Finding Your Voice
or taking control of what is yours
Do you ever feel like you have lost your voice along with your loved one to dementia? Do you feel like you’re talking to yourself while trying to describe what you and your family want and need? Do you feel unseen and unheard?
I get it. Even those with knowledge and experience can be run over by those who feel they know what’s best or what you should do next (even when they don’t).
Let’s add some weight to your words:
Go to appointments prepared. This adds work for you on the front end, but buys you time and effectiveness later. Take note of specific issues and the details surrounding them. Don’t just say that you’re noticing increased sundowning symptoms, show data from the past few weeks regarding the time you start noticing, the behaviors you’re observing, and what’s working (or not). Don’t just say that you don’t feel like the care staff is listening to your concerns. Keep track of who you talked to, what their response was, and how your loved one responded (or didn’t).
Keep track of how many times you’ve had to ask the same question or for the same support and who you spoke to. I’ve found that being specific about when and how I’ve asked for and about things can help. For example, you ask for a prescription but hear nothing back. When you call again, stating that you spoke with Mary who transferred you to John who said the message would be conveyed to the doctor at this time on this day. It sounds like a lot, but holding professionals accountable will assist with having your voice heard.
Be a person of your word. Communication and respect go both ways. If you tell a professional that you are going to call someone or take care of something, do so. In the same way, provide the details of what you did and when. Even if the professional on the other side of your requests doesn’t follow through, you have the documentation to show that you are communicating well and holding up your end of the bargain.
Be honest. I’m a truth-teller. It really annoys people, but I’m a sucky liar so I avoid it at all costs (I’m still not sure if this is to my benefit or not, but it’s who I am). If you feel someone isn’t listening or doesn’t have your and your loved one’s best interest at heart, talk to them. Be respectful but challenge their apparent lack of care. Listen to their response and be prepared to stand up for yourself and your loved one. Use the data you’ve collected to support your statements. Responding from an emotional place (while completely valid) can diminish our standing in the eyes of professionals. I can’t tell you how many times I’ve heard someone say “they’re just difficult”, “they’re just over-emotional”, or “they don’t really know what they want”. By taking a moment to collect your thoughts, showing that you’ve done your research, and speaking calmly (even when you want to throttle someone) can help you be heard.
Don’t be afraid to go over their head. Not to sound like a “Karen” here, but sometimes you need to speak to their manager. If you consistently feel like you are being dismissed or marginalized by the professionals who are intended to help and support you, you might need to take your concerns higher. Don’t abuse this as you’ll most likely be dismissed as a PITA (pain in the ass), but utilizing it effectively can help you make great strides in your loved one’s care.
If you feel that all of your attempts at effective communication have failed, know that you always have the option to leave. I get it. You want the best for your loved one. This doctor, this therapist, this community, this medication is the best- but it makes you feel the worst. When you’ve had enough, explore your options. You don’t deserve to feel less than. You don’t deserve to feel like a PITA. You don’t deserve to be abused by those who are supposed to be helping and supporting you. Take a few minutes to look at the situation logically and determine if you are feeling emotional about this or if there are facts to back it up. By keeping all of this information you’ll know if you are being heard or if you’re just getting lip service. You’ll know if you and your loved one actually matter to them or if you’re both just numbers in their list of things they have to do.
Now that I’ve said all of this out loud, I know that none of it’s easy. Luckily there are planners out there that you can keep somewhere handy where you can document all of this in one place. You can even record all of it on your phone so you can pull it up in the moment and document what you need. Some programs will even put all of that data in spreadsheets or graphs (if you’re into that kind of thing).
Know that I hear you. I hear all of it. If it were up to me, we’d all be heard and supported and feel like we can do this shitty journey of dementia without having to struggle with people who don’t care the way we want. I’m not talking continuous kumbaya and rainbows and Skittles, but that genuine care and support that only those who have our best interests at heart can provide. In the meantime, all we can do is support each other, document our interactions to back up what we need, and keep on keeping on.