When Your Parent(s) Get Dementia
When Your Parent(s) Get Dementia
I struggled over whether or not to even write this article as I am far from an expert on the topic. Then I realized I don't have to be an expert. As a person who has a parent who has dementia I simply wish to share my story and experience in the hopes that should randomness painstakingly pay you a visit in this regard, there are some pieces of helpful information I can impart.
Three years ago my mom started to show signs of cognitive decline. At 71 years of age I simply assumed that it was just the routine stuff that happens when one gets older. I can't tell you how many times I've caught myself looking for my cell phone while I was talking on it. The furthest thing from my mind was dementia. I can't say for sure if I was in denial at this point but I definitely was as her cognitive decline accelerated.
Dementia tends to be difficult to diagnose because it's mostly behavioral and when it is diagnosed there is usually no mistaking the signs at that point. Once my mom started to run simulations that bordered on delusional it was very obvious she had dementia. Prepare yourself for the worst and hope for the best at the earliest signs. My mom would be 'ok' for extended periods of time then have these moments where she would fall off a cliff, cognitively speaking.
As a native Korean speaker she spoke good enough English having been in the United States for over forty years but she hit a point where she would only speak her native tongue. Confusion and simulation aside she was still more than manageable, at least for me. My sister is my mom's primary caretaker as they live together and her experiences with my mom's behavior is vastly different from mine as I only take her on the weekends and it is not uncommon for dementia patients to vary their behavior with different people.
Out of the clear blue my mom started to wander, mostly looking for her mom who passed away twenty five years ago. I took to doing things on the fly as things progressed with my mom, largely because I was simply in denial that things were getting as bad as they were.
Watching a loved one experience dementia is nature's cruelest joke. The person tends to know something is off with them in the beginning and they will look to isolate themselves from their social circles. My mom stopped going to church for a year and if you know my mom the church has been her life for the past forty years so that was a telltale sign something was off.
At the first signs of what may or may not be dementia, find the best neurologist that you can find. Get all the necessary images taken and build a relationship with this physician. Put a face to the name so that you get premium attention.
Start contingency plans well ahead of time. Everyone's situation is different and dementia is an incredibly taxing illness emotionally, psychologically, physically, and financially.
Get a medic alert tag and a gps device right away even if there doesn't seem to be a need for it. I can't recommend the dynotag medic alert tag enough. You can put tons of information on it that gets accessed by a QR reader that all emergency personnel have.
I got my mom the Trax +3G gps device because it was one of the only brands that offered a wrist strap accessory. The battery life is bad, only four hours or so but it is accurate and the phone app used for tracking is decent.
Get everything with Medicaid squared away ASAP. They are a nightmare to deal with so this might be the very first thing to do at the first signs of dementia. Whatever your loved ones financial situation is, get it sorted out. Hire an elder care attorney if necessary, it will be worth it. I no doubt lost three to five years of my life dealing with the stress of Medicaid with their conflict free evaluations, their timelines, their different account types, the insurance carrier evaluations, home care appointments and the list goes on. I am actually going to be writing a free Ebook on this process specific to New York but I am sure the process is similar everywhere it is crazy.
Take care of yourself. You are not worth anything to anyone if you drive yourself into the ground. If you are anything like me you were raised to be the fireman. The one everyone calls and relies on to put out the fires but unless you are at optimal strength, you really can't help anyone. Make sure you eat right, get enough sleep, talk to your support team, write down your feelings, process things out. Dementia is one of those incredibly exhausting illnesses and it's a marathon.
There will be incredibly good things that will come out of the experience if you so choose. I am not a church person but I take my mom to her church every Sunday and sit with her through a Korean speaking service of which I understand nothing, but it's my pleasure to do because I see how it positively impacts her. I've spent more quality time with my mom over these past three years than at any other point and time in my life culminating with having her on the weekends this past year and continuing and it is such a pleasure to spend this time with her even when I have to have conversations with her about her other son Elliot.
My experience with my mom's illness has taught me to be more present in my life and to live with more gratitude. I've had my mom for forty-seven years and counting which is a lot more time than many people I know have had with their mothers. I am of the mindset that the only things that matter in life are our health and wellness and the help we get, and give, loved ones in their greatest time of need, everything else is just noise. I hope at least some of these pointers make it easier for you to deal with the challenges of caring and dealing with a loved one who has dementia should you have to face it, hopefully you won't.
I struggled over whether or not to even write this article as I am far from an expert on the topic. Then I realized I don't have to be an expert. As a person who has a parent who has dementia I simply wish to share my story and experience in the hopes that should randomness painstakingly pay you a visit in this regard, there are some pieces of helpful information I can impart.
Three years ago my mom started to show signs of cognitive decline. At 71 years of age I simply assumed that it was just the routine stuff that happens when one gets older. I can't tell you how many times I've caught myself looking for my cell phone while I was talking on it. The furthest thing from my mind was dementia. I can't say for sure if I was in denial at this point but I definitely was as her cognitive decline accelerated.
Dementia tends to be difficult to diagnose because it's mostly behavioral and when it is diagnosed there is usually no mistaking the signs at that point. Once my mom started to run simulations that bordered on delusional it was very obvious she had dementia. Prepare yourself for the worst and hope for the best at the earliest signs. My mom would be 'ok' for extended periods of time then have these moments where she would fall off a cliff, cognitively speaking.
As a native Korean speaker she spoke good enough English having been in the United States for over forty years but she hit a point where she would only speak her native tongue. Confusion and simulation aside she was still more than manageable, at least for me. My sister is my mom's primary caretaker as they live together and her experiences with my mom's behavior is vastly different from mine as I only take her on the weekends and it is not uncommon for dementia patients to vary their behavior with different people.
Out of the clear blue my mom started to wander, mostly looking for her mom who passed away twenty five years ago. I took to doing things on the fly as things progressed with my mom, largely because I was simply in denial that things were getting as bad as they were.
Watching a loved one experience dementia is nature's cruelest joke. The person tends to know something is off with them in the beginning and they will look to isolate themselves from their social circles. My mom stopped going to church for a year and if you know my mom the church has been her life for the past forty years so that was a telltale sign something was off.
At the first signs of what may or may not be dementia, find the best neurologist that you can find. Get all the necessary images taken and build a relationship with this physician. Put a face to the name so that you get premium attention.
Start contingency plans well ahead of time. Everyone's situation is different and dementia is an incredibly taxing illness emotionally, psychologically, physically, and financially.
Get a medic alert tag and a gps device right away even if there doesn't seem to be a need for it. I can't recommend the dynotag medic alert tag enough. You can put tons of information on it that gets accessed by a QR reader that all emergency personnel have.
I got my mom the Trax +3G gps device because it was one of the only brands that offered a wrist strap accessory. The battery life is bad, only four hours or so but it is accurate and the phone app used for tracking is decent.
Get everything with Medicaid squared away ASAP. They are a nightmare to deal with so this might be the very first thing to do at the first signs of dementia. Whatever your loved ones financial situation is, get it sorted out. Hire an elder care attorney if necessary, it will be worth it. I no doubt lost three to five years of my life dealing with the stress of Medicaid with their conflict free evaluations, their timelines, their different account types, the insurance carrier evaluations, home care appointments and the list goes on. I am actually going to be writing a free Ebook on this process specific to New York but I am sure the process is similar everywhere it is crazy.
Take care of yourself. You are not worth anything to anyone if you drive yourself into the ground. If you are anything like me you were raised to be the fireman. The one everyone calls and relies on to put out the fires but unless you are at optimal strength, you really can't help anyone. Make sure you eat right, get enough sleep, talk to your support team, write down your feelings, process things out. Dementia is one of those incredibly exhausting illnesses and it's a marathon.
There will be incredibly good things that will come out of the experience if you so choose. I am not a church person but I take my mom to her church every Sunday and sit with her through a Korean speaking service of which I understand nothing, but it's my pleasure to do because I see how it positively impacts her. I've spent more quality time with my mom over these past three years than at any other point and time in my life culminating with having her on the weekends this past year and continuing and it is such a pleasure to spend this time with her even when I have to have conversations with her about her other son Elliot.
My experience with my mom's illness has taught me to be more present in my life and to live with more gratitude. I've had my mom for forty-seven years and counting which is a lot more time than many people I know have had with their mothers. I am of the mindset that the only things that matter in life are our health and wellness and the help we get, and give, loved ones in their greatest time of need, everything else is just noise. I hope at least some of these pointers make it easier for you to deal with the challenges of caring and dealing with a loved one who has dementia should you have to face it, hopefully you won't.
Comments
Post a Comment