by Carolyn Lukert, MBA, CGCM,
PAC Consultant and Mentor
Dear PAC Consultant,
I am a 54 year old physically healthy woman who has recently been diagnosed with young-onset dementia. I am told it is probably Alzheimers, based on the symptoms that are most prominent. To give you some background, over the last year or so, I have been getting lost in places that I have been around for many years (I still live in the same town where I grew up). And, my memory is just horrible. I forget I have had conversations with people – like, I never had the conversation at all. It’s not that I just can’t recall the fine details. I can’t remember having had the conversation at all. It is so strange. My friends and family remind me that this is occurring pretty frequently, yet I have no awareness whatsoever. But there are other things that I can still do well. I can read and look up things on my computer. And, I take a lot of notes, so when my memory fails me – which it does often – I can at least refer back to what I have written. Unfortunately, though, I can no longer work. Ironically, I am a nurse, and much of my job relies on the ability to remember what I have done, and who I have talked with – and I simply can’t keep up or keep track of everything. Now, it is becoming dangerous for others, not just for me. Needless to say, I am scared to death. I mean, in some ways, I am relieved that I finally got a diagnosis as it explains so many things that have been happening to me. But I also have heard and seen so many distressing examples of what happens to people when they get dementia. I don’t know what to do next. My neurologist pretty much just delivered the news and then told me to get my affairs in order. It’s like her job was just to get to a proper diagnosis and then she was done. And, my family seems just as scared as I am. I really don’t know where to turn, and neither do they. Can you help me, and my family?
Lost in Louisiana
Dear Lost in Louisiana,
First, let me say how brave you are for writing in and sharing your diagnosis, and your fears. I am so sorry this has unfolded the way it has. How incredibly difficult for you and your family. It does sound very scary. And the symptoms you are experiencing – not being able to hold on to new information and inability to find your way around familiar locations - how disconcerting that must be.
I am wondering about a couple of things …
Having a support network is incredibly important as you live your life with dementia. That network can be made up of many different people – family, friends, faith community, and medical providers, just to name a few. And, the more knowledgeable they are about dementia and supportive practices, the better. So, when you think about those who are (or could be) in your support network, does anyone stand out as being willing to learn more? If so, perhaps we could help connect them with some resources that could help.
Also, there is a growing number of people living with dementia who, like you, have a young-onset diagnosis and want to continue to live a good life. Connecting with them to share strategies about living life after diagnosis might be something to consider. Since you mentioned you like working on your computer, here are links to a few groups:
Additionally, Positive Approach to Care is now offering a series of webinars specifically for people living with dementia, so perhaps that might be something you would like to try. Click here for more information:
Finally, we are available to help you explore and choose your next step. To set up a phone conversation to do so, simply send an email to firstname.lastname@example.org and let us know how best to reach you. We will respond accordingly!
Thanks so much for reaching out, and we look forward to continuing the conversation.