ALZHEIMER'S STOLE MY MOTHER

My mother, who is 74 years old, was diagnosed with Alzheimer's dementia in December, 2014. The doctor advised, at that time, that my mother was in the moderate stage of the disease, but my sisters and I all agree that (currently) she has probably progressed more toward the moderate/advanced level. Although only recently diagnosed, my sisters and I now recognize that my mother probably began having symptoms as far back as three to five years ago. Those "little things" that can be mistaken as simply "old age" were, in all likelihood, the very beginning of her disease process.


I think it began with something as simple as forgetting a name or forgetting that, growing up, we had an upright freezer that was located in the utility room of our childhood home. From there, it progressed to not being able to find the correct word for an object, repeating something several times over that she told us previously, and not remembering that she made certain foods from scratch - or that she had made them in the past at all.


Today, it includes not remembering a LOT about our growing up years or our childhood friends, forgetting (until prompted) her grandchildren's names, almost totally forgetting a married couple who had been friends of my mom and dad for decades and forgetting their children's names, not being able to correctly take medications as directed/prescribed, eating foods that expired six months previously, not showering every day, sleeping in late most days, not knowing what day of the week it is/the current date/or even the current year, not knowing her birthdate, not being able to distinguish between "junk" mail and real mail, and struggling to compose a complete sentence or find the words so that we understand what she is talking about.


As my mother's condition has progressively gotten worse, my sisters, my son, and my brother-in-law have all tried to talk to my mother about moving back to Florida so that we could all take turns stopping by to check on her, help her with her bills, take her to appointments, etc. She VEHEMENTLY told us she was not going to move back to Florida, she wasn't leaving her house and accused us all of wanting to take her house and her money. What a mess. She went through periods of not speaking to my sisters (she doesn't speak to me anyway) and then acting like nothing was wrong and claiming she "didn't know" why my sisters didn't call her.


My sisters and I decided it might be best if we all went to see her (she lives out of state) and go to her doctor's appointment with her so that we could all independently assess her and discuss what our next steps should be. So, my sisters and their families, my son and his family and I traveled to Georgia to see my mother (she was told we were coming for her birthday, which was March 17).


We arrived on Saturday, March 14. I had not seen my mother in about 3 years. A little explanation is probably in order - my mother and I are not close. We don't even communicate by telephone. I've come to accept it - it's just the way it is. She was, however, still communicating with both of my sisters - although there have been periods of time (within the last six months) where my mom has been angry at them and refused to speak with them.


Upon our arrival, my mother told me to stand over there by "her" (she meant one of my sisters, but I don't think she could think of her name). I complied - and my mother swept her eyes back and forth between my sister and me and then got a little smirk on her face, gave a laugh and said, "You two are the same shape!" She was referring to the fact that my sister and I are larger than what we used to be and are, by no means, stick-shaped. Keep in mind this was the second thing she said to me after not seeing me for at least 3 years.


While this behavior may, to a stranger, appear to be the result of the disease, my sister and I know that some of this is her basic personality. It's now difficult to tell the difference between those things she says due to the disease and the things she says that are meant to sting. Never one for showing heartfelt emotions, or - God forbid! - appreciating anyone else's expression of heartfelt emotions, my mother used to at least have somewhat of a filter (most of the time). Over the last several years, however, she has lost her "tact" and the ability to keep herself in check.


For as long as I can remember, it was only extremely rarely that my mother ever displayed affection. She has never been one to display her feelings and is not comfortable when others do so. My sisters and I did not grow up in a family environment where everybody hugged each other and told them they loved them.  From my observations growing up, my mother has never been "happy." I don't even know if she would recognize what happy looks like - or if she even knew what WOULD make her happy. It wasn't something that she ever seemed to ponder or think about.


To me, her actions always seemed to be based more on what was "the right thing to do." In looking back, it seems as though, yes, she made sure we were clothed, fed, the house was clean, etc. - all things that my sisters and I appreciate, but I feel as though she did those things not because she enjoyed being a mother and raising a family, but more because it was "the right thing to do." Maybe it's just the era she is from - my dad was pretty much the same way - or maybe it's how they were raised. I can't speak for the reasons BEHIND her actions, I can only describe her actions.


Anyway, during our visit, we all were witness to the ways mentioned above that this disease has "stolen" her from us. She is not the same. She obsesses over small things and carries around house keys attached to rubberbands she has placed on both of her arms. At the time we were supposed to leave for her doctor's appointment on the 16th, she became agitated that my sisters and I were going with her - to the point that she said if we were all going, she wasn't going. Thereupon ensued an argument resulting in one of sisters and I staying home while the remaining sister accompanied her to her doctor's appointment.


During that appointment my sister spilled all of the details of my mother's behavior to the medical professional (nurse practitioner) with my mother present for the conversation. The nurse practitioner tried to explain to my mother that we were trying to help her. It fell on deaf ears. Although the doctor's office told my mother she is not supposed to drive, she insists she will continue to do so and that she doesn't need ANYONE to take care of her or check in on her. The doctor's office is going to notify the driver's license bureau that my mom should not be driving and my mother has been told that she will receive a notification from the bureau that she will have to go in and re-take the test. She shrugs it off like it means nothing and I know what this means (she will probably drive regardless of whether she has a valid license or not). My mother also told us that if we tried to put her in a nursing home, she would kill herself.


The next day, as one of my sisters was joking around and made the comment that she was going to give my mother the best birthday present by going home, my mother confirmed this was how she was feeling by responding, "Yep, that's how you do it."  My other sister had given my mother a birthday card which made some sort of statement about enjoying a rejuvenating birthday with family and my mother told my sister that she would - as soon as we all left. Knowing our hands were tied and that there was nothing we could do, we decided to go home a day early and we all left on the 17th (which was my mother's birthday). 


Defeated, angry, aggravated, dejected, sad, guilt-ridden and worried - the range of emotions I have felt during this process thus far. It would be extremely different if, at any time, my mother acknowledged her condition and admitted she was feeling scared, but I'm sure you can tell - just from reading what is written above - my mother is not going to do that. Admitting it or not, I know she has to be scared. Admitting it or not I know she realizes that her memory is fading away and that she cannot remember what she once knew so plainly. Her extreme independence and her vehement denial that anything is wrong makes it difficult to talk to her about her condition or her care - she refuses to acknowledge it, much less DISCUSS it!  The subject does nothing except make her angry.


Like a bold and unapologetic thief, this disease has changed all of our lives forever.

MY GRANDSON

 

My grandson is four years old - he will be five in April.  If you know me personally, you already know who I'm talking about and, unfortunately, there's no way for me to keep his identity "anonymous"....LOL.  If you don't know me personally, we will just call him "J" for purposes of this post.

 

J is a pretty smart little guy and I don't just say that as just a proud grandparent ("Mimi" as J calls me).  Although he does presently attend pre-school and has been in daycare, he has spent (and still does) a good amount of time with adults.  He is currently an only child.

Due to the work schedules of J's parents (my son and daughter-in-law), from the time J was born, he has spent a fair share of his time with either me or my sister.  Typically, my sister and I would alternate weekends to keep him with us.  There were some weekends that neither my sister or I kept him and he was at home with one (or both) of his parents - it just depended on what the work schedules of his parents turned out to be.

J has always loved spending time with family members and he particularly LOVES it when we can manage to get everyone (his parents, me, my sister and her husband, and my other sister and her daughter) together at once.  We were managing to bring everyone together quite regularly, but then we had a change in circumstances.

My sister and I are both paralegals (different law firms, however).  Her work schedule had become such that she almost literally spent all of her waking time at work.  Her work became such that she could no longer keep J on alternating weekends, or any weekend for that matter, and rarely could schedule time to attend a family get-together (unless a major holiday).  My sister was buried with work and was pushing herself to near breaking.

As this was going on, J was having problems at pre-school.  He got expelled from one pre-school and was transferred to another.  I won't even begin to address my thoughts on the inadequacy of the school systems/teachers here locally, except to briefly note that no one really sought to help him - their method of dealing with J was to simply call one of his parents at work and tell them to come pick J up. No one really wanted to take the time to try to figure out what might be troubling him.

Now, I'm not going to sit here and tell you he's an angel all the time.....he isn't. And I'm not going to tell you he always listens the first time you tell him something....he doesn't always. But he does have a unique little personality...he's a typical four year old.  And, like most four year olds, he requires patience, understanding.....a little EFFORT - things that, I believe, a lot of our current educational facilities lack.

As the number of weekends that my sister could keep J dwindled, my weekends with J also became sporadic as well.  His parents' schedules seemed to work themselves out so that one or the other of them could be with J while the other was at work.  I still kept J sometimes, but it wasn't nearly as regular as when my sister and I were alternating weekends.

Anyway, about five months ago, my sister quit her job to take a much needed sabbatical from working.  She and her husband are fortunate enough that she could afford to take some time off.  During her sabbatical she began having J with her some weekends and our family resumed being able to get together fairly regularly for dinner.  It was during this time that J began to do better at school.
It appears that, at least somewhat, J does better all the way around when he is connected to the family and when he gets to occasionally spend time with ALL of us together.  As I told my son (J's father), the love from the family members is like a blanket around J.  I know J can feel our love - it emanates from each of us.  Our love comforts him and makes him feel safe.  I think this is what is meant by, "It takes a village to raise a child."

Speaking only for myself, I cannot adequately put into words the love and fondness I feel for my grandson.  It is a love like NO other!  I realize that it seems people say that pretty often, but to actually be the person who FEELS that love for a grandchild, it is an amazing experience.  When I am with J, I find myself constantly staring at him, hoping that I don't miss a single word he has to say or a single expression on his face.  I attempt to freeze these moments in my mind and I replay them so as to hold onto these memories.  When I surprise him by showing up at one of his sporting events or at his house when he is not expecting me and to see his face go from surprise to pleasure, to hear him say, "MIMI !!!!" and run toward me to give me a hug - - there are simply no adequate words to express my delight at knowing that he loves me too.

Reminder That Things Could Be Worse

There are things in our lives that we find "difficult" to deal with or that annoy us. There are times when, due to circumstances in our lives, we ask, "Why me?" And there are days, most assuredly, when we think to ourselves, "I just can't catch a break!"

Every weekday I drive the same route to work. And most every day, as I exit the Expressway to get downtown to work, I see the same homeless lady. She is usually sitting on a bench on one of two opposite corners in what is considered a small park area, but is actually bordering a very busy intersection of the main road into downtown. She has a little cart and a suitcase to carry her belongings and on most occasions she is sitting up on a bench hunched forward with her chin touching her chest looking as though she is sleeping. (The picture above, although not of her, is an extremely close depiction of how she appears.) There are very few days when she is not there - even if it is raining, I have seen her sitting there holding a sheet of plastic over her head.

I cannot tell you the number of times I have taken special note of her.....I now specifically look for her each day and I notice if she isn't there. So many times I have wondered what circumstances brought her to this place in her life. We all have a story to tell - I can only imagine what her story must be. Whatever the details of her story are, I would surely bet that devastation and/or heartbreak are woven into her story somewhere.

I know that there are people out there who have no compassion for the homeless and, in some instances, I guess I can understand that. I never see this particular woman, however, bothering anyone. I have never seen her approach anyone, never seen her with a sign asking for money and, in fact, I don't believe I've ever seen her talking to anyone. Most every time that I have seen her she is sitting slumped over on a bench.

While I cannot begin to know what she has been through or what she goes through on a daily basis, I have sympathy for her situation and, for reasons I do not know, she touches my heart.

Her situation is a constant reminder for me that, in spite of my sometimes "difficult" days or days when I think that nothing is going right, my life could be much worse and, in comparison, my worries are inconsequential. She doesn't know me, but she is a part of my day - she has no idea, but she reminds me to be thankful each day.

LOTTERY

What would you do if you won the lottery? I know people throw that question out there nowadays sometimes as a joke, but seriously, have you ever stopped to think about it? And what about the people who have won the lottery previously? What happened to them - are they still millionaires, living comfortably? Are they bankrupt or no better off than before they won the lottery - all because they didn't know how to manage that much money? I see very few "follow-up" stories about people who have previously won a lottery - regardless of if they are doing well or if they blew it all and no longer have anything to show for it. I just don't see that much written about them - some of that may be because they don't want the publicity - understood - but still you would think there would be a few stories out there. The Powerball jackpot is currently estimated at $450 MILLION (which they calculate to be cash valued at $304.1 MILLION). I just can't even fathom that much money! I know, for me, if I won, I would make sure it was going to last - I wouldn't just go out and blow it, no matter how much I may want to in the beginning in all the initial excitement. I like to daydream about it sometimes, though. I think to myself all the time - I'd be happy just winning ONE million, let alone 450 million! I've never been very lucky when it comes to things like this - - it's a nice dream though!

CELLPHONE CONVERSATIONS

Is it really necessary to hold a 15 minute cellphone conversation (using your "outside voice") of idle chit-chat while seated in a relatively quiet restaurant?  So, without any effort, you can hear everything that person is saying.  That's what I experienced today.  That has to be one of my biggest pet peeves!  Not everyone is interested in your cell phone conversation!!  I just think it's about one of the rudest things to subject everyone else to your end of the conversation.  Same goes for those people who use cell phones in a movie theater.  RUDE!

GETTING OLDER

It's weird.....I know without a doubt that I am getting older, but I keep waiting for the day that I FEEL different.  It's difficult to describe.  To me, I 'm not yet really, really old and in my mind (and if I am not looking in a mirror.....LOL), I still feel the same as I have all along.  I am still ME in my own skin. One look in the mirror, though, brings back reality and I wonder, "Where did all the years go?"  I keep waiting to feel older.  But it hasn't happened yet.  

I knew this was going to be hard to explain......LOL.  For instance, in my mind, I can picture how I used to do cartwheels as a young girl and I still FEEL like I can today - even though I know beyond a doubt that I physically can't.  And I still feel like today I could do all the dance moves that I used to do in my 20's and 30's - even though, again, I know beyond a doubt that I can't.  

I still FEEL now - in my mind - the same as I did back then.  I guess this is what is meant by "feeling young"?  

GOSSIP

It is always quite surprising to me just how fast gossip can travel within an office.  I also find it quite amusing to hear a group of people discussing how fast some news or other has circulated within the office - - all the while, I know for a fact that one of the people in that group is actually one of the biggest culprits of spreading gossip!  Quite hysterical!!  I sit in my office hearing all of this going on and simply shake my head.......LOL

NOT LISTENING

I love it when someone accuses me of intentionally not talking to them much anymore and, then, when I finally do give in and try to have a conversation, they are doing other things while I am talking.  And, because what I have just said reminds them of something, they begin a story about themselves - all the while talking over me!  So, I raise my voice and repeatedly say, "That isn't the point of my story- not the point, not the point, you're missing the point." until they finally shut up long enough for me to finish what I had started to say.  THIS IS EXACTLY WHY I DON'T TALK TO YOU because when I do you don't even pay attention!!  Fucking annoying as hell.

CANDID POSTING

Does anyone else out there have difficulty deciding whether to post or not to post?  Do you censor your writing/posts?  Do your posts contain 100% how you feel or 100% how you feel AT THAT MOMENT?  Often, I find myself censoring my writing.  Or, as is sometimes the case, I find that what I write on a given subject could vary based on my mood or based on the time that it is written.

For instance, I look back on some posts now and think, "Why did I say that like that?" or I read old posts and think, "I don't feel that way now."  If I didn't worry so much about that sort of thing, I'd probably post all the time.  But if people I were writing about stumbled upon it, would they be able to appreciate the fact that maybe what I wrote was written in the heat of a moment or was only a temporary feeling?  Would they be mad and unable to overlook what is written?  Would they realize that what is written isn't necessarily how I feel ALL the time - just at that moment?  Would they realize how therapeutic it is to write it out and let it go?  I'm not quite sure what the answers to these questions are and maybe it depends on the person.

Truth is that once I write, especially if it's something that irritates me, I find it liberates me somewhat of the oppressive feeling I might be posting about - therapeutic in a lot of ways.  Should my feeling better, though, come at the expense of someone else's feelings?  This is why I hesitate to post sometimes.  And this is why I don't really advertise that I even have a blog.  In this way, I can continue to post anonymously for the most part.  At the same time, I can connect with those of you who just might be feeling something similar.

LIFE CIRCUMSTANCES

Well, I had said it was time to get back to blogging.....here's my first step.  I wish I could say that this first post is going to be on a positive note, but I'd be lying if I wrote that. Even though this first post may not be positive, it's ok - it doesn't define who I am.  I do my best to rise above it and not let it affect the person I have become.  And while this post will probably raise more questions than it answers, here goes....

I can't stand my own life.  Sad, but true all the same.  I am not suicidal - - that's not what that sentence means.  I should clarify - I can't stand the circumstances of my life.  While it's simple to say, "Well then change it" it's actually NOT that simple.  I know there is hope, that things can be better.  I just have to get to the point where I do what needs to be done - for myself - to MAKE things better.

Until that happens, suffice to say, I feel stuck.  There is a lot to take into consideration, a lot to ponder.  I'm trying to wade through it.  More to follow.....