Update.....Florence and Alzheimer Disease.....

Hi again,

I know it has been awhile since I have written about Florence, and dealing with her Alzheimer disease. That has been weighing on my mind lately.  So I thought I would take a moment to give a brief update.

1. When stage 3 hits, you know there are only 2 more stages ahead. There is a sense of foreboding. You know that this situation is only temporary.  You know it will only get worse.  You wonder when her memory will be completely gone, and you try to prepare yourself for the day when she won't remember who you are anymore.  You still don't want to plan a funeral, but you know you need to start thinking about it.  You feel a tremendous amount of loss and mourning for her.  You miss her a lot.

In fact, for 3 years of my life, she WAS my life.  I doted on her day and night, like a new mother.  I've never had a kid, so this was all new to me, and I had to learn the hard way how to deal with her, and the disease.  Alzheimer disease is horrible.  The decline that you witness daily is heartbreaking.  The things that you know she could do before, are no longer possible.  She knows it too, but doesn't understand what's happening to her, and when you try to explain it, the brain cannot process it at all.  It's like a brick wall is being created between you and her brain, and you can't quite get through anymore.

I have felt useless, lost, sad, empty, bored, listless, depressed, and just totally out of sorts since she's been gone.  I've gained some weight back.  I don't feel like exercising anymore.  I don't feel like getting up in the mornings anymore.  I don't feel like doing much, because she's not here to do things FOR.  I need to be needed, and I feel very much like I am not needed anymore.

2. Stage 3 includes some combativeness, meaning she hits people. She has had a few days like that, in the new facility where she lives.  She insisted that "she was the nurse in charge of this meeting," and when 2 women nearby "weren't paying attention," she started yelling at them, calling them names, and hit one of them.  She had to be taken out of the room, redirected, and told to calm down.

It is very difficult for anyone to deal with a person you love, who cannot control their tempers anymore.  They feel frustrated, but they don't know WHY.  They feel angry, but they have no clue what is causing it.  They feel lost, and scared, and like they have to defend themselves somehow, because they cannot process much of anything and they feel overwhelmed, so they hit.  They punch.  They scratch.  They yell, they throw a childish temper tantrum.  It's difficult to imagine your mother acting like a child, but that is what happens.

It is numbing to know that she isn't the mom you once knew, and she'll never be that person again, ever.  She cannot be reasoned with, there IS no logic, you can't get through to her to explain things, when she's out of control.  Redirecting, distracting, or changing the subject are really the only options that works most of the time.  But that is very emotionally draining to do.  You run out of ideas, you run out of things to distract her with.  You run out of options, and you sometimes get angry right back at her, even while knowing she cannot help being like that.  You CAN help being like that, but at the same time, it gets more and more difficult to control YOUR emotions and temper too.  It's a vicious cycle.

3. Falls are also a part of being 90, and being frail.  I got a call this morning from them, telling me that she was found sitting on the floor beside her bed last evening.  She tends to fall on her butt, or slides out of her bed and her feet aren't prepared to stand---when an old person stands up after being seated or laying down for awhile, the blood pressure drops, and their legs can't hold them right away.  They reassured me that she's walking around just fine and doesn't seem to remember it, but I told them to ask her if she has any aches and pains (she may not realize it, sometimes they don't feel pain even if they are physically hurt somehow), and to give her Tylenol if she does.  This is the 3rd time she has fallen since she's been there.  That is about one fall per month on average.  For a 90 year old, that's typical.

Sometimes, you know that she falls just to get attention, or to protest something that she's upset about.  She may not be able to explain what exactly she's upset about, but if she falls, she knows you'll spend time with her, she won't be lonely anymore, she'll have an audience, someone to entertain her, and feel sorry for her.  Manipulation is a big part of the disease, and you will come to learn how to tell when it is happening, and then you'll start to resent it.  And sometimes, when the fall occurs, you know when it's a REAL fall, or just a fake one.  My gut tells me that sliding down on her butt out of her twin bed in her own room when nobody was around, was just a call for attention.  I should probably go visit her tomorrow.

4.  Visiting a person in an Alzheimer facility is not an easy thing to do, either, because she is surrounded by other people who have the same exact thing going on in their lives, and the lives of their families and caregivers.  But there's a twinge of feeling embarrassed about it, you don't want to talk to these other people because, what if your mom is worse off than theirs is, or what if you're doing something wrong, or what if they feel that your mom is a bad influence on their family member in some way, etc.?  You just never know what they might be thinking about you and your family member, so it makes you afraid to approach them, to ask if they are going through the same things you are, or not.  Sure, the facility might offer a support group, but very few people actually go to those meetings, probably from embarrassment.  If you feel insecure about your own abilities to deal with the disease, do you REALLY want to broadcast that in front of a group of total strangers??  I know I don't.

So, quite often, you are alone in dealing with it.  Visiting makes it even tougher, because sometimes they want to go home WITH you, and they don't understand why they can't.  They manipulate your emotions sometimes, like a kid would, telling you that they "won't let you out," and "won't let you go home," and other things, such as "they treat me like a child," etc., that make YOU feel guilty, and shamed, and it tugs at your heartstrings to the point where you want to cry right along with them.

5.  It FEELS sad and depressing when you walk in the door of the facility, no matter HOW they try to decorate it happily with yellow colors and flowers everywhere...it still feels like a desperate situation, surrounded by horribly confused and lost people who have no sense of purpose in the world anymore, and what if you CATCH IT?!!  You know, logically, that you can't "catch" Alzheimer disease, but you also have this irrational fear of "what if that's ME in 30 years or less?"  And THAT is the biggest thing that you confront every minute of every day of the time you're with that family member who has it.  What if that is ME, in a few short years, and who is going to take care of ME when it happens, and how will I deal with it, and who will be there when I go through it, and how can I prevent it from happening? What can I do, to avoid this fate? All of these thoughts tug at you as you walk through the door of the facility, sit in the tiny room on the twin bed, hugging her and reassuring her that she is in the best place she possibly could be, with doctors on-site, and good people who take good care of her.

All the while, trying to convince YOURSELF that "maybe a cure will be found before I get it," or, "Maybe the facilities will be more equipped, and better, by then...."  and in the back of your mind you're thinking, "These people get PAID to take care of her, they have NO emotional attachment, how can they REALLY understand, and do they REALLY take great care of her, or do they just do their job to get their paycheck and go home and not give her another thought the rest of the day?"

6.  Then you go home, feeling drained, and sad, and depressed, and you look around at her bedroom that is still the way she left it, and you see the cats that she has left in your care, and you sit in her favorite recliner chair, and you wonder if she might be better off coming back home to live with us again, or would that be too difficult, would it confuse her too much, would it be too hard on us, should we leave her where she is, should we visit her more often, or not as much, does she need anything, should we bring her flowers, or candy, or more clothes, or another blanket....

You wish it could all just be over with, maybe she could go to sleep tonight and never wake up, and wouldn't THAT be a relief, but then you instantly feel GUILTY for thinking such a thing....

And you're sitting in a big house, and it's quiet, and you're alone.  And you know she'll stop talking soon, she'll actually be unable to talk...you know she won't remember how to dress herself anymore, she won't remember when to eat, when to sleep, what day it is, what time it is, or even who you are at some point soon...you know she'll be a walking zombie person like so many others that live there along side her....and you feel heartbreak worse than any other time in your life, because there is nothing you can do about it.

This is what it's like to have a family member with Alzheimer disease.

Love, Rebecca