End of Life

The post I had in mind for a month ago was “Cooking for One”, but I found myself, not for the first time, with writer’s block.  It’s been a rough last few weeks.  So, today, forcing myself to write, I decided to post what’s kept me from writing.  “Cooking for One” will have to wait.

It should come as no surprise that my somber mood has to do with Martin. Over the course of the summer he declined significantly, more seriously so in the past few weeks.  Hospice says it’s a matter of months.  I ask the question.  A few months?   Several months?  They don’t know.  Just months.  Martin’s primary attending predicts a more rapid decline in the next 90 days.  But, even he doesn’t know for sure.  All they know is the signs are there for end of life.  But, this disease is as unpredictable as it is cruel.

I’ve long steeled myself for this moment, yet somehow through all the years of anticipatory grief, I wasn’t prepared for the overwhelming feelings of impending final loss.  Adrift.  Alone.  Indecisive.  Unfocused.  I feel as if I’m slogging through mud up to my knees.  Just putting one foot in front of the other takes effort.  Yes, I’m depressed.  Who among us wouldn’t be.  We all experience loss throughout our lives.  We walk through the actuality of our sorrow to hopefully come out on the other side to accept the loss and start our lives anew.  It’s the getting there that depletes us.  

This end has been coming for the past ten years, twelve if I count the two years prior to retirement.  That’s when I noticed changes in Martin’s once predictable personality.  Blamed on stress and depression he chose to retire from his pressure cooker job.  It was one night not soon after that we sat in the kitchen sipping cabernet and talking about dinner.  Instead of bowl Martin described mixing something – I don’t remember what – in a box.  “You mean a bowl,” I said.  “No.  A box,”  came his answer.  Perplexed, I got up, went to a cabinet and pulled out a bowl.  He smiled and said, “Oh. Yeah.  A bowl.”   I brushed aside my concerns not knowing a years long trial had just shown itself.

My vast experience as a caregiver tells me the best thing I can do for me and Martin is take care of myself.  To that end I started seeing a counselor again.  Hospice, of course, has social workers and a chaplain to talk to.  Family and friends are getting me out to some fun events.  And, my readership gives me purpose.  Last week I took my first ever yoga class.  It was so rejuvenating I wish I had started sooner in my caregiving journey.  I read Joan Didion’s The Year of Magical Thinking for a second time.  With its honesty her memoir about the year after her husband’s sudden death speaks to me as I experience many of the same emotions, confusion and wishful thinking.  Meditating and reading my spiritual guide each morning at least starts my day off on a peaceful note. 

I sit with Martin, who no longer recognizes me, looks at me, won’t let me hold his hand, but still allows me to rub his shoulders.  He can no longer say even one word.  I talk to him soothingly telling him it will be ok, not certain if I’m reassuring him or me or both of us.  I’m hoping somewhere inside what remains of my Martin he recognizes my voice and takes comfort from its sound.  And I pray for mercy and grace for a peaceful death.  Soon.

Lighten Up

I received a lot of insightful comments to my query on retirement challenges.  It sounds like we all realize retirement is no different from the other times of our lives.  There are ups and downs we weathered and will continue to weather as we age.  For some of you the challenges provided inspiration to find new meaning and purpose enriching your retirement.  For others, you faced unexpected loss as I did early in my retirement.  For others still, it was a matter of accepting the situation, what I call lightening up. 

For me, while recently working on creating a greater idea about my life, I’ve encountered some setbacks beyond my control.  As someone who’s always tried to control events learning to let go and allow this evolution to flow wherever it takes me is a challenge in itself.  My personality was never one to lighten up.

Now, I find myself with no other choice.  The new house is on indefinite hold.  I haven’t sold my current house.  In order to build the new one I must first sell this one.  Our inflationary period played a role, but the big deterrent came out of the blue.  Following the height of the pandemic, people are still working from home and many will continue to do so.  I lost two serious working-from-home buyers wanting to live the rural life, but needing the ability to video conference.  I now know more about the internet than I ever wanted to know.  

My Modern Farmhouse Now On Hold

I have high speed internet.  However, the download is fast enough for video conferencing; the upload is not.  The upload pushes information out into the world wide web.  The only way to increase the speed at my house is access to fiber optics, which my carrier predicts is at least a year away.  As I write this fiber is being laid a mere eleven miles from my house.  According to a recent article in The Washington Post only 43% of the population in the United States has fiber optics.  The Biden Administration passed a bill to extend fiber into rural America and Michigan received its share of the funding.  As we all know, everything takes time as a project of this magnitude requires lots of labor and materials to execute the plan. 

Since I need to rent while my new house is built, I was also in a quandary about where I would live.  Not only are rents exceedingly high, every single place I contacted had long waiting lists.  Very few offered short-term leases of six to eight months.  In the college town of Kalamazoo with thousands of rental units I was shocked to find nothing readily available.  With my three cats and Rachel’s three dogs, moving in with her family is out of the question, unless we want the fur to fly.  Consequently, I decided to take the house off the market and wait out inflation, market fluctuations and laying fiber optics.

Though disappointed I’m also grateful I don’t have to move.  I have the luxury of staying put a while longer.  And, with all the work preparing the house for sale, I can sit back and enjoy the fruits of my labor.  We all face challenges.  The ups and downs are normal.  We work through our current sticky wicket, reach a plateau and then the next glitch appears in our lives.  Working through each one is called growth.  We learn, compromise, rise to the occasion, adapt, acquiesce or whatever else it takes.  It’s all part of our evolution.  I decided to surrender to this moment.  I know what I’m seeking and eventually it will happen.  For now, I’ll continue doing nothing and just lighten up.

What Are Your Retirement Challenges?

As my retirement turned into an unplanned roller coaster ride with ups and downs I’ve wondered about my readers’ experience in the time of Covid, inflation and other uncertainties.  I think of all the retirees planning to travel by air or land or spend leisurely days on the golf course or tennis courts, beach or lakes.  There are the dreamers of a long awaited tour of other countries or an RV adventure.  People who want to start a second career or volunteer, take classes, start a new hobby, spend more time with grandkids. You’ve heard about my journey; now tell me something about your experiences.  

By asking you to share your experience with others I believe we’ll find we have a lot in common.  Sharing can create change, a feeling of community and the knowledge we aren’t alone.  Oftentimes, we keep our battles hidden.  I deliberately exposed mine through this blog hoping to help other retirees work out what I saw as common dilemmas from identity loss to how to fill our time.  Reading the comments to some of my posts helped me realize I wasn’t alone and gave me insight and ideas I might, otherwise, have not encountered.

At one time I really thought my retirement was over.  Maybe even an enjoyable life would never come again.  But, I found I had more resilience and strength than I ever thought possible.  Enter Covid.  I thought the world had gone to hell in a hand basket.  Being house bound was difficult; going out with a demented husband was even more difficult.  Getting him to wear a mask, social distance, use hand sanitizer took all my patience some days.  I thought retirement couldn’t become more difficult, but then I thought of the people around the world suffering far more than I and Martin.  For years now, I call Tuesday Gratituesday as a way to be sure I count the good things in my life at least one day a week.  That kept me going with hope.

What have you faced my friends?  Did Covid or some other event derail your retirement plans?  Did you work and continue to work?  Did you retire early?  Did you shelve plans to travel or golf or visit museums or wineries or other parts of your country?  Now we are experiencing high inflation.  It’s higher than it’s been in decades.  There are supply chain issues.  Travel is expensive and from what I’ve seen on TV air travel is frustrating as flights are canceled or delayed.  Are you like me and experienced a health crisis with your partner or yourself?  The list can go on and on.  

Retirement is much like our pre-retirement lives – stuff happens.  What challenges have you encountered.  How have you handled those challenges?  Did you handle the challenges?  Let’s help each other by sharing.  We’re all on this journey together.

Happy Gratituesday!

Decluttering – Or The Big Purge

My Mother’s good luck charm

In order to reinvent my life I must divest myself of fragments from my past.  Like my best memories of Martin, I’m keeping the possessions, which are dear to me.  I’m not seeking a minimalist lifestyle, but one honoring our past while giving breath to what lies ahead of me.  Unlike past decluttering this one requires a wisdom imbued with greater purpose.

I had a longtime habit of cleaning out closets and drawers each January as my version of out with the old, in with the new.  Somewhere along the path I’m on that annual ritual went by the wayside.  When we sold our South Carolina house, I did a major declutter.  Or, so I thought.  

In preparation for the sale of my Michigan house, I began going through drawers and closets with the purpose of decluttering.  As I cleared drawers of stuff, I also considered furniture, which won’t fit in my new smaller home.  Lists of things to donate and items to sell forced me to realize I wasn’t decluttering; this was the big purge.

There were obvious items that must go, like Martin’s bicycle, gear and outfits along with sport coats, dress shirts, slacks, leather belts and shoes. No reason for any of it to languish in closets and cubbies when someone else could make good use of it.  It took two weeks for me to act on selling Martin’s bike.  I cleaned it, polished it and looked at it day in and day out.  I felt frozen in time, slogging through quick sand.  After mustering the courage to drop his clothing at Good Will, I felt relief.  Then, a few hours later, came a serious meltdown as grief washed over me in a torrent of tears.  Divesting myself of his belongings was accepting he would never walk through the door again.  Once I was all cried out, I let go of the bicycle as well.  It was a kind of release.

Martin’s racing bicycle

As I sort through our lifetime with a mostly clear head I didn’t have in 2019, I often ask myself why I paid to have this or that hauled from South Carolina.  Taking a page from organizational expert Marie Kondo, so much of what I had didn’t spark joy.  “Did it spark joy for me?”, became my precept, albeit one which is resulting in keeping a few things that may not evoke a modern farmhouse style.  Looking at my Great-Great Aunt Josephine’s crystal jewelry box, I opened it.  I lifted out a chestnut.  Hard and brown my Mother carried it in her purse as a talisman.  As I ran my fingers over its smooth rich decades old surface this memento from my Mother was now my symbol of juju, mojo, good luck.  A practical woman, a strong woman, her spirit would help me push through this arduous task.

As with the chestnut, possessions carry energy in the memories they summon in our spirits.  I looked at the five sets of dishes from the dinner group we belonged to in the 1990’s.  I hadn’t needed nor used all this entertainment paraphernalia in decades.  The dishes, napkins and rings, table clothes and serving dishes.  In an epiphany I realized it was the memories I was holding onto, memories of those evenings when we gathered monthly to break bread.  Fun nights like the mystery dinners where we dressed up as various characters in a whodunit.  And then, there was the toga party where neighbors must have thought we were crazy traipsing through our garden, glasses of red wine in hand, with our guests,  all of us dressed in bed sheets!  I would keep the memories and some of the accoutrements, but it was time for most of the physical trappings to go.

Following my second car load of memories taken to Good Will the picture was becoming clear.  There were certain objects, furniture, glass ware, keepsakes I would never part with.  Antique pieces from both our families needed to stay with me a while longer.  A few pieces of the furniture we bought during our marriage were now vintage, slightly marred with scratches or glass rings where a coaster went unused.  There is no place for a couple of items in my to-be-built new home, but I’m making a place.  

The large marble coffee table in the great room was originally on the chopping block.  Then came the evening I sat in front of the fire place mindfully looking at its smooth surface and rough edges, the tiny scratches from grandchildren running toy cars across it along with a few water marks from spilled drinks. Martin and I had gone to The Street of Dreams charity event while living in Seattle.  In an 11,000 square foot show house sat a marble coffee table dazzling us both.  A couple weeks later Martin went on a motorcycle ride returning to announce he’d found such a table at Frederick and Nelson Department Store.  He wanted to buy it.  And so did I.  I knew now I couldn’t part with it. It represented a joint purchase, a joint love of beautiful things.  Though now imperfect with blemishes from nearly 40 years of use, this table also represents the joyous imperfection of our lives.  As with ourselves, we looked upon the blemishes as character.  There are possessions, which are just baggage.  And, then, there are things, which warm my heart each day, that spark joy and must continue to color my life.  Despite its ultra modern look the marble table stays.

As I empty the house of remnants of my past life I feel less overwhelmed, lighter, more forward looking.  I’m honoring my past.  And, making room for my future.

On Being Single

While this post seems strange to me on Valentine’s Day eve, it is the approach of February 14 which fostered my curiosity about my current sense of singlehood.  I began looking closely at what it means to be on my own after half a century.  While searching within, I also, of course, searched the web.  There are lots and lots of articles and blogs on being single.  I had to diligently drill down in order to find articles, which weren’t how to’s on dating again or finding a new partner.  Searching my heart and soul, I already knew I want neither.  According to the Pew Research Center living without a spouse or partner under the same roof means I’m single.  

Yes, yes I know.  I can already hear someone saying, “But…but it’s almost Valentine’s Day”.  For those of you with another partner after the death of a spouse or a divorce, I wish you a happy life together.  You are all very fortunate people.  You are also people who most likely made the choice to seek another partner.  Or, perhaps, there was a bit of serendipity at play.  Although I’m now single by chance and location, I’m choosing to remain single for several reasons.

One of many books of love Martin gave me over the decades. This one from the 1970’s is my favorite.

I had the good fortunate of a long, long marriage to a man who enjoyed cooking together, shopping together, working with me in the garden, while I went on motorcycle rides and hikes with him and cheered him on at bicycle time trials.  If something needed repair whether bicycle or house, I was the extra pair of hands. We supported each others careers, with Martin even becoming the trailing spouse for my job move.  Fun for us was creating great meals at home, stopping at our favorite pub for lunch or supper, going to art galleries, museums and historical sites, an occasional play or concert and later creating our art.  We raised two kids and were rewarded with wonderful grandkids.  We had good times and some bad times.  It was all a lot of work, compromise, give and take.  It took years and a mutual commitment to create what we had.

Then, this unthinkably horrible disease took away our beautiful life together, making me Martin’s caregiver and slowly stealing his mind and spirit.  And, now, leaving me to carve out a future of my own, on my own.  I still have our loving family as does he.  They give me support and advice, but the reality is I’m single, alone, but not alone.  As I do today, I will always have a hole in my heart for this profound loss.  

However, at this juncture in my journey I’m also savoring buying my land, planning my new house and making the inherent dozens of decisions with no other consideration than what I want and can afford.  While it’s sometimes scary because all errors in judgment fall squarely on my sagging shoulders, it’s also exhilarating to be forging a new identity.  I feel like a kid again, only with lots of experience.  

As is my habit I didn’t make New Year’s resolutions.  But, I did write goals for 2022.  Perhaps, they are one and the same.  Topping my list is self-care.  Self-care is not being selfish.  It’s putting your own oxygen mask on first so you can help your fellow passengers.  More than one well-meaning person recommended I volunteer as a way to handle my grief.  When I’m fully breathing again, I’ll go back to volunteering.  Following years of caregiving and putting Martin’s needs first, self-care is putting my needs, health and well-being first.  It doesn’t mean I’ve forgotten Martin.  It doesn’t mean I don’t still love him.  It doesn’t translate into I’m no longer grieving.  In fact, part of my grief is finding myself without my lifelong partner.  It’s possible to grieve and, at the same time, feel joy again.

Accepting my single status allows me to envision my future.  I was one-half of a pair in an egalitarian marriage.  The chances of finding another partner wanting or even willing to cook, shop, clean, do laundry and be supportive of my activities outside the home is pretty much nil, especially since at my age, there are far fewer single men.  The reality is women still live longer than men.  Consequently, we outnumber them in the millions.  

I’m also set in my ways.  After five decades with one man, adjusting to a new partner is not anything I want to tackle.  While there is a void with Martin’s decline and subsequent absence, it’s not one I feel a need to fill.  I handled all the finances, paperwork and our social calendar.  As he declined I even learned to make repairs around the house by watching YouTube how-to’s.  I’m most proud of unclogging the dishwasher drain after a glass broke filling the drain with shards. With family and friends, as already mentioned, I’m not alone or lonely.  I’m finding new meaning and purpose in my life, including my return to blogging.  I’m quite capable of caring for myself and have every desire to continue doing so.

All of the above adds up to my choosing to continue living my life in singlehood.  One of my other goals for 2022 is finding me, the real me, the self-directed me, the me without a partner.  I have a house to build, classes to attend, books to read, people to meet, places to go, music to listen to, art galleries, museums and historical sites to visit, trendy and not so trendy small towns to explore, along with locally owned restaurants where I’ll savor good food and wines, cooking great meals at home and creating a new landscape to go with my new house.  Whoopee, more plants, more gardens!  And, of course, not doing anything at all…just being…just me…and my cats.

Renewed Retirement Dreams

First I want to say, “THANK YOU” to all my loyal readers for staying with me.  I humbly appreciate all of you as well as the kind comments and encouragement.  For those of you on a similar journey as mine I wish you a clear path to ease your way forward.  It will take some time for me to figure out WordPress all over again as they made many changes in my absence.  Time, however, is what I have.  My return to blogging is part of my self-care as I share my retirement story once again.

Most of us retire with deliberateness.  We plan and dream.  As I sit here writing with the serenity of lightly falling snow in my view, I think of all the plans Martin and I made.  None of them included a life shattering illness.  Yet, here I sit mapping a new retirement path.  And dreaming.

As spring 2021 arrived with arrangements to place Martin in memory care, my doctor counseled me.  Don’t make any major changes for at least a year.  Do engage in a period of extended rest and self-care.  After all, I was grieving and dealing with the attendant guilt, which comes with such a decision.   

Seven months later I went straight into the deep end feet first with a major change. It felt right and still feels right.  On the surface my actions appear to be on a whim, but I assure you much thought went into it.

I knew from the moment we bought this huge house I’m living in it was never going to be permanent.  It was too big for the two of us, let alone just me.  But, only five minutes from our daughter, it served its purpose.  I had the nearby help and support I needed as a caregiver.  

After placing Martin, as the months wore on, my mind turned to moving back to South Carolina with its mild winters.  Then, there were the blazing summers.  So, I thought about two homes, summers in Michigan and winters in South Carolina.  Guilt over not visiting Martin for the months in South Carolina chewed at the edges of my heart.  Even with Hospice attending now, his disease is so unpredictable.  The end will come when it comes.  

Yet, while recognizing the fluidity of our situation, I couldn’t help ruminating about my future.  With winter approaching, I also realized I still loved living in a true four season climate.  Wandering online through homes for sale in both markets, hot markets where nothing remained for sale for very long, I found my future.  

Following a visit to Martin one sunny day this past fall, I drove down a pothole riddled road in dire need of replacing.  Forget repairing it.  The asphalt was beyond mending.  But, I noticed the nice homes, the small farms and the seemingly never-ending acreage of a very large farm.  Surprisingly, I was only five minutes from a desirable village where I had established relationships with doctors, dentist, a bank and a few businesses.

A large wooden For Sale sign heralded the two acres I came to see.  Flanked on one side by freshly painted red barns and the original white farm house, my neighbor’s property looked like a beautiful greeting card.  Idyllic.  My acreage – I was already calling it mine – was a long and narrow meadow with oaks lining the frontage.  I could picture the meadow dotted with wildflowers and paths for walking.  And gardens around the house.  Gardens with lavender and thyme and rosemary and vegetables in summer.

Wanting to stick with my doctor’s advice, however, I hesitated even after my daughter affirmed, “Mom you should buy this.”   Even after my builder son-in-law seconded her motion.  Instead I looked at other properties and communities.  Self-doubts about what to do floated in and out of my mind.

Eventually, I realized artificial deadlines were exactly that.  Yes, I bought it!  I determined to forego the one year moratorium on major decisions.  This property, this place called to me as no other in my life.  It had been on the market for two years just waiting for me.  There had been other offers, but mine was the one the sellers accepted.  I was giddy with a renewed sense of excitement for my retirement.

Though bittersweet, I dream of the small house my son-in-law will build for me and the wildflowers in the meadow.  I’m working on a plan with an architect.  A modern farmhouse look, it will be just the right size for my needs.  I plan to sit on my back porch with good friends and family and my cats and good wine and great music.  And writing and drawing and, of course, gardening.

Oh, the road?  Well, I tried to drive down it one day to find heavy equipment being used to tear up the old road before building a new one.  Potholes no more.  Instead, my new road for my new beginning.

The Graduate

 

The Graduate of 2018

Born at the turn of the century (does that sound strange?  It does to me.), they don’t have a moniker yet like Baby Boomers or Generation X or Millennials.  Names like Generation Z have been offered up, but nothing definitive sticks.  I have one, a grandson, born in January of 2000.  Last week he graduated from high school as his mother, my oldest daughter, posted on Facebook his time as a caterpillar is over —  time to fly little butterfly.  All the excitement, pomp and circumstance, family celebration party, teary-eyed reminiscences of his mother and promises of a solid future.

 

What advice would I give him?  The same advice I would give someone getting ready to retire.  I believe it’s good advice for any new start in life.

  1. Believe in yourself.  You have innate gifts.  Be confident in your abilities.  Do in life what you want to do, not what others want for you.  There are lots of people out there with lots of advice (including me) on how things “should” be.  Realize that when the “should” word comes out, you are listening to their ego.  Take it for what it is and make your decision for what you want.  Be a little selfish.  Pander to your ego.
  2. Follow your passion.  That old saying  “Do what you love and you will never work a day in your life” is true no matter what your age.  I garden on a large-scale.  People often comment to me, “That’s a lot of work” to which I reply, “It’s not work to me.  I love doing it.”  Yes, do what you love!
  3. Never stop learning.  Going off to college or trade school or taking a job, graduation isn’t the end of your education.  People who are life-long learners continue to grow and thrive.  It doesn’t mean you have to take formal classes.  Stay open to opportunities.  Be curious about life in general.  Ask questions!  Investigate what makes something tick. Then, you’ll always have excitement in your life and something to talk about when you meet new people.
  4. Speaking of other people, keep your old friends and cultivate new friendships, too.  Growing up I was a Girl Scout.  We had a little song that went like this, “Make new friends and keep the old; one is silver and the other gold.”  People with strong support systems have an easier time adapting to life’s ups and downs than those without.  Change is inevitable.  Form your posse to help you through the changes.
  5. Exploring the world goes hand in hand with never stop learning.  Even if it’s just the world in close proximity, be curious about what’s around you.  A Realtor friend recently sent me a list of all the summer happenings in the Upstate.  With enough activities to fill a page there’s plenty to do and see in my backyard.  Get off the couch and out the door.  Or explore the globe.  
  6. Enjoy each and every day.  Tomorrow is promised to no one.  Live in the moment being mindful of the sights, sounds and smells.  Touch the world you have in front of you.  Mind-spinning about the future or reliving the past is time lost forever.  Enjoy today.  And enjoy it with gratitude.  Revel in what you have, especially the things that can’t bought.  Materialism is over-rated.  Stuff won’t make you happy. 
  7. Lastly, life is what you make of it.  There will be good times and not-so-good times.  You will meet good people and not-so-good people.  Choose how you will respond or not respond to what or whom you encounter.  Live your life on your terms.  No one knows what’s best for you like you do.  

Fly, little butterfly, fly!

Dedicated to Jake and all the graduates of 2018, no matter where you are in the world.  You are our future.  Get out there and put your dent in the universe!

 

 

Not In A Million Years

Still swinging in the wind

Five years ago I started this blog by posting a photo of myself on the bridge spanning Grandfather Mountain near Blowing Rock, NC. Taken a year earlier the photo has always symbolized my trepidation about retiring. Today, it symbolizes my apprehension about the future. I remind myself daily that today is all I really have, all any of us have. The past is in the past. The future has yet to unfold itself. Enjoy today.

Out of deference to Martin I have not written about this part of our journey, but the time has come where his condition is advanced. I don’t think there is anyone in our circle who isn’t aware of it. It is also time for me to start writing about it. My experience might help others. It is the reason I have not finished my retirement book. It’s hard to produce an Ernie J. Zelinski type How To Retire Happy, Wild and Free when you have a huge unanticipated cloud hanging over your retirement.

As an unexpected caregiver, I have created a good support network, including a therapist I see once or twice a month. During one session I sat with her silent in my thoughts. She said, “I’ll bet you never saw this coming.”

“Not in a million years.”

She continued. “I’ll bet there are some days you could just go outside and scream.”

I nodded. Not just some days — every day. And once in a while I go to the top of the hill on my six acres and do just that. As a caregiver much of my time goes to doing everything and anything requiring reading, writing or verbal skills. There are my doctor’s appointments and Martin’s, my emails and his, snail mail, financials, repairs around the house, the art studio we decided to build, shopping, pumping gas, reading recipes so he can cook, programming the thermostat and anything else requiring the understanding of words. Some days the pressure is enormous.

Like a coyote stealthily slipping through the night woods in search of prey, it started in 2010 with personality changes in Martin. They were attributed to stress and depression. Averse to taking medications, he refused antidepressants. It took years of intermittent doctor’s visits, struggle with Martin’s denial of the facts, cognitive tests, blood work, CT scans, MRI’s, and finally one very good neurologist to reach a diagnosis of Primary Progressive Aphasia (PPA). That was two years after an initial diagnosis of Aphasia, which is usually caused by a stroke or brain injury, and of which there are several versions of the disease.

Aphasia Poster

What is Aphasia? It is not Alzheimer’s. It is a loss of language skills — reading, writing, verbal abilities and comprehension of the spoken word. According to the Aphasia Association most people with PPA retain the ability to take care of themselves and pursue hobbies. However, they confront a 60% chance of the brain deteriorating into Alzheimer’s. That said, Alzheimer’s drugs do not help with Aphasia. Because so few people have this condition — it’s estimated only 200,000 have the PPA version — there are no drugs and most physicians know little about it. Martin’s neurologist only sees one or two cases a year. Obviously, this is one of the reasons a solid diagnosis took so long.

Nothing makes a person stop and realize what is important and what isn’t like a diagnosis of a serious disease. Our priorities definitely changed. Everything came into focus.

Oh, I threw my pity party, a long one in fact, of about a year. My negativity almost swallowed me up. It took time to realize this is not about old age. I had polio at age 3, lost my oldest brother in a car accident when I was 7, followed by the loss of cousins from brain tumor, leukemia and other tragedies similar to my brother’s death. Adversity can happen at any age. One day I asked, “Why us?” A voice inside answered, “Why not us?”

Bicycling is good for the brain

Martin still bicycles a hundred miles a week. He creates all kinds of art. He cooks, cleans and works on the property. I have to leave the washer and dryer on the same cycle. If I move the dial, he doesn’t recognize it has been moved. I have to watch for things like his microwaving fresh carrots in the plastic bag they came in from the store. When he sets the table, I may find a spoon and knife instead of a fork and knife. It could be worse. It may get worse. But we have today and today is good.

Along with prioritizing comes a focus on what works best for both of us. As a caregiver I often put Martin’s needs first. When his neurologist asked him what stressed him most, he answered without hesitation, “Other people.” As an extravert, not having people to the house as often has been difficult. I do most of my socializing outside our home.

Martin’s bird among coneflowers

While it’s important for Martin to remain engaged, his neurologist recommends limiting any situations that may cause him anxiety. Speaking of other people, some understand that; some do not. Since all looks normal with Martin’s appearance, there are those who do not understand the unseen changes in his brain have rendered him a different person than he used to be. Their presence alone can cause stress as he struggles to converse with them and comprehend what they are saying. We learned to distance ourselves from those who are not understanding about our new normal.

As my time is taken up more and more with caregiving, I have grappled with discontinuing this blog. I’ve decided to post once a month instead of foregoing it altogether. It’s important to me and I feel like it is to my readers. I have started rewriting my retirement book to speak truth about my journey. No, retirement is not always rosy. But, neither is life at any juncture. This is just one more change, one more challenge, one more adjustment. Even in the face of adversity, even with an event I would never see coming in a million years, there is still much to be celebrated. Enjoy your day, no matter what it brings!

Ch-Ch-Ch-Changes

This post first appeared on March 18, 2013.  Given the tumultuous political season just past in the US, I decided to post it again.  Change comes from everyday people taking courage to do extraordinary things.

 

When I started this blog, this post was not the kind of post I had in mind. This is not meant to start any kind of political debate. Nor is it meant to place blame. It is simply something which has been on my mind due to what I’m seeing in the news. Just like every post I write, these are simply my thoughts put in writing. That said, if you have constructive thoughts you’d like to share, I would love to hear them.

Over the past couple of weeks I’ve seen a few stories in the news and read some posts on other blogs and list serves about sexism and ageism in America. The views range from Sheryl Sandberg’s view that women must rid themselves of the internal barriers to gaining power in the workplace to male nurses are paid more than female nurses because, well, because they are male. Reading through the conversations on a senior forum, the answers behind the question of ageism from this group of mainly professionals, seems to be the mindset of both the general public as well as workers in the senior care professions. As someone who is categorized as one of the point women fueling the feminist movement of the 1970’s, I say we’ve come along way, baby, but the consciousness raising ain’t done. Mindset on both counts.

So, how is mindset changed? And why is it important to change it? Well, the first answer is that old-fashioned (yes, the tools of the 1970’s are now old-fashioned) consciousness raising is what changes mindset.

I’m not talking about what is politically correct here. I’m talking about our internal beliefs brought to life each and every day through our words and actions. I’m also talking about changing those internal beliefs because it’s practical to change.

That brings me to my answer on the second question. I see sexism and ageism as being linked. And, it’s important to change the attitudes because our society has evolved, but our mindset hasn’t kept pace with the evolution.

It’s no secret. In general, women still outlive men. Yet, women, and their partners, don’t take their working and saving and, yes, contributing to Social Security, as seriously as they should.

The majority of women work today. We are also still the parent who puts aside career in favor of raising our children to a certain age before we head back to work. As a working mother, I know first hand how hard that is and how important that is. From a practical standpoint, I also know, currently, the Social Security Administration will take your 35 highest income years to compute your Social Security benefit.

I have also met many women who forego maxing out their 401k contribution in favor of their spouse’s plan. Why? Mindset. The reason many women live their old age in poverty is because they tend to take care of others before taking care of themselves.

The change in mindset starts with women just as it did in the 1960’s and ’70’s. It is up to women to demand equal pay for equal work. The fact that John Doe has been on the job longer is a red herring if Mary Doe is up to the same speed. You might even say, if Mary can rev her engine at the same rpm’s as John, without the years, then Mary may be the better qualified employee.

It’s also up to Mary to start taking care of Mary by saying to her partner, “I’m putting as much in my retirement fund as you are, Honey”. And, by the way, I need 35 years in the workforce making as much as I can, so if you die first and leave me alone, or, if we’re among the 60% who divorce, I don’t have to worry about where my next meal is coming from in my old age.

Reading the comments on ageism, I found it interesting how several people thought our society needed a Gloria Steinem or a Rosa Parks to make a stand and raise our consciousness about ageism. As someone who watched Gloria Steinem on the evening news way back in the late 1960’s, I must say she was an influence on the direction my mindset took. However, the real work was done by everyday people with the courage to stand up in the face of societal norms and say, “That’s not acceptable anymore.”

Well, people don’t age the way they used to. The reason Social Security and Medicare are in trouble isn’t because of any federal deficit or economic downturn. While the reason is a lot more complicated than this, the short and the long of it is we are living longer. We have better medical care. We have more options available to us. Seniors are more active, more involved than ever. When seniors leave the workforce, if they do at all, they aren’t going home to die. They are going on to a new, exciting chapter of their life journey. Our society has changed. Retirement has evolved. Yet, we hang onto the old stereotypes of aging and the aged — ageism.

Mahatma Gandhi is credited with the quote, “Be the change you want to see in the world.” So, if we want to get rid of sexism and ageism, it’s up to each of us to first get rid of the internal barriers preventing each of us from changing our mindset. We don’t need a Rosa Parks or a Gloria Steinem or a Mahatma Gandhi. After all, at one moment, each of them were just ordinary people willing to take action, to speak up. So, all we really need is the courage of our convictions. Catching up with our societal evolution depends on it.

A Daily Life

 

This post originally appeared June 26, 2013.  It has been updated.  One of the surprises of going back and reading posts from a few years ago is how much my writing has improved!  The more we do something, the better we become at doing it.

 

Up until recently, I had a blogging routine. I wrote my weekly post on Friday. On Saturday morning I got up, edited the article, then posted it. That routine was broken when I decided to write a book. Writing a larger piece required a new routine. Routines are important, even in retirement. Routines add structure to our lives and it is structure which makes it possible to meet challenges, accomplish whatever we set out to do and makes the special moments special.

 
After years of getting up at the same time, getting ready for work in much the same way and having to be at your desk, office, station, work site at a specific time every day, suddenly all of that comes to a screeching halt. With retirement, you can sleep in everyday if you want. You can get up and throw on a pair of jeans and a t-shirt or hang out in your pajamas until noon or all day. You have no place to go unless you manufacture a place to go. You have nothing to do unless you create something to do.

Part of challenge in retirement is how will you create structure. Why? Do you really want to spend the next thirty years of your life sleeping in and sitting around the house in your pj’s doing nothing more than watching the tube, surfing the net and leafing through magazines?

After placing in the state time trials, the question Martin has been asked most often is, “So, what will you do now?” It’s also similar to an often asked question since we retired, “What do you do all day?” And, therein lies the rub. After 40 years or more of someone telling you what to do all day, there is suddenly no boss.

There are no corporate directives. There are no promotions to a higher level. There are no new products to roll out. There are no employees bringing you problems to solve. There is no job description. There is no company policy manual. There are no rules. In retirement it is up to you to determine your fate. That, folks is the number one challenge of being a person of independent means.

Martin has already decided he won’t be competing in the national time trials. He’ll continue to ride for exercise and his own enjoyment. He’s already exploring taking a college course or two in photography and/or painting with acrylics. We can always find something new to challenge our brains and satisfy our creative vision. But, understand this. Determining your fate isn’t one big round of finding something creative or challenging to fill your days. Your days also need some of the usual — the everyday. The often times mundane. Because one of the things which has also vaporized with your work life is structure. Maybe not entirely, but a significant amount of your routine is gone.

When working, long weekends and vacation days become moments when we do something special in between the structure of work. Structure is the juxtaposition to the excitement of say racing in the state time trials or running a marathon. To be sure, there’s the structure offered by laundry, grocery shopping, house maintenance and family obligations. The latter remains even in retirement. Although for us, shopping and errand running on the weekends and evenings is replaced with doing those chores early morning weekdays when the stores are close to empty. Now we do laundry whenever the hamper is full. House cleaning is whenever we feel like it or, to motivate ourselves, we invite someone for a visit or dinner.

After years of dinner sometime between 6:30 and 7:30, in our new life, we enjoy starting dinner early and eating around 5:30. Structure. Thanks to a little diluted orange cat named Carmen, Martin still gets up in the morning around 5:30 to 6 a.m. Carmie doesn’t care that Daddy doesn’t go to work anymore. She sticks to the routine she was raised with, meowing at the bedroom door in anticipation of Martin rising and giving early morning pets and breakfast.

I sleep in until Martin brings me a latte bedside around 7 a.m. That’s right, he makes me a latte every morning…structure!

Even our choice to age in place on our six acres provides routine, albeit different routines during the different seasons. With an overgrown woods looking like something the Prince had to hack through to reach Sleeping Beauty in the castle, winter’s routine is bushwhacking. Summer mornings are spent picking berries and vegetables, deadheading flower beds and doing chores in the garden. Then, there’s house maintenance like cleaning gutters, painting the trim, fixing a leaking toilet and all the other things you now have time to do yourself instead of paying someone else to do it for you.

No matter what you plan for retirement, skydiving, bungee jumping, spending a year in an RV traveling the country, going to Europe or Hawaii, sailing the seven seas, no matter what you plan for excitement or challenge, in order to make it truly exciting, you’ll need a daily life of the usual. You will need structure and routine. And, even if you have a book to write, you can take off spur-of-the-moment to parts known or unknown.