Only Questions

I'd like to say that I am better at this caregiving thing but... not really.  It is the hardest thing!  Never mind how I feel.. poor Betty is just beside herself.  She thinks she is dumb.  She is absolutely convinced that this forgetfulness, confusion, chaos can only be described as, dumb.  If you think reassurance should help.. try to understand that she retains no info for longer than a minute EXCEPT negative things.  So, if I were to say, "Betty you ARE stupid" she would retain that for many hours.  But if I say, "Betty you are NOT stupid it is your memory problems" that is gone from her brain in less than a minute.

This is a woman with one of the lowest self-esteem's I have ever known.  I have always said I thought she had a big touch of narcissim but honestly I am not sure you can have that and the worst self-esteem, ever.   From what I have known of her she has always insisted upon compliments.  She did it through manipulation, a training of sorts.  I won't bore the blog with the details but suffice it to say most people knew to tell her how good she looked when she walked into a room.

She always told stories, still does, of the pretty girls who could have had her husband and how she went crying to her mother.  Or how she asked Bo, I bet over and over why he chose her over the "pretty" girls.  Mind you.. this was an attractive woman.  Even with her wrinkles at 91 you can see she was an attractive woman.

So to the present, now her constant question is, "Do you still love me now that I am stupid?"  I really feel a thud in my heart and stomach when she says it and yet there is a part of me that replaces the word stupid with, "not pretty."  It always feels a bit manipulative.  There is always that underlying need to be reassured.  It is a lot of work!!!  

She has always been a lot of work.. is my take-away.  I'm not trying to be mean I am trying to describe the way you must always be on your toes, always say the right thing or she will turn on you, like a stepped on rattle snake.  I believe that those around her, her husband, her son and daughter, her relatives, they all learned what to say, because it made life easier.  There is no one in my sixty three years who could "be insulted" quicker or take offense faster than, Betty.

I was a late-comer to this party.  All I know is what I have gleaned in the past fourteen years.  I watched the "manipulation" as I like to call it and wondered how grown people could be ruled by such a little woman.  LOL!  Yet she scared the hell out of me the very first year I met her.  Got me right in line with the others.

Bo, her husband, got up early in the morning like me.  We were in the livingrom, next to the closed door bedroom, and he said good morning to me in a whipered voice.  He was a bit hard of hearing but we were not talking "loudly" when the bedroom door burst open and and there she stood with the angriest look and voice I ever wanted to hear.  "Do you have to be so rude when people are trying to sleep?" "There is no need to talk so loudly out here disturbing me."  If you could imagine flames shooting out and a face distorted into some evil mass... that is what I think I saw.  HAaaaa!!!  It was the last time I went out there in the morning during our Christmas visits.  It is the reason I went into our cellar with headphones when she visited and was asleep on the second floor.  It is why I tiptoe into the livingroom every morning now.  I was trained.  

So, on the one hand we have this woman who thinks no one loves her because she is dumb and on the other we have the woman who SNAPS at the slightest wrong word.  I sometimes feel I am living with two different women.  She is a bit like the dog who snaps at you and then licks your hand.

It is a lot of work to find balance.  Sadly with this disease she hardly has control over any of this baloney so it is all up to us to try to keep her from snapping.  I am here to confess.. failure.  Almost every day Bob or I say "the wrong thing" and she is OFF! Often I am left staring into space wondering to myself.. now how the hell did THAT happen?

Our biggest issue here now is that Bob and I are not talkers.  Betty is a talker.  She repeats the same thing over and over and over.  Talking to Betty is; I talk, you listen, wasn't that fun.  Betty believes that Bob and I should shut off the television, turn off the computers, put down the books and sit and listen to her for hours.  She really does.  Here is the problem.  It isn't happening.  Neither one of us are big talkers.  I guess we are not good listeners either because we both think we listen to a lot and Betty thinks we never listen.  Also she will only sit in the dark den with the dark paneling and the not enough light with no breeze.  We sit in the livingroom with the curtains open, LIGHT as can be with a ceiling fan on, constantly.  We have invited her over and over into the livingroom to sit with us but she just cannot do it.  We shut the fan off so there is no "breeze" but that is just not good enough.  So, Betty gets angry.  We try sitting with her awhile but it is never enough because she cannot remember for even a minute that we did.

And so, Betty listens to her music and clicks.  Tongue clicking is all we hear all day and night.  Music or no music, tongue clicking.  Click. Click. Click.  I read a woman's blog today whose husband whistles.  Trust me.  Either one would drive a person mad.  You might think that whistles must be worse than clicks... no.  Repetative anything,  is enough to drive one nuts!  So, I admit that this rambling rant is an indication that I am nuts.

I have no answers only questions.  How can we make Betty's day better? How do we hire a companion for her who will sit and listen and maybe get a word in?  How do we ease her fears and make her feel safe when she cannot remember we live here?  Is there a way to stop the clicking or must I wear headphones all day?  How do we have less "snapping into nasty" and more happy moments? What can we do to make our lives more bearable?  What can I do to help Bob deal with all of this because I am really afraid he is going to drop dead one of these days?

If I have not mentioned lately, I hate Alzheimer's... let me make it clear.  I HATE ALZHEIMER'S.

I am so tired of everything.

It has been an interesting week here in la la land.  Betty is in one of her moods...bad.  If you say anything she deems as a "slight" of any kind she JUMPS all over you.  Thank you God she doesn't literally JUMP me, the verbal jump is enough.  I finally said yesterday, "Betty, you can go to nasty pretty darn fast for someone who is 91."  She said, "Oh, I'll show you nasty!"  HAAAAAA!!!  Made me laugh out loud.  She has not lost any of that side of her... quick draw nasty.  

I am thankful that her hairdresser is back home from her summer trip up north.  Here are before and after pic's.  I am telling you she looks 10 years younger!

BEFORE

AFTER

What a huge difference it makes, even to her attitude!  Well, most of the time.  LOL!!  Nothing is easy with this disease.  First there is the washing of the hair.  You must try to convince her that it has been awhile.  Try telling someone it has been over a week who believes she washed it yesterday, herself.

I bought some disposable wash cloths and they can be heated in the microwave so they are toasty warm.  I just  went up behind her and washed her back with one and then handed her one.. saying, "Give yourself a little wash down with this before you put on that clean shirt to go over to Janet's for your haircut.  She acted as though she has had one of these washcloths forever.. washed right up.   So, there is another thing to be thankful for!

I am also thankful for my little "studio" in our bedroom where I can go and make cards and play with ink.   The hardest part is my startle reflex and that Betty won't knock, she just walks in.  I have a lot of coloring out of the lines... waaaay out!  LOL  I can't imagine she ever walked into a room without knocking before, so this is something she has lost with the dementia.  Social skills.  EXCEPT, THANK YOU!

Have you ever been thanked too much?  Well, 15 thank you's during dinner is a bit much when the thanker expects the thanked to respond with, "you are welcome!"  LOL  Bob and I tag team now.  *smile*

All in all, another week in la la land is about to begin!

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.