Progress Does Not Mean Improvement

Before my mother got ill, the word progress had positive connotations with me. When I get my children’s progress report from school, its to show me how far they have come or where they need to go. When my son has progressed in his soccer skills, it refers to him getting better. Progress or progression in Alzheimer’s and FTD do not provide comfort to the patient or those around them. It has almost the opposite effect.

My Moms disease has progressed slowly and intermittently over the years.It was so slow in the beginning, that we did not even realize she wasn’t well. Since January, we have seen a steady progression in my Mom and the disease. Words are harder to find, she has had a few (far between) tolieting accidents, her personal hygiene is starting to wane. I try not to look at it as a day by day, but rather week to week. By doing so, I can judge a greater amount of time to see if there has been a difference. We keep hoping for a plateau. A place for my Mom to sit for a while, before more things go. In six months, we have not had one plateau. To say it’s disappointing would be an understatement.

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Alzheimer’s is Like an Ikea Manual

You know when you get a new piece of furniture and you have to put it together? Many brands give you detailed written instructions. You follow each step, refer back to photos and written word until eventually your furniture is built! That is not what happens when you get a piece of furniture at Ikea. There is a manual included, but its like playing Pictionary. Black line drawn pictures for each part, with arrows telling you which way to go. You have to figure out through trial an error that its the short plastic screw that goes in, not the longer metal screw. It usually takes longer than expected to put a simple piece of furniture together. While doing so, there is plenty of frustration to go around. That sums up Alzheimer’s.

Many days I feel like I am playing Pictionary or Charades with my Mom. She is searching for words and I am calling out (often in my head), “blanket, bed, … ” to fill in the blank. There is no manual that tells me what steps to take next, which “screw” is the right one. Sometimes full pages of the “manual” are missing. We have to guess and guess and through trial and error still have a 50/50 shot that we get it right. Each time there is something to put together with my Mom it’s a different “manual.” You never know what you are going to get with Mom and you need manuals or guidance through out the day. So for the person “building” the furniture it is frustrating, for the person assisting with the build it’s devastating to never get it put together the way it once was.

As much as I search for answers to the daily and ever changing questions I have with my Mom, I can’t find them.  I realize that it is in part due to the fact that there is not one answer. An answer that would fit today, may not next week or may not even fit the same from morning to night. For now, I will keep searching for answers and hope to be able to put it together.

There is No Age Limit to Vanity

Wrinkles should merely indicate where smiles have been – Mark Twain

On Easter Sunday, I set up a my new backdrop. I wanted to test it out, and to test a few things out on my camera. I had hoped to get pictures of my Mom who is turning 75 this week. While waiting for my “models’ (my children) I asked my Mom to sit for me. She declined stating that she does not like her picture taken due to her wrinkles. I expected that answer so like a child, I said “paaleeeeaaassseee Mom.” She smiled and said she would.

The photo shoot was quick but fun. Just because the woman sitting before me is not the exact same mother I had before FT Dementia and Alzheimer’s, I was blessed with seeing old parts and new of her. Though words don’t come as easily Mom is still vain like many of us. She wanted to look good and young and communicated that she does not like her wrinkles. “I look like a really old lady!” she stated. At one point she decided to pull her skin-tight on her face to lessen her wrinkles. Her behavior was that of a silly five-year old. She had me in stitches and soon she was in stitches too. Mom continued with her child like behavior. It was sweet and endearing. She showed me there is no age limit to vanity.

I honestly don’t remember my mother without her wrinkles. When she was a young child into adulthood she spent every summer at the beach. Then she smoked two packs of Winston a day for over forty years they both took their toll. I bet some of those wrinkles are from her five children (not me of course).
What I got to see through the lens and then on print was a mischievous, sweet woman, wrinkles and all. I am so happy she sat for me! Happy 75th birthday Mom!

I am not an old lady, just a little girl with wrinkles – Edythe E. Bregnar

Ho Ho Ho

As the holiday season approaches, I feel more and more sentimental and nostalgic. I miss when my kids were little, the excitement leading up to Christmas. I enjoyed reading “The Night Before Christmas”, and watching them hang on to every word. Although older my children have hung on to the magic of Christmas.

I miss my Dad. He always loved Christmas. In fact while he was sick he told the doctor he HAD to be home from Christmas. He made it home weeks before with the doctor telling me the likelihood of him being admitted back in before Christmas was more than 80%. My Dad did not go back in until late January. He got more than he asked for! It was a gift for all of us. My Dad’s last Christmas with us was in 2007. At times is seems like yesterday, but a lot has changed since then.

The most notable change has been my Mom. I wonder how Dad would handle the current events. Known for his patience, I would expect that my Mom would feel a bunch of support and love from him. It was difficult for my Mom to see my Dad journey through his cancer. I would expect it would be difficult for my Dad to watch my Mom journey through FTD and Alzheimer’s. As my mom retreats into her puzzle book this Christmas time since the hustle and bustle around her is to much, I hope she feels the love and support of her family.
Happy Holidays to all!

Brute Strength

There may be a time in your life where you witness someone using brute strength.  It’s that savage brawn that we have seen on the news when a group of people lift a car up off a person. Adrenaline pumping to save a life. It can be pretty useful. It can be pretty dangerous too.

I have witnessed on many occasions brute strength. It has come in the form of my frail and tiny mother. This is the woman that getting up from a chair and she nearly falls over. The woman who shuffles and is unsteady on her feet. Yes, she comes with brute strength. If you catch her having one of her “episodes’, watch out. Mom can get out of the chair faster than someone an eighth of her age. She can run faster then most of us too.  She will be across the room in seconds.  A feat that may take three times as long on a regular day. My family has been on the receiving end of her brute strength. We have had to duck and weave at her waving fists We’ve had to back up and place ourselves behind something to slow her running. There have been many times where we had to jump in between her and the person she has set her sights on. It is so incredible how her delusional behavior due to FTD and Alzheimer’s, fuels her.

With my mother’s small size, I don’t worry that she can do serious damage. Except for today. Today I walked in on my Mom watching women’s weigh lifting. Weigh lifting!!! My mother was never one to watch sports now she does and chooses weigh lifting?!? I have to wonder, is she trying to get new techniques? Has she been secretly been lifting? Is this a sign of things to come? We may move on from brute strength to real strength. So I will have to up my gym routine, so I can run faster, and duck and weave quicker. Brute Strength

Dream Interpretations

I had an interesting dream the other night.  I was riding a bike with my Mom on the back of the bike. We were coming down and hill and when I went to apply the brakes, I realized they weren’t working. We were heading towards and intersection so I put my feet on the ground, dragging them trying to slow down. I told my Mom to hold on, we were going to have to tip the bike to avoid the intersection.  The bike was tipped and my Mom was screaming at me asking me how I could do that to her. Then (still in my dream), my husband rode over and asked if all was ok. I told him what happened and when we looked at the bike, we realized the brake line had been disconnected. Then my mother chimed in stating that she had disconnected them.

No dream crazy dream interpretation needed. This is how my life is. Me dragging my feet trying to slow down what is happening. My mother constantly sabotaging her treatment and care. Her yelling, me bringing her along. Tipping which ever way we need to so we can understand and get things done. The helplessness we both feel. The control we both crave for. When I told my husband Graham of my dream he laughed. Not much of a dream if its what happens in everyday life!

Time for a Haircut

My brother told me the other day that my mother was talking about her hair. In the past couple of months, Mom has become fixated on her hair. “You know all the women at the senior center have short hair.” she said to me on several occasions. So I took my Mom for a haircut. It was pretty short. Two weeks later she was asking for a haircut again. So the following week I took her back and she got another haircut. I thought all was good.

Two weeks after that, when she was spending time with my oldest brother she complained about her hair again. “Look at my hair.” she spoke with annoyance as she tugged on one side of her hair.  “This side is longer than the other” she exclaimed. She then pushed the “shorter” side behind her ear to emphasize her point. My brother Joe said, “It looks fine Mom, I don’t think its shorter. “Then she explained to him what has been going on. “Colleen has been sneaking into my room at night and cutting my hair while I’m sleeping.” she told him. “That is why its shorter only on one side” she stated.

When my brother told me the story, I couldn’t help but laugh. Imagining myself creeping into her room with scissors in hand getting ready to cut her hair conjured up an entertaining image. Truth is, this story really plays an important clue into my mothers mental state. She often wakes up angry or very happy. Many times she will tell me about something that has happened, which never really happened. We finally figured she is dreaming or hallucinating these things but truly believes that they happened.

For my Mom’s next haircut, maybe I will give her a mohawk ; )

Lost

I am an abused woman. It’s difficult to say, its difficult to know, but it is the truth. The fearing of what is the mood going to be like when I get home, afraid to say or do the wrong thing is what I go through daily. There are times when I have days, even a week where things are great. There are other times when its hour to hour. We’ve heard this story in real life and on tons of Lifetime movies. Many can relate to it.  My abuser has a mental illness. My abuser is my 74 years old. My abuser is my mother with FT Dementia, Early Alzheimer’s.

The ironic thing is that my Mom would often to tell me as a young adult to never stay with an abusive man. Whether a man’s tongue lashed at me or he put a hand on me, I was to leave and quickly get out of that relationship. She would say, “No one has the right to treat you that way.” Fast forward many years later and that is what my Mom does to me. The difference is, there is no escaping. I can’t leave. My mother is ill.

There are many people who go through this, from a spouse, loved one or child. I know some parents who are on the receiving end from a unwell child. They can’t leave either. So we trudge through, make the best of the best times and duck and weave either physically or emotionally in the worst times. Its an arduous task that we take on, but when you love someone how do you not take it on? I now can understand how people get stuck in an abusive relationship, especially if they see their abuser as needing them.

For me, I believe that once my Mom’s medication is sorted out, things may get better. I also take the good times and hold on to them. I know that the woman who stands before me ranting and raving, swinging her fists is not truly my mother. My mother has gotten lost along the way.

My Mom the Dancer

The other day I took my mother to the store with me. With the summer heat, we seem to be going through drinks in this house extremely quickly. While on the way to the “big box store” (the best place to stock up on a gazillion drinks) we past the “Something Something Cafe.” (I don’t remember the exact name) My mother quickly told me how she and my Dad would go there very often. “Its a nice place and we had fun there”, she said. Hmmm I thought to myself, really?, my Mom and Dad went there?

She continued to repeat herself and I tried to digest what she said. Finally after a few minutes, I had to say something. “Mom, I think you are confused, it must of been a different Cafe you went to.” I said. My mother replied, “I thought that was the place, your Dad loved it.” We are now coming to the point where I am trying to figure if this is dementia confusion, or is my mother giving me TMI. Now I just have to burst out “Mom, that Cafe is a nudey dance place.” I am laughing really hard at this point. “No, no, that’s not the place! We have never been there!” my Mom quickly laughs back. The two of us continue to laugh for a few minutes. Hmmm- my mother a dancer?

Nothing Like Fudge

My mother was a very funny lady. She had a sarcastic, dry sense of humor. Growing up my mother was a bit of a yeller, but she was also quick to make a joke out of potentially sticky situation. If we were misbehaving, she would threaten to get out the paddle. Now that paddle was a big joke. It was tucked in the back of her closet with cobwebs on it. When she did take it out, it had silly pictures on it with an upbeat ridiculous poem. She would look at it, we would look at it and we would all laugh.  She never used the paddle for punishment, it never touched our bodies. My Mom used the paddle as a tool to change our behavior, which it did. It changed us into giggling, behaving children. The paddle worked.

Many times I have used different “paddles” or tools to change my children’s behavior.  When they were really young if they were yelling or having a tantrum, I would whisper as quietly as I could in their ear.  They would have to stop what they were doing just to hear me. Another tool I used was for the runaway child, the one that would escape you in the supermarket or mall. I would shout out a different name. So when my son Colin was running towards the candy aisle at full speed, I simply would say “Robert, get back here!” He would stop dead in his tracks, and say, “My name is not Robert!” I would then call him a few different names as he worked his way back to  me. The only downside of that was when people would be very curious if I was ‘actually’ his mother. lol

Now with Mom, my son has found a tool that can usually change a bad mood of hers. That tool is chocolate. Who doesn’t love chocolate? He found that one day, while she was in a particularly bad mood, he offered her a piece of fudge. That was a total game changer! Now from time to time, if we see she is starting to get upset or agitated over something, we offer her food (usually something chocolate). It’s a small amount, but boy does it make her happy.