more weight loss!!!!

We have had better days!!!! Patsy does not act like she feels very good. I took her for her bath today and she has lost a little more weight. I have been working so hard and I am not gaining. I was giving her a hug when we got home and I told her that I was considering a feeding tube. She said no. So, I will start earlier and feed her more and I am going to find higher calorie intake for her. Tonight she got 4 tablespoons of peanut butter, A hot bowl of cream of wheat that I added more peanut butter to, and then an ensure, and topped it off with a milkshake with ice cream, banana, and milk. All since 4:00. Tonight she has a slight temp 0f 99.2.

I hope her check comes tomorrow. I need propane before we run out. It has been a tight month. I gave Carol two payments this month for medicine and other supplies. I think I should have enough money to pay the bills this month if I work it out just right.

So we get ready for another day. thanks for riding along, RAZ

Just take a breath so I know!!!!

How does your day start!!!! The first thing I do every morning is to look and make sure my wife is still breathing. I try to change her sleeping position every three hours. I would do it more but the air mattress overlay that she sleeps on helps and we seem to be keeping the bed sores away with that program. I put her in one position at 9:00 and then put her on her other side at midnight. Again at three and six. I have not had to use an alarm clock, I just am able to wake up.

Yesterday we had to do another clean out on Patsy. She gets so plugged up if I don't. After getting her emptied as far as I could, I gave her a suppository and that helped to bring the rest down and she is feeling better today I think. I said good morning to her today and she tried to say it back to me but was unable to get it out. Just watching her move her mouth and try is a good sign to me.

Monique brought a reclining wheel chair from the nursing home for us to use until we get the new one for her that we have asked for. The advantage of the wheelchair is that it forces her to sit up more. I need a tip out on my bus.

Anyway, This was a pretty good week for our girl. I told you that when I move Patsy from bed to the chair that I always ask her to try to stand. I think she has been putting weight on her legs but it is hard for me to tell because I have to hurry and get her in the chair before my back give out. Well, Wed. night I had a meeting in Boise so I had Christy come over and watch mom for awhile and then Kari came by and sat with her until I got home. While Christy was here, Monique came with the wheelchair and they got Patsy up and put her in the chair. They are able to get on her sides and both lift her.

Monique told me that when they did that, Patsy put weight on her legs for several seconds. WOW!!!!

So things are looking up. Time goes so slow when you want things so bad. It is like a kid at Christmas, hurry up so we can open our gifts. Sometimes I get a little depressed wondering if this is the way we will be spending the rest of out lives. But then I look at Patsy and she smiles and I realize that if it is, Then I am a lucky man. So, keep riding along with us on this journey, RAZ

It is bedtime but here I am!!!

It is late but, I have heard from three people today that I am behind in my blogging so here I am. I have often wondered if anyone even reads the darn things because nobody ever replies any more but after today I see it is time to repent. Patsy had another good day. I really fill like we are being blessed just a bit. Her for getting a little better each day and me for having what it takes to care for her. HOLY COW!!!! I you would have told me a year ago that I had this much patience, I would have laughed big time.

I am not sure that I am doing everything right but I am sure trying. Patsy has no bedsores, I think she is now holding her own in the weight department, her range and motion continue to improve, her legs are starting to strengthen up, And most importantly, her smile keeps getting bigger and bigger. Lucile stop by today and Patsy was sure glad to see her. I wished everyone could have seen her then. Lucile is really special but, she brought soup and bread today. HOLLY PEANUT BUTTER CUP!!!! Where was the cookies. I know Patsy REALLY missed them. Just kidding of coarse.

Well, it is time to get ready for bed. Time to give me sweety a good kiss goodnight. Maybe even a hug. She really is the love of my life and I am really happy to share our journey with you. Thanks for riding along, RAZ

It doesn't take much to keep me happy!!!!!

Here is a quick story since the one last night was a little lengthy. I put Patsy in the chair and fed her lunch. I didn't aspirate her one time. HEHE The computer chair is right behind her and she faces away from me. With the recliner back and her feet up I can keep an eye out while watching tv or playing on the computer. So here is what happened.

I SNEEZED!!!!!!! Immediately I said "Crap, I just sneezed my brains out all over the floor". I looked at her and watched her laugh. Then I said "without my brains, now I am stupid". Again she laughed.

Now remember, I am behind her and I am not even talking to her. I realize that it sounds stupid but I like to see her laugh and more importantly, I like knowing that she is responsive to what is happening and being said.

So that is the news of the day. I believe Patsy has become more engaged with things around her. It is like she is waking up from a sleep a little at a time if that makes any sense. Who knows, tomorrow I may be reporting that she has had another seizure, but for today, things look pretty good. Thanks for all those that ride along with us and continue to keep her in your prayers. RAZ

Do you think I am unhappy!!!!!!

I JUST DON'T UNDERSTAND!!!!!! Before I tell that story, let me tell you about a very special lady. Patsy!!! She has just had three of the best days in quite a long time.. She still can not say much, and I still have to feed her and change her, but I can see some improvement and that makes me very happy. Here is an update!!! We started the day with a phone call to see how Dad is doing. She said Hi Grandpa to him again. It was a little rough but she got it out. That is always a good way to start the day. I got her fed and up for the day again. It was a little quieter then the last couple of days but still a good day.

But the best part of the day was that I got her to put some noticeable pressure on her legs while moving her to the chair. I am going to get her to walk again if I have to do it all myself!!!!!

Here is the spot where I don't understand. As part of the Home Health thing, I asked for a few things. Most of the things I didn't get. They told me that I couldn't have a nurse, yet they assigned a nurse guy to her. He can not prescribe any medicines nor can he furnish any creams like diaper cream etc. He can however come by and annoy the heck out of me and check her temp and blood pressure. But if there is something wrong, he can't do anything about it. I have a blood pressure cuff and a thermometer. Why do I need him???? Oh, by the way, he didn't show up this week but I'll bet that they still bill Medicaid.

Another thing that I asked for is a tilt in space wheel chair. The recliner that I have is not a good one for her to sit in and still strengthen her trunk muscles. The Doctor even did a house call since he was in Weiser, (thanks to the woderful nurse that we had when Patsy was on Hospice). If they got the Prescription to him, he said he would sign it and they could get the ball rolling. I have heard nothing. meanwhile, Patsy is not sitting properly while she is up. They also have what is called a Roho cushion for Patsy to sit on so that she won't get a sore. The one that we are using is on loan from guess who??? That's right, Denise, Patsy's Hospice nurse. They were suppose to get me one because this one is supposed to go back to Hospice. Did they do that????

Heck no!!!!!

I asked for a speech therapist for Patsy. She came for the first time last Friday. She was here about an hour and spent most of the time getting up to speed on where Pasty was in her recovery as I call it. After about 45 minute she finally got to work on Pat and spent about 15 minutes with her and got her to say three words. I was impressed. She called a couple of days ago to see what would be a good time to meet with Patsy and I told her that in the mornings Patsy tries to talk the most. She said she would let me know. I got a phone call from her at 4:00 tonight and said that she would try to be here about 5:30. What???? I guess that is early in the morning. Holy Crapola!!!! Then she told me that she wasn't going to work on Patsy when she came tonight but that she was going to tell me how to puree food for her because last time she was here she saw me aspirate her twice.

Welllllllllll. I guess you know how that went over!! I have been feeding Patsy for almost a year now and while I am sure that I have made some mistakes, I have not killed her yet. Maybe she forgot that she wanted me to feed her some different things so that she could see how she was doing and when i gave her a small piece of chicken, Patsy didn't chew it up very good.

She was nicely asked not to come. What part about lets help Patsy do these people don't understand. Oh, but I bet they still bill Medicaid.

So the only real thing that I have gotten from Guardian Home Health is the Physical Therapist that I had to fight for to get. Her name is Monique. She does a pretty good job and between her and I, Patsy is getting a bit better with her range and motion. It isn't what I wanted for her but it is probably the best we can do at this stage. It is no wonder that Governor Otter says we need to make cuts in Medicaid and I am about to do my part to save the State. There is a gal here in Weiser that is a speech therapist who I want to have come. At least she won't be coming from Baker Or. Imagine what that must be costing. But when I asked for her in the beginning, they just ignored me. They won't now!!!!!

I know, I know!!! So are probably saying that I am a real pain the the bedsore. Probably...

But I know that this is not the way things are going to be as long as i am able to take care of my wife. The tax payers that are paying for this deserve better or I am not going to ask for the help.

So, there. You now have my book report for tonight Thanks for putting up with me and continue to ride along, RAZ

Is it my birthday!!!!!!!

Wow!!!! It is only 4:00 but so far today this has been the best day that we have had since probably sometime in September. What do I mean by that you ask????? Ok, I will tell you.

I woke Patsy up at about 8:00 and she gave me the biggest smile I have seen for a long time. Then I was teasing her about how full her diaper was and she started laughing. the more I teased her, the more she laughed. I cooked her breakfast and she ate it without any problems.

She needed a bath because we didn't get to go to the care center on monday so I heated the water and gave her a good bed bath. Now doing a bed bath is not two much of a problem until you get to the washing the hair part. That is usually a hard task unless you have some help because it is hard to hold her head up and wash it at the same time without some help and I didn't have any today.

So, I set a chair by the side of the bed and put a tub with water on the chair. I told Patsy that she was going to have to help hold her head up so that I could do a good job. I turned her side ways on the bed and started to wash her hair.

HOLY STIFF NECK!!!!!!! She was able to completely hold her head up the entire time without any help from me. It appears that the exercises we have been doing may be helping.

And then as if the day wasn't going well enough, When I got done giving her a bath, I gave her a big hug and a kiss. Nothing to special about that you say!!!! Well, The cool part was that Patsy was able to get her arms up around me with a little help. That has been really hard for her because she has been so stiff. More proof that we may be gaining on her therapy a bit.

Next, it was time to get her out of bed and in the chair. I do it everyday but I usually struggle because it is hard to lift her with out having her arms around me so that I can get a good hold on her. Yep, she was able to let me get her arms around my shoulders and that was wonderful.

But it just keeps getting better. I asked Patsy if she would try to stand . It has been so long.

HOLY LETS GO DANCING!!!!!

Now, she only put a little pressure on her feet and my back isn't good enough to hold her to long but I was really happy to see that much progress.

Can the day possibly get any better????? Yup!!! Thereasa called me and told me that she had a roast in the crock pot and I don't even have to cook supper. Unbelievable!!!!! And I have the laundry done and the dishes are done except the ones from breakfast.

If the sun would have stayed out today it would have been perfect but all I can say is let it snow, I don't care.

Thanks for riding along on the journey, RAZ

P.S. I hope R. W. makes it to our next meeting. We really missed her!!!!

Will you stay my Valentine??????

For those that know me, you also know that I really am into Valentines Day and doing special things for my sweety. A couple of years ago, it was a nice dinner at the Mill restaurant in McCall. During the dinner, a surprise delivery of a dozen log stem yellow roses had the crowd applauding and my sweety with a tear in her eye. It was fun!!!

Now it is my turn for a tear as I am not even sure if she knows who I am. I know, I still get kisses and hugs (if I do the huggin). But there are also times when she looks at me like I am a stranger. A nice reward, huh!!! But, I will never quit and i continue to look forward to a walk in the park or few minutes on top of a ridge just me and my gal.

Today was the day that we normally take patsy to the care center for a bath but there is a lot of sickness there right now and we decided to put it off a day or two. Patsy really seems to like it and I like it because I get to weigh her and find out how bad I am doing.

Friday, the speech therapist came by and was able to get Patsy to say three words that I have not heard for a long time. One was goat while she showed her a picture of a goat and the other was coat. She also said ten as the therapist counted.

I have been trying so hard to put weight on her this week. I just don't know if it is working. We were able to get her cleaned out so that should help her a bit. I am doing all I can think of. We will see next time we weigh her and then we will know. Something new is happening and I am not sure if it is good or bad. While sitting in the chair watching tv, she will drift off to sleep. All of a sudden she will start to stretch and takes a big breath like just waking up. Then she will talk a bunch of jibberish and i have to shake her a bit to get her to wake up. But she does and then she seems to be okay. Is it good or bad????

Well, you all have a great night and thanks for riding along. RAZ

It is a great day for a ride!!!

Good morning all you fellow travelers!!!! Here is my report for today. We stepped up the medicine last monday but after a few days, I took her back to just once a day. Yesterday she had a pretty good day and so today I am back to two doses. I guess we will just have to see how she does. I am still having a constipation problem with her so I am working on that today as well. She looks great!!! Her kisses are wonderful!!! And her smile is unbelievable!!!

I canceled her bath aid gal today and for good. The aids with Home Health are not the same as the aids with Hospice. They don't furnish any supplies or do anything. While she was here, I had to get the wash cloths and towels and furnish the soaps and shampoos. I also had to undress her and do her diapers. If I have to do that much, I might as well spend 10 minutes more and do the rest myself. Also, Monique is really cool but they are doing only range and motion exercises and they brought me the info so that I can learn how to do it. They are only on board for 30 days and then they re-evaluate. I guess I was hoping that there was something more they would do. When I get Patsy up and running a bit better, I think I am going to try to get her to the elks or somewhere but for now I guess I will live with it.

They are trying to get Medicaid to pay for a new wheelchair for her. It is called a tilt in space and it will be great to have because it gives here better support while sitting up. It will help to strengthen her trunk muscles and the when she gets a little tired, I can recline it. I am excited about that. Patsy really likes the baths at the care center so I have worked it out with Christy to help me with that on Mondays. There is a scale on the bath chair and that will help me see whether the increase in food intake is putting weight back on her.

So, as you can see, the journey for Patsy continues. Thanks for being there with us, RAZ

Dang it!!!!!

Today has not been a with a good day for me. Oh, Patsy is doing okay but I have had a bit of a struggle. I really hate the fact that I can not get any weight on her. Part of the problem is that she just won't eat. I have a hard time getting her to open her mouth far enough for me to get a bunch of food in and then she takes her time eating it and we both give up before she gets enough to eat.

So, I have ordered some more syringes and if I need to, I will resort back to them. Don't misunderstand, she can eat with a spoon and fork unlike she what she used to have to do when she wouldn't open her mouth at all. I am going to try to feed her the normal way but when she doesn't get enough to eat, then I will give her more to eat with a syringe. She is pretty quite today and hasn't said anything to me but her color is still good and she answers with a shake of the head. She had a bath aid today. I wasn't impressed. But we will see what help they can do. I have been working on her muscles a bit. Tomorrow is another day!!!! Let's keep her in our prayers, RAZ

Holly Crap!!!! Let go of my nose!!!!

Sorry I have not updated for a day or two. Patsy is doing pretty good. We started her with the PT (physical therapist) friday and I think she is in pretty good shape. I am hoping they will come a least twice a week. I also am working on a speech person but we will see. Tomorrow I will give her a bath and wed I hope to make another trip to the care center for a good bath. Actually, Christy just called and we might try tomorrow. Also I am talking with Carol tomorrow and I hope to step up her meds a bit. We started slow so as to not cross all those brain wires. But I think it is time to try stepping it up a bit.

As I sit with her and hold her hand, I sure hope things are getting better. I know it can take awhile and I am devoted to what ever it takes but I sure would like to hear her talk to me a bit more. It can be a little depressing. On the bright side, she is now showing more movement in her left leg and foot.

I play a game with her to get her working her muscles. I have her put her hand on my face and then I get her to pinch my nose. She is getting pretty good and when I honk, she really laughs. I am doing a lot of things to try to help her and the PT says they are all good. I want to go somewhere but Patsy is just not ready for a big trip but soon I hope.

The Journey continues, keeping rinding with us, RAZ

Just shoot me!!!!

What do I tell you tonight. So much to say. Okay, I will start with Patsy. I called my dad this morning and I put the phone to Patsy and she said HI GRANDPA!!!! Wow, that was way cool and I think dad enjoyed it as well. A nice breakfast and then I got her up for the day. She sits in the chair. It is not the best but is better then lying in bed all day. When I finally get a home health group on board, I am going to push for the wheelchair that will allow her to have better back support and it also reclines.

The new meds got here today and I started her on them. Carol wants me to give half doses to start and then we will increase a bit later. She is really moving her arms and one leg a lot lately. her right leg and foot about drive me crazy sometimes.She has a little movement in her left leg but it needs work. Her speech is still slow. In the mornings she does better then she does at night. We'll see what the new meds do.

So, Legacy Home Health. I think they hate me. Holly Crap they can be a pain in my wifes bed sore.

Legacy Hospice was the best. While they are based out of meridian, Denise and Debbie both live here in Weiser and they were the best. After they discharged Patsy from Hospice care, they assigned me to Legacy Home Health. That has been a mess from the get-go!!!!!!! The first thing they said to me was they don't have a nurse to call, when something happens to Patsy I am to just call 911. Not even a hi, how is Pat!!!!!! They did send a physical therapist out but he could not give me any answers as to whether I would have a bath aid or any other help. And they almost acted like it was way out here in the boondocks for them to have to come so they just wanted to show me what I was already doing so they would not have to come as often. I wasn't happy and you know what I am like when I am not happy!!! I am a pain in the bedsore.

I was at the nursing home monday giving Patsy a bath and I watched a gal working on one of the patients. When she walked by, Christy told her that Patsy was her mom and she stopped everything she was doing and came over and shook her hand and really acted like Patsy was a human being and not just a number. When I got home later I was thinking about her and I called Christy and she told me that she was a physical therapist. Her name is Monique. I called her at home that night and she said she would love to work on Pat. She told me that they were under contract with a company called Guardian and that I would have to quit Legacy and bring Guardian on. So, I did.

Holly shoot me in the head and let me die. Legacy was not happy and they called to see why I didn't want them any more. I told them. Then the Guardian people called me and told me that they were getting the paper work ready and the doctor okay but that they would being sending someone from Fruitland to work on Pat instead of Monique. I said okay. After an hour went by, I was thinking and said to myself, SELF , What happened here?????

So, I picked up the phone and gave them a call. I told them to stop the paperwork that I was not going to bring them on board after all. Now they hated me.

I got a phone call. They wanted to know what was going on. I told them that the only reason I was even talking to Gaurdian was because I wanted Monique and have someone that is in Weiser and since I wasn't going to get them, they were not going to get me. Guess what, I got Monique!!! and a nurse, and a bath helper, and they are already working on the wheelchair that we want. I am bad!!! But you know what, Patsy is the love of my life and Everyone out there is praying and helping to make sure that our girl has every chance to pull out of this mess. I spend every minute working towards that goal. It is Patsys Medicaid claim and they need to earn their money or go down the road. The nurse is supposed to come out tomorrow to assess Patsy and Monique will be here on Friday. I am really excited now.

The journey continues and I don't know how I would keep up if it wasn't for your support. Thank You!!!!! Keep riding alon, RAZ