These are difficult days, this end part of our long goodbye.  I am ready for my mom to die and I'm unprepared.  I have said goodbye to my mother years ago.  My mother left years ago.  This shell of a person is not my mother..or is she?  Does Alzheimers rob us of all our pretense and leave us with the essense of who we are, or does it rob us of our essense and leave us vacant?  The disease has robbed my mom of her ability to communicate except at the basic level, a grimace, a moan, a faint attempt at a smile.  I so wish I knew what, if anything, goes on inside what is left of her brain.  Then again, perhaps I don't really want to know.  I could be in real trouble !!!

The mother I remember was an indominable spirit.  She would set her mind of something and nothing would stop her.  Even now, I believe that essence remains.  Somehow she continues on.  She awakens every morning, allows me to get her up, walk her down the hall, bathe her, walk her downstairs, feed her, return her to her bed for a long nap, then up again for dinner, another diaper change, and back to bed.  We have this routine that rarely deviates.  She depends more and more on me, and yet it is still that spirit that puts one foot in front of the other, travels through each day on as much of her own steam as she can muster.  The human spirit.  Who we are in the center.  "You have a body that may become ill; you have a psyche that may become disturbed. But the spirit is what you are. It is your healthy core." (Joseph Fabry)   I want more than anything to believe that Alzheimer's, a horrible disease that robs us of almost everything, is incapable of robbing us of God's greatest gift, our spirit.

Those first years

Ruth Elois Anderson-Taylor, my mom

The first few years that my mom moved in with us, I stayed home.  I had worked in hospitals all of my adult life, mostly full time.  One of the great things about being an RN is that I could adjust my schedule to my family life, usually working my schedule around my husbands so that someone was always home with the kids.  I love being a nurse and never minded going to work.  Still, when we moved my mom in with us, we weren't sure how much longer she would be alive, and it seemed important to make sure she had someone with her.  She was never a very social person, not one to enjoy going down to the local senior citizen center and hang out.  So I became her companion.  Looking back, those were the hardest years for me.  I missed work.  And financially it set us back dramatically as my husband was trying to build his own business at the time and our income was unreliable.  We are still trying to dig out of that financial hole!  But mostly it was a kind of torture that would make water boarding seem humane.  There is a stage of Alzheimer's that involves constant repetition of stories and phrases, to the point where you want to beg someone to put you out of your misery!  During that time my mother also went through a paranoid stage of sorts, no doubt aggravated by her slow deterioration, her inability to remember.  I personally think this is the cruelest stage of Alzheimer's.  That in-between stage, where the victim understands at some level that their memory is disappearing and the frustration that this creates.  My mom would often have such a bewildered look on her face and she would say to me "If it weren't for you and Pat letting me stay here, I would be in a mental institution".  She meant nursing home, I'm sure, but I wondered sometimes if she didn't think that she was going crazy in a sense, she literally was loosing her mind.  I tried to fill my mom's days with activities I knew she enjoyed.  We played cards for hours, she loved playing cards. We went thrift store shopping, she loved thrift stores.  Eventually, the card games became too difficult and she lost interest in thrift stores.  With each passing month, you could almost see the brain cells dying as she lost interest and ability, a slow progression downhill.  Inch by inch, my mom was disappearing before my very eyes.

Find me a nice nursing home

My mom, her mom, and her baby brother.

I had an important discussion with my daughter today...and I hope she was listening.  We were talking about my mom and she asked me if, knowing what I know now, would I still have brought her into our home.  I sensed, perhaps wrongly, that she was not just talking about my mom, but also wondering about her role as the daughter, how should she treat her own mom and dad as they age.  This is a concept that many people must grapple with and I think it is crucial to understand that every situation is different.  I worry that people watch what I have done and believe it is the standard, that everyone should bring their parents into their home when the time comes.  I don't think this is true.  I am blessed with a caregiver personality.  It is why I love being a nurse.  I have the skill set and the temperament to care for my mom.  I have the family support needed to pull this off.  Not everyone does, and that's OK.  No one should      feel that they are obligated to provide 24/7 care for anyone unless they also are blessed (or cursed !) with that caregiver disposition.  It really is OK to help mom or dad find an assisted living situation if that is appropriate. Everyone will suffer if you assume a care giving role without the proper disposition.   And no one should feel guilty.  The important thing is to be involved, to make sure the living situation is safe and compassionate, to stop by and visit.  I tell my kids all the time that I want them to find me a nice nursing home, that I don't want to live with them.  Its my way of continuing to take care of them, I guess.  Of course I hope to live many years and be a spry and active old broad.  We all hope for the best.  And if I see myself declining, I hope I can make my own decision to seek outside assistance and make those plans for myself so as not to burden my kids.  So, once again to my kids - find me a nice nursing home (unless I find it first).  And yes, knowing what I know now, I would still take my mom in, wouldn't have it any other way.  But that's just me!

Finally in Texas.

It was a long time ago now and I'm not really sure how we were able to convince my mom to leave her home in South Dakota and move to Texas.  I seem to recall some deception involving the realtor, explaining the situation to her and having her help us convince my mom that the papers were already signed and the deal was finalized.  This wasn't true, but she did tell my mom the young couple who were buying the house were super excited to be moving in.  I think that helped.  My mom had a big heart.  

My brother and I had one more challenge to face.  We both agreed that my mom had no business driving.  She disagreed.  So we concocted another lie.  We told my mom that Pete needed to drive her car back to his home in West Virginia because she had given him some of her belongings and he needed to transport them home.  Then we told her he would drive her car back to Texas in a few months.  That was never going to happen but she accepted the story.

This is a phase that family members often go through.  I would have to lie to my mother many times as the years passed.  I would also use her forgetfulness to change the subject.  At first I was filled with guilt.  Lying to my mother was despicable and I felt terrible.  Even though I knew it was for her own good, it still made me feel like a criminal.  As with most bad habits, it became easier with practise, but not one of my favorite coping techniques. 

I share this because this story involves two situations that create tremendous stress for adult children.  Removing a parent from their home and taking away the car.  The second is usually the most difficult.  Taking away the car represents loss of freedom - not only for the parent but for the adult child.  Most Alzheimer's victims will refuse to give up the car keys way beyond the point that is safe.  It is not easy to tell mom or dad that they can't have the keys to the car, especially when they can't see the problem.  Many have to resort to trickery of some kind.  I've heard stories of family members disabling the car or the garage door (if you have an automatic garage door). Hiding the keys is effective.  But the other challenge of taking away the car is that now you have to help them find transportation.  Their loss of freedom has a direct impact on the family.  Now their Doctor's appointments become your Dr's appointments.  Their grocery shopping becomes your trip to the store.  There is nothing easy about Alzheimer's!

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.