If I Only Had a Working Crystal Ball

The First Nursing Home I ever Visited in 1968
Where my Grandmother and Aunt Flo lived and suffered.

I've been actively searching for a nursing home to put my mom in.  It's a sad job for me to do, especially because I worked very hard to keep mom out of a home.

My personal fear of nursing homes, the images that were burned into my subconscious mind from that fateful day when we visited our mom's mother in a nursing home back in 1968, changed me forever.  The home is now a correctional institution where it houses prisoners.

Nursing homes are sad places, no doubt; it's the same now as when I walked through their halls as an 8 year old; only the faces have changed.

This week on nursing home tours, I saw more people slumped in chairs, sitting quietly, no conversations because they all appeared to be drugged.  Music played in the background, music from the 20's, 30's and 40's, no one even appearing to hear the static.  It broke my heart.  I asked myself, "Can I see Ma here?"  No.

I move on to the next place and it's the same.   Finding nursing homes that I would consider placing my mom is difficult, these homes are few and far between, often with very long wait lists.  My problem now is can I wait the year?  Can I keep on caring for my mother?  I really don't know.  I will keep doing what I'm doing for as long as I can.

My mother may end up in a substandard home because I didn't prepare for the inevitable.  My advice to Care Givers, be prepared because you never know when your ward will need to be placed in a facility.  It's better to pick the home yourself than have doctors move them to any home that has a bed... these are the shit holes.

Ideally, I should have had all her paperwork completed and had her on wait lists a couple of years ago.  But, hindsight is always 20/20... life as I know it, is what it is and there's nothing I can do about the past.

What could I have done differently?  If I had a crystal ball that I knew how to operate, things would be different for me right now.

First, I should have gotten Elder Services involved sooner.  I needed help desperately with my mom but did not know how to get out of my own way to get the help.  I had the phone number but I didn't have the uninterrupted time to make calls and follow up.  There is a lot of paperwork and follow up, something that is nearly impossible for one person to do when deep in the pit of caring for someone who's insane.

I expected and needed my family to help me but I was so judgmental and angry, no one wanted to help.  I do understand that my behaviors and attitude are the reasons why I was abandoned and left to carry the burden of caring for our crazy mother.  I'm not condoning what happened, but I do understand that it takes 2 to tango.  I was wrong.  My siblings were wrong too.

Living with a parent who has LBD, we are left to watch the person die a slow death.  It's awful to witness.  It only gets worse, especially when the shit starts to fly out of their ass landing in spaces that are near impossible to clean.  Our homes begin to smell like those nursing homes that I've been visiting lately.  We find ourselves wiping our parents ass, showering shit off their frail body and running the steam cleaning cycle on the washing machines daily.

Here I am, literally confronted with human feces every single day of my life.  I never wanted to be where I am right now and have told my mom since 1998 that once she started to shit her pants, our time together was over.  In her mind she isn't shitting herself, she has "her period."

Lately, I long for the days when I worked in Sales.  I once complained about cleaning up after my assigned Sales Executives; something that would be welcomed by me now.  Today, I'd rather have proverbial shit to clean up at a paying job instead of actually cleaning my mom's real shit with no pay.  Shit smell lingers and is nauseating but somehow getting paid to clean up perceived crap makes it easier than caring for a demented parent in a diaper.

I do have help with my mom now, but she is refusing to allow anyone to help her except for me.  It's related to her loss of control over her life.  It's a heavy burden that I don't want to carry anymore.  I wish I had been more prepared so that I am not faced with placing my mom in a home that I wouldn't want to live in myself.

My view about nursing facilities has changed and I do believe that there are homes which have caring staff.  My mother needs to be in a nursing facility.  I am searching for a home in a similar way that I search for a job.  I do my homework.  I write questions.  I do site visits.  I have a spreadsheet.  It's time consuming but I believe that my efforts will help me find a home that makes me feel confident that my mom is being looked after so that I can get on with my own life.

I miss my life.  I miss the joy that I once would have making quilts, playing golf, meditating, exercising and enjoying time with my husband.  Now, it is lost and I want it all back... NOW.  I am unhappy more than I'm happy; no way for anyone to live.  Creating happiness in my life is becoming more and more difficult to maintain.

Ma in a nursing home will be different.  I'll expect to spend time visiting her frequently, helping her to realize that she hasn't been forgotten; left to die alone like her own mother's reality.  Hopefully, my mom won't hate me too much when she is moved to a facility.  She often tells me now that she hates me and not to bother visiting her in a home.

I believe that frequent family visits and involvement creates a good atmosphere for the patient.  Staff tend to give more care to those who have frequent visitors.   Personally, I vow to do my part, I will visit my mom frequently and take her out for rides as long as she is able to get into my car.  I pray that my family sees things the same way and pay attention to our mom when she is in a home.

However, I am not hopeful that my family will visit her, they don't visit her now so why should I believe that she will get frequent and regular visits by them when she's in a home.  It's hard to go to a nursing home.  Is it because we are faced with our own mortality?  Not sure but I do have to work on not being angry with the situation that I am in and directing my anger toward my brother and sisters.  I am not them... I am me and only I can do what I can do.

Visiting homes this week, I didn't see any visitors, no family or friends.  I saw sorrow filled hearts painted on the faces of once vibrant people.  It appears that as soon as someone goes into a nursing home they are forgotten.  No reverence for the long life that these folks have lived, their usefulness negated by their illnesses.  Sadness permeated the air, engulfing my spirit and causing me to cry.

The most important thing that I need to remember every single day is the only one that I can control is myself. As much as I'd love for my family to rally together to help our mom when she's in a home it is unrealistic.  I have no idea what motivates family members; everyone has their own choices to make, choices which pave the road to their future happiness.  It's not my concern and I can't make it my concern or I'll be pissed off until the day I die.

Families have no idea how hard life is for a Care Giver; none of them will ever know until they walk in the Care Giver's shoes, something that few are brave enough to do.  It's easier to be an Ostrich and repeat the phrase that was made famous in the TV series, Hogan's Heroes, "I know nothing! I see NOTHING!"  For me, family is my greatest challenge.  I miss my family.  Will we ever be together again?  I don't know... I need a Crystal Ball to know for sure.  I can hope.

It's times like now that I feel like an only child, left to carry the burden of a demented parent alone.  Coping is hard now, especially when I grew up with so many people around me.  I am angry; expectations making my life more hellish.

I wish I could control my thoughts, but the reminders of the insanity associated with caring are often too great to keeping a positive outlook.  I apologize if I offend people, especially my family, I have difficulty keeping my mouth shut.  I love you all, I just miss you a lot.  I need you.

Today, I am impatient.  I am tired.  I was woken up way too early.  I was greeted by my demented mother, fully dressed and ready to go somewhere at 5AM.  I hate myself today because I can't handle the stress of caring.  My tongue is sharp and days like today I have a hard time controlling my words.

Through all of this I need to remember one fact; I am the only one who can make myself happy.  No one can make me happy.  Happiness is a state of mind that only I can manifest in myself.  For me, I am having trouble finding happiness, the burden is too great and I'm tired.   My body is in physical pain from the stress.

My main question these days is when will I be able to create consistent happiness in my life again?  I miss being happy and satisfied with life.  I miss sleeping.  I miss being able to see my friends or to be spontaneous. I miss life.  I miss cleaning a bathroom and having it stay clean for more than 5 minutes.

If I only had a working crystal ball...