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

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.

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!

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

Dementia Related Symptoms

Here are some dementia related symptoms:

stress

illness due to stress (such as shingles)

high blood pressure

hair loss

weight gain/loss

sadness

grief

These above symptoms/illnesses are not just things the person with dementia experiences, but what the caregiver experiences.  In the past year, I have experienced every single one of them. FTD has not only effected my mothers body, it is effecting mine too.

Fortunately, I caught the shingles early and with proper medication it cleared up quickly. I had the residual pain for over six months, but I could deal with it. The high blood pressure was initially controlled with medication. Within six months I worked on other ways to deal with stress (such as exercising) and I am now medication free. The more active lifestyle has helped with the hair loss and weight gain. Sadness and grief are hard ones to get away from. Most of these feeling stems from missing my mother, the women she used to be.

I believe that the caregiver gets lost and forgotten when dealing with an ill person. It doesn’t really matter what the disease is, the caregiver is the one trying to keep things in line and take care of the ill patient. Often neglecting themselves in the process. I have fallen into this pattern and most do since if there is not consistent reliable help. So as I manage and take care of my Mom’s symptoms, I have to remember myself and take care of me.

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!