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before placing them in a community?


We are lucky enough to have care in home. Its cheaper for 2 working their house. Sooner than later the money is going to go. We've been advised to place them in community so we can pick the one we want. I just can't seem to have the heart to do that. Has anyone tried something different? I even thought of putting a camper in my back yard. Adding on my home means I have a future dealing with medicaid. Both parents "wore out their brains" but bodies healthy.

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So, I forgot to post the website! wnylc/health/entry/129/

If it doesn't show up this time, then is has something to do with this site. google nursing home transition diversion program. you'll see a lot of new york state info. you will also see medicaid consumer directed programs.
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Hi Ihave2, check out this website:

It took us about 3 months to get the program going, but I had to get Mom on medicaid first. If you have that already you will be ahead. Also, we're told it's going to take about 3 months to get a stable set of staff. Mom can be quite mean - dementia behaviors, and we live in the sticks. So it's been a rough start getting folks out here and getting them to stay. Still, it's been a godsend already. Christmas was much easier and my husband and I have been able to get out a couple of times. Sleeping in my own bed is more wonderful than words can say. Hopefully you'll have access to something like this in your state. Happy New Year.
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Under consumer directed medicaid there is no look back and your parents can have 1 home and 1 car. The 2 main programs are the nursing home transition diversion program (they qualify for nursing home care but you get aids in their house instead) or managed health care - I don't know much about that. It's a bit of a process but it is a life saver for US and for my Mom. The folks who talk about doing the job of 3 people every day are not kidding. You do not want to sign up for that for very long. It will tear you apart.
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Again, you will be doing the work of 3 full-time caregivers each and every day. Note that 40% of caregivers pass away leaving behind their loved ones. Not good odds. Then what? Your parents will go into a continuing care facility. Why not do that now instead of dragging this out month after month, it's only going to hurt you, not them.
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Hi. I have my own home. Parents have theirs. I was thinking of buying neighbors home putting my parents in that home selling theirs and using money from their sale to keep them in home setting longer. Sound crazy? What do I need to look out for.
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IHave2 - one thing to keep in mind that if your folks need to apply for Medicaid, the state can do up to a 5 year lookback on their finances. Just how involved in detailed documentation really is dependent on just how your state administers it's Medicaid program.

? for you, the house your folks are in right now, is it your & your hubby's house or is the house owned by your parents? I was kinda assuming your folks lived with you and did not own a home, but perhaps that is not the situation? If the property is your parents and they apply for Medicaid, the state will be required to attempt a recovery of all $ paid by Medicaid (this is MERP & done in all states). It is not limited to payments for NH Medicaid but can be all sorts of community based Medicaid programs as well. If you are living at their property, you really need to asap do a rough tally of any & all costs paid by you & hubs on the property or on their care and see a NAELA elder law atty to go over all this as well as updating your parents legal and what options are for dealing with MERP. There is a caregiver exemption but if you & hubs work then you are not full time caregivers so the exemption probably won't be out there for you to claim with MERP. Really dealing with Medicaid if there is property really needs some sort of legal input as to what is feasible for how your state runs Medicaid and state laws for property & probate.

If your folks live with you at your home, it's not quite so complex as long as there is no commingling of money. Personally I think it's a good idea to meet with legal to get all updated or done before they apply for Medicaid or move into a facility whatever the situation.
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Thank you for lisyening. I was wondering if their wete crazy ways to stretch the money. Like buy a house in your name and then sell parents and use that money for a couple of more years. Just something out of box.
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Dear IHave2,

You sound like you love your parents dearly. Kudos to you for being a loving family. So sorry you are dealing with dementia. That is a toughie! I know, we've done it for nearly 2 years now for my mom..

It does get difficult at times. If you can take care of the parent(s) for now at home and are able to deal with it, good times all around. But sometimes it gets difficult as the dementia person needs a lot of supervision. I ran out of answers after a while. Also giving up your own life has its down points too.

Regarding the money, here is what I found out for MN. If you find a decent assisted living place (we found a residential one), they can be better than a big place - just for the sheer ratio of caregiver to patient. We found one that is 1 to 6 vs. 1 to 15 in the big places.

One of the things we learned that most places want 2 years of private pay. That's a chunk of change that we never had to begin with. Home care really stretched out the funds because we never took any money for the care.

The place we are going with will take 6 months of private pay and then we have to deal with medicaid. So please look at the financial side of things - that will help guide you. Also as the brain deteriorates, so does the body. So you need to consider your resources, both financially and emotionally, and logistically and look at what you can handle. We found out our limits.

The two issues combined (lack of money = lack of choices and less brain = less body) made us decide this was the window of opportunity for my mom to get the best care for the remainder of her life.

I will keep you and your loved ones in our thoughts and prayers. I understand what you are going through. If you want to talk privately, let me know.

Best regards,
LastOne
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I know it must be difficult. It's just that with dementia there are so many things going on. It's the constant supervision, because they can hurt themselves. Plus, you have to be so observant of every little thing, because they often can't communicate their pain. And they can be resistant, uncooperative and hostile. Then there is the physical aspect of incontinence, bathing, feeding, sleep disorders, etc. There are so many all encompassing challenges that it takes it out of the range of most people's ability. It's not like helping someone with a bad knee. It takes all of your time, energy and life to care for them. If you will read the various personal stories on this site, you'll see what I am describing.
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Wow, Thank you all. Its the quilt thats killing me. I never would of thought this would of happened to them. Thank you
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I know there must be good facilities, but in my Mom's limited experience at 2 different homes for rehab purposes, we saw only the bad. I agree that admittance while you are still competent matters. Once that fails though, if the facility you are in does not specialize in memory care, your parent will not do well.

If you really want to pursue them staying in their own home longer, or possibly moving in with you, see if your state offers the Nursing Home Diversion Program. New York does. It took us about 3 months to get through the process. Long months of 24/7 care divide between my husband and myself with me working full time. People are not kidding about you not getting sleep.

Anyway, for Mom, being in her own home (which is also our home now and was a calculated decision made by all 3 of us), was the most important feature. We will have 24/7 care in place at our house before Christmas. It will be a godsend. We just started having increased care (40 hrs) last week. I can already see Mom responding to the social interaction and focused attention of these new care givers. And my husband and I will soon be sleeping again - even together, ha!

As for the money part, check into Pooled Trusts. It is a way to meet any medical spend down requirements simply by paying your regular household bills. Again, it's a bit of a process. You have to get your parents on Medicaid and declared disabled. With dementia you will get the disability designation without any problem but it takes a few weeks.
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I agree with those above. I think that it's important if they are going to be placed to do it while they can understand where they are, develop relationships and get accustomed to the routine. I was surprised at how much more relaxed that my cousin seemed when she went into Memory Care. She seemed to sense that she was with others who shared her challenges.

If you have doubts, I would visit the places you considering, read about the procedures, requirements, etc. AND read the Patient Bill of Rights. Each state has them. Here's a link for NC. It helps me to know this about what my loved one is entitled to. Her rights are a priority.

http://www.carolinashealthcare.org/documents/CarolinasHCSystem/Patient-Rights-English.pdf
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Ihave2, I see by your profile either one or both of your parents have Alzheimer/Dementia. As you already know that medical problem only gets worse, not better. Before you know it you are working 3 full-shifts trying to care for your parents.... that would be totally impossible to do. Getting one or two hours of sleep for yourself would become the norm.

I agree with igloo above, place your parents while they are still able to learn their way around a continuing care facility and while they are able to make new friends. With the long-term-care facility where my Mom stays, I see some of the residents helping each other like good friends would :) But that friendship takes time to bond.
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Regarding the camper or a 5th wheel type of trailer, clearly find out IF the city/county allows for one to be occupied on your property. Most areas do not allow for this & that's why there's still trailer parks in the US. There's all kinds of code enforcements that can be cited & fined for having one lived in on your private property.

While I understand your wanting to have them at home, if they live long enough & progress in their dementia, they will run out of money and the caregivers will run out of ability (& often places themselves in their own financial decline) and then have no option but to move them into a facility. In this scenario by the time they go into the NH, they are unable to participate in or understand where they were. They essentially just sit in their room or in a chair confused, isolated & lost. Just heartbreaking. I saw this happen often at the 2 NH my mom was in. Family had a mom at home & moved her into the NH under duress when something happened to the caregiver & mom was past the point of being able to do things at the NH....meanwhile the other residents are doing arts & crafts, going to chapel, having a meet-up at the hair salon, going on field trips. Moving them sooner while they are still somewhat competent & cognitive enables them to participate in activities, socialize, understand staff and get into the rhythm of the facility.

Often there's a waiting list at the better Medicaid accepting facilities, which gives you time to time to spend down to qualify them financially or get whatever's needed to qualify them medically ( if needed) as well.
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