In looking for ways to most efficiently keep my husband at home until he's well into Stage 7, I googled medicare and home health care and they mention the PACE program. THis appears to be a managed care program; you use their doctors, get meds through them, and co-pay if your income is too high to get it all free. All things considered, I don't think my husband would mind if he had a different doctor but we've never used managed care before.

Has anyone else used this program, which is apparently nation-wide? DOes it save money?

This has just been brought to my attention as a possibility. There is a PACE program nearby but I'd love to hear if anyone else has used it or has known anyone with experience. Pros and cons would be appreciated. I'm speaking with them tomorrow so I'll give you the rundown when I have it.

When I placed my husband is AlF I was going to enroll him in PACE. I live in Ohio and it is one program here. It is designed primarily to help keep patients home but if placed in assisted living Myrtle is correct that they take over everything. One has to be on Medicaid to enroll at least here in Ohio. I was told at the time of getting approved for Medicaid by the admissions person at the ALF that she would not recommend it as she said that they had patients on PACE who needed to be hospitalized and had to get permission from the PACE doctor before,the person could be moved. Also she told me that when they called to get them transported that PACE had no,idea who the patient was. It took far too much time when a person needed to go tomthe hospital. It was her opinion that one gets better service on straight Medicaid. Since I was ignorant of things I took her word for it and did not enroll him. I did like his primary care doctor and was not really wanting to change doctors at that time. I will say though they have a good sales pitch. I really was ready to sign him up after talking to their customer service person. He was very positive and energetic making it sound great.

I spoke with the PACE person here in Southern California. It is primarily a program for Medi-Cal (California's Medicaid) recipients designed to package most of the special services needed by "frail" elderly people. In the nearby location they have a Day Care for Alzheimers, a clinic, a pharmacy and a cafeteria. You have to change your doctor to a PACE doctor and the medications are also dispensed by their in-house Pharmacy. If needed and approved, you can receive in-home caretakers but their hours are determined by a nurse and the State of California. They also provide dental and eye care. If you are approved for Medi-Cal, there are no fees for these services. If you have Medicare you have to pay a monthly fee but because the local program has no private pay participants (not surprisingly), they couldn't give me an exact amount -- somewhere around $3,000 a month! If emergency care is needed, you have to call the PACE people to get approval.

The qualifications for Medi-Cal for a skilled nursing facility and for Medi-Cal for PACE are different and our elder law attorney recommended we go for the Medi-Cal for the skilled nursing facility qualification.

**Spoiler alert. Rant to follow!**

Okay, folks. This is insane. Isn't Alzheimer's a disease? Shouldn't there be care provided for the symptoms of this disease through our health insurance programs or through Medicare? From what I've learned this is how you get into a SNF.

Well-to-do? Cool, find a fantastic place and pay for it.
Poor? Cool, government programs give you a hand but good luck with finding a decent place.
In-between? Uh....well, win the lottery (see Rich above) or spend all your savings and retirement on private pay until you are poor (see Poor above) and then you can qualify for Medi-Cal!

And qualifying for admission is a racket too. It looks like the best way to get qualified for admission into a SNF is to have some terrible event which pushes your loved one into a hospital stay, where they are forced into admitting them into the hospital as opposed to "observing" them for three days. And then fighting like hell to get your LO transferred to a SNF facility for the 100 days that Medicare will partially cover (you still pay $100 a day). Then wait and pray for an open bed in a Medi-Cal facility that isn't a hell hole.

Or -- you can find a lovely ALF with a locked-down Memory Care Unit and a Medi-Cal approved SNF, who will allow you to self-pay the $7,000 to $9,000 for the Memory Care Unit while you wait for an open Medi-Cal bed, which could be anywhere from three to six months.

I can't tell you how many people have told me not to mention we will eventually be on Medi-Cal. Or to "down-play" it. Wouldn't want the people profiting on dementia getting worried about their fees! Yet, 65% of all people in SNF here in California are on Medi-Cal. So let's all just pretend. Argh!

I could go on and on but I have to go back to work to try and find enough money to pay for all this. Meanwhile, my dear sweet Jim is watching Star Wars Rebels for the umpteenth time with our new $20-an-hour caretaker. I want him to stay at home as long as we can control his negative behaviors and as long as he still knows where he is. Board and care is a possibility, too, so I'm starting to visit SNF, Memory Units and B&Cs. Oh boy, can't wait.

Medical insurance and Medicare are design for acute care, not terminal care. They are design to pay for therapies that cure. If they covered long term care our premiums would be astronomical. But I am ready to rant on how standard medical insurance doesn't cover dental or vision, so rant away.

There is no real system in the US for dealing with dementia. There are some programs, which are LTC insurance and Medicaid, but no sort of comprehensive care. Both have to be constantly vigilant against those who steal from the system (both healthcare providers and recipients), make the system clunky for the rest of us. And we have presidential candidates who want to restrict Medicaid for those whose income falls below $6,000/yr. I think about how much a well spouse can keep (house, car, $110,000 depending on state) and I think about how many people in our situation would consider well off if they only had that much assets.

Doing the huge self-pay here with my wife's retirement funds. This will last a few years (I need it to last until I am 59.5 years old). Her ALF is set up for her to stay and switch over to Medicaid once these funds run out. We don't have LTC insurance but her LTD insurance helps pay the bills.

Bev, have you consulted with an eldercare attorney? For the Medicaid that covers LTC you are entitled to some of the estate and your own income as a well spouse.

The rant by Bunny's Lamb pretty much said it all. It is one of the reasons we all dread Alzheimers so much. Besides the mental and physical destructions of the patient (and caregiver, sigh), it goes on forever and very often destroys the family finances…leaving the spousal caregiver eventually much worse off financially. I loved Larry dearly, but there is no doubt that one of my biggest goals was to get him taken care of without impoverishing myself. I kept working until I just absolutely could not do it anymore (left the workforce at age 63 to take care of him), tried to hire help "off the books" as much as possible to save money (can be risky--be careful about that), and enlisted the help of family for the last 21 months of his life. Also, having Hospice at home for the last 4 months of his life billed Medicare 100%, so was very advantageous financially. Having the family on board to help out cost me a good deal of money, but at least we kept him home and kept the money in the family instead of giving it to the government. I am still solvent, but not nearly as flexible as I used to be.

Alzheimers finance is not a one-size-fits-all approach, of course. What worked for me (sort of) is not going to work for everybody. One thing that is super-important is to start your planning when the patient is still in the very early stages. Talk to an attorney about putting together some kind of Asset Preservation Trust, or "Medicaid Trust." In my work over the years, (public health nurse with all-Medicaid caseload) for 20 years), I've only seen one family who had this, but it was golden. All the money was in the trust, the patient got Medicaid, and the spouse didn't lose his net worth to the spend down. But you have to do it early because as far as I know, the look back period is five years now. I foolishly did not put a trust in place--and I well could have--because I felt too much like I was being "grabby." It didn't seem fair to Larry to put most of the net worth into a trust…we had always been full financial partners…very fair and equal with each other…how could I do that to him? Yeah, right, slap me up alongside the head. Dumb, dumb, dumb.

Another thing you can do is make sure you live in an environment that is conducive to taking care of a deteriorating patient…so you can keep your spouse home as long as possible. The biggies that spring to mind are to be able to live and take a shower all on the same floor--either by living in a one-floor house or by making sure that you have a bedroom and handicapped-friendly bathroom all on the same floor…with an extra bedroom somewhere for the aide to sleep in case you need a live-in at any time. This is going to make life much easier for the caregiver, too. Try to get a washer and drier on the same floor, too. (I threw the soiled laundry down the basement steps, but boy, what a pain to have to cart it up the steps all the time.) If you're in an apartment, either be on the ground floor or in an elevator building.

I've never known anybody who did this, but I've always thought that taking a nurse's aide course would be useful. (I don't know about other states, but in NY a personal care worker course is only one week, and they teach you some simple basics--how to make a bed, transfer a patient safely, give a bed bath, feed a pt….things like that.) So much of what you do as the spouse is custodial care, so to me it makes sense to learn how to do it the best and safest way. At least you would have a little more knowledge of how the aide is supposed to be doing it, even if you're not doing it yourself.

And transferring safely is so important…maybe as your spouse deteriorates, you could have the nurse or physical therapist teach you how to transfer so you won't hurt your back. It's a huge issue.

For those already on Community Spouse Medicaid, or who are just not going to have any choice but to go that route, I can say that I've seen many, many spouses or families embracing frugal living and having happy, pleasant lives. Maybe you could try going onto websites that promote frugal lifestyles and read about the strategies. Some of them are recommending frugality to younger people so they can retire early, but whatever the reason, I think there are some good ideas on these websites. Off the top of my head, there is Mister Money Mustache and his blog posts going back several years…but there are others. (Just a thought--hope this doesn't sound schoolmarmish. I am on a very reduced income right now due to Larry dying before I reached social security age…so am trying hard not to do anything stupid with what I do have left.)

I had my husband on Medicaid waiver and then switched to regular Medicaid once he went to LTC-- I have the house in a trust. It protects the house from probate expenses and from Medicaid coming back and taking the money after I pass away. I used my spend down to pay on my house and my funerals. I put the funeral money in a funeral trust which earns interest. I saved money by putting in the maximum amount which is $12,000 and now get the remainder from husband's funeral. One can save a bundle by cremation--like almost half. I know cremation is not for everyone but it is so much cheaper. I had to go to probate court to get a legal paper that authorizes me to receive the proceeds. Still waiting on that. I am fortunate to have a little job at home which I plan to continue. I am using the proceeds from the funeral to purchase a new water heater, to pay for his grave marker and plan to pay off my house. I am not impoverished but certainly not as well off as before this all started. I have to be honest though that because of what I went through financially, I am much more aware of how and where I spend my money and keep a very detailed budget. Before the dementia, I never really thought about money very much. If I wanted something I just bought it. I feel good that I spent the money on my house and funerals and that I did not have to spend it on his care. I agree with Elizabeth that one can live very well on less. I think it is a matter of having a frugal mindset. I have a partial school pension and a little bit from SS plus my job--
A part time helps a lot I was at Wal-Mart yesterday and saw one of their employees. She was walking with a cane and looked to be clearly in her 70s. I thought to myself she is doing what she needs to do to survive.

Oh my goodness...I have to say that I feel terrible about the financial strain that families are going through...particularly my neighbours to the south (USA)...yes we have considerably higher taxes here in Canada, but long term care is subsidized by the provincial government, at least here in Manitoba...When hubby is placed we will be paying the daily minimum which is 34.50/day and includes all aspects of his care including meds and incontinence products...the maximum daily rate is 80.60 which sounds like it is still less than some of the charges being faced by my southern neighbours...I hope those navigating those waters can find a reasonable medium financially as it seems so unfair to work hard all your lives only to lose it all and your spouse to this damn disease...

I did not realize that there was no five year look-back period if you used PACE. That sounds like an excellent program, especially when the well spouse is fairly young and can reasonably expect to live another twenty or thirty years. I did not have to face the Medicaid problem because of our local veteran's home, which although not free, is a fraction of the cost of nursing homes.

Lindylou, what do families who use your local PACE find to be the weak points of the program?