Advice for Devoted Loved Ones of Dementia Patients

My father struggles with dementia and has for some time.  Earlier this year, my mother and I made the heartbreaking decision to have him join a memory care “community.”  I got the word, “community” from Dr. Jonathan McKinsey, a psychiatrist who addressed the Alzheimer’s Support Group that my mother and I attend.

Mom and Dad

Dr. McKinsey was entertaining, informative and compassionate.  The following morning, I took a long walk and considered what he had shared with us.

Live Where They Live

“If your loved one thinks it’s 1972, then talk about 1972.”  In my book, “50 Revelations from the Heart,” number 32 is, “Perception is reality.” This couldn’t be truer than for an Alzheimer’s or dementia patient. Their memories, the doctor explained, are becoming more narrow each day with recent memories being wiped away.  Inevitably, they do believe it’s 20 or 30 or even 40 years ago. So meet them there. Talk about the old times. Let them reminisce.  If you try to jar them into the 21st century, you will only frustrate yourself and agitate your loved one into a tizzy.

Set Them Up for Success

Don’t ask them to make decisions, but give them choices instead.  Instead of, “What do you want to eat?” ask, “Do you want a hamburger or spaghetti?” With a diminished executive function, loved ones dealing with dementia can become overwhelmed by daily decision-making. By giving them a framework in which to exercise small amounts of autonomy, they get to exercise control in a way that matches their abilities.

Another area Dr. McKinsey said can be problematic, is basic hygiene and dressing.  Remembering the order of things (e.g., socks then shoes) can become a challenge for some patients. But with reminders (written or verbal cues) the family member can get dressed more independently.  In fact, the doctor even suggested offering shoes with velcro and pants with elastic waistbands, to make the dressing process easier as fine motor skills begin to diminish.

Stay Involved and Supportive

Dr. McKinsey stressed the importance of staying involved and supportive of the family member. He told stories about individuals whose family essentially dropped them off at the memory care community and never returned.  These decisions are never easy and often make family members feel guilty.  And frankly, it’s easer not to watch your family’s matriarch or patriarch lose their cognitive skills. This is perfectly normal and something I can totally relate to.  It took weeks to prepare my dad and his new accommodations and with every step, the guilt grew in the pit of my stomach.  But with time and the limitless devotion of my mother, my dad acclimated, relaxed and began to enjoy his new surroundings.  And as a result, my mother and I are able to breathe a little easier.

Take Care of the Care Taker

As my father’s condition worsened, I began to worry about the toll my dad’s dementia was taking on my mother.  The good doctor said this was not unusual.  He recounted several cases where the care giver’s health suffers because all of their energy is focused on their family member.

My family was no different. Fiffty-six years of marriage and a 58-year relationship was changing more quickly than they anticipated and in ways they never imagined. There were times that my dad was frustrated and times that my mom was overwhelmed. It was only after it became almost impossible to care for my dad at home that my mom agreed to find a memory care community for him. While all of us wish that Dad remained well enough to stay home, the memory care community has been liberating and helpful for both of them. Dad is safe and Mom sees him every day. She is getting to know the staff, the other residents and their families. Now their time together is truly quality time, looking at old photographs, reminiscing or listening to music.

Farewell, My Friend

I just found out that a friend has died. Suddenly. She was vibrant, smart, sassy and bendy. We became friends about 15 years ago through yoga.  We practiced together and laughed together. I admired her flexibility and her eagerness to try new poses with reckless abandon.

I’ll admit, we weren’t close.  I would see her at practice occasionally, and at local haunts and parties, as we seemed to have several mutual friends.  But when we did see each other, there was a connection that went beyond the superficiality of acquaintances. We seemed to travel instantly from, “Hello!” to deep topics without batting an eye.  We were also Facebook friends, commenting on each others inspirational posts.

Our last exchange was on Facebook. I was in Peru on holiday and shortly after I posted photos at Machu Picchu, she replied with her own.  Another thing we had in common – pictures of ourselves doing yoga poses on the hilltops of Machu Picchu.

Somehow, I thought this casual friendship would last forever. That the promise to grab a cup of coffee or chat over a bottle of wine would just magically come to fruition.

But it didn’t.

We ran out of time.

Time we could have spent enjoying each other’s company.

Time that was wasted.

It’s a cliché to say that she is gone too soon, but in this case, the cliché is reality.

My friend, I will miss you and the promise of our friendship that never quite blossomed. May your release from your physical existence bring unlimited joy and great expansiveness.

Campus Assault: My Own Story

With all of the news about sexual assaults on college campuses over the last few months, I feel compelled to share my own experience, as mild as it was in comparison to some of the stories we hear today.  Keep in mind, this wasn’t this year, or even this decade. This was the fall of 1980.  I was a long-haired, 88-pound, 5-foot-tall freshman with an attitude, who thought I knew how to take care of myself.

The Incident

On my first Friday night at college, my sophomore roommate offered to take me with her to a frat party.  I eagerly accepted, as this would be the gateway to my new social life.  When we arrived, it was packed with fraternity brothers, frat-boy-want-to-be’s and lots of girls.  Soon after our arrival, I lost track of my roommate amidst all of the chaos.  I was not concerned and just continued to look for her in the basement of the old frat house, weaving my way around small groups of people.

That’s when it happened.

The next thing I knew, I was pinned against one of the basement walls, being pawed and kissed by some young man I had never seen.  Horrified, I jabbed my knee into the only place I could think of, and he fell to the ground.  I tore off in search of my roommate, quickly finding her talking to one of the fraternity brothers.

Explaining what had happened, we walked back to the scene of the crime, where the assailant was just beginning to stand up.  He was immediately ejected from the party.  Shortly thereafter, my roommate and I went back to our dorm room, the incident tucked neatly in the back of our heads — still there but not worthy of further discussion.

It was not until the following Monday morning that I realized my assailant was in my chemistry class. As I came in, climbed the stairs and sat down in the back of the auditorium-style classroom, I scanned the people in front of me, and there he was, looking back up at me.  Shocked and distraught, I sat there, not knowing what to do.

The Denouement

And so, I did nothing. Ever.  In fact, I completed that course, his menacing figure always several rows in front of me.  I never left my dorm alone after that.  In fact, I never went anywhere alone for the remaining years I was there. And I never shared my experience with campus authorities or my friends. Even today, most of my family and friends know nothing about the incident.

So why share this story now, almost 35 years later?

Because this is not a new problem.

Because not reporting it was wrong.

Because corrective action should be taken in campuses across the country.

Because I don’t want my daughter to have a similar experience when she becomes a college freshman later this year.

Ode to a Home

The following was written last week, but it took a bit of time for me to finally post this. 

As I wait for the movers to arrive today, I’m not sure where I am emotionally. In just a few hours, I will leave the house that was the anchor of so many of life’s big and small moments over the last 18 ½ years, like the birth and growth of our only daughter, weekly family dinners on Sunday evenings, yoga on the deck, impromptu and not-so-impromptu celebrations.  Over these years, we have taken this tract house and made it a home by customizing its appearance, making it a reflection of the family that dwelled within its walls.

And now, as I sit in the kitchen for the very last time, I review my walk with Roxie from yesterday. It’s the same route we’ve traveled almost daily since she joined our family almost 8 years ago.

A foggy day, the juxtaposition of natural beauty on the gray, almost eerie, background seemed to be a fitting final experience.   The trees, flowers, and lakeside views are all of the things that brought me to love this neighborhood.  Yesterday, it seemed as if Mother Nature had prettied herself up just for me. The flowers popped with color and the trees began to show signs of fall marking the change in seasons. How fitting. The clouds that hung over the lake also seemed to foreshadow the unknown that lay ahead as we enter this new chapter of our lives, uncharted even though we will remain close by in familiar surroundings.

So, I post these last photos from yesterday’s walk in tribute to our home and neighborhood.  I know it’s just brick and mortar, but this house will forever be a symbol of the happy times we shared as a family.

The colorful leaves signaling a change of seasons.

More gentle changes in the trees.

Roxie’s favorite attraction on our walks.

A lakeside view I’ve photographed many times.

 

Some of our beautiful landscaping that I will miss.

 

 

Women not gonna take it

The following is a post I wrote as a  guest blogger for The Orange Line, who are working with women and companies to integrate career and life.

These days I feel like I’m caught in a never ending loop of Twisted Sister’s song, “We’re not Going to Take It.”  After 18 and 11/12 years of marriage, my husband and I called it quits, primarily because we weren’t going to take “it” from each other anymore.  “It” was the sense that a Grand Canyon-sized chasm had settled in between us.

As news spread through my network of friends, I inventoried no less than 14 – yes – 14 friends going through exactly the same thing for exactly the same reasons.  While 4 of them are men, the remaining 10 are strong, vivacious, smart women who want – dare I say – are beginning to demand more out of the most important relationship in their lives. <read more>