Posts Tagged ‘Dementia’

Days of Reflection Amid the Emptiness

During the last week of Mom’s life, the dementia had ramped up. It seemed to be stomping over her brain like Huns on a battlefield. Leaving her full of angst and confusion. Early one morning she fell and banged her head. It caused a brain bleed and three days later Mom died.

During those three days in palliative care, my brother and sister and I watched over her. I took the nights. The quiet time—a gift of time to say goodbye. To say the things unsaid in the stress of living with dementia.

As I watched her breathing, part of me wanted her to never stop. To never leave us. But I also wanted her to let go. To go find the peace and rest she couldn’t get here anymore. I knew what a struggle it was for her to find joy in anything anymore. Mom had grown bone-weary of living.

Since Mom died, I’ve done a lot of sitting. A lot of reflecting on her. Reflecting on what the dementia did to her and the one thing that has surprised me has been the depth of my anger at that soul-sucking disease. I feel it every time I stand in the doorway to her room. I feel it when I step outside and realize there’s no reason to rush back in and it bubbles around the edges of that uncomfortable hollow in my gut as I pack away the pieces of her life. I see the anger, I understand it  and I know only time will absorb it. So I quietly wait.

I’m finding another little surprise too. There’s this little wobble of peace poking up here and there because finally, finally, she’s no longer afraid, Or hurting, or confused. Or sad.

And because as long as her family is upright and breathing she hasn’t left.

I love you Mom


hiding in bushes

Was someone hiding in the bushes beside me the other morning as I wrote my morning pages? Perhaps smoking a doobie and blowing smoke in my direction?  Must have been a stoned pervert lurking nearby, filling my senses with leftovers because why else would I have written some of the wanked-out things I did?

Another reason why, as I wrote last week, I like to burn my early morning journaling  into non-existence. Immediately after writing.

I. Do. Not. Like. To. Read. Old. Words.

But for some unknown reason I kept the pages that day and as I reread them this morning I couldn’t help but wonder who did a jig on my brain cells? There are the days I want to step outside of myself and look at me with both eyebrows dancing on top of my head.

Other than that brain farting writing episode, my week has been curiously twisty. Things are again escalating downward with Mom. Dementia is flowing in and out of her brain like waves on a beach and the tide is rising. One minute she’s Mom. Next she’s a visiting patient and thinks it’s time she went home. Or she a lost soul with that deer-in-the-headlights look. Maybe ten minutes later she’s exhausted, takes a nap, and wakes up back to Mom, as if she never left. You just never know, when you come around the corner, what you are going to find.

Maybe I should find that doobie-dabbing perv in the bushes and join him. Might loosen up some of that feeling of living like jack-in-the-box. . .

But I doubt it.


Or more moments from the world of dementia explained.

Mom calls from the doorway of her room. “Hello—when someone has a minute could you come here please—I have a question.”

The nameless “Hey” tells me she is lost again and my inner child begins to whimper, Don’t want to go, no, no, no, I don’t want to go, and the further down the hall I travel the louder she protests.  I stop just out of sight at the last corner and tell my little self to suck it up even though I know, like she does, it’s not one question we’re on our way to answer. No way.  Once we step through the doorway to her room we fall into Mom’s rabbit hole.

Another shared bonus of dementia.

Answering questions sometimes feels so pointless, so futile and at times I swear I see myself aging as I stand there answering another endless loop of questions.

Books and articles advise the caregiver to remain calm and quiet. Most of the time that’s best but every so often I realize Mom isn’t hearing me. Either her mind fog is too thick or her angst has ramped up too high and she’s stuck so I call her name loud and sharp. It stops her dead. It’s like I’m a big fat old fly who’s crashed through the spider web stickiness in her mind. Sometimes it works, sometimes it doesn’t.

There are many layers of frustration in the world of dementia.

And sometimes those frustrations end up hanging off me like teeny-tiny grizzlies by the time Mom has settled down. It’s those times I need to vent and if Man-wonder is unlucky enough to be around he gets my full grump and glare routine.

But he’s a smart man. He stays silent and he doesn’t flinch or tsk as I snarl and make quiet bangs with anything handy. No, he patiently lets me empty the uglies and has calmed down before he takes action. Then he goes into full Man-wonder mode and does something so stupid,  so off-the-wall, sometimes even slightly illegal that I end up in tear-inducing laughter.

And trust me—a middle-aged woman laughing uncontrollably isn’t always a good thing. . .

Round 2: Dementia 10, Peace of mind 0

Mom’s dementia is progressing. Or would that be regressing? Since she is reverting to an earlier less-advanced state of mind.

The slipping away from herself is a most uncomfortable leaving.  Her mind cannot relax because she is still partly aware of ground lost. And Mom is afraid of the emptiness dementia is forcing upon her.

“I’m goofy. I’ve lost my mind.” She tells me.

“Relax” I tell her, “You’re only losing part of it.”

It makes her laugh. For a moment. Until the words are sucked into the darkness where her memory once lived.

How much am I my mother’s daughter? If I develop this disease, will I feel fear? Will I live in a worried state of mind like her?  Or will my practice of meditation, of being comfortable in the nothing, stay with me?

I don’t know. I’ll worry about it if dementia decides to live in my brain. Right now my goal is to walk with Mom until death takes all of her. And I will.

So what has dementia taught me?

That frustration is the result of rigid thinking; expecting things to go a certain way. Dementia has no certain way. Just when you figure out a pattern —POOF— it’s gone.


That I have not learned nearly the patience I thought I had. I find my thoughts edged in ugly because of my impatience at Mom’s endless cycle of repeated questions.

What else have I learned?

That anger really is the growth of fear. Fear that I can’t be enough. Fear that I’ll not have the strength when it’s needed most. Fear that I will come to hate the dementia that is her.


That each person’s dementia is his or her own little hell. And while there is general knowledge of the disease, labeling it is like trying to put the squeeze on liquid mercury.

So that’s where my brain has been hanging out this week—In some ugly little old black hole. . .only it’s been my choice.

Brain in gear. Sort of.

What’s been going through my brain this past week?

  • How utterly special a sunny day is. Even more precious when you can actually get outside and feel the sun on your skin. The only downside, this time of year, is realizing that your ginormous goosebumps have blocked any rays from being absorbed.
  • Man-wonder and I have been drooling over our latest purchase (we’re calling it our winter vacation). It’s Danny Gregory’s latest book, An Illustrated Journey.61vTWfvqXGL__BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU15_OMG! This book is as delicious as

Tamar Adler’s An Everlasting Meal 51zX8T7IrDL__SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU15_AA160_only Danny’s uses art supplies instead of food. Danny has also been releasing video interviews with artists from the book. What a double treat!

  • Manage to get keep it sane on a day where Mom was so lost in space she asked the same three or four questions all day long (and I do mean allllllll day long). Then the next morning the dementia did a flip. She woke up with her mind in place and it pretty much stayed where it belonged. A day like that feels as good as a sunny day.
  • And speaking of brain cells—look at this gem I found; ‘Brain cells come and brain cells go but fat cells last forever.’  Man, things like that make me want to crawl back into bed and never get up no more, no more, no more.                     No wonder diets don’t work!
  • Earlier this week Mom banged the corner of her forehead on a kitchen cupboard door and because she takes blood thinners the spot ripened up like an eggplant. Not huge, just noticeable. Here’s the dilemma; Do I chance taking her out for a ride where others might see her bruise and think elder abuse.. . .Or do I lock her in a closet till the bruise is gone ?                                             Relax—anyone who’s ever heard Mom yell knows I’m wallowing in  black humor. She’s got a set of lungs that would put a hog-caller to shame. Trust me on that one!
  • And finally, what am I doing to keep my brain cells in their own place? Each morning I wake up and tell myself I will choose to accept the day as it unfolds; I will choose contentment with what I have; and I will  choose to be wealthy.          (I think the universal energy is taking a different path with that last one.)

One last thought on brain cells:  If the left side of the brain controls the right hand—does that mean only left-handed people are in control of their right minds?

Lying has such a stink attached to it!

flatulence 001

Taking care of Mom is a daily set of repeats—often tedious to the point of wanting to rip the stuffing out of something. Man-wonder has learned to recognise that glint in my eye and quietly remove himself from arm’s reach. (And they say monkeys never learn!)
Days can run long and dull in the world of dementia until unexpectedly a moment or two of sharp reality shines through like sunlight through a murky windowpane.
Just the other day was such a moment. Mom and I were sitting together, sipping cuppas and munching cookies when she noticed the book in my hand and asked what I was reading.

“A Compassionate Life by Marc Ian Barasch”, I said and immediately regretted saying it because I figured we were heading into another mind field of repeated explanations, which typically end with her saying, ‘Oh, never mind. It doesn’t really matter to me anyway.’ Which is then followed by me excusing myself and heading downstairs to bang my head on the ironing board, (it’s padded).

Sure enough—her head tilted and she said, “Explain please”.

Hoping it was enough, I read the words under the title, “Walking the path of kindness”.

“That’s the last thing you need to read,” Mom said to me.

I looked at her in surprise. “I have a problem with not accepting things as they happen.”

And that’s when it happened! Mom and I got into one of our mind/soul filling discussions about life.  It was as if we’d stepped back about two years. Back to when we’d sit out on the deck, discussing the world, religion, family and all things in between while playing scrabble. Oh, lord it was bliss!
But, with dementia, bliss, like everything else, has a super-short attention span.
Two chickadees landed at the bird feeder and as quick as it started, our conversation vanished. When they flew off Mom noticed my book and asked, “What are you reading?”

So help me—my brain flashed on a comment I’d read. Where the person lied to relieve the monotony of repeats and I did, “A book on how to fart properly” I said.

“That’s the last thing you need to read,” Mom said.

Hmmmmm – did we turn a corner or complete another circle?

Sitting In Time-Out

time-outWell, it finally happened.
I gave myself a time-out. And now I truly understand the look on a child’s face when they are forced to sit in a puddle of their own emotions.
It doesn’t help so much.
Yes, it waylays the overwhelming urge to throw oneself on the floor and scream like a demented wrestler but don’t let any parent bs you – all the sticky feelings are still there. They’ve just been temporarily blanketed.
At least that’s how I feel right now with Mom as her holiday angst ramps up and up and up and . . .

Next year, if the three of us are still here, all calendars will be removed. All newspapers temporarily cancelled and phony window coverings with pictures of hot summery days will be installed. And I’ll lie like I was born to it. I’ll do whatever it takes to get through the holidays with my mind unexploded. I swear I will.

But I know that’s a lie. I won’t.

And all self-pity kidding aside, everyone knows how difficult holidays are for those suffering with mental disorders. When someone is a natural people pleaser like Mom, the anxiety levels increase. The pre-holiday sense is one long cycle of feeling like something needs to be done but they can’t figure out what or they stress because they can’t remember their holiday preparations. So they cycle and recycle the emotions and if the caregiver reacts to the anxiety, they react to the reactions.
Oy Vey!

And that is what forced me to stick me in time-out.

I wonder if it’s too late to learn stress-relieving bad words in sign language?

Patience Grasshopper Patience

Living with dementia is often like taking an unexpected trip to a place you weren’t expecting to go and would never pick—given a choice.

When the Doctor declared Mom as having dementia (big surprise!) he said she would benefit by attending group activities. He stated people with dementia tend to push themselves to behave in a more ‘normal’ manner when in a group. I remembered telling him that the stress on her, being a loner, would far outweigh any benefits. I don`t think he believed me.

Yesterday I proved I was right. Mom’s day began like usual and she managed her usual routine without much help. Then midmorning I had a visitor and the entire time my visitor was around I was impressed that Mom seemed content to sit in her chair, working on her crossword book and re-reading the newspaper instead of spending the time in her bedroom. I did notice she was quieter than usual after the visitor left but all seemed ‘normal’ until after dinner. That’s when Mom looked over at Man-wonder and  myself and said, ever so calmly, “I think I’ll go home tomorrow. I don`t want to leave my house empty for more than a couple of nights.”

Mom has been living with us for eight years.

That single statement showed just how stressful she found acting ‘normal’. Memory cells were jumping off her at the same speed fleas leave a dying bird. Here Man-wonder and I were thinking how well she’d handled the day. . . and all the while she’d been leap-frogging downwards.

So I admit—if there is one thing about dementia I know – it’s that I don’t know anything about dementia.

And our lives have truly become one day, one step, one moment at a time now.