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.