You Are Not the Boss of Me!

There is a struggle that is going on in my home.  The struggle is dementia against my mother. Unfortunately, the way my mother sees it, its me against her. Some days there a little blips, other days battles. The underlying theme is her anger at me.

From where I stand, I am trying to keep my mother safe, follow the doctors rules and care for her mental and physical self. My mother is at a point where she need supervision. She does not need constant and full care, but she does need to be given her meds to make sure she takes them. She needs to be reminded to eat (though there are times when she won’t stop eating), and she needs me, my family and anyone else who can to keep her company.

In one of the times where I handing her the evening medicine, she refused it. She stated that she feels fine and doesn’t want to take it. I then explained that the doctor has ordered the medicine for her and when she goes back to him she can speak to him about it. She finally relented and put the pills in her mouth. She didn’t swallow. I then stated to her that she should not to let them dissolve in her mouth. The medicine does not work properly if she does not swallow it. Well, that was it! She had gotten very angry with me and shouted “You are not the boss of me!”  I was taken back a bit, I didn’t think I was acting like her boss. I felt that I was acting out of love and concern. My response was that I was following the doctors orders and I am sorry if I upset her.

I realize it must be incredibly difficult to lose control. My Mom is done with driving, so she depends on me or other family members to take her out, friends take her to church. The food in the house may not always be her choice since I purchase the majority of it. She is given her medicine by me. My sister in law brings her to and from the center she attends. None of these things are my Mom’s choice. She has lost control of her own life. Her mind does not work for her as quickly as it used to or at all. When my Mom gets frustrated like this, I try to let her know that she does have choices. It does break my heart that her choices are truly limited. I want her to feel like the Boss.

Roller Coaster of Life

February 26, 2014


Life has twists and turns. That is what makes it exciting. Keeps us on our toes! Over the past six months, my life has changed. Not in the awful, how will I make it change but a change nevertheless. I guess if I really take a microscope, I would realize that the change has been slowly happening over the past two years. Initially, so slowly that it took me over a year to realize the change. Now SMACK right in the face, I see the difference very clearly. Six months ago, my mother was diagnosed with Frontal Temporal Dementia (FTD), early stage Alzheimer’s disease. The change in my mother, has affected her whole family.

I am a daughter, I am a mother. My change is that I have to become a mother to my own mother. Its is very difficult to have your role change. Its difficult for both of us. I have not become the “mother” to a 73 year old woman, but to 5 or 6 year old in the body of a 73 year old woman. My mother whom is my friend, my confident, is gone. There is no more chatting about family, neighbors or current events. If something exciting happens in my day, I can’t share it with her. We talk about the weather. We talk A LOT about the weather. There is no reminiscing about childhood memories, hers or mine.

My Mother wants dignity. She doesn’t want her child “recommending” what she should do. She’s the parent! It must be incredibly difficult to lose control. To slowly slip away from your old self. Here she is losing her freedom. Like a young child gated in a room to keep them safe, my mother’s mind is what confines her. As a caretaker, it is my job to keep her safe, to make sure the gates are “locked.” Finding a way of keeping my mother safe, while letting her feel competent is a tough balance. Her judgement has been greatly affected. She has walked far from home and gotten in the car with strangers. Its very scary to feel that your mother is in danger.

Sometimes it parallels raising a child, sometimes it does not. When my children were young sometimes there were trying days. Maybe I was tired, they were very energetic and there were a ton of things on my “to do” list. I would get through that day and the next would be better. Now I don’t count the days like a did with my children, I count the hours. With FTD, mood changes can be abrupt. One moment my mother will have a sing songy tone in her voice, the next she will be screaming and waving her fists. Then a little while after that she may start crying. This pattern can repeat itself several times a day. I may spend an hour explaining and comforting her on what bothers her, only for it to start all again as if it never happened before. For my mother often the trigger is that she is not allowed to drive. She can’t understand why this freedom is taken from her.

I’ve tried taping the doctor notes to the door saying she can’t drive. I have had friends take her to the store to get rid of the urge, her sons take her out, I take her out. None of these paths truly cure the urge. The urge to feel free, the urge to remain the parent. In her lucid moments, that are fewer and farther between I believe she knows that she shouldn’t drive. I also believe if she were to say she knows, she would admit that something is wrong. Admitting there is a problem is often the hardest step.

To see my mother struggle through this is heartbreaking. this place she is in is a tightrope between two worlds. In one world she is Mom, a quick encounter with her and you may not realize what suffers within. She will smile and wave at a baby in the grocery store bringing joy to them. The second world, she a jumble of emotions. Anger and tears come fast, words come slowly if at all. Its hard for her to explain her emotions if she doesn’t even understand. My mother has often asked me if she will get better. I smile as a sign of reassurance, but my heart chips away each time she asks. Sadly no medicine will make her better.  It can keep her stable, but not make her better. Just as a ponder how sad that is, my mother drifts off into another emotion. On her own personal roller coaster, she doesn’t remember the question she asked and she has moved to a new twist and turn.

I Made a Mistake

My father’s favorite saying was, “The only time I made a mistake was thinking I made a mistake.” He was not a conceited man, in fact he was quite the opposite. That sayings meaning runs very deeply. Its a lesson I think many can use.

Of course my Dad made mistakes, we all do. He had this uncanny ability to turn a mistake into a positive. At the very least you learned something from your mistake. Maybe now you would do things differently, maybe others would have learned from your mistake. My Dad very rarely sweated the small stuff. For in the small stuff, there is something to learn.

Now I try as hard as I can when I make a mistake to say “that wasn’t a mistake.” (at least to myself). When the cake is cooked wrong, or I buy the incorrect size clothing for a gift, or I have misjudged a person’s character, I know I have learned something.  It wasn’t a mistake, it was a lesson.

Love and miss you Dad!

What Big Eyes You Have

The first time I realized something was wrong, I was 16 going on 17.  I walked with my grandmother into her bedroom. When we got in, she looked at her bed and said. “Oh my, the cats eyes are very big.” I was confused since there was no cat in sight.  What was in sight, were her eyeglasses sitting on her bed. I chuckled thinking she was joking and then quickly realized she was serious. For me a teenager I then realized what the whispers have really been about, my grandma was “losing it”. It wasn’t the simple getting old and a bit forgetful, she was on a whole new plane. It must of been going on for a couple of years before the family fully realized what was going on. At that time she was diagnosed she 82 years old.

Fast forward 26 years and I am reliving this diagnosis all over again. This time with my 73 year old mother. Like with my grandmother, I can go back at least a couple of years and realize that this has been going on for at least two years. The interesting comments my grandmother would make, are similar to what my mother makes now. I believe that this has hit my mother at such a young age due to 40 years of smoking 2 packs a day. I also believe that my mother has always had a underlying level of anxiety that plays into role the progression and severity of her dementia and Alzheimer’s.

Some days it feels like de ja vu with my Mom remembering my grandmother. Some days I worry if I am next. Reminding myself that I am not my mother and it does not mean I have to be the same. After reading a study almost 20 years ago of how aluminum was found in the brain of Alzheimer’s and dementia patients, I stopped drinking out of cans. I don’t smoke. I exercise. I keep mentally active. All things my mother and grandmother did not do. But I still worry. Maybe worrying is not such a bad thing, it keeps you alert. I hope and pray that my daughters are not writing about their mom on their blog in 30 years from now.

The Red Flags

A few months ago, my mother packed all of her things. When I say all of her things, I mean everything. She even took out the drawer dividers out of her dresser. She didn’t pack like she was going on vacation, she packed haphazardly. She would go into her room, out to her car a just throw things in. Some where in duffle bags, some in small white grocery bags, and others just thrown in.

I knew things have not been right with Mom for a while, but this was the first time she had done something like this. For the first half an hour, I did not ask her what she was doing. She gets defensive and upset when I question her and I was trying not to micromanage my own mother. When she walked out of her room with the contents of her junk drawer, I became concerned. “Hey Mom, whatcha doing?” I asked. “I’m packing my things up to go home. I don’t want to leave all my things in your room incase you have company after I leave.” she replied. This is when it was fully clear to me things were not right.

A couple of weeks before, my mother had visited my brother and  his family out of state. She would take the 4 hour bus ride and he would meet her at the other end. That particular trip, that she had made at least 20 times before, she got confused when she got into the city. My other brother was to meet her, have lunch and put her on the bus. She bypassed him and tried to find the bus (which was two hours later). Two very kind women encountered my Mom and got her connected with my brother. Then one of the women changed her bus ticket to be able to take the bus down with my mother so she wasn’t alone.(I will be forever grateful to her) Yes, that what a blaring red flag, but we could attribute it to other things. Anxiety, fatigue etc.. This “going back home” thing was something entirely new.

It took some time, but I realized she thought she was at my brothers house. That day, it went so far that she was telling me things that Colleen told her. The information was correct, but I am Colleen. She didn’t even realize that I am her daughter, and in fact was acting as if I am my brother’s wife Amy (which I love to look like her!). There had been many red flags along the way, and we (her family) had an answer for many of them. This incident was a turning point for not just my mother, but her whole family. It was the catalyst that began the doctors visits and testing that would lead to her FTD diagnosis. As shocking as this incident was, I am thankful that it happened so my mother could start the road to care that she needed

Stuck Between Two Worlds

November 2, 2013

I am stuck in two worlds. In the first world I am my mother’s daughter. She is taking care of me, more wise and in charge. That is the old world. In the new world I am taking care of her, in charge but trying to act like she is. It is an incredibly difficult situation. To have my mother keep her dignity all while she needs to be taken care of. The hardest part is the fact that my mother thinks she is fine. Sure she has moments where she knows something isn’t right, but overall she feels she is an adult and should be treated like one. As I am stuck between two worlds, so is my mother.

After the ride my mother took with the stranger we (my brothers and I), have decided to have someone come to the house while I am work. Fortunately, I have a friend who is in between job assignments. Rachel is kind, (beyond nice), compassionate, a great listener and talker. She stops by most days for a couple of hours. She takes walks with my mother, does puzzles and occasionally take her out shopping. My mother is enjoying her time with Rachel. Unfortunately this is only a temporarily solution for my mother as Rachel’s job starts up again in a few months. I am happy to have Rachel, I am happy for my mom to have Rachel. With Rachel, my mother can choose whatever world she wants to be in.

Stranger in the house




October 24, 2013


Recently my daughter stayed home from school sick. As most teenagers, she used this time to sleep in. Around eleven am, she was awoken by the sounds of voices outside the house.  She got out of bed looked out the window (as well as she could without her contacts) and saw a man walking up the steps.  She then heard the man talking inside the house.  She did what most teenagers would do, and hid in her closet. Which is a feat in itself, as it is usually over stuffed! She heard the man leave the house and peered out the window to see him drive away.

This event was a turning point in not just her life, but my family’s life. It was the day that it became apparent that my mother has an illness. Yes, the testing came back that my mother has FTD, frontal temporal lobe dementia with early onset Alzheimer’s. That diagnosis, although helpful was just a title until that point.  It was now evident how FTD was effecting my mother’s judgement. The doctor strongly recommended to my mother to stop driving. My mother has edited herself before that point and wasn’t driving as much, but still driving. My mother is the type of person who would have cabin fever if she stayed in the house for a day, so a month of no driving was painful to her. She did not like the feeling of not being able to control how she leaves the house.

This day, we found out that my mother had been walking to grocery store, the bank, the pharmacy etc.. to get out. She would do it while I was at work and was always be home before I got home. She would then hide the “goods” in her room so I never knew. My mother had walked over 2 miles.  First to the bank to withdraw money, and then to CVS, where she purchased four 2 liters of soda, chips and a few other snacks.  Now how my 100 pound mother, who normally goes out and takes a 1/8 -1/4 mile walk at a time thought she could  now walk 2 miles home with those heavy items, I have no idea. So as she trudged toward our home, a stranger pulled up and he drove her home. He then nicely carried her heavy packages into our house. The whole situation was frightening to say the least.

When the coast was clear, my daughter went downstairs to see what had gone on. There she found my mother, hiding her packages.  My mother did not know who the nice man was who drove her home. She did not see any danger in what she had done. She could not understand how she could have gotten hurt immediately, or how this “nice” man could have come back and  hurt her or someone else. When I got home, the story had changed.  It was the man down the block who she knows very well.  I asked if I could go thank him, and she hesitantly said yes. The neighbor was confused as to why I was thanking him, since he never drove my mother. This was an eye opening experience and has made us re-evaluate the treatment for my mother. Many days its my mother who is the stranger in the house, not quite the person she used to be. We don’t want her inviting any other strangers in!


Perfect timing?

September 24, 2013


September has yet again crept up on me way to quickly. Now I have two children in COLLEGE!!! How that can be, I have no idea.  I still see my children as babies toddling through the house trying to navigate steps.  Now they toddle through life and the steps they take are bigger and further away. Sigh. My baby has started middle school and has been so ready and geared up to be there. With my baby girl in High School, emerging out of the shadow of her older brother and sister. Its a new season in our house. Perfect timing for new things, I think.

I have taken a new work related position outside of the home.  It is a great time to take it, and a terrible time too. With my youngest a great age to be able care for himself, I am not worrying about the little things. I can get ready for work, knowing my children are eating breakfast and hopefully putting their dishes in the dishwasher (hey, a mom can dream). My job starts at a time where I drop my two off school on the way to work. And I am home at dismissal time for the youngest. I am off school holidays too! Perfect timing! Or is it?

So just at a time when my younger ones don’t need me as much, my mother needs me more. Her mental state has seemed to deteriorate so quickly that she can not function as well as she did two months ago. We are awaiting test results to get a full confirmation of what is going on with her. While I am at work, I worry as to what she is doing.  Is she putting herself in danger? Is she eating? Is she getting lost on a walk? I come home each days, and all seems ok with her. But it is clear to me, there is rarely perfect timing. Just times, where you make things work as perfectly as you can


Wait- what?!?!

August 28, 2013


The other day my mothers GP had a visiting nurse come to the house.  Now to look at my mother, you would ask, wait, what?!? My mother walks several times a day, is seen out driving to the local supermarket and holds conversations with neighbors and family members on a daily basis.  All seems great, but something is not right. This is why the nurse came by.

She was a kind but tough women originally from the Philippines. She is the nurse who comes and assesses potential patients.  Her job for my mother was quick and simple.  She came in, sat on the couch and started asking my mother questions.  My mom treated her as if she was friend of mine that needed entertaining. The nurse asked my mother what the date was. My mother struggled, searching for the answer and then looked at me to tell her. The nurse stated “Don’t look at her, you tell me.” At that moment I realized that I have been giving my mother answers for months. She then asked my mother to remember these three words “couch, pen and lamp”.  A minute later she asked my mother what those words were, she could not remember. After a few other tests, such as trying to draw the hands on a clock, which my mother could not do the nurse loudly announced to me “your Mom has dementia”.

Wait, what?!? How did that happen? And why are you saying it in front of my mother? Shouldn’t we be whispering in the other room about it? How can you be sure? Shhh! My mother is right here! But my mother seemed unfazed, still smiling at the nurse and asking if she can get her a drink. That was when I knew, my mother has dementia and I have been “protecting” her by filling in the blanks and helping her out for months. The forgetfulness and quirky behavior has been something else along. The nurse suggested a full evaluation by a neurologist which we have an appointment in a couple weeks. I am sit here wondering, wait, what?!? until we get more information