Early Stage Center | Fall 2016 Newsletter

Strategies for Living with Early Stage Memory Loss

Participants were eager to engage in a dialogue with one another that was peer-driven, rather than relying heavily on the perspective of professional facilitators. They wanted to strategize with one another about practical approaches to daily challenges, and also to share the results of the discussion with other people facing a dementia diagnosis.

The comments below were compiled by Early Stage Center staff using words directly from the workshop conversations. Participants agreed that each person needs to develop a system that builds on his or her own strengths, accommodates for changes in memory and functioning, and honors individual preference. We hope that these suggestions can be a starting point for others to discover which strategies are right for them.

To learn more about our Early Stage Center programs, or to get support with early stage issues, please call our 24-hour Helpline at 646-744-2900.

Talking With My Doctor About My Diagnosis

• "I bring a family member or friend with me to appointments. Their experience is objective, mine is subjective."
• "Follow-up testing can be overwhelming and lengthy, and I come out feeling that I’m worse than I thought I was. I need to find ways to combat the anxiety and negative emotions associated with being tested that can make it more difficult, like planning something enjoyable afterwards."
• "If possible, I prepare for testing by practicing strategies for things like counting backwards by seven."
• "I step away from the conversation and let my care partner talk to the doctor if it becomes too much for me to handle emotionally."
• "I keep track of potential side effects from my Alzheimer’s medications and report them to the doctor. I also tell the doctor if I’m taking any additional vitamins or supplements."
• "I try to be realistic about my expectations of what the Alzheimer’s medications can do. However, I also enrolled in a clinical trial so that I can be a part of something that helps others, and hopefully myself too. Some trials have new medications that are being tested and others test existing medications for new purposes."

Talking With Friends And Family About My Diagnosis

• “I realize that it is helpful when people ask about my experience, but I know that it can alienate some people who are uncomfortable with the subject. I ask for help as needed."
• "I disclose my condition as needed, saying directly: ‘I have Alzheimer’s.’ or ‘I have MCI.’ When I do, I find that people respond in a supportive way."
• "People sometimes minimize my experience by telling me ‘I forget things all the time too.’ I have to remind them that ‘memory issues’ and Alzheimer’s are very different, and that there is variation in every person’s experience."
• "Be prepared that some people are ignorant about the diagnosis and what it means to be early stage. Sometimes I choose to educate people about my condition so they understand my needs, even though this can be exhausting. But, I don’t HAVE to educate people if I don’t want to."

Managing My Medications

• "I sometimes have difficulty remembering to take my medication, or remembering if I have already taken it. So, I use a plastic pill box labeled with the days of the week. Some pill boxes have a knob on top that you can push over after the pill has been taken, and others are automatic and have timers. You can find them at www.alzstore.com."
• "I keep the medications accessible, visible, and always in the same place."
• "I put reminder notes in common places, like the bathroom mirror, kitchen table, or a calendar."
• "My care partner periodically checks to make sure my pills are being taken correctly. It’s important to me to have a system in place so that the burden on her is reduced."

Recalling The Location Of Items

• “I try to put items, especially important things like eyeglasses and keys, in the same place every time. It’s like a ritual I've developed."
• “Sometimes I can see something with my eyes just fine, but it doesn’t register in my brain what the object is. If I can’t find something, I go take a walk, come back, and I can often find it.”
  “Frustration can absolutely get in the way of finding something, so I have to relax.”
• “All my similar items are in the same area: all my shoes in one closet, all my underwear in one drawer, etc., so that I don’t lose time looking in multiple places.”
• “I try to find it on my own first, and then if needed I ask for help.”

Recalling Important Information

• “I write reminder notes listing what I need before I leave home. I have to leave the notes in a prominent place so that I remember to read them. If I have something on my schedule for the day, I put a note on the table next to my bed so I will see it when I wake up.”
• “I put everything on one calendar, rather than different notebooks or calendars scattered everywhere.”
• “I carry a large bag that holds everything I need.”
• “I always carry a notepad and pen with me.”
• “I use a smartphone for notes, reminders, time, maps, and directions. The Siri feature on my iPhone has been helpful so that
• I can use voice recognition instead of typing on those tiny keyboards. And the phone camera is helpful when I want to remember something and can take a picture of it.”

Doing Household Chores

• “I have hired somebody to help around the house.”
• “I do different chores on different days: Monday is for floors, Tuesday is for laundry, etc. Routine has helped me make sure I get everything done.”
• “I make sure to wash dishes right after a meal or I will forget to do them.”
• “I give myself permission to ignore a mess as needed and just close the door to that room. Self-care is my number one priority.”
• “As soon as I run out of an item in the kitchen, I write
  it down on a shopping list that is always kept in the
  same place.”

Managing Finances

• “I’m always cautious because I know that I’m at risk for being financially exploited. I have alerts set up on my accounts to detect fraudulent activity.”
• “I try to be aware of any compulsive behaviors with spending that are associated with this disease.”
• “I set up automatic bill payments so that I don’t have to write checks every month.”
• “Financial decisions have become more difficult. I try to make big decisions in collaboration with my care partner.”
• “If I get a notice about a free trial membership to something, I use caution because I may forget to cancel it and then get charged a fee once the trial membership expires."

Motivating Myself And Staying Active

• “Motivation becomes difficult when everything I do requires a lot of energy, focus, and effort. Sometimes I have to remind myself that it’s ok to take breaks.”
  “I make time for exercise, even if it’s just a walk around the block.”
• “I try to follow a healthy diet. I also make sure to drink a lot of water and stay hydrated, if not then I tend to get more confused.”
• “My support systems are many: family and friends, like-minded people, faith-based communities, and groups at the Early Stage Center!”
• “Photography is a good tool to help me engage and also to take a break from trying to engage.”
• “I get a lot of pleasure from gardening and watching something grow.”
• “I have found meditation to be very helpful.”
• “I pursue hobbies like art, listening to music, auditing college classes, and connect2culture® museum tours for people with memory loss."
• "I tend to sleep in, so I schedule things later in the day if possible."
• "The senior center near my house has been fabulous in helping me interact with lots of interesting people and activities."

Managing Social Situations

• “It takes extra effort now to attend social gatherings and stay engaged, but I think the effort is worthwhile. The first step is to show up!"

• “I let family and friends know how I’m doing so they’ll know how to support me.”

• “In a conversation, I can’t always wait for the best timing to say what I want to say, or I’ll forget it. I sometimes need to just get it out there and speak my mind, even if it’s not the best timing.”

• "When I have difficulty recalling names, I...

• write the name down.

• ask the person to repeat: 'Tell me your name again…?'

• repeat the name to myself.

• have familiar names written on a card in my wallet and study it.

• try to be vague but still social: 'Hi how are you? I haven’t seen you in awhile!'

• say 'I have trouble with names.'

• don’t stress about it – I’ll just be myself and if they care I

• don’t want to be friends with them anyway.

• use pictures on my smartphone to associate faces with names.

• make associations based on the sound of someone’s name, personality, or appearance to help me remember the name."

Giving Advice To Others Living With A Diagnosis

• "Be brave!"
• "Reframe your situation."
• "Build on your strengths."
• "Use humor and see the humor in it."
• "Recognize that once you have Alzheimer’s, you’re in a new phase of your life."
• "Understand that society needs to change in how it responds to this diagnosis."
• "Try to stay as independent as possible. The more times I do something the right way, the better I feel."
• "Leave a legacy to allow other people to understand who you are and what you’re going through."
• "Acceptance means not giving up, and then knowing when to give up."

Staying Safe In My Home

• “I find my sense of smell and taste has changed, so I can’t always tell when food in the fridge has gone bad (and can’t remember when it was prepared). I have a friend or family member help me dispose of spoiled food as needed.”
• “I routinely check the stove to ensure it is off and that the gas is turned off. Any day may be the day when I don’t turn off the burners. Everyone’s path with this disease is different, so I make sure to take precautions now.”
• “I always use a timer when cooking, otherwise I end up with a bunch of burned pots!”
• “I make sure that safety alarms are up to date: smoke detectors, as well as carbon monoxide and natural gas detectors.”

Staying Safe When Getting From Place To Place

• “I had to retire from driving because of my Alzheimer’s. I had an accident and thank goodness nobody was hurt.”
• “I’ve noticed changes in attention, response time, and physical ability that would make driving unsafe. I don’t want the liability risk of driving with Alzheimer’s.”
• “When walking, I take the same route each time. I write down my route in advance and I use landmarks to orient myself.”
• “Even in a taxi, I try to know the approximate route. One time I got in the wrong car service and ended up in a different borough before I noticed it!”
• “On the bus, I ask the driver to make sure it will stop near where I need to get off.”
• “On the subway, I write down what stop I’m going to. Even if I’m traveling with someone else, I do the same thing in case we get separated in the subway.”
• “If I get lost, I stop to take a breather to regroup and calm down. Above all, I have to be patient with myself. If needed, I ask for directions or call someone for assistance.”
• “I wear a MedicAlert® NYC identification bracelet.”

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