Wednesday Block 3

Wednesday Block 3

>> caring for a patient with als takes a level of care and emotion, but it can also exact an emotional.

Joining us is leslie from the als association, and thank you for joining us.

>> thank you for having me.

>> can you tell us what it means to care for someone with als as opposed to someone with dementia?

>> sure, someone with als is losing the ability to do things day-by-day.

It can literally change overnight as the disease progresses, and one of the challenging pieces of that, we don't know what that progression is going to look like from person to person, so it's always something new that they're needing to learn now to overcome, a new challenge, a new skill to help their loved one with.

And those challenges are extremely frustrating.

Many times people diagnosed with als are diagnosed in the prime of their life, and the average age is 55.

So people are still working, and many times still have children in the home or grandchildren that they're caring for, so there are many aspects of life that care givers need to step in and help w.

On top of helping their loved one with daily physical activities like getting dressed or taking a shower, and even to the end of the disease, helping them scratch an itch or turn over in bed.

It can be very complex, and it's always changing.

>> and that's the thing.

That it can be years of seeing those changes, and it's a degenerative disease, meaning that it just gets worse with no cure, and with treatments that are only reducing discomfort, the caretake senior really that safe harbor for the patient.

>> yes.

>> can you tell us about on you patients and loved ones prepare for what's ahead?

How do you peep for what's ahead?

>> it's really hard.

One of the biggest challenges of als diagnose is it feels like a death sentence, there's more hope on the horizon today much, which is lovely and exciting but there's not a lot.

There's not a lot of medications to try, so it can feel very hopeless initially, and hard to prepare, and then when people wrap their heads around t.

They realize they can find a lot of joy and meaning in all of this, and they can prepare by getting things in order and making decisions about their care that they want to do.

And having conversation was their family and going back to living life.

And tapping into their local als chapter is a way to prepare.

So the chapters meet the families where they're at.

Some with a fire hose of information, and some want it drop by drop.

And the beauty of having someone who knows what's coming is they can deliver the information in the dose that's needed as people are ready to hear it.

>> it can be very overwhelming but some say give it to me right now.

And speaking to your point about drugs and therapies, we just spoke to doctors saying there are promising trials out there.

So we're looking up to treatment for als, swi wonderful news, and not that far off for now.

And caring for als and other degenerative diseases like alzheimer's, it can be very expensive and what are we talking about for cost of care for someone with als?

>> costs go up to $200,000 a year, and much of that is determined by the choices they make.

Some of the equipment they may get, home modification, and if they need an accessible van to get around, a power wheelchair.

And many of those things are not covered by insurance.

What's covered are the medical visits and the clinics, all very important, but the care giving at home is done by the family members, which is a challenge.

>> for anybody who wants resources to get help, where do they do?

>> go to the als website.

And search their local chapter and get resources in their own backyard.

>> and you're there to educate not just nurses and the caretakers but the community at large, so thank you for joining us.