Thanksgiving today!

We have lots of reasons to be thankful, God, family, friends, our home, our rv, the time and resources to travel in our new RV, the beautiful country we live in, the list is endless. Often we forget how good we have it, complaining about the everyday chores, when really we should be thankful that we can do them.

The past few weeks have been sort of a roller coaster. My Moms 80th Birthday celebration was awesome, but it was bittersweet at the same time. She is aging physically, and that was the night I found out my Aunt Mary has terminal cancer, she has about six months to live.

 Last eve I went to my Mom's after work and stuffed the turkey for them with the help of my niece's Carli and Jenna. Dad came home and watched over us, I tied the legs and wings the way he likes and then it was done. I really think he wanted to do it himself, but since I came to help when my sister Lynne asked me to, he did not interfere, but I could tell he would have liked to do it himself. Lynne was worried about him because a few weeks ago he fell and bruised his sternum. We really have to think about how much help we give them. Sometimes we help too much, just think about yourself, often we have pain but that does not stop us. We just work through the pain and finish whatever job we need to tackle. Maybe that is good for them too, aging should not stop us. It is just a reminder that we need to slow down. My favorite quote came from my doctor, back when I had my pulmonary embolism. "Slow and steady wins the race" I say it all the time to Lura when she is afraid of walking somewhere or doing something she perceives as dangerous. We need to let them do just that.

After helping with the turkey I went to my Aunt Mary's, I had a super nice visit with her. She seemed to be feeling very good. Just recovering from a few days extreme abdominal upset. Melissa says she has a bad day, then a day to recover and then a few good days and then the process is repeated. The cancer is blocking off her intestine. So eating is a real problem for her. I brought them a pot of beef barley soup for supper. Aunt Mary enjoyed it, but we had to take the boat motor to it, process it to a cream soup, help her digest the soup. She said it was till good that way. After we ate dinner, I helped them with some Thanksgiving prep, chopping veggies and chatting. It was very nice to spend time with her and my cousin Melissa. Hayden was busy playing the Wi in the living room, while we stuffed the artichokes. I left when we finished that job.

 Laura was waiting for me to get home. She had gone to dinner and the mall with her sitter Becky and Maria (Becky's Daughter, who is here visiting from Texas), she had a picture of her sitting with Santa. She was so proud of the picture, for years Laura was afraid of Santa for the past few years we have been working on her fear. She seems to have overcome the fear, asking to visit him. I love when this happens. I really am proud of her when she works through anyone of her many fears, it is awesome to see.

This morning I woke up to the sounds of Laura and Tom in the living room. Tom had gotten the paper and she was happy to see how big it was. Chucked full of all the Black Friday adds. We sat on the couch and looked at all the adds while I sipped my coffee in a ceramic cup. Yes that to me has become a sign of a good day. ceramic cup when you are not in a rush, plastic travel mug for any other day. The add were fun to look at, but I have no plans of shopping on Black Friday, it is too insane for me and totally unnecessary. We have truly lost the meaning of Christmas, the stores are now opening on Thanksgiving. Family means nothing, to the retailers in this country. I promise I will not shop on Thanksgiving but I won't do it on Black Friday either, too crazy for me.

 Well it is time to get moving, get Laura dressed, pills, dishes etc. and then we are off to my Mom's to spend Thanksgiving with them. More on my niece Jessica, who is in the hospital today after gallbladder surgery, keep her in your prayers too.

Am I depressed, why???

Not sure why but today I have been kind of bummed out all day. I was ok for a while this am but when I got to work it seemed to get worse again. I started the day off disinterested in doing the am chores, but that is nothing new.

I went to Laura' ISP, this is a 6 months review of how she is doing at day program with her OT, PT, speech, nursing and her goals. Seems as though everybody agreed she has a good morning but at lunch she begins to have a melt down that progressively gets worse until she leaves. She has anxiety mostly about walking, she can really dig in and refuse to walk. At program she uses her walker in the building and to and from the bus. If she goes out on a long distance outing she has a wheelchair she can use. Most of us have the same belief that she is afraid of falling. I listened to everybody's story and realized I needed to try giving her ativan earlier in the day instead of when she gets home. So after I left I called the doc, hopefully she will write the script for what we need, and it improver's her life.

We also discussed the issues with getting her into a respite program, I have been trying for almost three years now to get Laura into a respite program all I have gotten was a lot of frustration. Because she is an insulin dependent diabetic and has an insulin pump, nobody wants the responsibility of having her in there program. I spent almost two years trying to train a local agency but there staff turn over was faster than my training was allowed. All I ended up with was a headache and because Laura has to be there, she has  great anxiety about moving somewhere else. There is no real way to get her to understand that someday she will need to live in a group home. I have no desire for Laura to leave home. I truly have great fear of the day she will need to go live "somewhere else", as Laura calls it. I have worked for the state office of OMRDD for 28 years, I have seen great staff and awful staff. Nobody wants there baby at the hands of someone else. But I watched many young ladies and gentlemen being put into the institution or a group home on an emergency basis because there parents had either gotten sick or died. They were shocked and scared, anxiety was very real for them. You can't blame them, it is hard enough to go to a new school let alone being dumped into a home you have never seen or lived in.I DO NOT want that for Laura, she lives with some level of anxiety even here at home with people who love and understand her. Is it really too much to ask for her to be exposed to another type of home before she has to live there????? That is all I want! But we have an agency that takes the word retarded out of there name but does not want to treat them for all there disabilities, only there so called intellectual disabilities. Laura's intellectual disabilities are the lest of her problems, it is her physical disabilities that cause her the most stress. So Why does this office refuse to step up and ensure that all of there disabilities are taken care of???

Of course the government is broke and continues to cut services on a regular basis, this and all I mentioned could be a big part of my stress, what do you think???? For now I have a little girl, who just so happens to be turning 25 in a few weeks, she is tired and needs my help to get settled into bed for the night. I am not far behind her, more tomorrow.......

Our new family!

Today was a great day for all of us. Laura had us up early, maybe she knew something that we did not know. We left the house at 10am to meet our friends at Church, there son Jeff is the preacher at the Ephratah Reformed Church. I do not know why it is, but I have never walked into any church that made me feel as though I was home. I really think it is because we had met so many of the church members in the woods. while we were camping with Karen and Jim. Jeff is a powerful speaker, when I listen to him I completely understand his message and am able to relate to it. For such a young Pastor he has a wealth of information to offer, awesome!

After church we went to Karen and Jim's for dinner, Tom made his special spachilli as a treat, Karen made a salad and brownies and it was a meal. Karen's Mom and Dad were with us and even though he is also a Pastor, feel very comfortable around him, maybe to comfortable. Jim and Karen also have a handicapped daughter, so we relate on the same level with each other. When I meet friends of there, I often find I have something in common with them as well, to me it is uncanny how well we are suited to this new found friendship. For years I had friends that I had things in common with but never have I had a friend that I felt so connected to. And Tom feels the same way about Jim, as I do about Karen. Ahh heck, even Karena and Laura are best of buddies. There house is the only house we have ever been to that Laura just wanders around as if she were at home. The biggest problem is once we are there, the time passes to quickly and we have to make ourselves leave. That is a good feeling!

Sunday coupons with Laura.and stuff......

This morning I heard a knock at the door at 5:42am, it was Laura knocking on her door. She was stuck inside the room, unable to maneuver her wheelchair to get the door open. Ugh, 5:42am really on Sunday. She was all excited to do the coupons and go to church with her friends. Me I just want to sleep late, oh well. I climbed back into her bed and conned her to climb in with me on the pretense of snuggling with her. Laura loved that idea, I wrapped my arm around her and fell back to sleep for maybe 15 minutes before she told me she was hungry. So we were up and going, because her blood sugar was low, 83. I got her a bowl of cereal, made the coffee, scrambled some eggs and get the cinnamon rolls we bought yesterday warmed up in the oven. Set her up with breakfast, got the newspaper, let the dog out, made my breakfast, fixed my coffee and sat on the couch with her to read the paper and cut the coupons with Laura.

The past few days have been somewhat busy. I spent most of Friday with my Mom, Christmas shopping. We drove to Lee Massachusetts to the outlets, she did some shopping. Scaled down from years of gathering more than 2 dozen gifts for our very large family, but she is aging and her arthritis is getting the best of her. So she now does mostly gifts cards. Since the shopping went so quick, we went to Friendly's for lunch and took the long way home through the Berkshires, into Vermont and Troy. It was nice to spend some quality time chatting with her about the family, my life and plans for the future. We do not do that enough. For years when we went for this shopping trip, she insisted she needed to get back to the hardware store but this time she was happy to be way from it. Progress, work can't be all there is to life.

After I dropped my Mom off I went to visit my Aunt Mary. Unfortunately she has cancer and is in the final stages. She was recently told that it had spread from her colon, to her stomach and lungs, and only God knows where else. She is not strong enough for the chemo, surgery or any treatment for that matter. So it is time to love her and watch her leave us. My prayers are with her, I just want her to go home to her husband and Jesus as painlessly as possible. Do you hear me God, please let her have a smooth transition. Before I got there I picked up my cousin Melissa's son Hayden from there friend Kim and Emmett's home, they were watching him while the family met with the hospice nurse. They have decided it is time to have some help, Aunt Mary is not strong enough to be left alone and they all need to work. I feel bad for all of them because first they watched their Dad die of pancreatic cancer and now Mom. Why God? Melissa's son Hayden is 8 years old and is stuck in the middle of all of this. Grandma does not have a lot a patience for him, he is a normal, semi obsessed 8 year old. He is obsessed with Star Wars, and star wars Legos. While I was there he brought me these little tiny pieces and showed me the workings and job of each Star Wars character. He also came out of his room dressed like Darth Vader, this sent Grandma over the edge, it was almost time for dinner and he was not to wear the costume to the table. I am sure she is somewhat like this but not feeling well has made her very impatient with Hayden. She can't take his non stop motion and talking, this child is not shy, he talked to me all evening, wow! So s much as I want to be a part of her final days I also want to help with Hayden, he needs to be separated from the situation but he also needs to be there, a tough place to be for an 8 year old.

When my Uncle Jim died I never went to the house to see him. I have always had a fear of being around someone dieing of Cancer. I don't know where I get it from, maybe my parents, they never went there either, in fact none of my family went there during this time. I  have always felt guilty about it and have decided I would not do it again, so visit I am going to. Help as much as possible and be there for them as much as I can. It will be hard for Laura because she does not like it when I am not home but Aunt Mary is my family also and somehow I need to get her to understand that it is important to me. With the holidays here it is going to be tough for them, but no matter what it is going to be tough for them, so keep all of them in your prayers.

Thanksgiving is plated 3 minutes early!

I was up at 5am, while I showered Tom made Laura and I breakfast. By 6:30am I was at work, time to hit the decks. We put the last minute touches on decorating for company. Then set to work on heating all the food, finishing the side dishes that were not yet done, making pot after pot of coffee, checking the silverware, dishes, making punch, ice tea and a long list of other things. I hollered orders to anybody that would help, we washed dishes, folded napkins, lined basket with napkins and basically in 5 & 1/2 hours had  a grand buffet set up 3 minutes early.

Today I made a point of letting the staff care for the ladies and gentlemen we are here to care for, while I set out to give them a feast. We did a few really smart things, we sent five of our most troublesome people out for a walk. They were told if they went for a nice long walk on the bike trail they could all have seconds. Burn the calories, then eat! It worked, they were happy because there was an award waiting for them. And for those that were left behind, we had Jess come in, to do a sing a long. She teaches voice lessons to 2 of our young men. So we have been having her come for parties, she does the sing a long with James playing the keyboard during the time when every body is most anxious about lunch.

Often at these parties it is more difficult to keep the staff away from the buffet, they are anxious to feed the people so they can eat themselves. Anyway the day went perfectly, almost no behavioral problems. They excepted no, when we had decided two plates was enough. The parents were almost all happy with the exception of one parent. She really always seems to need to find a problem with what we are doing for her child. My boss wanted to make sure we had foods on the buffet that were special for him, he is on a gluten free diet. She said that last year, Mom complained that we did not have gluten free foods for him. I said it would not matter what we did,she would find something wrong anyway. I was proven to be correct, she monopolized the room supervisors time, talking about possible medical problems and trying to come up with a problem. My biggest problem with her behavior is she talks over her son ignoring him through the whole event. If you are there to see your son, then visit with him, don't just look for problems. I swear to God, if there is a problem brewing, it will find her naturally. Please let it be about your son, not your need for attention.

I left program happy but exhausted today. My reward for all that hard work was the 40 happy people in our care and there parents. They were all very thankful. I am very thankful for all the staff that did step up to the plate and work side by side with me, working very hard to get the job done. For those that were to selfish to pitch in: I have only one thing to say! You my friend can be a disabled person within a few seconds at any time, we will never know what our future holds. So don't ever forget to treat others the way you would like to be treated. Happy Thanksgiving everyone!

Hectic week

This has been a crazy week, tomorrow is our annual harvest luncheon at the day hab. While making sure 40 disabled adults needs are taken care of we are trying to prepare a feast for them, there families and a few other guests. There have been several bumps in the plan with behavioral outbursts all around us, some of the guys and gals find all the excitement of a party very hard to deal with. I think its all about anticipation and reasoning! They are struggling with the inability to wait and our inability to give them as much attention as they would like. So while we are struggling with keeping the peace, we are also busy making 20lbs of potatoes, 5 turkeys, homemade cranberries, squash, sweet potatoes, pies, desserts etc. yadda, yadda, yadda. And then there are the staff, whining because they have to work, running out of the room for coffee, lunch, bathroom, even feeding the squirrels. I find that it is much more difficult for me to sympathize with all the staffs emotional problems. I am not sure why people with serious emotional problems end up becoming care givers to the disabled. Unfortunately I have no patience for my fellow employees problems. The job I do is difficult enough without my spending time stroking the staff.

So enough complaining, all the food is precooked, the plan is in effect for staffing tomorrow. The Harvest Luncheon will happen and the families will all be happy! And the staff will all survive and collect there check like they always do. My old boss used to say you can hire the staff but you can't give the staff a heart or something like that. So one more day to get through. Decorate, heat the food, cook the veggies, serve the food, look happy to be doing all of it, clean the mess and leave exhausted. Hopefully if all goes well all our peeps will leave full and happy, that is the point of it all!

Change of weather

Today is the kind of day that I know I am putting the yard to sleep for the long winter ahead. For me it is the worst time of year, November is generally cold and wet here in the foothills of the Adirondacks. I spent most of the morning sitting around doing nothing, just waiting for the earth to warm up. Once it did get warm it was a beautiful day. Tom and I weed whacked, mowed, raked the gardens and yard. I even power washed the black top. I was sick of all the little specs of dry grass and leaves finding there way in the house. When I was all done our house and yard almost looked like yuppies live here.

While we were doing all this Laura was busy having a melt down, because I made her come outside with her walker. She thought she was going to spend the entire weekend in her wheelchair, wrong! I was tested to the end, she tried so hard to get me to feel sorry for her, in the end she finally walked down the ramp to her wheelchair but she was totally terrorized. The past few weeks she has been allowed to come out of the house in her chair because the mornings have started with frost on the deck. We aren't even in December yet and she is already starting to show her biggest anxiety. During the winter months she is very afraid of the ice and the dark, every step she takes outside is a struggle. She really can't seem to see the ground, today all the grass and leaves on the pavement freaked her out because she did not know that it was smooth. I can't even imagine that kind of fear every day of my life.I am afraid of walking on ice and I have to make  point of acting as if I have no fear just to keep her from realizing there is ice. I really can't wait til we have the ability to winter in the south away from the ice and snow. 4 years 8 months to go, yes I am looking forward to retirement.