Suggestion to become active in promoting caregiver help, not a question!

I especially appreciate your posting of the links on finding Representative. A help to us all, and things would be better if we all let our opinions, whatever they are, known to our representatives. It is said that when they hear from a constituent they consider it hearing from at least 100 others who took no time to express an opinion, but may share it. Our own California Jackie Speier I so admired the day she stood before us and said something to the effect that we need to understand and accept that they are there to represent us, that means GET ELECTED. That when someone calls or writes they listen, because, if no other reason matters, it could mean their re election or NOT.

Disgustedtoo,

Thanks so much!

To Site admin - is there any way to "promote" this post? I've tried sharing the link to it in other posts, esp when the topic of needing to bring this to gov't attention is mentioned. THIS is important, the NYT article given above has the ideas of the new administration for making changes that can help caregivers, both family and hired, but WE NEED TO HAVE OUR VOICES HEARD! So many could benefit from this program they are proposing, but if those in "charge" don't hear from those in need, it won't go anywhere.

I went to the trouble to provide links so others can find their reps and Senators, but this post seems to be stuck in the mud somewhere. There are a lot of us on this site and we live all over the country, so we can give MORE Senators and reps a lot of input on this important topic. That will only happen if someone can make this post more "visible" to others. I don't do social media, so I can't start a movement there, but here are those who can benefit the most from this program. PLEASE!

Thank you "disgustedtoo" for making us aware of this. I've been so busy trying to take care of things with my mom now that hospice is out of the picture, I haven't had time to delve into too much of anything!

Thanks so much for this information. I knew there were plans afoot but I didn't hear any details; appreciate the contact links.

Thank you, great article! It's appaling how little support there is available for families with elders who need care. I fully agree that we all need to contact our reps. I wonder if there is any kind of organized petion effort out there? I could not find one on Change.org.

new article, with a link that shows Biden's suggested plan:

https://thehill.com/opinion/healthcare/536316-we-need-comprehensive-long-term-care-reform-and-we-need-it-now

So, it is getting attention, but WE the caregivers NEED to chime in. Stats tell part of the story, but hearing from those in the trenches will make it more real to politicians.

The link is in the article above, but here's the proposed plan:

https://joebiden.com/older-americans/

There are many benefits proposed. Tax credits, SS credits for those who have to leave work to care for elders, child care, etc. Please read these and contact your Reps and Senators. The original post has links to help you find your Reps and Senators, with ways to contact them. You don't have to write a novel to them, send the links along with a brief description on how this impacts you and your LOs. The more who do this, the more likely we might see some or all of these changes happen.

As the saying goes, the squeaky wheel gets the grease, so START SQUEAKING! With such a large "audience" on this forum, from all over the country, the more who contribute to raising awareness, the more politicians will perhaps see that this is a HUGE issue!

Disgustedtoo,

Thanks for passing along information regarding this important topic.

We all need to be aware of our situation as it stands presently and care enough to educate ourselves on any upcoming issues.

The responsibility falls on our shoulders.

I have been fighting this plan for months, it is horrible. I have wrote Obama, Biden, my Senators and Congressman both federal and state.

As a person who lives in a pretty progressive Medicaid state, throwing a few bucks out there does not solve the main issues burnout, caregiver rights and mandatory respite. Putting more money into community programs for demented seniors who do not understand the stress they put people under is not a solution. It is sick and stupid. I can share if you wish my lovely email from my Senator stating it is a state problem not a federal problem. Now that her party is in power, oh I am sure she will just switch it up.

Thank you for bringing this subject up but I personally feel politicians of both parties are delusional about the real issues that $5k in tax credits will not fix.

I have someone who wants to come back to my house that I do not want. Maybe I can drop her off at my Senator's house or the White House with $5k and they can deal with it.

Stacy, my favorite new expression is Beatty's "No solutions will be found if you continue to be all the solutions."
That is what has happened with families taking on in-home care, in my opinion. They are going crazy, becoming ill, indeed even occassionally dying from trying to do what nurses and aids do on a shift basis for 24/7 continuously. This is going to be more and more a problem with fewer and fewer children willing to take it on. Most children need to work into their own old age, BOTH members of a husband-wife or partners team have to work. There aren't going to be many at home doing this care.
Now Sarah Palin might have had something with the Death Panel idea, because my hand will go up real fast when they offer us the pill to get out quick, certain and painlessly. I suspect a few others will feel the same. Would get at least US off the public dole and off the backs of our children and inlaws. But so far the death panels aren't showing up. Given that Docs can no longer make a heap of money treating us when we are old, they are a bit more willing to call in Hospice. But only a bit.
This is a huge problem with no easy answer, and I would imagine folks opinions are as divided on THIS as on any other subject. My advice to all is hang in there. It's a real bumpy ride.

No offense Alva, but I do not believe Beatty is from the US and your brother planned so you have not dealt with the wonderful Medicaid program.

For about 2 months, I did the pay a caregiver thing, supposedly for 10 hours a week. The person receiving benefits as well as the husband needed 24 hour care per the doctors. What a mess, ugh. So, let's say a person can sit at a table to eat and drops things. Well, a Medicaid aide cannot move a chair 6 inches to sweep and mop that is heavy housekeeping, so you cannot get paid. As is setting up meds, dr appt, shopping, finances, cleaning a sliding door, etc. etc. That is just something "family" (a term used at their convenience) is used. So, you get paid nothing cause because it violates their rules. I developed serious heath issus and needed respite but it was denied cause a demented senior refused. Then agencies use threats of abuse charges.

This plan is assinine.

Stacy, let me go this route. What start would you make in helping, in fashioning a bill.

Alva, so the first part of this wonderful plan is a $5k tax credit and a SS credit. So, in 2016, AARP did a study, which concludee on average the out of pocket costs the family caregiver incurred was $7k. So the tax credit does not even cover the expenses 5 years ago. That $5k is fine for a non-live in care giver who may buy groceries or do dr appts but thats about it. Then there is the SS credits, are the credits going to be based on the $10-$16 an hour you would "make" as a caregiver or your lost wages at a higher paying chosen profession?

So, in Michigan, Medicaid will pay for 24/7 care for an HHA. So let's pretend that really happens and we will do a $25 an hour bill rate, not the $35 for a CNA and the admin fees. That comes to $4200 a WEEK vs. the contracted $3500 a MONTH for AL. Plus family would still do meds, wounds and anything else the HHA cannot do or bill more. Here, unlike CA or other states, we do not have share of cost, so they get there whole SS and guess what, a HHA can take them to the casino to blow it because they need social interaction.

So, a caregiver can get 30 days of respite, woohoo. The average working adult gets weekends off and 2 weeks vacation. That is 114 days off a year plus evening hours. Plus in order for respite to be given, the adult needs to agree to it, why not increase days and mandate it?

Also, a commission needs to be created which protects caregivers not just the elderly. Have you ever seen careplans that say CAREGIVER BURNOUT IS VISABLE, PT REFUSES RESPITE OR INCREASED HOURS. I have and it pisses me off to no ends that it is all in the elders hands. The two agencies would work together.

I do have a well thought out plan but no one listens and when I tried bringing it up here before, it was "my tax dollars."

People do not want to solve the issue.

"...politicians of both parties are delusional about the real issue..."

Never a truer statement.

THIS is why I am suggesting we all get on their case and show them. One person isn't likely going to make a difference. Thousands or more might be able to make that difference. I would like to see others take a few minutes to make their issues known to the politicians. Personally this has not affected me. My parents had saved and mom still had some money and the condo to sell, so that we could pay for the care she needed. But I HAVE read so many posts and comments on this forum that are heartbreaking.

Situations don't change themselves. When I had my first child, there was no "maternity" leave. I was lucky to just get my job back, going back 3 months after. Now, there are still places that don't provide it or hold your job, but there are so many places that do cover it AND there are companies now that pay for "paternity" leave too! Did that change itself? No.

You DON'T have to agree with anyone else's ideas or proposals. Whoever gets on board with rattling the cages can provide their rep with their own concerns and needs. Unless WE the people tell our reps what's lacking, they will remain delusional. One person, such as yourself, won't make a difference. MANY people, on this forum, and all their contacts, etc can make a difference. Perhaps when it gets rolling, others will hear of it and chime in. We don't know that unless we try.

Whether the proposed changes are what's needed or enough is NOT the point of this post. The point is that we have SOMEONE who is aware of the issue, who is on our side and has made some suggestions. It would be a starting point, something we DON'T have now. Change has to start somewhere and can be built on. No attempt at change will mean it all stays as it is and it sucks as it is.

The second article link I provided discusses some of the short falls in the proposed changes in that first link. Nothing's ever perfect.

The bottom line is we can all sit here, grumble and complain and struggle with the same issues OR we can all enlighten the politicians.

IF we choose to do nothing, NOTHING will ever change.

IF we, as a group, can light that fire, maybe, just maybe we can make some progress.

Rome wasn't built in a day. No program will ever meet 100% of everyone's needs, but SOMETHING is better than NOTHING.

We HAVE nothing now. I know that the mother of one of our state reps had dementia. I know that she will be able to relate. But, again, IF WE DON'T SAY ANYTHING, NOTHING WILL GET DONE! Since this is such a large forum, spread out over the states, and each person probably knows others in the same boat, we can mobilize and let them delusional pols know what is needed.

Post your proposed plan here, at least the primary points (limited characters and all that!) It might give others ideas about how to approach their own comments to their reps. But, we don't need to propose plans, we need to let them know what is lacking, what is needed, how much it impacts everything.

Choice:

1) do nothing, all stays as is
2) start a movement, maybe we can change things

As the saying goes, "It is better to light a candle than curse the darkness" I say we should all start lighting candles. All the cursing we've been doing hasn't changed anything...

Disgusted,

I have thought alot about your thread since Tues. I had a meeting with a lawyer, google best CELA in your state. Its expensive, like $1500 an hour expensive here.

If you really want to make change, hit up your state reps, I have been the squeaky wheel since about 2013 or 2014.

Finally, changes have been made. Promissary notes from recipients for home improvements and back taxes out weigh a Medicaid lien. Also, there is a new "sweat equity" per say. So lets say, you choose to move in with your parent and you have 12 hours of Medicaid care and the caregiver child does 12 hours, rounding numbers here, the 12 hours caregiver child puts in offsets part of lein amounts, which is honestly pretty cool, in my opinion. It is for caregivers who live in the home with someone needing 24/7 care only.

It takes a lot of work, documentation and time but if you want to make change, you can. Think through your ideas and I wish you luck.

I found yet another article about this crisis:

https://newrepublic.com/article/161920/home-healthcare-elderly-care-crisis

For the most part, WE don't need to be informed, but our representatives DO. I chose to wait a bit, to get past the changes in administration, handling of the virus and the aftermath of the assault on Congress. I know the latest bill introduced has some funding to help with this crisis, but it will need support of more Senators and Representatives to pass, and then will most likely need additional measures to avert the crisis. Nothing is ever perfect, but any improvement is better than none!

I just sent email/contact messages to our Representative and both Senators. I included links to all four articles AND gave a lot of feedback about the various ways this impacts so many. Elders, their families, adults and children, even employers when someone who has good skills has to leave the workforce. Low wages for caregivers. No wages often for a family member who gives up employment to provide the care. Job loss. Future insecurity for those who have to leave jobs to provide care. Lack of good help. Lack of funds for quality care, both in-home and facility. Anything and everything I could recall from reading the heart wrenching postings from so many on this forum.

While my journey wasn't a cake walk, in comparison to so many others it WAS simple. Mom had sufficient income AND savings, along with a condo we could sell and use the proceeds from. I found a great place that provided wonderful care close to my home. Mom wouldn't even need to move to a NH as her condition progressed. So many don't have these options.

What they all need to understand is this system is seriously broken and will impact so many for MANY years to come, not just the elders and their family care-givers in need today. It will have a snowball effect, impacting many with their own future needs.

Hoping to hear back from these 3. If I do, I will relay anything hopeful. Hoping also that many of you can send a message to your Representatives and Senators. It doesn't have to be a novel, so long as it covers the high points so they can get an idea how many are impacted by this crisis. The more who can ping their reps, the better. If we don't identify the need, it won't be addressed. There are some reps who still wear blinders and refuse to see the situation as a problem, but if we can get more on board, perhaps some changes can be made!

Thanks to any and all who can spare a few minutes to make contact with their reps.

HAH! First reply from one Senator... LONG detailed description of why she voted against raising the minimum wage amendment. DUH, that is NOT what I wrote about. The subject line I submitted was SENIOR CARE, DEMENTIA!!!

I sent a reply stating the reply was totally off topic and restated what the topic was. Whoever sends her "replies" needs a head slap.

Disgustedtoo,

I know that you aren’t surprised by this response, are you?

It’s one of the oldest tricks in the book, (changing the topic) even though it is insulting to your intelligence! Honestly, it only makes them look foolish. They aren’t misguided. I am sure that you expressed your inquiries and statements clearly.

I have written letters to my local government leaders addressing specific topics and I must tell you that I got responses back similar to yours. It’s frustrating and insulting!

When I received responses that addressed the topic that I was inquiring about, I was pleasantly pleased and I sincerely thanked them for taking the time and care to help.

Good luck as you navigate your way through this difficult situation!

I did get a voicemail message from either the rep or the sen, not sure which. Call came through as Restricted - you don't show number and/or it's not programmed in my phone, I don't answer! In the message, it wasn't clear which person's office had the call made, but at least there was a call! They are both aware that funding is in this plan the admin wants to pass, but getting pushback, big time. Apparently all the rich old dudes in office either don't have ailing parents or have sufficient funds to pay for the best places/care and don't give a hoot about anyone else, including their own constituents!