Learning about a dementia diagnosis or watching someone you love change as their illness progresses is hard. There is no sugar-coating this. It is natural to struggle when someone you love is suffering. And at the same time, it is important to remember:

• You are not alone; many other people are going through the same exact thing as you and there is support out there.

• Their illness, feelings, and behaviors are not your fault.

Anxiety about helping to care for the elder who is suffering from dementia is very common. When a teen is being asked to help a caregiver, it can feel very uncomfortable or worry that they might do something wrong. When my parents tried to prepare me to visit my grandmother, they would suggest things I could do to be helpful. At times, this made me feel like my actions had a major impact on my grandmother’s wellbeing. It was a lot of pressure. This is a completely normal feeling and it will start to go away as time goes on.

You may feel jealous of peers’ or friends' grandparents who are in better shape than yours.

Even though it can sometimes feel like you're being selfish, these are totally normal feelings that come with the challenges you and your family are facing. Just remember that even though your friends’ grandparents might not be going through this, there are many struggling kids, teens, and families going through the same things that you are.

If your grandparent moves to a memory care facility, it can be hard for them and for you. You may experience one or more of the following:

• It’s not the home you may be used to.

• It may smell, look, and just feel different.

• There may be a lot of rules and you may even feel trapped.

• There may be a lot of people around, many of whom are struggling. They may do or say things that seem inappropriate or make you feel uncomfortable.

It can be hard for some to be with a grandparent who no longer reflects your image of who they used to be. You may even feel guilty about this, especially if your siblings have a different reaction. This guilt may stem in part from things your parents say, like “Your grandma has done so much for you; you need to go see her,” or “If you love your grandpa so much then why don’t you want to see him?” Even if they are trying to be helpful, these comments may make you feel bad about yourself. It can be helpful to explain to your parents why you are reluctant to visit your grandparent. Check out our visiting toolkit for more support.

It can be very hard for a person with dementia to adjust to their new situation. They are not used to living with strangers, so as a result, they can try to isolate themselves in their room. This can make them seem withdrawn to begin with. It’s helpful to also remember that dementia affects emotional regulations, which can lead to patients seeming rude or unfiltered. Dementia can also cause impulsiveness, and of course, your loved one may struggle at times to remember who you are, or details like the date/year. You have a right to feel comfortable. You can leave or talk to a staff member about what’s going on at any time.

Spending time taking care of yourself is not at all selfish, and in fact, very important. Whether it’s taking a bath, reading a book, watching a show or working out – doing what makes you happy helps you show up as your best self.

Come up with a plan for dedicated, predictable, uninterrupted time between parent and child (e.g. ice cream on Sunday nights). This consistency between the specific child and adult helps the child realize that even though it may look like the parent is only focused on the grandparent, they are also completely focused on you and your needs.

Use our website, whatsapp group, or other communities to talk about your feelings and experiences. This is most helpful with other people who can directly relate, but it could also be with your friend group, or a counselor or therapist.