the culture

I spent most of yesterday trying to figure out this WordPress program, and after a few false starts (more than a few, actually), I managed to learn how to navigate around the dashboard.  The folks at WP are terrific – very helpful and nice.

In speaking with Nicola in WP support this morning, I was able to synthesize why I am so excited about starting this project.  I want to help to change our culture from a nursing home mentality to a caring-at-home one.  I enjoyed the film, Alive Inside the other night (mentioned in my first post “Music Therapy”), but it truly brought to light how things have changed from the days of our grandparents.

Let me tell you how my great-grandfather passed for I believe it is quite nice:

As my mother tells it, she was about seven and he, Alfred (aged 88), was sitting on the porch watching her roller skate.  After a bit he said he wasn’t feeling too well, and went inside to sit with his son.  They had a glass of Scotch whiskey together, and then my grandmother joined them.  “Hold my hand, Nancy,”  he said to her. Then, with his youngest son on the one side, and my grandmother on the other, he settled back onto the settee, looked into the distance and smiled.  And then he was gone.

Now, that’s how to do it.  I call it ‘popping off’ and i don’t mean it to sound flip or morbid, but I think that’s how most people would like to go.  We have to stop looking at advanced age with reluctance and dread – or turning away from it altogether.  Michael Rosatto-Bennett says in his film, Alive Inside, “We were made to age.”  We should face that fact and rather than regard it as a slippery slope downhill, look forward to the peace that can come after a long life of striving and caring for others.

Let’s take each day and be thankful for the good and the beautiful and be glad that wMom on the reboundere have this time with our loved ones.  Yes, it may be difficult at times, we may be moody, or uncertain, or downright angry now and again, but the bottom line is that we are doing a loving thing for a dear person who needs our help.

I told my mother we would listen to Handel’s Messiah later this weekend on the radio.  “Candles in the Fire?” she asked.

“Yes, Mom” I laughed.  I will always think of her answer from this day forward.

 

Welcome to my blog!

About this site

There are a lot of terrific sites devoted to the important role of caregiving of the elderly, and I owe my own personal success to the comments and advice that hundreds of anonymous people have generously posted on numerous websites.

With that in mind, the purpose of my blog is to synthesize what I have learned as a Natural Hygienist, alternative medicine researcher and loving daughter and mother.  My aim is to help those who, like me, are searching for non-medical palliative care solutions and products, and who wish to avoid the services of nursing homes and the use of medication.

In a sentence, I am advocating a natural aging process with an emphasis on living – and dying – at home in the care of one’s family.

Music Therapy

Today, December 16th, would have been Ludwig von Beethoven’s 245th birthday, and so the radio has been playing beautiful pieces of his music all day long.  It is a fitting day to begin my blog about my time at home as a caregiver for my elderly mother as we both adore classical music.  How much pleasure it gives my 88-year-old mother to listen to his symphonies and piano concertos! In a while, we will watch the movie, “Immortal Beloved,” and although I will have to explain to her what is going on, it has become an annual ritual for us to sit on the couch and cry together.

It doesn’t matter to us that the story may be a fabrication of a possible event in the composer’s life, we enjoy it immensely. What does matter is that at a time when Mom and I cannot take part in some of the same pastimes we did when she was younger, we have a connection which makes us happy.

How wonderful that I can turn on my laptop and get clear reception from a website when the radio is full of static, or I can turn to YouTube to play the music she loves.  She can watch the orchestra on the screen as well, or a ballet or an opera.  I’ve a collection of DVD’s  for her (defined as “nothing scary”), including Disney’s, “Fantasia” which, if you have never seen, will absolutely amaze you with its innovation and creativity!

Mom was formally diagnosed years ago with vascular dementia (although I always thought it might be Dementia with Lewy Bodies), but it didn’t take a rocket scientist to realize even then that her memory had been failing for quite some time.  She’s been living with me since early 2012 when it became clear that she was unable to care for herself.  Since that time, we’ve learned a lot of lessons, made a lot of adjustments, and come out smilin’.

This blog is an attempt to tell you how we did it – naturally.

Please, please visit this website about a wonderful movie directed by Michael Rossato-Bennett that won the Audience Award at the 2014 Sundance Film Festival.  It’s entitled, “Alive Inside: Music and Memory,” and it will touch you to the very core!

http://www.aliveinside.us/#land