Monday, May 31, 2010

And then con't.

So, I am back, had to just take a little break. This post won't make much sense if you read it before the previous one, so just jump back.
Thanks for coming back for part 2.
So, at the graduation from college of SDaughter, it was a place I never thought I would be. Even though I knew what I wanted for SD, it was not until she wanted it that it happened, and it happened in such a big way. Graduated with a 3.75 avg. her last year, and received a special award granted to one special ed teacher per graduating class. We sat there, myself, her son, her father, step-mother and her sig. other (holding white roses for her!! Didn't I tell you that he was a great guy! No, well I am saying it now). When they called her name, I had this plan to take a picture of her as she was projected on the big screen-but you know what they say about plans-I was crying so hard that I could not honestly say that I saw her walking across the stage-a big blurry mess-while I screamed-oh god, did I really do that-I was so embarrassed whenever my mother would do that-and there I was screaming-it must be a genetic flaw). The picture of course did not happen. Luckily, SHusband was watching the whole thing streaming live on the computer-so he got to really see her. He would have loved to attend, he values education and was so proud of her and her achievement, but we knew in advance that if he went in a wheelchair, he really would not see anything from the floor of the arena where he would be sitting, and he needed to save his strength for the dinner party later. Which brings me to the other shoe falling. Three days prior to this day-on May 12th, he asked me to cancel a visit to his SSister's house because he had a meeting that he really wanted to attend in the evening, and didn't feel that he could attend both. Why didn't a big old flare light up in my head????? The next days went by, and Saturday morning, I was reminding SSon to be ready after the graduation when I came home to pick him and SH up for the dinner. I looked over, and SH is sitting with his head in his hands. Oh my goodness, what is happening here? I asked if he was OK, and he said no. NO? He was not sure if he could attend the dinner that night. Apparently, one of his weakness spells (part of his post polio syndrome/PPS) was starting-I felt so badly, why didn't I notice before this? How could I not have seen the signs. Well, I really was not home the day before for more than 15 minutes from 8:30 am until 12:45am when I returned from the hospital ER. And he did not want to upset me, so he did not mention how he felt. What a hard time I had deciding if I should leave him to go to the ceremony. He said that I MUST go, he would rest, and let me know if he felt up to going when I got home later.
I mentioned at the ceremony to SD's SSigother about SH possibly not attending the dinner, and he said to just text him, and he will stop at our house before the dinner so that SH could see SD. This is after he was taking her to the hosp/ER to see SMom. How could anyone be so considerate and kind-no wonder SD loves him.
So, the graduation went on, see previous for weepy details, when I arrived home, SH was dressed, looking very weak. He said he wanted to go, even for a short time. Out comes the wheelchair, and a promise that whenever he needs to leave, I would take him home, no matter how much time he was there.
He made it through the entire night!! I know he probably should not have stayed, but all my offers were rejected.
It was a small Dinner party-20 of us, but it was just what she wanted since she had a big First Communion party for her son 2 weeks prior. I would have liked to have a few more family members present, but as it turned out, they were at the hospital, and would not have been able to attend anyway.
SD was very generous to allow a small Birthday cake for her Son at her grad party-it meant a lot to him. And the grandparents too.
It was difficult for SH getting the final leg of that evening finished, but he managed as best he could, and was able to get in the bed.
The next day, I needed to leave very early to go to the hospital to be sure to be there when the doc came. I explained the home situation to my sibs, and we managed to get in "THE talk" while SAunt and SCousin visited with SMom.
In the past month, SS#1 and I were checking into assisted living places for SM. We were worried every time we left her house. No matter how much effort we put into trying to keep her pills packaged, her larder filled with easy to nuke items, and giving her plenty of time, it was not working-she needed more skills and overseeing. We had visited one place, looked at many on the net, and I visited another place. So when the talk happened, we had some info to work with. It was not easy-we all agreed that it was needed-but until you have arranged for a out of home placement for a parent-you have no idea of the stress that decision involves. I am a very detailed person (I think), but unfortunately, I am also a very emotional person-not a good combo for this process. All four of us local sibs managed to come up with a plan, the details of which would be discussed with Mom. She was told by medical personnel at the hosp that she absolutely could not live alone. Living with one of her kids was not the answer-she is a very social person-needs for mental health reasons to stay as active as possible, while also being given care for her medical needs. So assisted living where they supervise hers meds, make her meals, clean her apartment, do her laundry, make her bed, etc while putting her in a very busy social schedule is perfect for her.
So after she found out what place was available, she asked for SCousin's opinion who has a business relationship with the umbrella company, and all good reports were given, including a report from a friend who had parents there for a time. This was good enough for SM. In the meantime, while paper work, etc was being done, she could not be alone during the day. The way this worked out was really amazing, brothers at night and weekends, sisters during the day. My ever-ready battery bunny SS#1 was everywhere at once, finding the right sized table, cabinets for the new place while still coming to be with SM. SBs both came after work, and were very accommodating to my shortened time available. They did so much to prepare for the move, and keep SM happy and safe. SS#2 called and sent so many cards to keep up SM's spirits. I did and continue to do a mass of paperwork for the move, but luckily I could do it from home while keeping an eye on SH. A few days this was not possible, like the day SM went to see the new place, or for MD appts, and for moving day-but we got thru it. I really wished cloning was available then-no matter where I was, I felt guilty for not being at the other place more.
SH has some new meds to hopefully stop the cycle before it gets to the really bad 4 month episode last year where he was so frightenly weak. There is no cure, all predication's are dire, but hopefully, some new meds can help him sleep, give him an appetite and keep his weight from plummeting again. I created a new magic shake: ensure drink and a powder mix of protein for muscles and carbs for weight gain. It seems to be helping. And the fact that he feels well enough to watch his Yankees play on TV almost daily is such a bonus for him.
The move of furniture etc happened two days ago on May 29th. What a team of family members and others this was. And, gee whiz, it did not rain-the temp was a bit too high for those of us who sweat like pigs, but everyone was pushed to drink water.
SS#1 of course made some barbecue chicken for sandwiches (see one of my early posts for the recipe), and the first meal in SM's new digs went well.
Tomorrow, she will be formerly admitted to her new place, and unfortunately, she also has an important post hospital cardiac appt, so it will be a long day for her. SS#1 and SS#1 spouse have been taking excellent care of her in the between-move time. Is there anything they can't do? I love and admire them so much.
The packing process made me so happy that she will be going to assisted living-the amount of pills that I so carefully put into labeled containers and reminded her to take were at least 25% shoved into every area possible place but where they were supposed to go. Not a drawer, cupboard, purse, shelf were spared their role of pill hiding. The hardest bunch to see was in her nightstand where I found some of her new meds that she was put on after the hospital. We were there, handing her the pills! And they still did not get taken. The new place has a state law to follow that mandates then to SEE her take them. That will really rest my mind.
On May 19th, we had a large pre-planned remodeling job start at our home. We have a very old home (106 years) with small bedrooms, and SH can not get his walker or wheelchair into our bedroom, so a wall is being torn out between the two small rooms, new floor, walls, ceiling, trim, etc, and a bonus for me-a closet. Remember people in the way old days had one set of clothes for everyday, one set for good, and a nail on the back of the door was their closet. We have been making do with a large living room closet, and a closet I had built upstairs, but really-that is enough of that. And, we are actually having two closets built, one with shelves for SH to use so that he does not have to use his strength to open drawers, and a big closet for me. I am a spoiled brat I think. This project could not be delayed even with all going on. SH needs the change as soon as possible.
So, furniture from two bedrooms is scattered all over the house. Plastic is everywhere, and couch sleeping is just now starting to seem ok. Another week should wrap up the work.
SM is a happy, friendly soul, and she deserves the best care possible-now she will get it.
SH ate a small amount of supper yesterday-maybe he is coming out of this current episode.
SD is working at her old job, but with a new position and a raise until she can find a teaching job-in this new time of so many teacher's jobs being cut-it is a hard time, but she is hanging in there.
SGS is doing well in school and proud to be able to accept Eucharist now, and we love that he recognizes the importance of this gift.
SSon is hot, but working at a new Enclave (a job with a sheltered workshop job coach, out of the workshop), he gets to take road-trips, and make a tad more money.
SMe, well, with the help of God, I survived, and isn't that all we can ask for?

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