02 May Advice from other Alzheimer’s patients
Alzheimer’s symptoms can change depending on how the disease develops. However, when you are in the early stage of Alzheimer’s, you can develop skills and strategies to help with your memory and improve your quality of life.
A great way to learn what Alzheimer’s is and what are the best strategies for coping with it, is to ask other people with this disease who have been able to maintain their independence for as long as possible.
Below are some tips written by patients in the early stage of Alzheimer’s. Why not try them out and see which ones work for you?
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Advice from other Alzheimer’s patients on carrying out everyday tasks
Managing your medication
- Prepare your pillbox every night with tomorrow’s medicines
- Ask your loved ones to remind you about when to take your medication
- Set an alarm on your cell phone for when you should take your medication (try to take them close to mealtimes)
- After you take your medication, write a note on the container that says “do not take me” on the container, so you remember that you have already taken it.
Accepting changes in abilities
- Recognize that some tasks may become more difficult for you
- Try to accept that these changes are beyond your control
- Focus on the things you can still do.
Washing your hair
After washing your hair, move the shampoo and conditioner bottles to the other side of the bath or shower, so that you know that you have already completed this task.
Remembering phone numbers
Save contacts on your phone, with their telephone number, name, a key characteristic and a photo.
- Take advantage of technology! Use your computer, cell phone or tablet to write and send messages.
- Ask your loved ones to help you write things that you can then sign.
Try to do one task at a time. When you finish doing one task, then you can start with another one.
Advice about sticking to a routine or schedule from other patients with Alzheimer’s
Remembering tasks that you have to do during the day
Use a monthly calendar so you can plan your activities hour by hour and cross them off your list as you do them.
Planning your day in advance
- Every night, write down a to-do list for the following day
- Create and check over your schedule just before going to bed. Leave it close to your bed so that you can look at it as soon as you wake up
- Set an alarm to wake up early every day and make the most of your day.
- Contact the person or the organization, explain what happened and try to reschedule
- Reschedule appointments and dedicate the rest of your day to do activities that you enjoy.
Advice on driving from other patients with Alzheimer’s
Preparing yourself to stop driving
- Talk to your family about stopping driving and the alternative options you could explore
- Sit in the passenger seat to get used to not being the driver
- Take other means of transport or, eventually, ask a friend or family member to drive you to appointments.
Advice from other Alzheimer’s patients on coping with fatigue
If you feel very tired in the late afternoon or at the end of the day
- Use the first few hours of the morning to complete the tasks that require the most concentration and attention
- Schedule your day so that the most physically demanding activities take place in the morning
- Take a nap at the same time every day
- Try to get more sleep at night.
Relationship advice from other Alzheimer’s patients
Frustration with your partner and/or loved ones
Remember that they didn’t choose to be in this situation and that they also have their own fears and frustrations. Communicate with your loved ones and try to work together to better manage the situation.
Friends that are scared of the disease
Your real friends will stay by your side and support you. Invest your time and energy into those people that are authentic and that understand what Alzheimer’s means to you.
Feeling like other people are not aware of your feelings or how certain actions affect you
- Be open with people. Calmly tell them how you feel
- Ensure your loved ones and your carer are well-informed about Alzheimer’s and its impact
- Talk to the people around you about their actions and how they make you feel.
Feeling like your contributions to conversations are limited, ignored or not valued
Constant communication is essential. Talk to your loved ones, tell them you would like to be a part of conversations and, together, find a balance so that everyone has a chance to participate in the conversation.
Advice from other Alzheimer’s patients for managing stress
Difficulty completing tasks
- Distance yourself from difficult tasks or situations before your stress levels increase. If something is not working, leave it and try again later
- Step back and assess the situation. This may help you find a solution
- Stop doing stressful activities and do what you enjoy
- Do not put pressure on yourself. Evaluate the situation again, you might get better results after you take a proper break.
- Regular physical activity like gardening, yoga, or going for walks can help reduce stress
- Find your own form of meditation, such as praying or chanting.
Overstimulation in public places
- Go to the supermarket early or during the week, when it is not so busy
- Limit your field of vision as much as you can and block out background noise (earplugs may help)
Fear of losing your partner/carer or of being by yourself in public places
- When you leave public places, wear a shirt that is the same color as your partner or carer. If, at some point, you lose them, you can look at your own shirt and look for that color in the crowd
- Keep your cell phone with you at all times. This will allow you to stay in contact with your partner or carer and feel safer when you are by yourself in public places
- Set emergency contacts on your phone
- When you go out, keep a note of your contact information in your pocket or your bag.
Advice from other Alzheimer’s patients on dealing with the stigma surrounding the disease
Stigma of being treated differently
- Be patient and friendly. Remind others that you are still the same person
- Try not to internalize reactions from other people
- Tell your story and share what Alzheimer’s means to you. This can change the way other people see the disease and what they think of people with Alzheimer’s.
When people talk to your carer instead of talking directly to you
- Ask your carer to introduce you or include you in the conversation, this will show them that you are capable of participating
- Talk to people directly, that will encourage others to do the same to you.
Misconception that Alzheimer’s only occurs in elderly people
Tell people about early-onset Alzheimer’s.
Advice about emotional health from other Alzheimer’s patients
Sudden mood swings
- Be very aware of your negative responses
- Remember that your reaction is caused by your disease.
- Identify the reasons why you feel the way you do
- Seek out input from friends and allies
- Remember that guilt is often self-imposed.
Other aspects of Alzheimer’s
- Try to focus on what you do have and not on what you have lost
- Enjoy the moment.
You are not alone! Share this information with your friends to help them understand what you are going through and how to help. If you have any other advice for coping with Alzheimer’s, share it with us so that more people can learn from your experience.
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