Who is this weeping woman???

I know the look, a mixture of frustration and desperation, that takes over the faces of family members dealing with an aging parent.  Especially a parent that has reached the point of needing additional care, who cannot function safely by themselves, yet still insists that they will never leave their home.  It is a horrible place to be for everyone concerned.  No one wants to see their parent loose their independence.  And no matter our age, there is nothing simple about reversing roles with our parents.  The emotional turmoil that sons and daughters go through when they have to be the ones responsible for making the decision to remove a parent from their home cannot be downplayed.  And the agony that a parent goes through when they see their independence slipping away is equally as painful.  It is a no win situation for all involved.  Throw in the diagnosis of Alzheimer's and it becomes almost comical.  The dark kind of comedy of course.


The first step in getting my mom to move in with us involved a visit.  I convinced her to come down to Texas for a short visit, just to test the waters. Told her we'd try it out for a few months.  Told her I could really use her help around the house.  She came to visit and somewhere during that visit, after many chats, she decided she would come and live with us.  My oldest brother, Pete, who had Power of Attorney, got busy and found a realtor in South Dakota to put my mom's house on the market.  Much to our surprise, the house sold quickly.  So our next step was another trip to South Dakota to pack up her things and make the move official.  Pete met us there.  Thank God he was there because what followed was a nightmare.  When my mom walked into her house, she  hugged the wall and started crying, saying she did not want to move.  We were horrified.  The papers were about to be signed to finalize the sale.  We didn't need her signature to complete the sale, but how to convince her to come back to Texas?  My mother, who had always been a stoic and practical to a fault, was now unreasonable and tearful, begging to have her way.  I don't know about Pete, but I don't think I'll ever forget how awful I felt at that moment.

Fast forward...today

My mom's parents, Alfred and Kathyrn Anderson

I will continue chronicling my mom's journey on another day.  I've been fighting a respiratory virus for the past two weeks and have been thrown off track.  It has reminded me of my early years as a mom of young kids.  Being a mom is a 24/7 job.  Even when you are feeling crummy, the kids still needed to be bathed and fed and cared for. Deja vu!  Even though I've felt crummy for the past two weeks, my mom needed to be cared for.  She needed to be bathed and fed, diapers changed...being a caregiver is a 24/7 job.  Now that Hospice is involved, I did get a little break from bath time at least 3 out of the 7 days.  Was grateful for that help.  I find it hard to complain about taking care of my mom.  She took such good care of me while I was growing up, it only seems right that I do the same for her.  But that doesn't mean its easy.  Often people say things to me like "you're such a saint for caring for your mom all these years."  I hate to hear that.  It is so not true !! I know me better than anyone and I can assure you that sainthood is not in my future.   It has been a difficult twelve years and I have regretted my decision more than once.  Nothing saintly about that.  When others wonder to me out loud if they should do the same with their parents, I urge them to consider their decision very carefully and try to find a different alternative.  I tell my own children to find a nice nursing home for me when the time comes...because I know the tremendous price the entire family pays when a parent with Alzheimer's is brought into the home.  I still would make the same decision, even knowing what I know now, but I have a very remarkable family who have been crucial in my being able to provide care for my mom.  My husband, Pat, has been my strength through the years.  My children, Paul, Tricia, and John, shared the burden of making a place for G-ma in our home.  They all put up with her ever changing disease, many stages which were annoying beyond description, some down right embarrassing !  I'd like to think we have all become better for our caring, no doubt this is a fact.  But no point in sugar coating the experience...it has been difficult and frustrating...yet I suspect we will all feel a very particular emptiness when my little mother finally is called to heaven.

One of us can remember...kinda

Little Ruthie

I have been living with Alzheimer's officially for twelve years.  No one ever really knows when in starts, it creeps into your life slowly.  My dad died in 1991, a victim of lung cancer.  During his illness, my mom never seemed quite on top of things.  Being a nurse, I wanted details..."what did the doctor say, what stage was the cancer, are they talking surgery, chemo, radiation???"  My mom could never remember.  And after his death, she continued to seem not herself.  But she had just lost the love of her life, they had been married for 40 plus years, and it was normal to expect some period of adjustment.  We attributed much of her behavior to depression. She went through a series of moves, from Colorado to Texas, then off to Virginia, and finally landing in South Dakota at the urging of one of her sisters.  I made a point to visit her as often as I could while she was in South Dakota, marking my time until the inevitable moment when I had to admit she could not live by herself any longer.  Partly it was the multiple yellow post it notes placed about her home: "Don't forget to brush your teeth", "Turn off lights", "Mass at 8:30".  The final straw was a trip to Walmart.  My mom LOVED Walmart.  It was the second place she scouted out in every town, the first being the Catholic Church.  On my last visit to see her, she couldn't remember where the Walmart was located.  And even worse, when we left the Walmart, she couldn't remember where she had parked her car.  The tragedy of that was I am a dope concerning cars.  While my husband can tell you the make and model and year of every car he sees on the road, I'm the one who says "I'm taking the blue car to the store". The bottom line being I really didn't have much of an idea what kind of car my mom drove.  It was somewhere in the middle of the Walmart parking lot, looking for a "misplaced" car, that I realized things had to change.  I , for one, had to pay more attention to cars and parking lots....and my mom needed to move in with us.  But how to convince my mom, who had always been independent to a fault , to leave her little house in South Dakota and move to Texas into a house with three teenagers and a son-in-law that she never really got along with??? 

A new road traveled

My mom-beginnings

I have decided today to begin blogging and learn a new skill.  No doubt it will take some time to figure this out, but I'm used to that....taking time to figure things out.  What I lack in intelligence I often make up for in persistence.

I have begun a new journey this week.  Well, my mom and I have taken a new route on an old journey, one we've been on for the past 12 years.  This journey could be named Alzheimer's and hopefully our destination is heaven.  I would prefer we not reach our destination at the same time, I'm willing to allow her to go ahead of me and get things set up, but for part of this journey we must travel together.  Truthfully, I feel honored to be her traveling companion.  She has been the greatest influence in my life, taught me everything I needed to know to be the person I am and given me the strength to conquer every obstacle.  My deep faith in God was nourished by her example.  She taught me to be kind to strangers, to believe I could do anything, to laugh at myself, and to never stop learning.  She encouraged me to become a nurse when it was the last thing I thought I could do and that simple act alone has given me over 30 years of profound joy working in a field I love. 

Of course, I could write forever and never run out of reasons to be thankful for my Mother.  And truthfully, words would fall short in describing how precious she is to me.  She wasn't perfect.  I've often said the irony of her disease is that, when she was younger, she could carry a grudge.  For a woman who would never forget a transgression, it seemed ironic that she became a woman who would eventually forget everything!  Still, as the end approaches, I chose to remember the strong woman that was my mother..I miss her even as I gaze upon her this day.  

As for the new leg of this journey, it started last week with a seizure.  My mom's condition, which has been a non-stop progression in a downhill direction, seemed to deteriorate yet again.  Hospice had been recommended to me almost two years ago, but it didn't seem appropriate.  Last week, after her seizure, it felt like it was time to make the call.  It was a hard decision to make.  It felt like giving up.  It felt like I was admitting defeat.  Of course intellectually I knew that wasn't the case, but my heart and head often are not occupying the same space!  I have worked with Hospice many years in the hospital and I knew that I wanted them to come in and help me care for my mom in the end.  But calling them meant I was confessing that the end was in sight.  And even though I have never wanted to prolong my mom's life for a minute more than God plans, even though I lost my mom years ago to Alzheimer's, even though I pray every day that God takes her peacefully in her sleep, the daughter is not ready to say goodbye to her mother.  And I've realized I will never really be ready.  So I am thankful that Hospice has stepped in to give me the support I need at this time in our journey.  And I hope that I can journal in this blog these final miles.  Perhaps it will help someone else.  But mostly I'm doing this for selfish reasons, to honor a relationship that has meant everything to me and to work through the grief that seems ever present on the edges of my heart.