Reached out to my state rep

This is a topic discussed here frequently. It usually ends up with two views. The government should pay or we should be responsible for our own care.

I think most of us do not think about this until we are personally faced with what can be an astronomical price tag for the care of a person.

We insure our homes and cars but not ourselves without much thought to the "what if". Maybe we think nothing will happen until we are on Medicare only to find out what Medicare does not pay for.

I know first hand just how much it personally costs for care. The amount was staggering for 24/7 in home help. it was too late to buy Long Term Care insurance for my husband but I immediately got it for me. Yes, it is expensive but way less than care in a facility. I hope you will look into that for yourself.

Thank you for the effort you are putting forth for all of us!

I quit working at 58 to care for DW with EO. Fortunately I had enough time accrued with my pension, so I started collecting much earlier than I ever imagined to pull this off. Without the ACA I wouldn’t have health insurance. DW is now covered under Medicare but she was on Market Place with me initially. I can really sympathize with your predicament j.eastcoast. Wish I had some solutions for you. Not sure myself how I’ll cope when future care needs increase. Thank you for your advocacy. I did get a minimal LTC policy for myself, it would just dent the surface of ALF costs but would cover some Homecare if I ever need it.

@j.eastcoast

We all feel your pain. I don’t think you will get very far in the current political climate. Many people( not me) are bound and determined to believe that everyone in the US should be totally self reliant and if you aren’t, well you shouldn’t get money from their taxes. No one understands the financial burden dementia places on families until they’ve lived it

Nothing will happen until the affected come together and DEMAND changes.

Iris

and…..there is a lot that Medicare in not going to cover!

is it really reasonable in your early 50z?

Yes, the younger you are the lower the premium. Worth asking....the number of companies who offer LTC insurance has shrunk. Mine is with John Hancock (not an endorsement, just sayin).

My spouse and I pay a total of $194 a month for group policies we’ve had for 17 years. We’ve taken the inflation rider increase every three years. We will start only taking that once every six years ( or not at all ) now that we are both 65 and counting. Our policies have a six month waiting period

The "Gray" population is NOT at all a focus for the benefit and law making politicians. We of
"mature" age; we do not rabble rouse in large unwieldly groups. We do not riot, throw bottles, burn, gather and threaten, etc. etc. we do not noisily and threateningly get persistently on TV nor create political issues for the pols except lip service. We are sometimes addressed; ho-hum; ah yes, some lip service and then simply put aside. Those groups who advocate for seniors do it politely and get some small returns sometimes, but nothing much that is really needed. It is NOT what is on paper or published to take kudos for - it is about what is actually concrete and consistently working in real time.

Those groups that have got positive responses and significant changes for other causes have often been loud and threatening or somewhat threatening; join together in noisy persistently visible groups, and get a LOT of TV coverage.. We do not hit re-election need buttons for politicians. If we did, we would be much more getting much better benefits and situations.

The aging and aged in need . . . . POOF! Not a priority. Sometimes some lip service during election cycles for a bit of time, but not with the much needed results. A lip wag and then pushed aside.

I could go on and on; but you all know . . . . . it is a sad, sad lack with no end in site. What the heck - those in need worked and carried this country on their shoulders over the years helping to build what we now have and will have in the future as others continue to build through their work. But dare to be aged or aging and in need for something like dementia and aging service provision . . . . lost in space it seems.

Unless this becomes a HUGE noisy issue with huge numbers in this population making lots and lots of visible input, it will simply remain as is. Lip service. Sometimes I think about this and just feel despairing at the inequities of it all.

Politicians always pandering to the next election they must fight their way through - wish they felt this gray population was worth pandering to - not enough noise and no big fighting groups - politeness does not seem to bring much reward.

Sad.

J.