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It has to get better



Last week was horrible and it's continuing this week.


The Cliff Notes version is that I got a stomach bug and was sick as a dog. Dan was to be discharged to my rehab of choice on Thursday. On Wednesday I called the docs office regarding Dan's next Remicaide infusion which prompted the docs office to call my rehab facility of choice to see if they could do the infusion. OMG what a fiasco. Apparently Dan's eval was completed prior to his first infusion of Remicade, so the drug was not on the documentation faxed to the facility. The rehab of choice refused to take Dan because of the cost of the Remicade. Fast forward to Friday and skipping multiple frustrations that would be a blog on their own, Dan was transferred to rehab facility #2. I was still sick as a dog so I went home before he was transferred and he went to the facility by himself. In and of itself, this made me feel very bad.


In my experience weekends in any facility are not a good time. The staff is always smaller during the weekend. The weekend came and went and no one from the facility bothered to welcome us, show us around, offer help, etc. Being the not shy person that I've become in the last two years, I jumped right in and tried to acclimate myself. Had we not been through this after Dan's stroke I would have been a basket case, totally lost and feeling very sorry for myself. I was really beginning to question my rehab choice #2.


Monday morning I went to the facility and was looking for someone to hear my grievance and my doubts. I was apparently looking very lost and a very nice lady with a clip board stopped and asked me if I needed help. I gave her a brief review of the weekend experience. Imagine my surprise when I found out she was the director of the facility. Wow, did I find the right person. Within a few hours I had met with Admissions, the Social Worker, the Charge Nurse, and had a meeting the following morning with the Case Manager and the Social Worker. I was feeling better about choice #2. Dan had both OT and PT and was exhausted.


Tuesday the meeting went very well and I left with a list of phone numbers, Dan's hospital discharge papers, med list, and again feeling better about choice #2. Dan again had both OT and PT and was really exhausted but sounding a little more alert. He stopped eating because the food doesn't taste good. In all fairness to Dan, lunch was not at all appetizing, it was grey tuna noodle casserole and over cooked brussel sprouts.


This morning I woke up in a pretty good mood. Showered, checked email, and called Dan like I always do. His phone was answered by an aide who said he didn't want to talk to anyone. In the background I heard him yelling "tell her I killed myself" which has always been Dan's way of saying: Get me the he!! out of here, I hate it here, and I'm going to act like a 4 year old. She gave him the phone and he was obnoxious, refusing to eat, refusing to let them bathe him, complaining, etc. etc. etc. I decided that I wasn't going to see Dan today because I needed a break and, quite honestly, I didn't want to see him. I'm just sick and tired of the constant complaining. I know he wants to come home and I want him to come home. He just doesn't get it that in order to come home he has to eat so that he can be strong enough to do his rehab. I've explained it and the doctors and nurses have explained it. If he can't help me transfer him I can't bring him home.


My day was spent on the phone with doctors, insurance, grab bar installers, catching up with laundry, and, well, whatever I wanted to do. I even took myself out for a nice late lunch to an actual sit down restaurant instead of fast food junk.


I called Dan an hour ago and he actually talked to me and sounded alert. It's ended up being a not bad day. Tomorrow will be better. I pray every night for strength, patience, and courage.


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Mary Jo,

What a fiasco!! You handled it with flying colors.


Yes having been thru the rehab places...we do know how to aclimate ourselves. Yes. you did run into the right person. I am glad that she knows whe is going on. Hopefully this will help the next poor soul that has to be admitted to that place.


You handled the temper tantrum well. I don't think that I could have done it. but, it worked he was find later on during the day and you were able to let that go and have a nice meal out.


I know about the fast food habit. I find it easier to get fast food sometimes because of lackof time. But, treating yourself to alittle luxury it nice. Good for you.


I had to to put my foot down last night with William ...he was acting like a child and i said no more.


Our boys need that sometimes.


Good luck...I am praying for you serenitiy during this chaotic time.



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I am sick and tired of temper tantrums but Ray's is sulky silence. When are they going to realise how much we do for them? Is asking them to pay us back by getting fitter and stronger too much? I could continue this rant all day but I would run out of room.


You are an amazing woman, you have learned to handle situations well, I so appreciate what you do for Dan even if he doesn't.


(((Hugs))) from Sue.

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Thanks for the encouragement everyone. I don't feel as if I'm handling it that well. I've had several crying jags.


I talked to the Unit Manager and Social Worker quite a while yesterday. They're going to put him on the list for the Psychiatrist to see. Unfortunately, she won't be in until next Thursday. In the meantime they'll talk to the doc about increasing his antidepressant.


They said he did better with rehab when I was there on Tuesday so they'll hold off taking him to rehab until I get there today.


Dan does a little bit of both tantrums and sulky silence. he has a tantrum and then he just shuts down. He was totally shut down yesterday afternoon, chin hanging on chest and not responding to anyone other than to say he wants to go to bed. At one point I asked him if he realized how selfish he was being and he said "Yes". So he knows exactly what he's doing.


I'm liking this facility more than I did at first.

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The next time I feel like a fish out of water in a new hospital or ER or talking to some patronizing admissions person, I'm going to tell them I know MaryJo. What a case of luck getting the ear of the facility director. You are in charge, that's for sure.

Great Job, Mike



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MaryJo: as most of us know transfer to any facility, even an ER is a nightmare. I don't know if I could have handled it as well as you. Go ahead and have your cries. Makes us more resolved and stronger.


Please tho, try to ease out of the rehab being on hold until you get there. Dan is there, it is his work and they should be pros enough to figure him out the first week. This should be your time to rest and recover yourself.


Just a thought. I always give my new admissions three to four days to adjust to their new setting and this is from a nursing standpoint. After that, I also call in the Psych consult. The new patient care laws are pretty strict (I now have to call my patients "Clients", get that) and most anything can be seen as abuse. This is Federal by the way, so his facility should be making strides to accomodate the "Client" and not have to make it your responsibility. Please take care and get some rest. Debbie

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