Coping

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Someone I Love Has Alzheimer's Disease

Many teens experience the heartache of having a parent, grandparent or other loved one with Alzheimer's disease.

You may have many different feelings?sadness, anger, confusion, regret, fear. Remember these are all normal. Watching someone you love affected by this disease is hard. Adjusting to the changes and impact it has on your life is difficult too. It helps to learn about the disease. And it is important to talk to people you trust about what you are feeling.

You are not alone! There are an estimated five million people with Alzheimer's disease - and many of them have grandchildren, children or other relatives who are teenagers just like you. Through AFA Teens, you can chat with other teens who are experiencing similar emotions and challenges.

 

How Do I Talk to People with Alzheimer's Disease?
  • Always speak clearly: Alzheimer's disease does not cause deafness, but speaking too fast can be hard to understand.
  • Be patient if they forget your name. Don't test them: tell them your name and who you are if they look frustrated.
  • Always use a kind and gentle tone of voice.
  • Smiling and body language can be easily understood; be sure to smile often!
  • Approach them from the front
  • Address them by name to get their attention.
  • Keep eye contact.
  • Ask one question at a time.
  • Use hand gestures when instructions are not understood, such as a demonstration for hand washing.

 

How Can We Spend Time Together?
Doing activities together either at home or during a visit is a great way to connect with someone with Alzheimer's disease. Even though people with dementia have trouble remembering, they can still enjoy your company and some of their favorite things:
  • Read stories or the newspaper to them.
  • Play a simple game or do a puzzle.
  • Look through old photographs.
  • Listen to music. Some favorite tunes can prompt fond memories.
  • Reminisce about the past. People in the earlier stages of Alzheimer's disease have trouble remembering recent events but they can remember much of their past. Ask them about their first job, their wedding or what is was like when they were growing up.
  • Cook. Do not have the person with Alzheimer's disease handle sharp objects or the stove. Mixing ingredients or cleaning fruits and veggies are easy tasks. Baking something that creates a familiar scent, such as muffins or cookies, is comforting.
  • Fold laundry, sweep, clip coupons. These are all familiar tasks that can be enjoyable for someone with Alzheimer's disease. Always use caution with scissors.

In spending time together, you may find that you have to refold the clothing or that your loved one cannot remember all the rules of the game. This is okay. Smiling and laughing are emotions that can be recognized and help to make them, and you, feel good.

 

Why Don't They Remember My Name or What I Said Five Minutes Ago?
You may find that your loved one remembers more some times than other times during different stages of the disease or even during different parts of the day. You may have to repeat yourself. Try to be patient. People with Alzheimer's disease do not repeat questions on purpose; their brain does not store recent memory.

Often they may not recall names. Here is an example: You may find that your grandmother may call you by your mother's name. This is because you may look a lot like your mother when she was your age. You can either gently tell your grandmother your name or just be okay with the name she calls you. Correcting people with Alzheimer's disease can often make them feel bad or ashamed. As the disease worsens, your grandmother may not know she has a granddaughter and may be very confused if you were to tell her so. Again, this is because recent memories are forgotten, but the past, such as when she was a young woman raising her children, is clearer to her. Take these times to look at old photos, and have your grandmother share some of her stories from her past. This is often a wonderful way to spend quality time together. However, if this activity seems to make her upset or more confused, try something different.

 

I Live with Someone with Alzheimer's Disease
If your relative with Alzheimer's disease is living with you, try to remember that this can be difficult and challenging for all members of the family.
  • Be patient and understand that your loved one's forgetfulness and other behaviors are not done on purpose.
  • Other adults in your home who are caregivers feel overwhelmed too. Talk to them and show your support and understanding.
  • Have a family meeting. Talk about changes in the house. Work together to do what is right for your loved one and what is best for the entire family.
  • If you're feeling that you never get time for yourself, ask if certain days of the week can be for you to go out with friends, do after school activities, etc.
  • Everyone needs a break; arrange a schedule if your loved one cannot be home alone so that every family member has some time to themselves to rest.
  • Since people with Alzheimer's disease may wander, make sure your family knows about I.D. bracelets and tracking devices specifically for people with dementia.
  • If you are feeling embarrassed to have friends come over, click here. 0

 

What Will I Tell my Friends? Can Friends Still Come Over?
If your loved one with Alzheimer's disease lives with you, your life and routine most likely will be affected in some way. Remember, your friends should be people you can trust and confide in, and they should be supportive. If they seem reluctant to come over, it may be because they don't understand the disease and may be afraid. It does not mean that they don't like you anymore. Your friends may need you to educate them about the disease and assure them that your loved one is sick - but not contagious.

Talk with your parents about having your friends over. Can there be a part of the house that is for you and your friends to watch TV and hang out? There may be certain times of day they are better to have friends over than others. Encourage your friends to be patient and kind to your loved one. Never mock or make fun of the person with the disease. It is important for your loved one to maintain their self-respect and dignity.

 

What/Who Can Help Me?
Talk to your parents, guidance counselors, clergy, doctor or other healthcare professional, friends, siblings or others that you trust. Tell them how you feel and what is happening. It is important to express your feelings. Ask questions.

Sometimes family caregivers, like your parents, get very busy with caregiving responsibilities, and they may not realize what is happening with other family members. Talk to them and remember to be patient - this is hard for everyone involved.

Learn as much as you can about Alzheimer's disease: read books, review the information on the AFA Teens website and gather other information online or ask a professional about this disease

Join the AFA Teens message board and post messages to teens all over the country. Many of your peers probably have some of the same questions and feelings that you have.

Help your parents and other family members learn more from the information you find out. Remember, not everyone uses the Internet? You can be a big help to them.

 

Sometimes I Feel?
Like my Parents are Taking Everything out on Me!
Sometimes parents or other family members become so busy taking care of the person with Alzheimer's Disease that they may not realize how it is affecting you. Talk to them. Tell them how you feel. If, for example, you feel that you need more time to spend with your friends or you want some special time with Mom or Dad, discuss this with them.

Remember this is a difficult time for caregivers, too. Ask how you can help around the house to make everyone's lives easier. Just as AFA Teens encourages you to reach out for help, we want your parents to reach out too. Help them find support. Have them call AFA to speak to someone who can help -- 866.AFA.8484

 

Afraid of my Relative?
As Alzheimer's disease worsens, your loved one may behave in a way that is out of character for them... perhaps even strange. Some people may get up and wander around the house at night. Some people may lose the ability to talk and may make noises instead.

It is not unusual to feel afraid. These behaviors are all part of the disease, and while the behaviors seem startling, it is not a person's intention to be mean or frighten you. Again, talk to your parents or others about your fears.

 

Embarrassed to Have Friends Over
Sometimes an individual with Alzheimer's disease may do things that are bizarre or scary. His or her behavior has nothing to do with you; it is all part of the disease. But it is hard to not feel embarrassed.

Your friends should be people you trust. They may need you to teach them that your loved one has an illness and things they do are not on purpose. Ask your parents if a part of the home can be designated for you and your friends - a den or basement room, for example - to hang out in without interruption. There may be some times of day that are better to have friends over than others.

 

Angry

You may feel angry at your parents, the situation or your loved one with Alzheimer's disease. The situation can often feel unfair and hopeless. Do your best to not act out on this anger and instead talk to others. It is not healthy to keep your feelings inside. You can reach out to your parents, healthcare professionals, guidance counselors and others you trust, as well as experts at AFA. And you can chat with other teens in a similar

 

Sad

You may feel sad about your loved one and the changes you see in his or her mental and physical condition. Illness and death raise an overwhelming amount of feelings. Reach out to others for comfort and support. Make sure your parents know how difficult this is for you. Talk to teachers, guidance counselors and healthcare professionals, especially if you are having trouble concentrating at school or find yourself not wanting to do things you usually enjoy. Seek advice from AFA. Visit the message board and chat room to talk with other teens who might feel the same way you do. See how they cope.

 

Ignored
Being a family caregiver takes up a lot of time and can be very stressful. Many teens might feel like they are being ignored. Typically, caregivers, like your parents, need to spend a lot of time caring for the individual with Alzheimer's disease, taking them to doctors' appointments and helping them bathe, dress, etc. And this might mean that they do not have as much time to attend to your needs, help you with schoolwork or go with you to baseball games, plays and other events like you did before. This is not intentional.

Many times, parents are so distracted that they might not realize that you are feeling ignored. Also, many caregivers feel pressured to do so much in a limited amount of time. Talk with your parents, professionals and/or someone else you trust. It is important to express your feelings and not keep them bottled up. Seek advice from AFA. Chat with other teens who might feel the same way.

 

 

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