Wednesday, August 13, 2014

From this
to this in just 8 years

When I first started blogging about my experience as Betty's caregiver I got some negative feedback from a family member who felt I was "putting too much out there" exposing her, possibly putting her in danger.  I couldn't find my voice after that and pretty much stopped blogging.. only posting occasionally.

In December my husband and I moved in with Betty because she could no longer be alone and we just hated the idea of placing her in a memory care unit.  It has been the hardest thing I have ever done.  Some people are easy to live with.  Betty is not all that easy.  I found the perfect word to describe her; acrimonious.  If you go to that link and see all of the words that define acrimonious you will see what I live through every day.

In late December I started to see these white ghost shapes sliding up and down in my eyes.  I had no idea what it was but it was very annoying and very disconcerting since I had such a hard time describing it.  In January we made an appointment with an eye doctor down here in Florida and he brushed off my complaint.  I continued to see the white spots and also seemed to have a million more floaters, so I made an appointment up north with my regular eye doctor, as we had my sons wedding in June.  

When I explained the whole thing to Dr. Goswick he took me very seriously and took pictures etc.  He noticed a big change since my last exam and sent me to a retina specialist the next day.  I was given all sorts of tests and was diagnosed with Birdshot Chorioretinopathy.  Needless to say I was and am, floored.  Biggest fear I have always had.... blindness.

What does all this have to do with Betty?  One of the components of Birdshot is that stress is often the factor for bringing on the symptoms. Could I be more stressed?  This is NOT fun.  This situation is just NOT fun.  You have to have more patience than I have and I am pretty darn patient.  Bob.. not so good at patient.  It is a constant battle to remember that "IT IS THE DISEASE" and not just Betty being Betty.  Oh, there is still that.  She has been acrimonious since I met her in 2000.  How much is disease and how much is Betty.. I have no idea.  She wakes up on the wrong side of the bed 99% of the time.  One wrong word and BAM! 

This disease SUCKS!  There, I said it.  It sucks that Bob is spending his retirement years locked in a house that he never planned to be in, trying to learn patience, trying to be a loving son and an understanding husband.  He thought he would be playing golf, sitting on the deck reading, maybe even getting an RV and traveling.  Instead, he is trying to read while listening to the same story over and over and over.  He did just join the golf course here but that means he will have to leave me with his mother and he can't help but feel guilt about that.  (Not necessary... I will survive.)  We cannot go out to eat.  We can't have a conversation without parroting or lectures that we can't discuss things at the table.  We can't talk or make noise in the morning or night.  We have to keep the cat quiet and out of sight as much as possible because, Betty hates cats.  We can't vacuum when we want to because it makes noise and no one makes noise at "that time."  I can't prepare dinner without trying to figure out a way Betty can help or hearing over and over the stories.  I can't get up in the morning and make a batch of muffins or put some dishes away in the cupboard. Simple things.  I cannot relax in the kitchen and just prepare a meal or make a loaf of bread or wash the dishes.  If I do not do the "right thing" I can look over and she is crying.  You know, it is not easy to change the way you like to do things.. not for Betty and not for me.

This disease sucks!  It is the disease that allows for Betty to sit and worry about what she is going to prepare for her guests.. us?  She worries about what she has in the fridge to make.  She has not cooked a meal in almost eight years.  Has not really shopped for over five.  I have done everything for her.  Imagine me trying to bring all of my belongings into her kitchen and putting them away without making it too obvious to her.  Moving things.  Shifting things.  Rearranging.  She says every day, "Leave those dishes and I will wash them."  Nah.  Not so much.   She still thinks she washes her own clothes.  It is up to us to figure out how to do all those things without causing her to realize that she does nothing but sit in the chair staring straight ahead.  Our reality is not her reality.  We have to learn to live in her often made up reality and I am here to tell you.. HARDEST thing EVER!  

This disease sucks!  I blather on.. poor us.   Lord, please remind me every day that this disease has a stranglehold on Betty.  That SHE is the victim.  She is the long-suffering.  I am here to be the comforter.  God please give me a better attitude and the kindness I need, to deal with my living situation.  Please guide me. Amen.


  1. Amen. We pray for all of you. Sending love.

  2. When I was 17 turning 18 I was a caregiver to a boyfriends grandmother. She was in her 90's and had altzheimers. At first it was not that bad living in a small trailer with her, I had my own room, and felt very responsible as I always had to be. I must cook low sodium, and there was a stipend for groceries. My pay was great for 24hours... Though...very soon I realized that I was the enemy. The beds were infested with scabies, so I had totoil and boil them, Nellie has started hiding things from me, though acting innocent as I was a theif...important things like her glasses and at that time she had on little yorkie terrier. One morning I hear muffled barking and the dog was found under her bed in a suitcase... her relatives had to get the dog after that.... I have many more stories of the 6 months I was there.... I bless you for what you are doing, though sometimes in order to take care of others, you must take care of yourself too....

    1. Thank you so much for stopping by... what a horror that must have been for you at such a young age. Every day is a challenge. I have no idea how you did it at 17/18! God Bless you.