Sorry, You’re On Your Own!

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There is a horrible lack of support for us and our loved ones, when it comes to FTD. Not only do we need more support, we need more training

Eventually, we end up taking on roles we normally wouldn’t have, had we not agreed to care for our loved ones. We end up becoming everything short of a doctor.

In a lot of ways, we take the role of a nurse and parent. We end up eventually feeding our loved ones, bathing our loved ones, diapering our loved ones, determining if we need to treat something quickly and calling a doctor, the roles are endless

By the way, thank those who do this on a daily basis professionally. The good ones are so under appreciated.

These days, I’m basically a mommy to my mommy. The roles are completely reversed. Yet, still…we receive so little support

So, what kind of support do we caregivers need? We need emotional support. We need more financial support. We need more (on the job) training. We need our friends and families to not drop us like a bad habit. We need more access to information and resources

Sometimes, we just need a quick question answered like: What brand of adult diapers are the best

Sometimes, we need someone to call to ask about sleep issues. Something like a hotline of professionals we can call and ask about immediate pressing needs, that the limited available resources cannot answer.

Not only do we find ourselves without friends and family in our corner, I’ve noticed that once the diagnosis comes we are pretty much left to fend for ourselves; whether you’re the diagnosed or the caregiver

Doctors should have people in their offices that can offer more help and support throughout the dementia journey

Instead, all we get is drugs thrown at us to give our loved ones, offered drug/research trials so they can research our loved ones and wished luck. That’s no longer accetpable

America, we must do better

A woman who has just given birth seems to get more support than someone who’s just received a life threatening diagnosis.Why? Suddenly, you’re diagnosed with dementia and even the medical world ignores you? Unless they want to study your brain or try a new drug on you, of course!

Then, you have a purpose. Then, you’re important. Otherwise, it’s “Good luck. Live the best life you can.

Look, I understand you doctor’s are busy. I understand you have a lot on your plates and you’re trying to learn as much as you can. And you’re trying to cram as many people in as you can, in a day. But, some of you have to do better

I remember after my mother got her diagnosis, how I had to now update my own medical file. I had to now tell my doctor that my (then) 57 year old mother was diagnosed with early onset dementia (in particular Frontotemporal Dementia), she was floored

I guess general practitioners don’t get much education on Dementia (in particular the early onset kinds). This too, is unacceptable

I don’t expect them to know everything; that’s not their specialty. But, even my doctor had no information or resources for me to help my mom

Medical shows on TV will talk about dementia, the warning signs and prevention; but, you never hear them talk about early onset dementia

Maybe this is where my blog comes in. Maybe I am supposed to help get the message out there

Maybe it will be my voice screaming to the world “please listen to us”, that will get us more resources. Of course, I can’t fight this fight alone. You all need to join the fight and make your voices heard, as well

I am but one person

We need to fight the great fight together. Or else, nothing will change. With our population aging as fast as it is, and with dementia growing among the aging population. With early onset becoming more prevalent, we need more reliable resources and support; especially those dealing with early onset.

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