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At a crossroads, taking time to think things out



Well hard to believe, but Ray's aide Pat, our angel from heaven, is gone for good.....at least officially, she did call when the blizzard was just starting from the local supermarket in case we needed anything. She took such good care of us, was like family really. Meanwhile, Dominican Sisters have no other aides available (we're talking a month now) and according to their social worker and nurse (who keep coming anyway of course), everything is changing in NY State since Jan 1 as far as in-home agencies. NOBODY knows what will happen in the near future. They are being forced to conglomerate into one big cartel or whatever they want to call it; Pat got caught up in that duststorm and decided to seek greener pastures, she saw the writing on the wall.


Meanwhile, I was scheduled for a visit with a different social worker at the psychiatrist office a couple of weeks ago. I found out why they wanted me to read The 36 Hour Day, because that book really pushes day care for the caregivers sake, to get some relief so as not break down themselves. Having strangers in my home constantly was not as wonderful as I imagined it would be either. It was way too undependable to schedule all those lunches with old friends I envisioned, so all I would do was go browsing at the stores and buy way more impulse stuff than I would if Ray was with me. The social worker hooked me in by mentioning the nicest SNF on the East End; I know it as the place everyone wants to place their parents when the time comes. They just started a day care service, actually they call it a Day Health Service, that sounds so much better than the town senior centers. Of course there will be nurses on hand, and all of Ray's therapies available, lunch every day and they have their own private bus to come pick people up. Lots of activies each hour, although that's not necessarily Ray's thing. I see bowling, golf and badminton, but don't think he would be able to do that. Maybe Bingo or cards, music, they have a lot of that too. He has become a bit more sociable since the stroke, but still picky on who he hangs out with. They acted like I would sign him up five days a week off the bat, but no way would I do more than one or two to start, this is really scary. I mean it's not just a town center, but a nursing home. I feel like I'm abandoning him, even though he gets to come home at 5. But that was one of the main points in the book, how it just has to be and knowing that I would feel that way.


I wouldn't be considering this at all except that my unemployment ran out the beginning of the month, and although I'm willing to live as cheaply as possible, that still may not cover all the bills over the long term. I have a job I could start anytime, it pays very well for five hour shifts but it's on the weekend; and the day care centers, and even the in-homes aides for the most part, just don't do weekends. My biggest fear is accepting a job and then not being able to do my shift due to no one to stay with Ray. I could start early social security in three years, but that's a long ways off right now!


I looked into getting paid for being a caregiver, since that too was mentioned in the book as a possibility in some states. The doctor's social worker said yes, you just have to get certified as a CNA, but the other social worker called DSS and they said that was true UNLESS you are a spouse or parent. Darn.


I'm stalling a little, so far made an appointment March 8 to tour the facility. Told the in-homes what I'm thinking and they sort of encouraged me to try it, since they can't guarantee when or even if I will get another aide at all, not to mention someone I like and trust. Oh well, Ray is calling, time to get back to work!


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Yes it does, but it involves social services. It's actually sort of expected, if not encouraged, as the best way to pay by the day cares; anything to put off round the clock care (ie $$$$) which if not for me, is what Ray would need. It's in their interests to keep me as healthy and sane as possible!


Since this is southern NY, they charge $150 a day and $64 for round trip transportation per day, if needed (since it's a half hour away, I won't be driving him too often). Time will tell, like I said I'm going to start out slow..

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I don't envy you having to make this decision but I hope you make the best one for you both. Either way it's going to be hard for a while until you both settle into your new routine.

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Do you have to be on medicare, which Bob would be on in another year, or do you have to be indigent (really low income)? He does get good disability benefits, so we are not indigent at all.

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Glad you asked: "Indigent" actually means homeless (I know because I did a lot of work with the Salvation Army); it is not anywhere the same as "low income" (meaning below government standards of poverty level, which is still over $32,000 for a couple, meaning you have money coming in but probably just Social Security and not much else). Ray and I both made a really good living, and stayed at our jobs a long time, but they weren't about the benefits and we never anticipated getting old and/or sick. Many seniors use Medicaid if they don't have a pension or major savings, it's nothing to be ashamed of; we all paid taxes into it, although a lot of it does go out to those that didn't, giving it a bad rep. It's not tied into Medicare automatically, but since Medicare makes you pay at least 20% of your medical bills now,it can be a big help when the time comes. And Medicare DOES NOT pay for in home aides, day care, nursing homes or anything in that vein, which is why people need Medicaid as a backup. Believe me, Ray didn't have his stroke as a plan to milk the system, but we have to do what we can to stay afloat.


We couldn't get Medicaid at first when Ray was getting his measly temporary disability plus I was still working, but once that ended after 6 months or so, all our social workers basically forced us to apply. Nobody wants to be on the dole, but nobody wants to go broke from medical bills either. Medicaid is JUST for medical bills, hospitals, nursing homes, meds and so on. I'm surprised no one ever sat you down and went over it, it's important to know. If not now, maybe in the future.


All the social workers I mention seeing are from Ray's in home, his doctor's offices or from the hospital; they aren't from Social Services (which is what some people still call "welfare"). It's a safety net to prevent homelessness, proactively. I did all the paperwork in the first few months, but Ray was on my COBRA for the first year, so didn't need to use it...then when he turned 65 and went on Medicare, it was what all the social workers bugged us about....Medicaid will become your secondary. Otherwise you will have to pay part C, which is hiring a company like Empire to help with deductibles. If you can afford to do that, that's great! I know you have some kind of good deal with Bob's old company so maybe you don't need any help, but as I said, the government would just as soon help out a little than be totally paying everything. And if you indeed become "indigent" that's what will happen. I know lots of people that live in SNFs because they don't have anyone to take care of them 24/7. The government's making out on us caregivers, either way!


In another year, feel free to ask me about Medicare too, it's another whole can of worms.

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Colleen: such tough decisions. I too have considered Day Care for Bruce. But here, the ones available that I have toured are truely Day Care. Yes meals, but if you can't do things independently, you sit and watch TV or the other participants.


My goals going back to work were pay the caregivers and my health insurance. When that becomes impossible, I will just stay home. Like you, I do take advantage of those things Medicare will pay for - the yearly PT, OT. But I too need help here. Medicaid is also in the works for us - but we had a few more things to do first and then there will be the 3 year look back period.


I too do not consider it welfare. We could apply and then place our spouses full time in a SNF. It it good to know we have alternatives to consider. The only way I can get out from under the Health Insurance is Medicare for me, but again that is five years out. I have to work 40 hours to get my insurance paid and that is just not reality.


Glad you had good, solid advice early on. Gave you some breathing room and time to think. In those early years that is so important. Let us know what your decide and how the tour goes. Oh, and we have freezing rain here - throughout the night. Glad you missed it. Debbie

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I used to sell food to the Senior Nutrition centers around here and I know what goes on for sure. Nothing much, except lunch, Bingo once a week and maybe a group of friends that stays after to play poker. Somewhere to go for the older folks, but someone with disabilities would be a fish out of water. I am so happy that I was nudged towards this newer type care, it seems to have something for everyone. It's called Medical Model Day Care, you can get dental and other health services, hair cuts and grooming, everything you would get if you lived there.


Now they are urging ME to go on Medicaid too, since I don't have any income at all at this point. Although who knows what the next few months will bring. Medicare is seven years away for me. My COBRA should technically end on the 28th of March, but lo and behold, NY has a 15 month extention mandated beyond that, so think I'll try to stay on it a bit longer, since I'm just about done paying my high deductible for the year. Too many changes at once might be the death of me!

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I hope you are able to replace the lady soon and I know my wife couldn't be the paid person to look after me when we were told she could be but it never came to pass. Either I made too much money or she just couldn't get paid for the job. We never thought about it any more and it's been 9 years now.


We didn't qualify for anything including food stamps or any government program what so ever. We made it where I got better and didn't need them.


Maybe your case and your state will be different!

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Well Fred, if Ray could just work on it and get better, I wouldn't even look at my rear view mirror as I sped away from all this junk! Only two years for us, so who knows. Sure have learned a thing or two, though.

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