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!