Reached out to my state rep

j.l.m.

I am tired of everyone (doctors, lawyers, care givers, MC administration, etc) that I speak to telling me the system is broke, the system is going to implode, that there is nothing more I can do, and that I am in a unique position. That position being younger than my DH and not able to retire yet to care for him. Assisted living is so expensive, it would not take long to drain our savings. Put him on medicaid and his income is taken along with half our savings. Stay home and I lose my top tier medical benefits, pension and social security for when I need to retire. It's a lose lose for everyone involved in this cruel journey my DH and so many others are going through.

So I called my state rep and we had a long conversation. I want to get involved for change. Families should not have to go broke to care for their loved one, and she agreed. The population is growing, and with the baby boomers approaching, something is going to give. She was meeting with our Senator and passing along my concerns, and try to come up with some legislation that could benefit our population. I appreciated her time and her sincerity throughout the conversation. We are going to have frequent check ins, I have her cell number, let's get something done!

LindaLouise

Thanks for the motivation to contact our reps. I find it shocking that those of us who have worked and paid into this system all of our lives are faced with such bleak prospects all because our spouses were unlucky enough to get Alzheimer's instead of another disease that is covered by the healthcare we pay for. It is fascinating that the government/Medicare is willing to pay out thousands for patients to have access to new dementia medications, but not willing to support caregivers with anything to keep our lives, finances, etc. from imploding. An example: There is a program called PACE that offers respite and day programs, but if you don't qualify for Medicaid, you pay an inordinate amount to participate. For example, you have to switch to a PACE prescription plan, which costs hundreds of dollars a month more than current non-PACE plans and then pay additional thousands of dollars to participate. I have been actively working to promote legislation to change that, but the bigger picture - the idea that a working or retired spouse must essentially bankrupt themself to care for their LO - that truly needs to be changed. I wonder who else is in this situation with us? Are their other diseases that are so unsupported? We really do need to work hard to bring this to attention - I didn't know about this until I entered the ALZ portal and imagine others are similarly in the dark. Sorry for a bit of a rant here, but it is frightening to wonder how we will survive this financially and all other ways…

jfkoc

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!

subversivevegan

Reality: One needs to be very poor or very wealthy to manage this disease.

M1

Second that for any who are still young enough to do it: best advice I was ever given was to buy long-term care insurance while i was in my forties and still healthy. The annual premium is about $3300 per year—and I've been paying that for at least 25 years now so $82,500 in premiums. But that's only ten months of care in a memory care facility. Any of you who are in your forties or early fifties, you should do it now.

housefinch

Unfortunately, many people nowadays can’t afford those premiums given the cost of living. I’m picturing most even middle class US households really struggling to afford an additional $500/mo indefinite post-tax expense in LTC premiums. Many can’t weather an unexpected $400 bill. I’m saying this not to start a political debate—-just that it’s the reality. My husband and I pay the equivalent of a luxury car payment monthly in life insurance premiums to cover future care costs for our children in case something happened to us. We are lucky we can do that, but I would love a new car or kitchen makeover instead. It’s truly prohibitive for many.

Cklaw

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.

trottingalong

I appreciate all that you wrote. I’m 13 years younger than my husband. We are both retired. We have social security and a small nest egg. We (meaning me) cannot afford the expense of placement or in home care, when that time comes. We have both worked hard our entire lives. If we took everything we have to sink into placement, that leaves me broke. There are many of us out there who bought our homes, worked hard and we retired. We didn’t make large sums of money, but made it through without debt. It’s frustrating and depressing.

Quilting brings calm

@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

Brokenhearted in Illinois

I agree - they do not understand the disease or the costs - emotionally or financially to the Spouse. I am struggling to cover in home care a few days a week to help me care for Dh. (24,000 year). Without the help I fear my health will suffer. I was advised by a therapist to find sn institution that will accept DH Medicaid pending. So I will pay until Medicaid kicks in. What really gets me is that the system is set up to deplete your savings- lawyers, home healthcare , case workers ( who I have not had any significant results, and so on. I agree- my father had heart bypass surgery - all in - with intensive care - it was $1,000,000- all covered by Medicare. Why not Alzheimer’s ?!!

Iris L.

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

Iris

mrahope

I feel just as frustrated. Having just placed DH, and wondering how long I can hold out with the costs. And, also being 13 years younger, what happens when I need care myself? I hate the thought of being a burden on my kids. Sigh. Guess I will just have to hope that I die of something that Medicare covers…

jfkoc

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

Denise1847

Thank you for being an advocate for such a critical issue facing our society. Alzheimer's has become an epidemic in the U.S. This is not the case is some other countries. The U.S. allows so many more products to contain unhealthy ingredients, uses antibiotics on so many of our foods etc. The politicians turn a blind eye to all of this and the suffering of Alzheimer's families. It will take many of them to be affected by this disease to make a change. They don't care until it affects them. I surely hope you will be able to make a dent in this problem.

Anonymousjpl123

https://alzconnected.org/discussion/comment/206971#Comment_206971

is it really reasonable in your early 50z?

housefinch

@Anonymousjpl123 I wonder if that’s the age recommendation because the premiums are somewhat affordable then. Later on, they become exorbitantly expensive.

M1

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).

concerned_sister

https://alzconnected.org/discussion/comment/207068#Comment_207068

Financial guru Suzy Orman used to advocate for purchasing a LTC policy around age 40. She probably still does. When I was reading about it back then, it was the sweet spot when comparing the premiums paid to the potential benefits. I almost feel guilty reporting that my employer at the time offered such a policy at group rates. I've been paying about $125 quarterly for 20 years or so. Seeing what my DB is facing, I'm glad I took the option when offered.

Quilting brings calm

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

j.l.m.

https://alzconnected.org/discussion/comment/206971#Comment_206971

I'm sure there are many plans available, however, the research I have done would not help in my DH situation yet. There are waiting periods, and he has not lost ADL function. Which is why a nursing home would not be suitable for him at this time either. Assisted Living would be the ideal environment, but that leads me back to it being so expensive. I wish there was an affordable MC option. As of now, he's been at a new MC day program this week, not cheap either, but we can manage. So far it's going well, long ride and all.

Jo C.

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.

ImMaggieMae

Seniors with dementia are left to fend for themselves but San Francisco was all set to put a $1.7 million dollar public toilet in a neighborhood park area until international ridicule and some donations convinced them that they could make do with one that cost around $300,000.