I have been helping my wife provide care for her mother. It has been over three years, but the cost is not what I would call sustainable. Everything I suggestion looking into a Medicaid facility I get told all these horror stories. Understaffed, neglect is rampant, many 'problematic' behaviors are solved via medication first before anything else. You get what you pay for. Beyond all of that we have been told she would not even qualify for placement given her level of need requires a lot of supervision but not much active help.
My MIL doctors have even gone as far to say that placement at this time is not necessary. They praise that she is thriving and has made great strides in such a welcoming and comfortable environment and placing her now would run the risk of throwing all that progress away, and they are strongly against it.
So, what exactly are we to do? We spoke with elder care attorney's that specialize in getting Medicaid and despite many attempts my MIL is still what they consider in the safety and supervision stage, and that is not covered.
How do families cope or navigate this broken system that seems to make it unusually difficult for no reason.
All I can do is wait for them to be ready. Just frustrating cause I have tried to setup tours but as a good friend told me that is a waste cause if they are not ready they will find something wrong even with the best place.
Just annoying all around I wish I could report these doctors and social workers that quote their experience as reasons why places that provide care are horrible and toss around phrases like in our medical advice, or studies show that parents have a sharp decline when placed.
I get that but they have no regard for the caregiver and everything makes me feel like a horrible person cause I do not want to struggle or fund my MIL's care till she dies. This shit is expensive.
I also don't want to ruin / lose my family either. I get I sound like a man child. It was not her fault she got sick, just frustrating. In a perfect world I wish it was as simple person x needs care they get the care no matter the cost. Problem is care is a finite resource and people should plan for their futures better.
I say this but us doing this makes that slightly more stressful to do. I can still max out retirement contributions but the money we are spending on our mother could be used to expand our own wealth.
Just frustrating cause had this happened when we were older this is different, we are nor even 30 yet. This is the time we should be using our youth to bolster ourselves for the future. Sorry for venting.
https://www.agingcare.com/discussions/dh-finally-has-to-step-up-any-advice-480766.htm?orderby=recent
You may be better served in the long run by seeking marriage counselling so you and your wife can reconsile your different viewpoints on this issue.
You are here seeking information to do what, exactly?...to build a case so you can convince your wife of the logic and financial practicality for placing her mother into longterm care somewhere that accepts medicaid. You are using logic, realistic and practical considerations in your approach to something that, I can assure you, is NOT your wife's primary concerns when it comes to her mother's care and well being - especially if mother's care team are reinforcing the status quo.
A marriage counselor could help mediate a negotiation/possible compromise between the two of you...while also honoring your wife's feelings about the issue of changing course in her mother's care.
This is way more complicated for your wife emotionally than it is for you.
I can tell you want to respect that, but I can also tell you want what you want.
Tread carefully.
I do understand that I have two threads going and never broke down in detail the cost that is my fault. To my knowledge what I have posted is not against the rules. I am came here seeking informative and viewpoints from those that may gone through the NYC system when it comes to getting care, and I did get some very helpful information.
I also made a post when to vent how I was feeling in a low point. Isn't that generally a use for a support forum? Is my situation not valid because my MIL is not in such a dire position or because we can currently afford to pay for aids and day programs? I am just confused why do you seem to have an issue with me.
I also understand I made a commitment but I also understand this is not going to get cheaper. Which does put me in a weird position I get what I promised and that is why I am conflicted. I know I should not feel the way I do. My wife was honest with me from the start.
This may "piss off" a lot of people but here goes.
You knew in advance what "the deal was"
I can tell you now that you might be able to redirect those "College Fund Investments" into Long Term Care Insurance or a good fund that will fund caregivers for you and your wife later on. The way I see things going you will not have children. I think I saw in a comment you made that MIL is in her 70's if this is accurate your wife could be a caregiver for the next 20 years.
The only way things change is if you make changes. And it does not seem like you really want to make any changes
This seems at a standstill.
Your wife will continue to care for her mom
You will continue to work to support this
If you want "play money" stop the college fund
Which is why I am trying to get information. I love my MIL I do enjoy the time spent with her but I am also no fool that this cannot be a forever thing.
Most facilities have to have so many Medicaid beds in them and only the facility manager would know that your MIL was on Medicaid as otherwise they all get treated the same as no one on the floors knows who is on Medicaid and who is not.
If it makes you feel better, there is no such thing as a perfect facility, even the ones that cost $10,000+ a month. Again they all have their issues.
Your job is to find the one that best fits your MIL's needs and price and then stay on top of things to make sure she's receiving the care she requires.
And just remember, it's not about what the doctors say or don't say, but what is best for ALL parties involved(and yes that includes you and your wife)so if things get to be just too much for you, then it's time to looking into placing her.
I am under the impression that it's always best to place someone before things get too bad, so they can adjust to the other patients, workers, and routines before their brain is too far gone.
You and your wife have to do not only what is best for your MIL but for you both as well, because as you know with dementia things only get worse, never better.
I wish you all well.
Which makes my position harder cause how exactly do I suggest we go against her mother's doctors advice l, especially when they state all the horrible things that they have experienced.
Her doctors are big on providing all care in the home.
Generally when searching for a facility you will ask if they accept Medicaid. (some facilities are strictly private pay) If they accept Medicaid they would like it if you are private pay for at least 2 years. In most cases the staff is not aware of who is private pay and who is Medicaid. So the type of care does not change.
At this point ALL facilities are under staffed. The staff that is there is over worked and under paid.
"Neglect" is often a byproduct of the overworked and understaffed and not purposeful neglect.
Don't get me wrong there is abuse that happens but the person that is abusive could be in any facility, employed by any agency or working on their own. Predators happen does not matter if it is physical abuse, verbal abuse or financial abuse it can happen anywhere.
When you place a loved one in a facility you are no longer a "direct caregiver" you become a care manager and an advocate. When you step into that role you have to be just as vigilant as you were as a direct caregiver.
I take it the aides are private pay for now?
When she needs 24/7 aides, she is going to need to be on a Medicaid waiver program. Depending on your county, that waiting list can be quite lengthy. It behooves you to get the process started now. (Is the ECA also from your wife's community?)
I think you need to speak to the local Area Agency on Aging and get MIL a needs assessment from an independent source and case management to guide you in what the possibilities are.
You are maxing your retirement accounts. Is your wife doing the same?
Do you know what kind of dementia MIL has?
Sometimes knowing the trajectory help with the planning. We knew my mom had vascular dementia and thus chances were good that there was 5 years to "get through" so we were pretty sure she wouldn't run out of money.
If a family knows their l.o. has Lewy Body Dementia, they are aware of some of the behavioral symptoms that accompany that, and placement can be planned.
To my knowledge she has unspecified dementia without behavioral disturbance. They have tried to do an MRI and PET scan for her but she is unable to stay claim during the process and would require general anesthesia for her to get through the entire sequence. During the MRI they were barely able to get through half of one sequence of the brain w/o contrast.
They said the information they could gather from the MRI and PET scan does not outweigh the risks of putting someone with dementia through general anesthesia. I did ask for a second opinion but was not my call.
The ECA is a close friend of mine, they are not part of the community but they are well aware of my wife's position on the subject. I have been told waiting is not the best thus why I have gone behind her back to seek out information.
Is the waiver program you are talking about the same as the Nursing home transition and diverse program? This was the waiver program I was also told to look into.