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.
