October 13, 2014
Yesterday I was in the supermarket. There is this great machine by the pharmacy that not only takes your blood pressure, but weight, pulse and figures out your BMI. I try and stop there at least once a month since I was diagnosed with high blood pressure last year. I am now off blood pressure medication and hope by monitoring it, I will stay off. The machine is tucked off in a corner so I don’t mind using it. Except for yesterday. Yesterday I did not like using it.
It takes a few minutes to log in into the machine and get set up to start going. Just as I started to take my blood pressure, a man came up beside me waiting for the machine. He stood about three feet from me. Too close. He was staring at the screen. The screen with my information on it. As the blood pressure cuff tightened around my arm, I could feel my pressure rising. I turned and looked at him. He stayed put. My pressure rose and rose. The machine had to stop and start again since it could not get a proper reading. Finally my blood pressure was displayed, displayed in red numbers, not a good sign. Next to be measured was my weight. Before I hit the “next” button, I turned and looked at the man. This time the look I gave him was a “back of jack” look. Yet he stayed put.
I do not share my weight with anyone but my doctor (even then I try to get out of stepping on the scale). I certainly do not want to share it with this person. With extreme aggravation, I hit the “log off” button. I refuse to go any further with a “spy” peering over my shoulder. I abruptly stood up, turned to the man and said “Do you have any boundaries? Its rude to be standing here looking at the screen while someone is using it.” I didn’t wait for a response, I just stormed out and went home.
I realize not everyone knows boundaries. I deal with it everyday with my Mom. She says inappropriate things, does things she shouldn’t, its very frustrating. People push boundaries all the time. You’ve met them. The person who will ask you what your salary is, the woman who feels she has the right to touch your pregnant belly, the Aunt who tells you you’re raising your children wrong, the man who stands in your personal space. Some people just don’t get boundaries. It really is a skill. One skill that children (and some adults) need to learn, one skill that people with dementia and alzheimer’s lose.
There are questions that we should ask ourselves in terms of boundaries. How will pushing boundaries make me feel? How will it make others feel? Will good or bad come out of it? Do I know what I really want? If someone pushes me, do I need to respond? What are my boundaries? That question is really important- what are my boundaries? I have found with my mother, I may have to let down my guard or even better, just laugh when she crosses a boundary. When she exclaims “oh my!” after she looks at my weight on the scale theres nothing left to do but laugh. She’s may be saying what I am thinking!
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
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.
I have already shot, and have bookings through the fall for holiday portraits. Call today to reserve your spot as they are booking up fast (especially the weekends).
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.
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!
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 ; )
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.
I was recently reminded of a time years ago when my kids put me in an uncomfortable position. I was at the hospital for my pre-op testing and paperwork a week before my third was about to be born. When we arrived at the hospital the administrative offices were under construction so there were these small makeshift cubicles instead.
When it was my turn to go, a woman came and brought myself, my four-year old and almost three-year old toddled in behind me. We sat down in the confined space and the representative started to ask me questions. She turned to her computer to enter the answers. Her computer was on a side desk, so she turned and gave us her full face profile. Oh Boy!
My son then says (as loud as possible), “Mommy, that lady has a really big nose!” Then it starts, the sweating. I can feel my body perspiring, my heart starts racing. What can I do? What can I say?!?! I’m trapped in this 5 x 5 cubicle and I can’t leave! There is just silence from the representative, silence and a scowl. Then as if she knew, my daughter pipes in “Mommy, you have a big nose too!” Aaaahhhhh! Thank you I think to myself. “Yes I do have a big nose, big people have big noses and little people like children have little noses” I say.
My son was just stating the obvious. The woman really did have a very big nose. To him at four years old, it was just an observation, no ill intent. To the adult hearing it, it was an insult. I assume the representative was not thinking “kids will be kids”, since she soon stated that she had to go to the printer and get paperwork. Well she left the three of us in that tiny cubicle for over a half an hour! Unless she had to take a bus to get to the printer, I am pretty sure that this was her passive aggressive way of sticking it to me.
When my grandmother had dementia and alzheimer’s, she would often blurt out things. She told one person they had a fat belly, another she said looked stupid in their glasses. She even laughed at someone’s outfit. These were all young child like statements. They are the statements made before your child learns censorship (though some never do). My mother now is making her own observations. She told my daughter not to cut her hair because she won’t look good. (she was on her way to the hair salon to get eight inches cut off). She also told me I shouldn’t be wearing “those” shorts , they do not make me look nice. So now when my Mom makes these “observations”, I think back to that uncomfortable position in that cubicle. Then I say to myself “kids will be kids”.
“You are no longer a guest here”, I said. Yes, I uttered those words to my sister-in-law when she was visiting. Unbelievable, right? But wait, hear me out, there is more to the story. Don’t judge me just yet. I was almost nine months pregnant with my second child. My first child was 15 months old and full of energy. It was the hot summer time. I was tired, so very tired. There are plenty of reasons why I said it.
My sister in law had come to visit and stay with us. She was very excited to come spend time with her first nephew. She played with him, feed him, just enjoyed the time. The problem was that I had a routine and she wasn’t fitting into my schedule. So when my son woke up at 6am one morning, and she took him out of his crib, it messed up my routine. Normally he would wake up, I would give him milk and he would fall back to sleep for another two and a half hours. This morning she took him out of his crib and decided to give him breakfast. Well, twenty minutes later he was falling asleep at the table and I was wide awake, shy two hours of sleep. Then there were the dishes she left in the sink. Or her shoes that I tripped over. Finally I exploded! “That’s it! You are no longer a guest here! After three days you must take care of yourself!” It was day four, and I somehow made up this ridiculous three day rule. After my sister in law got over the shock of my new rule, she put her dishes away, replaced the toliet paper roll and on and on. She was the perfect guest for an overtired pregnant woman. When her husband came the next day to stay, she told him he was not a guest. I laughed and said, “give him three days, he just got here.”
This silly rule has made me a better guest a peoples homes. I am more mindful that I am not on vacation and tend to work harder then I would at my own home. Its even more work with my four kids, but I understand how hard it is to entertain guests in your home. A year later, when I and my family stayed at my sister in laws home while she was almost nine months pregnant I clearly remembered how I felt on her visit. A few days into my visit with her, she said “I get it now.” When it was time to leave, she also told me I was a good guest. (The best guest stays at a hotel in my opinion) Now twenty years later we laugh about the three day rule, but I still follow it.