Diario de Nolan Bontke
Escrito el 4 hours ago
year 4, day 229. Snow day! One minute it was just cold outside and the next thing I know, it is snow covered outside. Such a pretty snow. Not a whole lot, but enough.
Snow always keep Nolan pretty sedated. He has had some stomach issues the last few days. That has worn him out. I was talking to my friend from Celina and she had the same issues after starting a certain medication. We started the same med on Monday night and his stomach issues started Tuesday. So I am going to stop the med for a couple of days and see if he feels better. I hate for him to feel bad like this. Take one med and it causes stomach issues so you take another to stop the stomach problems. Crazy.
I had the best time today. Two of my sweet friends were coming out with lunch. When they got here, I was with the nurse and Nolan. so I told them to go on in and put the food in the kitchen. When I walked in, it was a surprise party!! A surprise Ugly Christmas Party!!!!! No one had on make up, hair was slightly brushed, clothes were just what was comfy and warm. We had a little tree that is best described as unique, food in styrofoam containers and plastic silverware. They brought me the loveliest mostest beeeuuuuuutiful sweater to wear and a feather boa. It was so much fun. We sat and talked for hours. Non stop. I even got Christmas presents.!!!!! It was just what I needed today. Fun.
I have been thinking that some of you are not real clear on what Hospice does. Their goal has changed in the last few years. It used to be that they were called in during the last days of someone's life. Now they may have a patient for years!!They really work to help keep the patient comfortable and in as healthy of a state as possible for as long as possible. They help you learn to live each day. Some of the larger companies in big cities do more services. They have pt and massage therapists who come out. But the ones around our area and the one we chose is more limited. The nurses come out as often as we ask for them to. Once a week, 2x a week, whatever you want. They check vitals and help head off any possible problems. They keep a steady supply of the medications needed for you. I get meds delivered at least once a week. We never get low. The nurses answer any questions we have and are the link to the doctor. They call when we need something from the dr. We don't have to run to the dr office for every thing. They even come out and give shots if necessary. You can also have cna's come out to help with showering. We don't have them come. Not necessary. The chaplain comes once a week to visit. I am not sure if he thinks I am very needy or that I just am on his way back to town. Sometimes he has a message planned and sometimes we just visit. Hospice does not have people to come and stay with the patient as a rule. They have volunteer sitters who come and do just that....sit. They don't help with meals or anything other than just sit and be there. And they are volunteers so there are not many and they are kind of particular on who they sit with. Hospice does not come out and stay with us. They are available by phone if I ever need them, but they won't just come and stay here. They are a resource to help the family with the care of their loved one. They don't provide the care. It took about one visit for them to figure out that we have everything under control. They often ask me questions about brain injuries and past meds and what I want for NOlan. We have gotten a good relationship now. They know I will call if I need them . If not, we are ok. For many patients, hospice provides the only company they get. Someone to visit with for a short time. The company we are with has had patients for up to 7 years. We thought we were going to be long term like that.
There are so many people facing struggles this holiday season. Either from loss of loved ones, illness, financial difficulties or family situations. Please pray for God's blessings for all of these. Pray that we can get Nolan's stomach settled down. Pray for easy nights and good days. Pray for God's peace to surround NOlan. for His strength and comfort to fill him.
I really had a good time at the Ugly Christmas Party!!! What a great idea.
Escrito el Dec 4, 2013 7:58pm
Year 4, day 228. I have had a lot of time to write this post in my head. I write it and rewrite it and rewrite it. And you know that I have never rewritten any of my journal entries or any paper I ever wrote. I write it once and am done. Good or bad. But now that I am writing, I have forgotten all the eloquent phrases and words that I was going to use. could I have written this post sooner? Yes. But this is not the easiest thing to say or tell someone. I have called a few people and shared over the phone and let me tell you, it was not easy. I know that there are a few who will be upset that I did not personally call or let them know. all I can say is that I hope you are never in the position to have to share this kind of information. But then you will understand.
As you know, NOlan has had more struggles lately. They have been pretty steady. We have had Hospice coming to help manage his pain for a while but now we have taken a different turn. We thought we would be their long term friends. So did they. But we seem to be heading faster than anyone thought. How fast, no one knows for sure. We only know that he is getting weaker and is just plain tired. I think that he is ready to go Home. Ready to stand and run and dance and talk really really LOUD> And I am ready to know that that is happening.
He is comfortable. We have the pain controlled. He sleeps most of the day. We usually have a short visit first thing in the morning and then he just naps off and on throughout the day. The nurses come 3 times a week to check on him. M is still coming in 4 mornings for a few hours. WE are doing fine. I tell people that we live in the country for a reason. We love the quiet and peace. So this is right where we need to be. I paint in the bedroom or work on other projects in there. He likes to see me or at least hear me near. I like that too.
I have begun to hear so many of the old cliches that I dreaded hearing. And now I am ashamed that I have actually spoken them as well to others. I think that we all just try to think of something uplifting to say. When really there is no need to say anything at all. A good friend told me that he tells people to say nothing. Just give a short hug, not a ten hour long one, and then just listen. There is no reason to force something out. He is pretty smart.
I have threatened to put up a sign on my door with things that are not allowed to be said inside. I don't want to offend anyone but here are some.
I know how hard this is. (some people do, but not all)
You are such a strong person. (God is strong, I am just His vessel)
This is for the best. (I get the idea, but that one really stinks.)
He is not in pain any more. (believe me, you don't need to tell me this one.)
God works things for good. (we have been living that for nearly 5 years, kind of like telling me my pet is a dog. :) )
What can we do? (just what you have been doing. If you have been praying, keep it up. If you have been coming around, keep it up. You don't have to hunt for something to do. Just keep being a friend.)
What will you do? (What are you going to be doing in your future I don't know either. I will just be quiet and listen for God's leading.) I really want to tell people that I am going to sell everything, move to Europe and join a Gypsy caravan.
I know that the sentiment behind all of these phrases is sincere and well meaning. I think we just don't know what to say so we say those things. When really, just the presence of a friend is enough. The words don't matter. But I have to warn you, I have told Summer to stay close so that if I hear the same phrases more than 3x, she can trip someone!! LOL I really do not mean to offend anyone at all. I have wonderful friends and supporters who usually seem to know just what to say, or not to say. We are blessed.
So we thank you for being faithful encouragers and supporters. We treasure your kind words and prayers. Please keep praying. Pray for peace for Nolan. For comfort. For permanent healing.
Escrito el Dec 3, 2013 11:08pmYear 4, day 227. The day before the big COLD!!!! We are ready for it. My neighbor came over and rewrapped my gas meter and checked the well pump. He also wrapped my outside faucets. so we are ready for the cold.
I moved a dresser from the shop to the house so I have a project to work on during the cold. It is too early to start making candy and goodies so I am going to work on a dresser for NOlan's workout room. A place to put stuff. And we have a lot of stuff.
Nolan had a rough night. I think the front coming in was playing havoc with his legs. He had horrible leg cramps all night. Nothing I gave him seemed to help. So he was still very restless and uncomfortable today. He just could not relax this morning. We got his new meds in and that helped. He finally relaxed and slept during the afternoon. He needed to sleep good.
We had company tonight. An old friend brought food out and we had a really nice visit. Got all caught up. Her kids and mine grew up together. At times they were convinced that they were brothers and sisters. So it was nice to get caught up. Nolan woke up and listened to us. He did not have a lot to add but he was definitely listening.
the days seem to just fly by. I really like to get something accomplished every day. Today I can't think of anything that I accomplished. I took out the trash!!!
Today was shower day and I was going to use the lift to move him to the shower chair and back into the bed. I thought that would be safer in not risking scraping or bumping the red patch. BUT the lift would not work. I took the battery off and replaced a lost screw. Plugged it back in and haven't been back in there to see if it works. It was really frustrating for it to not work. So he had to have just a bed bath. Not what I was hoping for. I am sure it was not what he wanted either.
There have been a few more requests for prayers on our prayer page. I am so thankful that God knows exactly what they need. Pray for a very sweet sweet lady that was having some health issues this morning. Pray that the red patch clears up and does not become a sore spot. Pray for smooth, easy sleep and nice relaxed days. Pray that the weather front does not bother him too much. Pray that God's best is always foremost in our life. Serving HIm and striving to share His love. Pray that we relinquish total control of every aspect of our life to HIm. Pray for answers and the wisdom to recognize them.
I am ready for the cold. I like it, but I wish it would stay that way. I don't like adding layers of clothes and then ending up at the end of the day with a pile of stuff to hang back up. When it is cold and stays cold, you know exactly what to wear. My neighbor fixed a spot on our deck door that was letting cold air blow right in. so we are ready. Just gonna stay in and stay warm.