Caring for a family member with Alzheimer's is a challenge. Insert your own children who are still growing up and life can suddenly feel like an avalanche. There are no easy answers and in American culture there is not a norm to follow for care-giving in the home. When I was a teenager and my grandmother came to live with us, I didn't know anyone else who was caring for a grandparent in their home. So how can you get along with kids and an Alzheimer's grandparent all under one roof?
Communication
It is essential to talk to your kids A LOT from the start to finish of care-giving. As the adult, you make the decisions but your kids need you to talk with them about those decisions. Children and teenagers in the home need to feel valued in the process. Kids know that when something is important it gets hashed out. What to talk to them about? Change. Changes in schedules, routine, how the disease is presenting, how you all are feeling in relationship to Grandma who doesn't seem like Grandma anymore. Make a list to refer to every week and be sure you are talking to your kids about life with Grandma in your home.
Clear Responsibilities
When my grandmother moved in with us, it took a while to figure out what the heck we were all doing with an Alzheimer's patient in the house. It would have been helpful if all responsibilities surrounding her care would have been spelled out. Lines were crossed that looking back should not have been, especially for my youngest sister who was a child at the time. Be the adult. Remind yourself and your kids what each person is responsible for. Think of what is ok and what may not be ok or appropriate for everybody. This can clarify, for you as parents, what you can be doing to ensure your kids aren't stuck feeling responsible for duties that if you took time to consider, qualify as adults only.
Freedom to Be a Kid
Care-giving is serious stuff. All that seriousness in your house can bring everybody down and make your kids grow up too fast. Take time to let your kids be kids. Ask them what they want to do for fun and get a grandma-sitter so you can go out and spend time enjoying your family. Have you forgotten the normal things you did as a family before all the care-giving began? I bet your kids remember what it was like to feel free to be kids.
Paid to Help
I hated having Alzheimer's in our home. It's dark bony claws reached everywhere. One thing that helped me cope was getting paid to help with Grandma. That's sounds terrible but for a teenager it was an acknowledgment that it was work having her around. So when I was home with her while my parents were out I got paid for that time.
Gifts from Grandma
One time for Christmas my mom splurged and got us beautiful plaid pajamas from Eddie Bauer. We knew she had used some of Grandma's money to get us something special. Mom created a positive element about Grandma: she could give us gifts. Telling your kids "Grandma wants to give you this or Grandma is treating us all to ice cream" might be the ticket to shifting the negative feelings your kids may have toward a grandparent with Alzheimer's.
No Pretending
Is care-giving in your home fun for you as an adult? No, I don't think so. Don't try to put a positive spin on everything with your kids. It is OK for them to hate having Alzheimer's around. You don't want them to hate their own grandparent but it's ok to be mad about life dealing with a disease. Don't pretend that everything is just as it used to be but now we have Grandma here. Life is different. Disease is not fun. Be real with your kids. Will they learn to be compassionate, helpful, and more understanding of others? Yes. But you pretending this is all good will only make your kids feel like they can't show their own real feelings.
Counseling
If dealing with disease is hard for you, just think of how your child may be feeling. Finding a counselor for yourself and one for your child might be a good idea. A tricky part of care-giving in your home is that your kids know it is good to care for someone however, caring for someone is not what they want. There are so many conflicting emotions for everyone involved and a counselor could help you and your kids find healthy solutions for maintaining emotional balance.
Care-giving is an uphill battle most of the time. Just taking time to try to see life through your kids' eyes can go a long way. Try. You won't be perfect but that's ok. Trying counts.
