When my mom was diagnosed with dementia it took me months to tell my closest friends. I completely retreated from their lives; I saw them as little as possible saying that I wanted to spend time with my parents, and I ignored emails and phone calls.
Dementia is a very difficult diagnosis that comes with a lot of questions, and symptoms that are hard to talk about. In the eight years since her diagnosis, it has often been easier to talk to strangers about my mom than to family and friends; Strangers don’t ask many questions and you can retreat as soon as the conversation becomes too hard.
I eventually opened up, and my two best friends where easy to talk to, but I have run into well-meaning friends and family who instead of helping make conversations very uncomfortable. I don’t blame them, talking about disease is not easy for anyone.
This is my list of dos and dont’s when it comes to talking with a friend whose parent has been diagnosed with dementia, such as Alzheimer’s. I hope that if you know someone whose loved one is going through this diagnosis, it will help you help them.
1- Listen: Simple enough, but many people don’t do it. Don’t ask questions, just let your friend talk. It may be a short comment one day, or a long, drunken speech about the unfairness of life the next. Either way, let them talk when they need to and just listen and be there for them.
2- Don’t pry: A diagnosis of dementia comes with a lot of questions for everyone, many of which won’t be answered for a long time, and others with very difficult answers. Don’t ask too many questions, a simple “How is your parent doing?” goes a long way.
There are many sides to dementia, and some details are extremely private and humiliating for the patient. You may be curious to know if your friend’s parent recognizes them, or think that it will give you a sense of the seriousness of the disease if you know more detail, but you’ll be privy to those details only when your friend is ready to share. Don’t feel slighted if they don’t ever share those with you, your friend is probably guarding their parent’s privacy.
3- Don’t offer diagnosis: Many people assume that patients with dementia are in a state of ignorant bliss. This makes it easier for us to accept the diagnosis, but I know that my mom has feelings. As the disease has progressed, her cognitive skills have decreased, but I know that she has been frustrated, scared and angry as her symptoms have developed. Even today, at a very advanced stage, I know she knows things are not right with her.
4- Respect the disease: How many times have you joked about having Alzheimer’s because you forgot something? Do you joke the same way about breast cancer? You’ll be surprised the amount of people who make jokes about Alzheimer’s and dementia in front of me when they know my mom has the disease. It is hurtful, offensive, insensitive and ignorant. Please stop doing it.
5- Don’t judge: Decisions made by family members regarding a patient with dementia are always difficult, so whether your friend decides to leave their job and dedicate her life to caring for her parent, or the family decides to place the patient in a nursing home, don’t judge. You may do things differently if you were put in the situation, but each situation is different.
6- Act normal around your friend’s parent: It warms my heart when my husband and my friends hug and kiss my mom and talk to her as they always have. They accept my mom the way she is now, and more importantly, it gives her joy to see people smiling at her and caring about her.
7- Visit if you can: Being around someone with advanced dementia is hard, especially during some stages of the disease. However, visiting the patient and care giver gives them both a break in their day and shows that you care. My cousin and some good family friends visit my parents often; seeing them spend time with my family is wonderful.
8- Don’t pry: I know, I’ve said this before, but I cannot stress this enough. I have met people who want to know a lot of the gory details about someone else’s difficult time, or feel they need to know everything about the person’s situation. If you are a true friend you don’t need to know everything to support them. Accept what you know and help in the best way possible, which very likely is just being there for your friend.
9- Acknowledge the pain: Every day I miss the relationship I used to have with my mom, and it pains me to know she is living a very difficult existence, even though in our case she is cared for wonderfully at home. Acknowledge your friend’s suffering and accept that as she grieves she may become cynical, difficult or withdrawn. Invite her to go out, but don’t push too much or tell her she needs to do it. Whenever she is ready, she will be happy to go back to a social life.
10- Love your family: It is bittersweet for me to see friends with their moms, even harder to see my friend’s moms enjoy their grandchildren. I would love to have just one more day with my healthy mom, and I would love to be able to have the relationship you can have with yours, but I am glad you get to share your life with your parents, so enjoy it for those of us who can’t.