November 28, 2015
Puppies and dogs are wonderful companions. At first they can be a lot of work, but as the grow they become easier. Last year we added Rosie to our crew. Rosie is a mix of King Charles Cavalier and Poodle. Boy does she have a lot of energy. It took Rooney (our King Charles Cavalier and Cocker Spaniel mix) a little bit of time to adjust. Now they are inseparable.
The thing that amazes me about dogs is how sensitive they are. They easily pick up on humans emotions. I see it with Rooney and Rosie. When my mother is more anxious then usual, one of the dogs (usually Rooney) will sit next to her to calm her. Even Rosie in her puppy craziness will let my mom pet her. The power of touch can change a persons mood. Its so wonderful how therapy dogs go to hospitals and nursing homes. At my children’s colleges during finals and midterms puppies are brought on campus to help relieve students stress.
For the times that I’ve been frustrated with the dogs (maybe they got into the garbage) it quickly goes away when I see the positive effect on my Mom. She talks about my dogs more then my children. They bring her peace and comfort when her mind doesn’t. Nothing sweeter then puppy love.
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.
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.
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
Sometimes, having things to fight for gives you a purpose. Not that people want to spend their days and nights fighting but sometimes you’re just dont have a choice. I have friends and family fighting through various illnesses. Different types of cancers, different diseases. Each day they get up there’s a checklist that they go through to continue the fight. Medicine they take, treatments they receive on a daily, weekly basis, constant reminders that they are not well.
Alzheimer’s doesn’t give you that option. Through each day they’re dealing with it. There’s taking medicine to cope with symptoms. But no hope in a cure. Yes other diseases have that, but other diseases also have hope. Hope that there’s a future, hope for remission, hope that there’s a cure, hope that they’ll get better. My mother as well as countless others don’t have that hope.
I see my mother fight but in a different way. She fights to find the right words to say, fights to follow what’s going on conversations, fights for her independence. At some point she won’t know to fight. The course of the disease will just continue to go on. I truly wish we could fight against something tangible, I wish there was hope for my mother to get better. I think that has been one of the hardest things for her family to deal with. The knowledge that there is no getting better, there is no beating this disease there’s just living with it and dying from it. I’m not quite sure what’s worse knowing you have to live with something until he takes full control of you, or not knowing that you’re fighting against something that will take you. If there was some hope, we may find peace.
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.
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!
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.”
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
Here are some dementia related symptoms:
illness due to stress (such as shingles)
high blood pressure
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.