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The saga continues



Ray hasn't been walking, except up and down the stairs for the bedroom, all winter long. And popping in and out of the car, but lately he seems to prefer waiting for me rather than coming in the stores. Hasn't had the AFO on even once. Then the other day I asked him why he doesn't get into his wheelchair by himself anymore, which he can do from the low couch in front of the TV. It was good to know I could leave him there and that he could get to the front door or out the ramp in the garage if he needed to. By the look on his face, I realized he is getting very weak and unsure of himself. And I know it's from sitting all winter long; I remember how I felt when I didn't go to the gym for three months last summer. Last time he tried to get up, while I was outside shoveling, he ended up on the floor, I guess he's afraid to even attempt it anymore. So I announced that he was going to walk around the house every day from now on, and he was actually into it. He used to work out in the basement before the stroke, so it's not like he's totally lazy!


First day, I pull out the quad cane, and he couldn't even make it around once. Twenty steps, if that. He used to do three or four laps, over 100 steps, but after this short walk he was ready to fall down from exhaustion. It was scary! Plus when he finally sat down he was breathing like he had just sprinted a mile. After a couple of times like that, I realized he had to go back to the hemi walker and that helped a bit. He did a full lap first time after that change, and is up to one and a half now, after less than a week. But still ready to collapse at the end. I skipped yesterday due to the drama of me going out to lunch, hope the break will do him good.


So speaking of lunch, and our wonderful aide. She had called off sick, four days in a row, and her office only found out accidentally the fourth day, which was Monday. They called here looking for her, after she told me she was going in to tell them about her time off last week. Another lie, obviously. A meeting between her and her supervisor was promptly scheduled for Tuesday, the day before my eagerly awaited lunch date with a new friend. We've gone out beflore and she's been over the house, but Ray was always there with us. This was so exciting to me, to go out on my own and enjoy some girl talk, with no interruptions. I called Tuesday morning to see if I should cancel my plans and they said they'd call back later, after their "meeting". I didn't hear from anyone until the end of the day; then the manager called to say great news, I am changing her hours to 12:30 through 4:30. Those hours are great, but all I could think about at the time was my lunch date which I had scheduled planning on her being here 11 to 1. The greatest news would have been a new aide, but whatever. So I talked to Ray about staying by himself for a bit, and pushed the time to meet my friend up to noon, and figured I had it all covered. Plus I could stay out a little longer instead of rushing home before 1!


Ray didn't want me to unlock the front door, he was telling me he wasn't letting her in, but I told him just let her in and then you can try to send her away if you so desire. I figured let her deal with it. So he relented, I unlocked it and went on my merry way. I called home a little before one, and the aide answered, and we went over her new hours again, just to be sure. I told her I'd be home way before 4:30 so she could leave any time after that, in case she wasn't fully recovered. Then just before 2:30 Ray called so I told him I was just leaving, which I was. I had told him that was when I would be home, and he never forgets what time it is.


I get home 2:45 and to my surprise, the aide was not there. I questioned Ray the best I could, he definitely told me she had come 15 minutes late as usual, despite the new improved schedule, and that she had left around 2:30, right before he called me, but he didn't know why. I call her agency and they too were mystified. They call me back about 15 minutes later (it's now 3:30) and say oh she went to pick up her prescription at Walmart for her leg. And if you ever want her to pick anything up for you too, just let her know. Ummm, I thought the reason she came was so I could go out shopping myself? While someone would be with Ray so I didn't have to worry? Now it's turning fishy on all levels. So as I'm on the phone, the aide knocks on the front door as they said she would, and I don't know what to say to her, just told her to go home since I was here now. Then I stewed about it all night.


So today I'm writing down everything that has happened since she first came to us, including the lying about her place being closed on St Pats. I mean, she's not even a good liar, for someone who does it so regularly. It's actually pretty scary when I think about all that she has pulled in less than a month. I will call her office to tell them I am faxing the letter to them, with cc's to Guildnet (Ray's main LTMC agency, who oversees the aide situation) and also Social Services so they can check any payments that may have been made fraudulently. Speaking of which, can you believe that I was telling my mother about all this yesterday morning and she got on her high horse and started saying, that's MY money the government is spending! She said it a bunch of times, and I finally had to tell her that if it wasn't for in-home care, Ray would be in a nursing home and the government would be spending a lot more of HER money. She watches way too much Fox News. Just another annoyance in a day full of it.


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omg -- no ethics on any level apparently . who would want any of that in your home ? geez….my family keeps encouraging me to fid someone, who ??? for crying out loud?? with dans "pain" issues i have lots of med stashes and nice things in general - even meat from the freezer is valuable… i will eventually find someone but not in a hurry as of yet…… so sorry , yes get rays ASS up and walking or i am gonna call him…. nancyl

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Hi Colleen, time for the aide "bye, bye". She is causing more stress, then helping level it off. My husband taught me that people take your kindness for a weakness. It is sad that people do not respect and have "values".



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So I called the agency this morning, and inquired about my aide situation. They told me that she told them she asked Ray if she could go out and he said yes. I said look on your paperwork, he's marked as aphasic, so how can that be? And even so, I called the house around 1:00 and she didn't ask me then, and she could have called me anytime later as she usually does when the shift is ending. So I said, well I've caught her lying about other stuff too and the lady got on MY case and said, you can't tell us that now, you have to tell us the day it happens. And I said well I'm not on CD-PAP so why is it my responsibility to micro manage her? We really didn't get anywhere except for the fact that we don't want her anymore, she said it like a threat but I said that's fine with me. Ray swears if I want to go out to lunch again he'll stay home by himself for a couple of hours. We'll see.


Anyway you're right Yvonne, I'm always too nice to borderline losers because I feel sorry for them. She obviously thought she could get away with murder, because i was always offering her coffee and cake, now for all I know she's out of a job. Can't say she didn't bring it on herself though. And you know, I still haven't set up the SpyCam although most of our stuff that is valuable is locked in one drawer, and I have the key.


Oh and Ray walked an extra step or two today before he pooped out. It's in the 60s outside right now, the whole neighborhood is doing yardwork and I'd like to get out there for an hour or two myself, but Ray's sitting on the couch like he's exhausted. He's getting there though, I think; can't wait until he is comfortable with the cane again.

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I had to private pay when I was using an aide for Lauren, but I will say that no agency I've used would have tolerated that for a minute. If there was one no-show, it was goodbye to that aide for the whole agency, not just me. Leaving in the middle of the shift? Unbelievable!!! I'm not saying our situation was perfect--we had our issues. Overall though, we had decent help and sometimes excellent help, which allowed me to do just what you were hoping to get out of your time away. It's sad that you've had so much trouble getting help.


I'm glad you're working on getting Ray stronger. It is so easy to lose and so hard to get back. Sounds like he's already making some progress. ~~Donna

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Well, that lady would be long gone and so would the agency. I know you have to accept what you can get but those people are not helping you. They are playing games with someone who is disabled. I guess I am lucky but even so, we have to keep up with all the paperwork. Our helper has to fill out "care notes" every time, and he calls in and out with his hours. He would never leave Larry alone unless he called me, and never has. There is so much Medicare fraud that the rules are strict when it comes to these agencies. There are more and more coming up as it is a booming business. That is probably because it is cheaper to keep someone home with an aide or helper than for the insurance companies to pay for long term care.


Larry is the same with the weakness issue. He sits too much and most of that is my fault. The other thing is he has had a cold for a long time and not eating. The weather has not cooperated this winter and I have not put him in more therapy yet. I am determined like you to get him going. I just wish I had more energy myself!


Good luck with Ray's recovery and getting an aide/agency you can trust.



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sounds like the supervisor should be gone to… geez-- i don't want to sound all uppety -- but in ND that is no where near acceptable and no agency would tolerate that… In NY it seems like the "norm" scam it if you can… please that is not a insult to you or anyone who lives in NY, but certainly seems like no one wants to work, and then cries they have no job, and the unemployment is running out -- oh no… umm there are jobs - but my god, you got to actually go to work and stay there to get a check… and again sorry for the generalization…but i am so angry for you… cause if you where here it would be a done deal. in my case - i would be paying out of pocket, but the there is a whole staff of soc. service employees ( who get benefits and are county employees) who would be taking care of ray … I wish we qualified…. sooner or later i will hire help and go to work - since it is obvious my "retirement" plans are not working out.. if i gotta stay put in ND all the time i might as well get a check...

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We have been going through the same thing with my Dad. My oldest sister is in charge of all that stuff but she has a much higher tolerencey level with people than I do so when she was having issues with the last aide it took her a while to pop! The aide was actually telling my dad that he didn't need "all these people" in his home all the time, which were my two sisters who are his full time caregivers. She told him we were discussing putting him in a nursing home and that he shouldn't let us do that. All sorts of stuff! It was crazy! Finally when she refused to wash my dad's private area one day my sister told her to leave! She left but agency was giving us run around about new aide so it was time for me to step in! Some one had told the aides there that my sister was a little hard to deal with but after I got off the phone they realized she was much easier to deal with than I was. We now have a wonderful new aide. She is there on time and doesn't have an issue with anything my dad needs done. She comes 3 hours in the morning and 1 hour in the evening. Dad won't even consider eating supper till she is there to feed him! You just have to be very stern and if the aide is not what you need send them on their way and ask for another one! Don't let their poor performance and the worry of them loosing their job come before Ray's well being! If they chose this field as their profession they should be held accountable for their performance! Hope he gets his strength back! Keep him moving, we are going through the same thing right now. Mike is weak from the winter of sitting and we are working to get him built up too! God bless you both! Love you guys!

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Thanks all, you have given me a lot of ammunition and courage. I have a call in to Ray's main agency, who have been great so far; I will report back later today. Still have Social Services AND the state hot line as back up, I sort of like this multilayered approach. Like I said to my human resources person after I involuntarily stopped working "I have nothing but time right now!"


And Nancy, I'm glad you've "learned the ways" of NY (as Ray would have said). Now you know why I'm the way I am ;-)

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Update, not sure if this is the end of my saga for now:


I was getting into the complaint groove yesterday morning, waiting to hear back from our main agency about the secondary aide place. Suddenly a knock on the door, I'm thinking Jehovahs (although no, they came a half hour later instead!) A new aide, very nice, says she is scheduled today from 12 to 3, did I know about it? Because it's not the first time she got sent unawares to the client.


So I try to fit her into my day, just got home from the gym and still not changed. House sort of messy although I'm glad most of the dishes were out of the sink. She calls her agency about how I wasn't expecting anyone and that I had promised Ray a shopping trip this afternoon, so we'll have to cut the visit short. Shortly thereafter, I get a return call from my main agency, who subcontracts the aides, and the pieces of the puzzle start falling into place.


The spurned aide has now said that I never gave her anything to do and that Ray doesn't seem to need that much help. Like I'm a slacker or liar. My main nurse says, you have to make a list of things for them to do (showering and cooking come up, neither of which is going to happen unfortunately, but I can figure out something else) so I promise to get on it. I really, really don't even care...I have to ask finally if all this in-home care is actually part of Ray's possible Long Term Managed Care/ SNF care if it comes down to it. That's what I always though, how it was presented to me in the beginning; I didn't ask for their help as I recall. The aides seemed to come as part of the in-home therapy. And that's the only reason I'm going through this agony, I thought there was some kind of requirement to keep tabs on us. And I'm also shocked since this is the first time I have been questioned about his ( and my) capabilities. Maybe that's a good thing, I don't know, that we're getting more like our old selves. Maybe they'll take away the aide, and make my life a little easier. Or else, blame it on Obamacare and cost cutting, who knows with all the changes in agencies, I can't keep track.


Oh and the aide's agency called too, to apologize for not alerting me to the aide's arrival, and she was much nicer this time. She told me they were sending this aide because she was the BEST they had. Awhile later I was talking with the aide and she tells me that she just started with them, and had wanted to be with Pat's former agency but she hadn't passed the required state qualifications yet, or maybe they had further qualifications but something like that. Funny what you find out with just a little chat! No wonder the other aide's lying wasn't a big deal to them.


OK she'll be back Monday, if anything worth telling happens I'll see you here then. Remember, no news is good news! Thanks to all for your insights above, guess I'll just let this roll along by its own steam and see where we land. Tired of fighting City Hall!

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OK: good news I hope. But go back to your thinking the house was sort of messy. Colleen that is exactly why you can use the help. I know you and Ray were going out, but that is when you say could you tidy up a bit and do up the dishes, wipe the counters. Next time leave the laundry. Snacks for Ray and his drink. And has you get more comfortable ( spot both of them a few times) walk Ray a bit or get him outside for a ride.


You don't clean for them to arrive. They are your help not your guests. Tough to think that way I know, but it will come with time. Check in. Debbie

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Thanks for helping me start my list. I'm not used to having projects like this any more, but I am going to type up a sheet for her before tomorrow.


Yeah that's always my problem, they're in my house so I treat them like guests. I need to take lessons from my sister in Calif, she has help for everything and knows exactly how to handle it. To me, this is so weird. But after all I've been through, just one more hoop to jump through I guess.


They are not allowed to take Ray for a ride, but I did already show her how I walk with him, and how I get him down the stairs, and she was amazed at how stable he is. She said she's had other stroke patients that she would never attempt it, but this wasn't so bad. But she was telling me things she's supposed to and not supposed to do, and one was that if Ray did fall, she wasn't allowed to get him up; she has to call 911 and have him taken to the hospital to be checked for fractures, so I don't know if she will take the chance. Pat did used to get him up and going but she was fearless! Sitting in the driveway watching the school buses drop off the kids will probably be as good as it gets for Ray.

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clean the bathroom, wash the floors, wash the windows, dust, clean the cat box, god i could go on for about a hour..lol … -Dan the clean freak ..lol type that list girly..

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Anything that you haven't done that she can do, let her! My Mom had a hard time with that too. She always thought she should have the house clean for them to come in! Not true! Let her help!!!! Mop, she can mop, lord knows I hate that chore! LOL! :) 3>

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I think the aides are not just for sick care. Caregivers don't have the time they need to do everything, with their responsibilities. The aides are supposed to help relieve that work load, they are not nurses, who would just come for medical reasons. Of course, they bring the food/snacks and help walk/toilet. Please STOP entertaining your aides with refreshments and making friends with them - they are employees, and you are not giving them the cues they need to know what to do. Think of that dog whisperer who goes to people's homes with dog problems. Invariably, the dogs are acting out because they don't have a pack leader(owner), and so are like lose cannons, doing whatever they can think of. You are the pack leader, they take their cues from you! They know what to do and how to act by the info you give them.


It is true that you let things go with the other aide, that should have been reported right away - I see her point with that. Now they've already paid her for days she didn't even show up for, creating a medicare mess.


My mom's neighbor has aides that come and vacuum, do dishes, mop, change beds, wash.

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That's me, the pack leader! Thanks Sandy, I will visualize Cesar Millan from now on, and if they disobey I will jerk on their leash sharply while hissing at them.


Anyway, she didn't come back today, when I finally called they said she chose NOT to be our aide because there are no buses running near our house. When she left we saw her walking down the block; Ray wanted to see what kind of car she drove I guess and made me take him to the window. Couldn't figure it out when I saw it, but I guess that's how she gets to her clients. I thought her ride didn't show up or something. Guess she has some major limitations of her own! Not sure why they didn't mention that up front, we're way out in the country.


Meanwhile I spent time this morning making up a list of things she could do, things other aides have done so I know it's OK. Vaccuum (brought the machine downstairs), dust, swiffer, few dishes (not a whole sink!), bathroom surfaces, Erase pads on white surfaces, laundry. A few other off the wall things just in case. Ray, all he needs mid PM is a soda refill and maybe the bathroom but not usually. It's just weird, I've been having aides even though through another agency for more than two years, and I never had this kind of trouble. Once again, maybe Obamacare regulations?


So I didn't know it was up to them to pick and choose, and again with the attitude. They kept switching me back and forth, and all I wanted to know is: do I have to have an aide to stay on Long Term Managed Care? So far no answer, they said they "think so" but they couldn't say and the nurse at the main agency still hasn't returned my call. I told them I was always under the impression that the aide was for my sake too, and they admitted that was true. Now they're sending someone else Weds, gee I hope she approves of us. I am so sick of it all, if only Ray was just a little bit better.

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And Colleen, that is truly it. Ray is so almost there. In my opinion, he is an aide's dream. That is why I just don't understand any of this, except agency problems. It has to be either NY or just your location - smaller population, therefore lesser services available.


But you have your list and are prepared. I can only hope at some point this is going to work out - hopefully before you throw the vaccuum cleaner out the window - LOL. Hang in there! Debbie

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It's mandatory once you are on Medicare, with Medicaid as your secondary (co-pay) insurance. Ray turned 65 two years ago, so I took him off my COBRA and this is where we were steered by our advisors. It is to keep the disabled at home rather than in a nursing home, since it saves the state tons of money. Covers home care as needed. You can google for more info. I wouldn't call myself "afraid", rather there appears to have been recent changes due to Affordable Care that I have yet to figure out.

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Colleen, sometime this late summer, Bob will go off cobra from his work, and onto medicare. We will not be on medicaid though, as he had good benefits. I will still be able to stay on cobra till sometime in 2015, when I must change. What about those advisers? Maybe they can tell you if you must have home care. Or the social security office that talks to you about medicare and medicaid?

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Well the head nurse has not returned my call of inquiry so far; I am suspecting they are marking our case "Difficult caregiver" at this point. But another aide is scheduled to come by later this afternoon so after I meet her I will fire my next round. This time they emphasized she was coming to see if it's a good fit. That's if she shows up at all. Hope she has a car at least.


Medicare Part C, you usually have to pay a premium to an outside insurance company (like AARP) to cover co-pays, it's not part of COBRA. Usually around $300 per quarter. Or else take your chances and pay 20% of every medical bill. Unless the old company is picking that up for you too? If so, that's very generous of them. Also Social Services is Medicaid and Social Security is Medicare. There's a lot to learn once you get involved with the government. No wonder my head is always spinning.

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It is important to mention that you must read your Medicare booklet cover to cover. Over 65 automatically gets Medicare A. One has to decide to enroll in Part B. Supplements are called Medigaps. AARP's instructional kit is very good, but they won't send you anything until someone is already on Medicare A, so it is important to mark the calendar to call AARP after the Medicare start date and get that sent to you. Medicap Supplements vary from state to state. Our Medicare Part C runs $450.00 a quarter.

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Thanks for that info, Debbie, I managed to skip that step by popular demand. It is REALLY complicated, like everything with the government, and you have to either spend days studying it, or hire a specialist to help you through. Many of the choices are once a year, so if you mess up it's a long time until you can change it.

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Forgot to mention last night: Aide #3. In her 70s, very loud, not unpleasant but never stops talking. Sorta like Pat! Luckily Ray grew up in a loud family and is comfortable with that. Not me though, I didn't want to go out on the first day but I had to go upstairs to my office for awhile to get away from it. She is glad to sit and watch TV even though I told her they wanted me to give her things to do. Says Ray watched all of her and her husband's favorite shows, how lucky for her.


She did get up and do five things (to some extent, at least) so she could mark them on her time sheet. She has a car at least, and lives nearby. And a husband and seven grown kids, and very much into her church...she already can't work next Friday because it's Good Friday. Oh and guess what, it's her first day working for them and Ray is her very first client. The good news is that she has worked in a couple of the local nursing homes as an aide and I can tell she has SOME experience. Although watching TV while on duty, is apparently part of it. We'll see if things change when I'm not around. She did ask how I liked to mop my floors but it might have just been because she was admiring how shiny the wood was. I really don't like when they come over and keep commenting what a nice house it is. I always feel like they're casing it!!


But the most interesting thing was, she told me they now have to call in the office from my phone when they arrive and and again when they leave. And now have to leave a copy of the time sheet we both sign with me at the end of the shift . Brand new rules. I know without anyone telling me that's due to the first aide's scams. Guess they believed me, just didn't want to admit it out loud. Wonder if she's fired now or just on probation? She lives around here, maybe I'll run into her at Walmart someday ;-)

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Again you ring the Cherries - as our Dan would say! Who is better than you and Ray? LOL. OK, now down to business. You give her a chance and with the loud volume, now you definitely have a reason to GO!


Colleen: you have your list. And I know you could care less how much she does in your house. You want Ray safe and warm. And yes, you expect her to get him outside. So you leave her the list. You do want to comment on what she does and does not accomplish, just so she knows you expect that list to be completed. If Ray is OK with her, you take what you get. Debbie

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