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I find that a lot of posters are caught off-guard when their parents go to rehab from a hospital and then turn out to need long term care. Often, the patient has no funds, is going to have to apply for Medicaid and the facility where they've been placed will not accept "Medicaid Pending" residents. It's SO very important while your parent is in the hospital to meet with the discharge planning folks, discuss what the long term plan might be and to be upfront about what resources your parent has. I can recall doing this with the RN who did planning at the hospital my mom was in, post hip fracture, which was 2 months after a stroke. She was a sweet but very businesslike woman who said "okay, what does mom have, asset-wise?" My brother and I were put off, but CPA/MBA sister in law had all the figures in her head, and having been through this with both of her parents knew what the nurse was looking for. If your parent can private pay for some number of months or years, many facilities will accept a patient for rehab and transition them to long term care, knowing that the funds are there to private pay for a certain term until the spend down and Medicaid application. I think it's absolutely essential to understand this. It's also good to know, if parent has NO funds, that it might be better to place them in a facility that accepts Medicaid from the outset of rehab so that you're not left scrambling to find them a "Medicaid pending placement" down the road.

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Sorry Ren. I did not mean to imply I was trying to give advice or suggestions. I was just wondering if you ahd considered that and if so, why not since I am trying to make that decision for my parents.
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Here is exactly what I wanted to occur with my mother: She goes to the hospital for her illness, she gets released from the hospital and the HOSPITAL'S PROTOCOL OF CARE IS TO NEVER SEND THE PATIENT HOME, but to the rehab unit of the NH. From there they transition to the long-term care unit of the same NH.
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commutergirl, you are lucky you had a big jolly loving Waltons type family to pitch in and get-er-done. Many of us are over 60, the last man standing, ABSOLUTELY ALONE IN THIS HORRORSHOW.

Windyridge, you sure said the truth! I think about this stuff for myself all the time. My barrier is a big fat retired spouse who pooh-poohs all that planning ("it's bad luck") and whose ultimate plan is to drop dead from a heart attack sometime in the future - until then, it's spend spend spend as we've never been able to spend!.....idiot...... (I am lucky in my own life with my family that we had jumped through all the hoops (will, living will, POA,  quit claim deed on the house) years before mom got dementia - all our ducks were in a row and even though I was the only one to handle things, and it was an absolute nightmare, we were in as good a position as we would ever be.) .....People reading this, listen up because when the time comes, you don't want to floundering around with no idea what to do!  
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Karsten, This been discussed but at this time I am still managing on a wing and a prayer and am afraid the added expense would deplete savings even faster. My main thought right now is trying to assure care for my wife. I do appreciate your thoughts and your suggestions. That move could very well be in my future. Thanks again for the concern.

Ren
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Lots of good experiences posted here. I just have a couple of points.

The hospital to rehab to care facility procedure is a crap shoot in this country. It can vary wildly from one place to the next. You might get the ANGEL social worker or discharge planner but usually not.

Look around the next time you go to the old folks rehab facility. It’s necessary for many folks after strokes, falls or surgeries and can get people up and at em again. But it almost seems like a reflex on most docs parts to send everyone to rehab. Looking around the facility my mom was in I’d guess it was a totally pointless exercise for about half the elders there. Many of these places are simply mills chewing up Medicare bucks.

Few people are prepared for caregiving at all much less the nightmare of making these transitions. After my sis died, then bro, and it was obvious mom and dad were going down hill so I started laying track 6 years ago. When the deciding crisis occurred recently it was still a nightmare getting two people in care at the same time. The hospital was trying to discharge mom, the AL room wasn’t set up, Dad was wandering the neighborhood...........Nightmare. Capital N.  But I was able to get it done....On a wing and a prayer.  Had I not had a handle on the legal and financial stuff....I can’t even imagine.

I don’t mean to sound boastful. There are endless situations and hardships out there. But I’m always struck by the amount of posts on this forum where it’s clear no one has given one thought to caring for 98 yr old granny who’s still driving, lives in the four story filthy house full of cats which is 40 miles out in the boonies,and  has a reverse mortgage. To be fair, the people posting are usually the unfortunate last man standing who inherits this mess. But many times you have to ask, What the hell were you guys doing the last 10 years?

I’ve been bugging the crap out of my young nephews about getting their parents wills, end of life matters and POAs done.  Have that talk now! Get your waterfowl aligned!

And BTW, I’ve spent lots of time reading this forum in the last 5 years.  For a Lone Ranger/long distance caregiver like me it has been a godsend.
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My mom went from hospital to NH for rehab due to double knee replacement. Therapy was a joke, showers were a joke and after 10 months we were done. We held a family meeting, everyone gave up off days to just see what could be done in 30 days. We Built a ramp into the house, got a hospital bed, bedside commode, small refrigerator, microwave, transport wheelchair, cordless telephone, signed up for incontinence supplies, shoe rack (held toilet supplies, small garbage can bags, baby wipes, toilet paper, pull-ups, disposable chucks all behind her bedroom door, next to commode, next to hospital bed. Once all in place brought her home on weekends for a few weeks and once we saw she was comfortable with preparing snacks/lunch in her room, from small frig to microwave brought her home permanently. This was 11 years ago. Set up doesn't have the makeshift kitchen as I am now a full-time caregiver, but she works at not going back every day. Small hand weights to keep upper body strength. Don't believe the bologna they shove at you always. Those 10 months had Mom so depressed and we altered our visits to the nursing home, not one family member ever caught her in therapy nor did she say she was in therapy. She would call us when she rang for the nurse so we could time how long it took. We treated ourselves to a baseball game and for all 3 shifts, no one changed her. That was our last straw and began the arrangements to bring her home. The limited mobility can sometimes be worked with and in our case, it could. All she had to do was stand and pivot. The transport wheelchair is so lightweight and all four wheels are small. We bought everything that was not insurance approved from the Bargain Finder (no Craigslist then). I don't have the family help I had back then, but at 80 years young, mom is doing great and still able to use the bathroom with assistance but still...I say give them a chance to see what they can do is motivating to be around loved ones (even a pet like a cat).
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Ren1935, did you ever consider going into an assisted living where you could remain together, but you would have the assisted living staff help you so you didn't burn out? Just wondering if that can be a realistic consideration for my parents.
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I often think how lucky I am to find to place for my spouse that cost less than $6000 a month. I see the cost increasing but I feel he couldn't be in a better place. Of course I have to admit that I am hitting panic mode when I see what I once thought was a decent savings disappear. He has ALZ, does not know anyone in the family and would be furious if he knew what his care is costing. I have heard from others how their long term care plans have not covered half of what they expected.
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Karsten, The cost for long term memory care at the facility where my wife now resides is $3950 per month but that is cheaper than Hiring round the clock care for my wife in my area. As I stated earlier I am suffering from long time care burnout and that can happen before you really realize it. She has been there now for about three weeks and I am just now just beginning to return to a somewhat normal status. Probably some time to go before getting to a "normal" status.

Ren
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This happened with my wife. She had any infection with which she became septic, got endocarditis, the had a stroke caused by "vegetation " breaking off the heart valve and going too the brain like a clot. She lost use of rt. side limbs. This was the 5th time this had happened and I was expecting a recovery. During her 100 days, she returned to the hospital 3 times for blood transfusions with hospital stays of 5 to 12 days searching for blood loss. Each time this set her rehab back. Finally due to many reasons LTC was decided. Since she was eligible for a Medicare SNP PPO, she already had partial Medicaid. Made transfer to another facility much easier.
My wife is 57 had been disabled since 2005, I'm 63 and have been disabled since 1996 due to a back injury, then 2 failed surgeries. My wife is bipolar and had multiple health issues. She weighs about 60 lbs more then I do so it is impossible for me to move her around. I think if we were able to get her more therapy, she could regain partial use of het right limbs. This may be wishful thinking but I strongly think this is possible. No way for private pay so she's stuck in limbo. It looks likeLTC for life.
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Not to be skeptical here, but I wonder if the staffs at rehab centers need to be extra conservative in recommending what the next steps should be in order to cover themselves legally?
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Yes, all of the advances is preventive care mean that we are outliving our savings. In the past, a non-working woman took care of aging ancestors, who usually didn't live all that long as there was no Medicare/Medicaid and they did not take oldsters to an MD no matter what was wrong. When my 86 year old great grandmother with dementia quit eating, no one called a doctor, they just let her die. I have a good income and two LTC policies, but I am not sure even that will protect my savings if I develop dementia (I am at risk as I have one copy of ApoE4 gene). My ex-husband has dementia and is fast spending down his portfolio at $15,000/month for nursing home/memory care plus a paid sitter for 12 hr/day, $14/hr. He'll have to move to a Medicaid facility if his money runs out. My RN daughter has taken him off all preventative medications, which he probably wasn't taking anyway. I myself am thinking of doing the same because a fatal stroke, heart attack or even cancer is beginning to look like a better way to go. My second husband lived for 3 weeks after a massive stroke at age 72; I consider him one of the lucky ones.
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well timed discussion for me as well although a slight tangent. As detailed before on other threads, my alzheimers dad was hospitalized a couple weeks back for aspiration pneumonia then transferred to rehab facility for the various therapies. The speech pathologist thought he should be on a thickened liquid and pureed food diet to lower the risk of aspiration again, though they said it is just lowering the risk. Dad not crazy about that.
Anyway, yesterday the OT, PT, and ST met with my mom and me and said based on their evaluations, my dad needs 24 hour care, thus long term care. My own naïve hope had been that he could go home for a while as he still is aware he is not home and yearns to be. The staff says they always see families wanting to take their loved one home for at least a while finding out that it is just too hard. My mom had hoped to move in with my dad to assisted living, but the staff thinks even that would not provide the care my dad needs. Although they conceded that different AL facilities offer different assistance, the variable paying what you pay.
My parents are not bloody rich, but have the funds for probably a few years of care, depending on what the costs would be. Kind of like Ren1935 above. I guess the options are going home and hiring in home care, though I know that would be VERY expensive. Going to an assisted living with mom with extra care available, if that is possible. Or long term care, and then the question would be regular long term care of memory care.

The other option is I have the personal means to stop what I am doing and be there to take care of my dad at home as a full time caregiver. The staff at rehab thought that was noble, but said they hear people say that all the time and it rarely turns out well. In my case, I feel my dad would be the easy part. My mom who is physically healthy but neurotic would be the hard one to tolerate.
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Barb - wonderful discussion, thanks ever so for framing it. One of the difficulties in dealing with the maze that is Medicaid and Medicare is that one really has to - to me - change how you think. Most of us - especially women- are directional thinkers. But the world of the M&M’s, insurance, healthcare, Hospice, etc. are all about binary thinking.

Trying to deal with like Medicaid LTC eligibility and going about it directionally is going to mean there’s going to be delays in getting them approved or even in getting them eligible; forget about spending time and energy on the nuances of how & where mom could have spent a cashed in CD. Either it’s accounted for or its a penalty, it’s a binary approach. Either they get the whole life policy cashed in or their not eligible, it’s binary. Either they show need for skilled nursing care or they don’t, it’s yes or no, binary. That’s what Medicaid, insurance etc are going do. Whether it’s fair, kind, rude, whatever is besides the point, you need to view the situation from the yes/no, in/out binary decision making of the M&Ms, insurance co, etc.

To me what’s the simplest way to start thinking binary for a dpoa is assume they are going to outlive their $, need skilled nursing care and will apply to Medicaid and plan for it. Gabriel Heiser’s book “Medicaid Secrets” is really priceless in giving an overview of the whole process as to how the system works. ISBN-13: 978-1941123o41
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My wife fell, broke her hip and had a new hip replacement a little over two months ago. Thank God we had saved a little money over the years to tide us over until we were called by God to come to a better place. But! that money will only last for a very few years. Then what? Sell the farm I would guess. We are FAR from being rich as I believe most middle class folks are in this country. We transferred her from rehab to a private facility who did not accept Medicare. Check from bank only. Thank God we followed this route as she is still getting PT as well as care that I could not give her at home. She, as I have mentioned in previous posts, is in the advanced stages of dementia and chemo about a year ago and this time being put to sleep for surgery has caused her to slip even faster.

I had looked ahead before the fall for senior living services and had placed us on a waiting list for the facility in which now she is being cared for. The first day after being placed in rehab, after surgery, a room became available. Who would have imagined! I do believe a Greater Power was at work here folks and I am very thankful. I was in a total burnout phase after caring for her for five years and the last year being a very difficult one.

She isn't doing great but is learning to walk again. Only time will tell our future as right now it appears very dim.

Just thought I would share with you folks as that seems to help.

As a side note, both of us are eighty two years old and have been married sixty two years.

Ren.
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Good points Barb! And though I know it’s not exactly on the same vein, there’s a related aspect to this that our family experienced. When my mom was transferred to rehab from hospital post stroke, there was huge optimism about recovery from all involved, from social worker to nurses to doctors to therapists to staff at rehab/nursing home. This despite the fact that it was a huge hemorrhagic stroke that she didn’t wake up after for 3 weeks. As a family brand new to all this we had no idea what to expect. I clearly recall telling the admitting nurse at rehab that mom was in a diaper not due to loss of bladder control but because she currently couldn’t signal anyone quickly enough to help her to the bathroom. The nurse smiled and said “don’t worry a bit about that, those diapers will be gone in no time, we’re here to fix that” We were told she’d be back walking and eating in a few weeks. So therapies began, and mom worked very hard at it as she wanted to come home so very much. There was literally zero progress. She couldn’t do one thing for herself. Little speech, no sitting up, no rolling over, couldn’t swallow, and the list goes on. The talk turned to stopping therapy and her turning into a regular nursing home patient. The Medicare paid days ran out and it became private pay. There was long term care insurance that also ran out. My dad had to take steps like getting rid of one car to qualify her for Medicaid as we were now told this could be a long haul. And it turned into 4 nightmare years, for her far more than us. I didn’t mean to write this much, and know I’m veering off from original post, but think it’s important for families to also be prepared that sometimes it doesn’t go the way the professionals think it will, and recovery doesn’t happen as expected or at all. The implications are enormous financially and in every other way.
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Thank you for sharing! Knowledge is power.
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I have never encountered one helpful hospital or discharge planner even after hounding them

Once the medical decision to discharge happens they want the patient out and they don't care where they're sent

Even now that she's immobile the hospital planner thought I should be able to transport her in my car instead I had to pay $150 for gurney transfer

Even the hospital's senior network didn't have any suggestions for placement but referred me to an 800 number in another part of the county

Another recent poster is lamenting the lack of medi-cal facilities in the OC

Neither mom's memory care or the NH she was recently in while she was being treated for sepsis take medi-cal

If she outlasts her savings which is becoming a real possibility then I don't know what I'll do
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CW, that would be the ideal! Maybe we could create a "questions to ask when your parent is transitions from hospital to rehab?".

One of my cousins faced the issue, again and again, of her father being discharged home from the hospital. He was "fine". (No, he was mentally ill, PTSD from the Burma Road in WWII, dementia, etc". But he knew who the president was and what day it was. And his PCP said "nice people don't get dementia". Oy.

My cousin's husband finally tracked down a SW at the hospital who sent in a psychiatrist. Once "Dementia" was a dx in his chart, everything changed. They were able to get home care, etc.
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Whether it is a hospital, rehab, AL or NH, they all probably know of some things that families tend to drop the ball on over and over again. Wouldn't it be nice if each of them had their own one page handout outlining the most common issues with clear, simple bullet points?
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GA, we were SO blessed to get this particular lady for discharge; she's the one who told me that her mom had broken her hip, standing in a room with three RNs, one of whom was her daughter. And who told me that sometimes the break causes the fall. If we don't share our experiences here, no one learns anything!
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Barb, always good advice from you.
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