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Ray's imminent independence


1967stingray

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Ray has been doing some amazing things lately. Unfortunately they are usually inspired by anxiety or anger, but I’m finding that he is capable of a lot more than he lets on. I may have told you I found him in the bathroom, on the toilet, one day recently when I didn't come down right away? I asked him a few days later how he did it, and he showed me: He leaned on the handrail with his elbow to free up his one good hand and can open his pants by himself. He always wears jeans, even in the hospital which they try to forbid, so it's not that easy...not even for me! That button can be tricky, but he is very dexterous. Then the other day I went to pick up the van at the mechanics, which is only a few minutes away; I didn't want to pay the extra fare for the cab, so I left him inside waiting by the front door. He wasn't happy, since cars are his specialty, he really wanted to go with me. When I got back five minutes later, he had gone down the ramp in the garage and opened the big door and was sitting in the driveway waiting for my return. He also is still the only one that can get our new weedeater started. And he installed the new battery on the lawnmower, or at least told me everything to do, including finding the right tools. And on and on, so much like his old self.

 

Anyway the social worker was here the other day, and we were talking about the lack of an available aide for us. They know I’m thinking of dropping them when the state program ends in the next few months, due to the Affordable Care Act. As we’re talking, I’m telling her all the things I told you above. I also told her that I feel we're sort of borderline as far as Ray being alone. I told her about Debbie and Bruce, and how it’s working out for them. I left Ray for three hours when I went down to the BBQ on Labor Day, same thing with the ladies neighborhood functions when I am just a minute or two away, he has been just fine sitting with the TV for the afternoon. I know this is because he chose not to go, so he was in a good mood and maybe even proud of himself; not the same as getting left behind with an aide, like a child. Luckily he never lost his ability to use the phone, so I’m never 100% nervous about it. Neither of us are used to strangers in our house, it really stresses us out sometimes.

 

The social worker said the only things they worry about are the bathroom, plus getting out of the house in an emergency, and he seems to qualify on both points now, based on my recent experience. So she is going to set up an alarm button, it's free for us, so we can try it out, and also will send a PT and an OT to do an evaluation of how he's coming along. I assured her that Ray is strong like a bull and never falls over, except when I do something stupid. So who knows. At least I won’t have to worry about Adult Protective Services if I have their approval. My only issue is that Ray really doesn't want to be left alone, he's a big scaredy cat. However I’m hoping it is worth forcing the issue, and then maybe he will learn to be braver. He was always like that anyway, not comfortable in his own skin. We will see how this plays out, but to tell the truth I am really sick of strangers in my house at this point. I have a major piece of gold jewelry missing right now and it’s freaking us out. I never got around to getting a surveillance device, stupid.

 

And then, this: We went to the beach yesterday, it was such a glorious day. We had it all to ourselves, so I left Ray on the boardwalk while I went hunting for beach plums and rose hips, to make jam for Christmas gifts. He seemed mellow and happy to just sit in the sun and look at the water. Ten minutes later, I come back along the shoreline with a shopping bag full of fruit, very pleased with myself. I called to him to let him know I was coming but he kept facing the other way, the way I had left. As I got closer, I see an older woman peering into the distance too. And then I saw that Ray was sitting on the ground. Turns out the woman pulled up in her car and Ray tried some kind of maneuver and fell out of the wheelchair. I was more annoyed than worried, but the poor woman. She knew he had had a stroke and was very worried, she offered to help me get him back up but I showed her I had it under control. I acted like it was no big deal, so she wouldn’t get the wrong idea. But maybe this independence thing might be more in my mind than anything else at this point! I’d better leave it to the experts for now. We shall see.

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Please that Ray is doing so much, even if he had a tumble. Ray is okay, so don't second guess yourself. Us stroke people, we need our independence, it boost our spirit. I walk everyday, and I fell,cut my knee, but got back up and continue my walk. Told my husband, who is now saying that I don't need to walk that far, and fuss fuss, please things happen, and we need our independence. Remember we are adults, not kids, yes we may act like one every now and then, but we need to try and when we do it the feeling is one of pure joy and pride. I understand with you waiting for the experts, but my doctor wanted me using a cane, I felt the cane was making me depend on it, and I would only walk a few steps. Now no stopping me, yes I do have to be careful, but no stopping me now!

 

Yvonne

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Colleen: Ray may have been exactly right in that situation. He is a smart guy. She was an elderly woman and only Ray knows how she was driving. Probably scared the heck out of him. Of course I am thankful that he is OK. But moreso proud of him, because my money is on Ray. There was no reason for him to move except for that and he was fine where he was.

 

My question and I bet Ray's as well is why would you pull up in front of an obviously handicapped person, in a WC? unless you weren't paying attention. I am so proud of him!

 

Karma! like the tree limb falling the night before we are to go away for the first time. Always a little reminder not to get too safe, too confident - LOL. Just keeping you on your toes baby and really, once the adrenaline resolves, best for us because we are constantly thinking, problem solving, making them safe.

 

As to making Ray safe at home, Bruce and I were discussing that just today. Bruce asked to be alone, very different than Ray. Like with your BBQ, you give Ray the choice of coming or not. Again, some semblance of control. You are going. He is more than welcome to come with you. But you are not staying home if he chooses not to go. Bruce reminded me of the early days when I did not give him a choice. He was to stay and exercise with the caregivers, I was going off on errands. He felt he deserved a choice and seeing that I had help - the caregiver was there anyway - he should have decided himself. My thinking at the time was he needed to do what I thought was best for his recovery while I managed the household. In retrospect, I was wrong.

 

We have had caregivers in our home since day one home. Bruce was a lift transfer. I had to be taught how to move him, shower him. Home PT stepped up the education. First trip to the dentist I had a driver, caregiver and me with Bruce. That is how scared I was. First shower was me, Leo, Jen, Contractor on the phone, 911 on hold - LOL. Mary Beth secured the house for me. Don't forget I chose these caregivers, knew and worked with them. Still Mary Beth had my back. And as much as Bruce and I talked tonight about vacation being over, him back alone; he agrees that is what he wants.

 

We did some shopping for projects for him for the fall. And I reminded him that if he gets scared, I can leave the job or get the caregivers back. It is no problem and his choice.

 

Go with your gut. Ray had a mishap on your watch. Bruce smashed into a doorway on mine. "S" is going to happen. We are never going to be 100% right, but our charges are still under the best care they can get with us. Debbie

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When someone asked me how I managed to shop for groceries with him and I told him I went while he took his afternoon nap, they were appalled. They said he couldn't help himself in an emergency. I told them, if there is ever a moment, when you are at home alone, you are not safe. You THINK you can help yourself, but one second can change all that. He drove home and sat on the couch, and when I came out 2 minutes later, he had a stroke on both sides and was helpless. We are all helpless if a crisis happens, most just don't know it. Now granted, I have to feel that he is in good shape and all things safe as possible and no problems. I have to feel he is not going to pull something stupid, like he has done in the past (some while I was home!). I think he has worked thru his impulsiveness, and he's seen several times how that worked out and was able to cognitively grasp the risk of being impulsive now.

 

However, I will say, that it may be a problem to tell other people what you've worked out and feel comfortable with, as some people are busy bodies and will decide you need reporting. They really have no idea of the things you observe and know each day as far as whether it is as safe to leave them for a while, - as safe as it is for any of us. There is no zero risk factor for a one of us, stroke or not.... just listen to the news to verify that.

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I know, we really live in a Twilight Zone, don't we. But the funny thing I find is, how many strangers that are just walking down the street know exactly what is going on too. Like a secret society.

 

From what I've observed, the government people are more than happy to let us do the dirty work, it is their job to convince us to pick up the slack. I used to be a lot more paranoid, until it all became crystal clear what the objectives were. Free caregiving; for the good of all, so we are between a rock and a hard place. If you are even halfway competent, their job becomes a lot easier.

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Col: I still have workmates appalled that I am leaving Bruce alone. And part of me is afraid of them - not the reporting, just the knowing. Never know who they are talking to. But most of my neighbors are retired and looking out for us and Bruce does have his trusty new button - LOL.

 

You, better than most of us know, with the Boomers on board, there will be no help from the Government any time soon. And I do agree with you. I used to say it about hip and knee replacements. I could spot them a mile away and those that needed them. Bruce used to always remark that I was helping everyone. But I also find that with Stroke. And based on the statistics, much more common. Like the Valet offering to transfer Bruce for me. Col, he could not have been more than 30. You were absolutely right in your observations from visiting there.

 

So many caregivers have to go back to work immediately. Can you imagine Ray, Dan or Bruce being left alone at 3 months or so post? And this is not from the site - you have seen it for yourself. You just have to go with your feelings. Know and have confidence in the therapies and his recovery. In your trials, knowing Ray and knowing what you need to do and how Ray needs to be adjusted to that. If he is in a snit about being left at home, you have to reconsider. If Bruce is whiney, I know that is not normal for Bruce and have to reconsider my plans.

 

If you had had an aide available, as was supposed to be the case, Ray would have the experience of strangers in his home, would have been able to make the decision himself. For now, you just have to go with what you have. Debbie

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Well, crazy things happen. I know someone who had their grandmother die. They spent a lot of time at the hospital, then the funeral process. Then they needed to go pic up the furniture that was willed to them. So they had their young twins in one of those stretchy wooden gate corral things so they would be out of the way as they brought the furniture in, and tried to move some upstairs and to other rooms, and move the other things around to make room for them. Well, about that time, a golfer hit his ball thru their window and came to give them his info to fix it. As soon as he left there, he called protective services and within a half hour, someone was pounding on their door, and said she would be back in 4 hours, and if everything wasn't done, she was taking the kids. So this poor girl, after her terrible week of sitting by the bedside, funeral, and then getting the stuff that she was asked to come get, now was calling everyone she knew and begging them to help before her kids were removed! You get a power hungry control freak in a position like this, and this is the kind of thing that can happen. Any normal person would have seen they were in no danger, and been able to tell what was happening and written that right off, but not her, she was feeling her power and loving it. Never underestimate how things can get turned around.

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I think another good reason to not let too many people know what is going on is the obvious. The same reason you don't advertise that you will be gone for a week and no one will be home there. That's inviting trouble. The general public doesn't need to know if my stroke husband is independent, since they may talk to others and the wrong person ends up finding out he might be an easy mark.

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Really, I don't live in fear, no one should. I just know what I know and do what is appropriate. Debbie has one and I'm going to be buying one too:

It is the Freedom Alert by LogicMark. I am trying to compare the ones I see Walmart has one and amazon also and there is the online from the company, to see if one is updated to answer the phone or do more, than the other version, and that they all get the same range. Then I'll decide where to buy from -amazon looks cheapest so far. But the real site also has a lockbox for your emergency key and extra pendant you can buy:

 

https://www.freedomalert-911.com/?x=bab&gclid=CNfeid2v27kCFYWd4AodwkoAbA

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Yeah I used up all my fear awhile back. And as far as protective services, I know I mention them all the time, but the in-home people assure me they are not looking for anyone like us. More like distant relatives that are trying to get money and that type of thing. There are too many problem people where we live to bother with borderline cases.

 

I not going to shop around, they're giving me one, it only has 911 programmed but since Ray can use the phone that's all he needs, for a real emergency, if he falls down and can't reach the phone. They've assured me there's not any problem with false alarms; our fire dept here is really nice about it. As far as they're concerned, an alarm is an alarm. They have a device that you wear on your wrist, which is good since I know Ray would never wear a pendant. He loves watches though so hopefully this will be similar enough.

 

The nurse was here yesterday but I don't think we discussed it, nor the therapist evals, what else is new? Maybe next week we'll get around to it. I can leave my door open when I'm out with no worries, all the neighbors are like family, so all I have to do is stash his med list and a copy of our ICE cards somewhere obvious. And to remember to keep my jewelry locked up all the time!

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In Case of Emergency. The Sheriffs Dept gives them out for free, they look like a driver's license with your photo on it. You carry it on you, and all the information you want or need is printed there...in case of emergency! Can't hurt.

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Odd - i finally have time to read up a little ( after our big move) and just today i finally have a guy coming in to wire in security into the house - cameras the whole bit.. not even so i can leave the house, but so i can know what dan is doing in another room - he needs that "freedom" - god we all do .... the not being watched all the time--- but of course with the camera he is -- but it is irritating to him to be napping and me be popping in and out of the bedrooms all the time .. or if he is just playing a game on the ipad -- a little privacy - human dignity... funny though , that today while the guy is working on this very issue i should choose to read this ...

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It's good to have, especially if you let people that come in your house know you have it, without telling them where. I know, because I used to dogsit for some real worrywarts.

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