What aspects of your loved one’s dementia is most challenging for you? How are you relating to the changes that are occurring? Are you questioning why the lucidity comes and goes? When short term memory is showing significant loss the brain has been in decline for many years. Is it understanding what dementia is? So often doctor’s give a blanket diagnosis, but offer no help in how to deal with the disease. Did they tell you dementia is not a disease? Did you know dementia does not mean memory loss? Did they tell you your actions will have an impact on your loved one? Did they tell you that you set the tone for each and every encounter? No? Well I will! You want to know why I will tell you? BECAUSE I CARE!
One reason we encounter what I have named “the infamous trigger meter” is because we feel the magnitude of our underlying resistance to this diagnosis. We try to hold on for dear life to that which is slipping through our hands. We have lacked the manual that says do a self introspection and examine why we lack patience, why this world has changed to a new paradigm of needing information johnny on the spot and solutions yesterday. Alzheimer’s disease (AD) moves us in directions we don’t want to go.
The trigger meter goes from 1-10. One is low – Ten is high. Here’s how it works, play along. You try to leave the house, your loved one starts to panic. Did you tell them a few times you were leaving soon? Trigger meter 1. You start getting ready to go and ask if there’s anything they need while you’re gone. Trigger meter 2. I’ll only be gone a little while! Trigger meter 3. The person with AD loses their executive functioning of judgment and reasoning, and hypothetical scenarios no longer exist. Tell me you’re leaving – I have no point of reference any more. All that develops is anxiety, not understanding. Tell me someone is coming over to stay with me and now I am at trigger 7. Have that person show up and they don’t know how to work with me, and we have no activity planned and I will shoot to a full blown 10! What if we tried getting ready to go get our hair cut, QUIETLY. Trigger goes down 7. When we are ready to go we say, “I’ll be back soon; going to get my hair cut !” Trigger meter 4. What if we have turned on a movie or made lunch for them before our big exit announcement. Trigger meter 2. When we come back, we come in the house the way we did before they were faced with the AD diagnosis and say “Hi! I’m home!” They say, “Did you have a nice time?” Trigger meter 0! People often tell me that they can never leave the house any more. It’s too hard and there is too much anxiety. Ask your self what you have brought to the table. Did you create this new separation anxiety by giving too many details? Did you ask someone to come and stay with your loved one, but didn’t know how to set them up to be successful on the visit? Make a list of your loved ones favorite activities like bowling, putting a golf ball, walking…maybe with a dog, watching a movie, going out for coffee. Give one of these ideas ahead of time to the volunteer/friend as an activity to do with your loved one, after all they have come to provide respite for you so you can enjoy your time away. Teach them to speak calmly and ask yes or no questions. Give them a chance for success.
What else causes triggers? The trigger meter goes up when shadows come in the room at certain times of the day. The trigger meter rises when a room is too noisy and sometimes when a room is too quiet. It goes down when we recognize this. The trigger meter rises when we have large family gathering and the person with AD doesn’t recognize faces. The trigger meter goes down when thoughtful family members and friends wear name tags to help eliminate confusion and guess work. The trigger meter goes up when the person with AD asks a question twice because they didn’t remember asking it the first time and you seem mad, and they don’t know why. The trigger meter goes down when you simply answer it like you never heard it before. The trigger meter goes up when you ask open ended questions to a person losing their cognitive ability and skills. The trigger meter goes down when you ask yes or no questions and don’t make them struggle. The trigger meter goes up when they are bored. The trigger meter goes down when they are engaged. The trigger meter goes to 10 when you talk around and about them. It drops to 1 when you show them compassion and talk to them and ask them how they feel.
As family caregivers we see what our loved one has lost. The person with Alzheimer’s type dementia wants to scream, “please help me achieve what I can still do.” You set the tone for each and every encounter. If you are calm you will be rewarded with contentment. If you smile and laugh, they will too. If you are filled with anxiety…well you get it now. You can control the emotional rollercoaster known as the trigger meter. It is an art, it is something you can learn. It takes practice but the moments of joy it creates are priceless.
Please submit your thoughts or questions on how triggers are created and managed by responding to this Summit Blog. I will reply to 3-5 questions on my Wednesday, November 1,2017 LIVE FaceBook Chat at 7:30 PM MTN time, 8:30 central, 9:30 Eastern and 6:30 Pacific
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Jill Lorentz is the President and Owner of Summit Resilience Training, Dementia Education for Caregivers. She is also the Host of KEZW Cruisin’1430am Dementia Resilience with Jill Lorentz which airs Sunday’s 10:00-10:30 am MST. Jill teaches families and professionals strategies and techniques which help them to feel understood and allows them to relieve stress so they can enjoy their lives while caregiving.
I have recently been diagnosed with “early onset Alzheimer’s.” WOW! What a shocking revelation! However, I have been chosen to be in a clinical trial and I have been given a “blind” injection once a month and a Brain Scan periodically. Perhaps I will be one of the lucky ones to get the “real thing!” However, I am going to continue with a positive attitude and encouraging words from friends and family
Hi Phil, I am sorry for the diagnosis but you seem very upbeat and I hope things go well for you. Being in a clinical trial is exciting and scary I will pray you get the medication. If you don’t mind me asking, what do you want people to know about your diagnosis? For example, “don’t act like I can’t do anything right anymore, or I am grateful for my support system?”
Hi, Jill, Every evening when my husband prepares dinner, my Mom starts going into the kitchen to see what’s going on. She’ll get close to the stove , move hot pans, touch the food or crowd my husband. I know that she’s just curious. But she’s at risk of burning herself or my husband. Plus my husband has always preferred that we stay out of the kitchen when he’s cooking. So, after my husband tells her what he’s cooking and shows her the food, he wants her kept out. So my job becomes Sergeant at Arms. Mom continues to try to get in kitchen until dinner is on the table. I physically stand between her and the kitchen often having to restrain her and get hit, slapped, punched or pinched. It’s crazy for her and us. But I would be Sick if she got burned. Distractions don’t work much anymore. I don’t know how to calm this situation down. Help!