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.

Happy Birthday to Me!

Surprise! That what was yelled at me when I walked through my girlfriends door last week. She asked me to come over and help move a carpet for her. The last thing I was expecting was a surprise birthday party! (See pictures and you will know that statement is true!)

My daughters had planned this event and asked my friend if she would allow her house to be used. It was the first time in my life that I was surprised. The first time that a party was just for me. All of the parties and showers were for me and my baby, me and my husband, I even shared a sweet 16 with a friend!

The people who were invited, were all people I love in my life. They bring positivity, kindness, love and they are family to me. Such a beautiful job was done by my girlfriend and my family. I was reminded once again how truly blessed I am!

The Baby

Its official. No denying it. As if the deep voice, height and shaving didn’t tell the story, the birthday did. My baby is thirteen. Officially a teenager. How did that happen?!?! I swear I blinked my eyes and it was here.

There is something different when your youngest “baby” hits an age milestone. You knew all along it was coming. But now with Aidan, him being an actual baby is a distant memory. There are no traces of baby fat, no sign of needing help putting his shoes on. He has moved on. He is now cool. Interestingly with Aidan he is my one child that looks very different from how he did as a toddler/preschooler. Then he was a chubby toe head blonde. Now he is thin angular faced brown haired young man. If it wasn’t for the easy smile, I may not know they are the same person.

Now I get to watch Aidan transition into manhood. Find himself and his place in the world. As I will now transition myself into a mother with no more babies. Happy 13th birthday Aidan!

The Control Freak

If you have children you may have been a “control freak” at one point. For me it was with my first. I didn’t want anyone driving him around besides me or my husband. I had a routine for him. I also believed that I was the best person to make sure that routine was followed. Although I was tired and wanted help, no one not even my husband could not do it right, which just meant “my” way. This was just my way of making sure my baby was protected. As a mother, most feel a strong desire to keep them safe. (I assume for a father too) As they grow and more children come along most parents learn to loosen up the reigns a bit. These feelings I had with my first child are pretty similar to how I feel about my mother now. My Mom is not always capable of making appropriate decisions. She needs someone to guide and advocate for her. Since I live with her I see this everyday and understand all to well. My Mom will eat cookies for breakfast, walk out of the house without a jacket in 30 degree weather and put a outdoor halogen bulb in a desk lamp. If I say to family members and friends “make sure Mom eats…..” or some other directions, I am thought of as a control freak. When left with the task of taking care of a senior with FTD/ Alzheimer’s its difficult. On one hand you have someone who is obviously an adult. Someone who knows if you treat them like a child and will not be happy if you do. I think when people see my mom, they like to think of her as the “old Elaine”. It hurts them to much to think of her any other way. They continue applying old logic to a new problem. As an FTD/Alzheimer’s caregiver, whether fulltime or just for a few hours a month you need to guide them to the proper decisions. So while I desperately need assistance with my Mom, what I need is someone who will treat her like an adult, yet care for her like their child. I need to know she will be safe, fed and cared for just like a child needs. Its a difficult situation to be in and not be labeled the “control freak”. My Mom’s companion does understand and she is great with her. She is trained and compassionate. I also think what helps is her expectations are different, she never knew the “old Elaine”. I believe in some ways its easier for Mom’s companion then for those of us who have had a lifelong connection with Mom. I am grateful to that Mom has a companion who does not need to have the “control freak” me, looking over her shoulder.

To the Lady with the Screaming Kid

A few weeks or so ago, while out to dinner with my family, there were a couple of “misbehaved” children. These two boys ran around the restaurant shrieking, laughing and full of energy. One boy came up to our table several times expressing himself loudly. Truth is, they were not misbehaving, they were being themselves. I could see that these boys were on the spectrum. We were not annoyed with boy who came to visit our table, we were joyed to see them at the restaurant.

The mother of the one boy who came to our table would grab him and apologize to us. No matter how many times we said “no worries, its all good”, she still apologized. I wish she would have know that it really was alright with us.  I wish she would have known that we were happy she had taken the time to go out and get a bite to eat. Good for her to let someone else do the dishes. I wish I would have told her that.

Growing up, it was a rare sight to see someone on the spectrum out at a restaurant. Maybe that was due to the potential stress it may cause the parent worrying how their child would behave. Maybe the parents were worrying how strangers would behave. We have all seen plenty of children not on the spectrum who have not behaved well. Crying fits, tantrums, throwing fists perhaps because they didn’t gets candy bar or something else. So this situation should not be any different. If I come upon a situation like this again, I will go beyond saying “no worries” and tell that mother or father, “sit down, eat, we enjoy having your child visit us.”

The Bell’s (Palsy) has Rung

Last week, a strange feeling started coming over my face. Slowly the left side of my face starting from my chin up started to get numb. By the time the early evening hit, I was numb from my eyebrow down and I was scared.  Fearing a stroke (yet all day finding every excuse possible) I called  my doctor and headed to the hospital.

When I arrived, I was treated like royalty.  I have never gotten into an emergency room so quickly! I guess the fear of a woman having a stroke and malpractice can make things happen fast. So after seeing several doctors, performing many simple tests (close your eyes, smile and CAT scan etc…) it was determined that I have Bell’s Palsy. I am fortunate that it is not a stroke. I am disappointed that I have Bell’s Palsy.

Since my symptoms started while I was awake, they were mild. Sunday it was worse, however most people could not tell unless I smiled. Monday was worse, Tuesday worse, Wednesday worse.  My left side of my face is in its normal place, as the right side of my face is drooping. There is a good inch difference in my eyebrows. Eating is difficult, my jaw hurts, my ear hurts, I drool. The medicine I am on is giving me crappy side effects. Quite frankly, it sucks.

So each day I look in the mirror and try to convince myself that things are better, or at the very least not worse. Then I go out, try and talk (out the side of my mouth) only to see sadness reflected back to me by the whom I am trying to converse with. I want to explain to them, its OK!!!! My family is awesome through this. On Thanksgiving, I got them all to take a family photo emulating my face. Its hysterical. My friends, have been quick with the jokes such as “why the long face?” These little bright lights, the ability to laugh its what makes it easier. So this bump in the road is again teaching me lessons of compassion, and laughter.

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

The Grass is Not Greener

We’ve all heard that saying again and again, the grass is always greener on the other side. It is not. See the awesome thing about my grass is that its MY grass. Lets face it, your grass would just not fit me right. The shade of green may not go with my eyes ; ) or it may be a little too long for my short stature to walk through.

When things aren’t going as smoothly as I wish them to be for me or my family, I don’t wish to be another me or another family. I  work for things to get better. I hear many other people, frustrated with a situation wishing they were like “so and so”, “since they have it easy”. I am not saying I have never done that in the past but once I came to the realization that everyone has a journey to travel, it has made my life easier. I am able to appreciate what I have. To appreciate the good, the bad and the ugly and grow from them. Perhaps that is something that comes with maturity and experience for many. I guess there are some who may never get it. I’ve met a few people like that and they are quite bitter. Knowing that that is not who I want to be or become I made a switch in my thinking years ago. So far it is working for me.

My grass is meant for me and as imperfect as it may be, its perfect for me.