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I can feel the holidays approaching....the rest of the year will fly by!


1967stingray

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Still working on Ray's "Long Term Managed Care" choices, and we're finally close to the finish line. I called the two places that are connected with our Dominican Sisters agency, in which case they could still provide the nurse and social worker we already have. Who aren't the worst. One agency put me on hold for 15 minutes and never came back; and the other said she had no idea what I was talking about. Pretty much what we get from the Dominicans lately. We do finally have a great social worker so she had also recommended one agency, outside their network. I called them, and immediately got someone on the phone, who said the caseworker was busy but she'd take my info and have them get back to me. To my surprise, they called back in less than 5 minutes and are coming tomorrow. I already told Medicaid that I am meeting with them, so they know and are just awaiting the eval report to finalize things.

 

Meanwhile, Ray's current nurse has been sending a newbie substitute weekly for the last month or two, who keeps saying she doesn't even know why she's coming. Always seems to be the same day as a doctor visit with us, so I just give her a list of his vitals, she doesn't even do anything really. I know this is totally against regulations, but at this point I don't care. So last time we saw her, I told her that Pat (our ex aide) had stopped by, and told us that she had taken a job with the agency that provides aides to the Dominicans, since they don't have their own anymore, but she had to quit because she was averaging only 3 or 4 hours a week. They told her the Dominicans didn't need any aides. When I told her that the Dominicans told me that they wanted to get us an aide, but there were none available, we just looked at each other in shock. Not sure on which level this subterfuge is occurring, but there's more here than meets the eye. With ACA/Obamacare falling into place this entire year, I think there's a lot of "milking" involved. I told the substitute nurse my suspicions; She seems basically clueless but also she seemed not surprised. Guess all her typing that day on her laptop was about something. She's only been with them a short while, so maybe it's good we've been seeing her instead of someone regular who would gloss over it.

 

 

So all of a sudden this week, I get not one, but TWO social workers Monday (our regular plus her supervisor) and also the real nurse on that same day. I thought it was going to be a big confrontation, but no, as usual they were just a day late and a dollar short. Trying to schmooze me big time (as we say here in NY). They call me a day or two later that all of a sudden they have an aide for Ray. After us being without since January! The social workers, when they were here, had tried to aggressively push us into adult day care, but I told them I went through the whole thing on my own earlier this year, and realized it wasn't for us particularly. The transportation problems alone made it a no go. So, another stranger coming into my home, not sure I'm happy but I could sure use a trip to the salon for a haircut, it's been over a year now. We have to stay with the Dominicans another 90 days for the "transition phase" so I'll take it as it comes.

 

Anyway, went up to Mom's last weekend for her 82nd birthday, and then the next day my oldest niece's baby shower. We haven't done any overnights lately so it seemed a great idea. My brother and SIL from Georgia were supposed to be coming too, along with her Queens cousins, but she chickened out, her COPD is so scary sometimes. My sister in San Diego also told me she was trying to talk her husband into coming, but she just got back from a few weeks in Europe with a girlfriend so that didn't work out either. I sort of stalled, but made a bunch of cakes in the end and headed up. Glad we did.

 

We get up there, and as usual everything was discombobulated. Mom is home alone, she knows it's her birthday but doesn't know of any plans. I know that the party is supposed to be at my sisters, just a block away, we decide maybe it's a surprise? Or maybe Mom just forgot that they told her. Anyway we're hanging out, and I had brought some Long Island scallops that just came into season, so I sautee them to nibble on and say we can go to local restaurant for a celebratory happy hour, while we wait to get word. But it turns out they don't open until 5, not open for lunch even though it's the weekend. I decide we'll head over there if we don't hear from anyone by 4:45. Meanwhile Ray is getting anxious, since we didn't get to go there when we were up in the summer, and it's one of his favorite places in the world.

 

So we are counting the minutes and wouldn't you know it, my other sister shows up at Moms at 4:45 and starts cooking. She said our other sister wasn't feeling well a couple of days before (I knew already because we talked and I think I had the same stomach bug, even though I'm 4 hours away) so they had switched the venue to Moms. My local brother and his family show up about the same time with a bottle of champagne. Tons of food is being cooked for the celebration. Ray started being very antisocial, he was so disappointed we weren't going to the restaurant and I was stuck in the middle. I wouldn't have minded going at that point myself. Finally a few phone calls, where is everyone? My other sister is all set up at her house and expecting everyone there. That's where the other half of the guests already are. You'd have to know my family to know that this is not unusual at all.

 

So everyone starts packing up what they are cooking, and Ray is making loud sounds of protest, to the point everyone wants to know what is wrong. I say he wants to go to the restaurant really badly, so I will take him for a quick drink and an exotic appetizer (they have the best!) and will return shortly. Then I get in the car and blast him, saying how much food my family has made, how rude to say you prefer a restaurant; so in the few minutes it takes to get there, he changes his mind and we go straight back to the party. At which point, a fun time was had by all! I cannot believe how much Ray LOVES little kids now, and the littler the better. He was cooing, and oohing, that was such a joy.

 

Next day, my niece' baby shower. Ray is told he can come but it's just ladies, or he can watch football with my sister's SO. He chooses to stay at Mom's by himself and watch his usual Nat Geo shows while I'm gone and that worked out fine. He had had some kind of stomach cramps earlier that morning which concerned me, but maybe nerves because it did pass enough to take Mom out to the local Italian restaurant for lunch, and he had been fine since then.

 

So the funny thing is, since we got home, people have been mentioning how improved Ray seems. He "talks", not actual words but he goes on and on about I dont' know what, instead of sort of a word here and there. Also when someone stops by, he wants to be in on the action, instead of just sitting and watching TV like he's alone. Every time I take him on a trip, this happens. It's like he takes a giant leap forward. I might not be doing it according to the books, but I don't think it's half bad either, as far as a form of therapy!

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Stingray, are you Colleen? I don't know how to tell for sure. Anyway, it is an absolute miracle that a good time was had after such a right hand not knowing what the left hand is doing!

 

I have noticed the same thing about Bob. For the first year, he was so anti-social, afraid to be seen, not very strong. Once he felt good enough to try to go out somewhere (work retirement party), and saw how everyone was so friendly with him, he totally bloomed! He also did when I took him to the aphasia support group. He was more alert and chatty than I'd ever seen him since his stroke! If they are up to it physically, and not still struggling with their image, it is excellent therapy to be social.

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Yeah it's me, Colleen the Sting Ray. I should change my name since we sold the car last year, I guess.

 

The best therapy is real life, I am coming to find. And my family, well if you can survive the cyclone that is them, you can survive anything. It's always a funny story later on.

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You are so right about real life been the best therapy. I always feel so good when I go out with my family or my girlfriends . Now before I go , my stomach is in knots, and I am worryed I do something silly or say something silly. Once Iam there , Iam laughting (sometimes dont know what is been said) just feel so alive. Still times I just dont want to go!

 

My husband family are like yours, they are a trip, dont need TV, they are the show! LOL

 

Yvonne

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REAL LIFE -- YOU ARE GONNA GET A DOSE OF IT COMING HERE TO N.D. -- luckily Ray has a warm coat.... still think you should bring the cats...lol-- but now it looks like you are gonna need to stay to at least coordinate the transition or YOU know that will go wrong LOL....

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Ray will never freeze again! (We have the poster hanging in the dining room!) I forgot to tell you, he wore the coat upstate, despite the fact that it was in the 50s, and everyone there immediately commented on it, unlike down here where they don't know exactly what it is. I told them up there how you told me to not leave it laying around and they said you were totally right! They were practically drooling!

 

Well at least our fish has bit the dust, so it's just the two cats at this point. Pat is coming over for dinner soon, believe it or not, she keeps stopping by; so we'll figure it all out somehow. She's out of work right now, so I feel bad. Anyway, Ray was always a great traveler once he gets going, so he'll be OK. I'm the one that has to level it all out!

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Colleen: sorry about your little Tetra. I know you enjoyed him. Good time up to Mom's and I am sure everyone enjoyed the family time. LOL on the planning. But it is good to know you all have a Plan B. Nothing like solid back up.

 

I hope all gets settled soon as far as Ray's care and you get some time away. I took 40 minutes yesterday afternoon and went shoe shopping. What a fun time. As far as therapy, whatever works or at least has a positive outcome. Debbie

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Oh I forgot to mention the part where my fish died while I was gone, I hate to think it was the slow release food that he didn't really even need for the 24 or so hours we were gone. He wasn't quite dead and I sort of revived him, but the next morning it was all over. I had a little funeral and buried him with Mooch, but I keep looking by the TV where I kept the tank and feel a little hole in my soul. I put all the aquarium stuff down in the basement for now (and there's a lot more than you would think) anyway enough is enough!

 

This time with the aides, I plan to be smarter and not spend the whole time shopping. The hair cut is my first plan. Not sure what else I'll do, if the weather stays nice maybe a walk on the beach? Or a quick trip to the gym? I really don't know at this point. But with the holidays coming, I'm sure I'll think of something.

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Colleen: thing is, people always advise we need "our" time, but like you, when I get it, so much of "me" has been tabled, I end up at a fast food place or shopping. I was never a shopper, still aren't. Shopping for me now is getting through what is needed. I have a list, plan it in. It is never about me. I would never pay a caregiver to go to the hairdresser.

 

I can now leave Bruce for short times. You will hopefully have a paid caregiver. We both have to reorganize our thinking. And yes, I agree with you 100%. If I am going to do this, it is going to be about me. I did take 40 minutes yesterday to buy some shoes. I have one pair of white Nikes (yes, you saw them) that I wear to work and I am fairly confident in to get me down and up the ramp, as long as the ramp is dry. Got the cutiest pair of two tone Oxfords. Will they work on the ramp? Probably not, but I can change in the car - LOL.

 

Finding the "us", what we need, would like, would enjoy is the key. New thinking, certainly. Been a long time we have had that freedom. Take your time and make it about you. Debbie

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I had some "me" time Saturday. Took the time to try on several ankle braces and decided on one. It's not perfect, but helps a wee bit with the pulled tendon I got holding back Bob's chair from rolling down the hill. A caregivers (version of) big day out and pampering time completed!

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