The daily life of caregiving

Sept 24 2009

I haven't forgotten about this blog, Dan was released from the hospital on Sunday the 20th. He is doing much better physically, so so emotionally. The week has been filled with follow up Drs appointments and frankly I haven't caught up on my sleep yet. I will post more tomorrow night.

Sept 18 2009

What a difference a day makes. When I arrived at the hospital this morning, Dan had been weaned off the Dopamine and was getting transferred out of CICU. I had let the despair of loneliness and fear get to me last night and should've remembered that God is always faithful and I need to keep my focus on Him. I had a great evening with Dan, he looks so much better even though he had dialysis this afternoon and was very tired. He just looked so relieved to be on a regular floor even though they still have him hooked up o the monitor. He can shower in the morning which I know he is really looking forward to. I can sleep easier knowing that he is stable and on step closer to coming home. My Facebook message from God says it all:

Dawn got a message that on this day, God wants her to know...that how bad things may look right now means nothing, - it's how good they can be with God's help that counts.In life you can absolutely count on one thing, - everything can turn around in one day, in one minute sometimes. Don't you dare to give up, - you might be a moment away from a windfall.

It's amazing the avenues God will use to speak to us if we will just notice them.

Sept 17 2009

Last time I posted here was Monday night the 14th. Tuesday morning at 5 am I took Dan to the ER. He was having severe difficulty breathing, extreme body jerks, and couldn't stay awake.Once again the fluid on him compromised his lungs and his blood gases were out of whack. This time they were able to stabilize his blood toxins without putting him on a vent however they cannot get his blood pressure under control. They have him on a dopamine drip which keeps it up over 100 but as soon as they turn it down he drops down into the 80s. So as a result he will be in CCU until they can get it stable without the meds.When I got there this morning he was extremely agitated. They had withheld his time release pain med because of his blood pressure so he was having withdrawal from that, nicotine withdrawal, and anxiety over the whole situation. They finally did give him his pain meds which put him to sleep finally but before he went to sleep he cried which breaks my heart. I asked the nurse to see about getting him some kind of anti anxiety medication to help him from feeling so overwhelmed. Since he has been there they have called in a neurologist concerning his jerking so an EEG was done yesterday to rule out any abnormal brain function. I haven't heard any results on that yet. Since he is sleeping so soundly right now I have come home to eat lunch, let the dog out of her cage for a bit and try to get my head wrapped around this whole thing.I can't help but wonder if he is going to recover from this. He is scheduled for dialysis again in the morning which will keep his blood pressure down as well. If they cannot get him stable I'm not sure what is in the future. He gets so frustrated because he doesn't feel sick, he wants to get out of bed but as soon as he stands his pressure will take a dive. He just doesn't see or comprehend the danger of his condition at this time. If he gets really out of hand with the nurses I may have to ask that he be mildly sedated. I just don't know what to think or do at this point...

Sept 14 2009

Been a tough few days. Dan's recovery from surgery has been very slow and painful. Sleep hasn't come easy for him and the effects of that along with loss of appetite are very evident. He has tremors and jerks that only dissipate when he does sleep sound. Saturday night he slept very hard for 4 1/2 hours and the symptoms subsided. Sunday after church I took him out to lunch and he ate a good lunch. Other than that he has only had fluids and instant breakfast. He generally doesn't have loss of appetite, in fact he usually is eating something almost all the time. I'm not sure if this is a side effect of the antibiotics or if he has an infection. He is showing no signs of fever outwardly. He is back to sleeping restlessly with body jerks today. I have taken over his meds just in case he hasn't been taking them on the right schedule and it's contributing to all these problems. Tonight will probably be a rough night. My hopes are that I can get him back on a regular eating schedule along with his meds and control his fluids. The key issue here will be making sure when he wakes up at night and gets out of bed that I get up as well and keep an eye on his fluids. I think he still has no idea how much fluid he drinks in the middle of the night when he is not fully awake nor aware of what he is doing.

Sept 11 2009

Where were you 8 years ago?
I was working at the customer service desk in Winn Dixie. The marketplace bank had a kiosk next to me. The worker there came out to me saying that a plane had crashed into the WTC. All of a sudden you could here cell phones ringing in the store. People were making there way up front to the banker who was getting updates over the phone.We were all crying when the second plane hit, we knew it was going to be a bad day.We dimmed the lights in the store and watched as many customers left in tears. It was later that day that I found out that one of our employees had a relative that worked at the WTC. They were one of the survivors.On my lunch I went to the deli a few doors down to watch the news coverage on their TV. It was a horrible sight. We knew in the store that the buildings had collapsed but seeing it on video was horrible to the core. It really seemed surreal that we could be attacked like this. We lived in such a false sense of security. I will never forget. God bless all those souls lost and the loved ones they left behind. As a nation, as Americans, as humans, yes we were changed, hopefully for the better.

Sept 9 2009

Dan is home from the hospital! Yay!!. It's funny how I get very broken sleep when hes home and even less when he isn't. Guess the sleep only comes when I know he is sleeping peacefully in bed next to me. Boy is he sore...the incision in his groin is extremely painful for him when he gets up or down so for the next few days he just has to tough it out. I have to help him in and out of bed. He can shower in the morning though thanks to the glue that they use instead of sutures or staples. Poor guy has been through the mill last couple of days. I am pretty wiped out so I am calling it a night early...just very very thankful that he is home. Thank you Lord.

Sept 8 2009

What a long day this has been! Our Anniversary was today, we have been married 8 years. Hard to believe that over half of those years Dan has been disabled.
This morning we got Dan to the hospital, registered and then had to wait over 3 hours to get him into surgery. This surgery is to place a new dialysis graft in his left thigh because the graft in his right thigh has closed up and is no longer usuable. It's the waiting that just wears you out and makes the day just drag. The surgery itself took just over an hour, then 3 hours in recovery so by the time Dan finally got into his room he was wiped out. I would have stayed until late tonight but I knew as long as I was there he would fight to stay awake and right now he needs sleep. The surgery itself went very well according to the surgeon. The access will have to heal for at least 2 weeks before it can be used but the sooner we get the catheter out of his shoulder the better. The risk for infection is just too high in him. Once he comes home tomorrow my work will be keeping an eye on his incisions, one in the crease of his thigh and groin, and the other in the center of the graft where it is stitched to the muscle to keep it in place. Thank goodness they are glued and I don't have to worry about staples or stitches. Tonight I will be up late, I always have a hard time going to sleep when Dan isn't home. Glad he will be home tomorrow...I miss him already.

Sept 5 2009

Wow, it's been a while since I posted here. I guess in my own way I have been trying to deal with stuff internally...has it helped? probably not, but at least I have a somewhat clear head and have not given into the temptation to dull the shock with alcohol, yes I have been tempted to buy some margarita mix and have at it...that would just create more problems without solving a single one. We got the letter from the transplant center explaining why they have turned Dan down for listing and what avenues he may now take, seeing it in writing put a whole new spin on the whole situation...made it more concrete, final. Dan finally opened up a bit, a very small bit, and admitted he has had some bad thoughts, which means he has had thoughts of stopping treatment or suicide or both.His anti depressant dose has been increased so hopefully that will take care of that. If it comes back though we will have to get him in to see a psychiatrist. He has a lot to deal with right now and it's part of the grieving process he now has to go through. Whether or not he will see it that way...who knows, I tend to think not. At some point in the very near future we have got to talk about this and get a plan formulated to insure he stays healthy. He has made comments here and there which point towards his desire to pursue the transplant further by meeting with the surgeon, but he has yet to actually come right out and say it. I think he is afraid of going through the rejection in person.Until he can open up to me, and talk this thing through, he will never be able to gather his thoughts enough to say what he wants to the surgeon. I have also been thinking that the fact that he has no friends, no one to hang out with but me might be contributing to his depression. He has met a lot of my friends from church when he goes but we don't have anyone close by that we can meet for fishing, dinner, a movie etc... I think I may end up registering him with some kind of community service where someone can spend some time with him at least once a week. He needs a man in his life that he can have guy talks with and pal around with. I have found a wonderful comfort and encouragement with the women at church and I wish Dan would tap into that resource as well, the wall is still there...I'm hoping the cracks I see in it will start to break it down. I guess none of this will really start to happen until Dan finally makes the determination in his mind that he has decided to live. Right now he is still in that anger and self pity phase that keeps him locked up in a battle between the desire to live and get healthy making changes and that rut that says he's going to die anyway so why change anything. Where am I in all this? At this present time, until he opens up to me...on the outside keeping watch and praying he will open the door. My instincts are kicked up a notch, I listen to what he's not saying, I watch when he doesn't know I'm there to see if he's reading or in deep thought staring off into space. I watch how he walks, if his eyes light up or not when he smiles. I look for changes in his posture hoping to see the back a little straighter, the shoulders a little higher and his head up, then I will know the life struggle in him is winning...

Aug 30 2009

This weekend was amazing!!! Friday night and Saturday I attended the Beth Moore seminar live simulcast in Titusville. It was great seeing friends I have not seen in a year. The event was awesome. The Holy Spirit really uses Beth to help us look way deep down inside ourselves to those dark spaces where we hide pain with the hope of never letting it surface. She really led us, inspired by the Spirit of course, in bringing that darkness out and recognizing our need to lay it at the foot of the cross. That is when our Lord can truly heal us, with the Holy Spirit enveloping us in His warm embrace we can let the hurt out, feel the healing balm of pure heavenly love as we let go of what has been stealing our joy even though we had buried it so deeply we didn't know the power it still had over us. People may wonder, "How can God comfort us in our worst imaginable pain when He is so far above us and removed from pain?" My answer is this...He can comfort us in pain that would break us without Him because He has endured the most unimaginable pain. He gave up His son, watched Him die a horrible death, but even before His last breath...Jesus took upon himself all the pain and suffering everyone would ever endure from that moment on. Everyones pain, all at once, He went through that to ensure that no matter how unbearable it is, He has endured it and can comfort us while the pain is there and heal us from it. That is my hope...I know a day will come when I will be so utterly heartbroken and the pain will be unbearable that without the comfort and help Jesus will give me...I would be utterly crushed by it's weight. Will the pain be real...oh yes...will I be able to survive it...only by the grace and mercy of a God who endured it first. I discovered this weekend that I truly want God to delight in me...I want the heart of my desires to be in line with Gods own hearts desire...to have a deep lasting, loving relationship for all eternity. Trusting in Him is a solid foundation to building that relationship. I trust Him completely with that deep hidden pain that I brought out and laid at His feet, I trust in His promise to heal that buried wound the pain left me with, I trust Him to always be with me and never forsake me in all my darkest trials. I believe in His faithfulness, and that it will sustain me always.
This mornings service went right along as a wonderful companion to the Beth Moore seminar, putting on the armour of God is a vital part of trusting in God completely and trusting His word to be our sword in the fight against the enemy who strives to convince us that we should hold onto that deep hidden pain, that it makes us who we are, shapes our character...that's not what God created us in His image for...not to dwell on past hurts and mistakes, but to dwell in Him and His word. Wonderful weekend for sure...and the icing on the cake...Dan went with me this morning again...he was wide awake...following every word Pastor Mike said, reading scripture and writing the bulletin points...I think God is speaking to Dans heart in a very profound way and now...I believe Dan may be listening...
I am starting a new adventure...Adult bible class started this morning in the study of the book of Revelation...I'm so excited!!!!
Dan spoke to his mom this evening...he has chosen not to tell her what the transplant committee decided for whatever reason...I just hope he is seeking God in his own way for comfort and support...


Aug 27 2009

I now know the hardest part of care giving, not necessarily for me, but for Dan. It's the roller coaster effect. Yesterday we got awesome news from the vascular surgeon. There are no arterial blockages other than the dialysis graft itself. There is calcification along the walls but good blood flow from the abdomen down. The plan now is to go in for surgery and put a new graft in his other leg. The old graft is useless and repair just isn't an option. I called and left a message with the transplant coordinator giving her the details of his upcoming surgery. Yesterday was a great day. We were both filled with hope and confidence that he had gotten over a potential major hurdle to being transplanted.
Today started as normal, dialysis this morning...lunch afterwards, a good morning. When we got home there was a voice mail from the coordinator stating that she got my message and the committee had met and she needed to talk to me about their decision. I called back and she started naming off a list of all the reasons they determined Dan was no longer a candidate for transplant surgery. His heart muscle weakness, his dependence on oxygen, his smoking habit, his non compliance of their fluid restriction.She told me that they have given Dan the option to come up there and talk to the surgeon in person who I guess had the biggest objection to operating on Dan. I gave Dan the phone because this is his decision and he needed to hear these things from her, not me. After they hung up Dan went into the bedroom. There was a tech at the door who was here to replace our router...bad timing...so Dan was alone for a short time. When I went in to check on him he was very upset, understandably, and wanted time alone. After the tech left he was in bed but when I told him I was going to the store he wanted to go. We went to the store to get a few things, Dan needed to get out of the house. Since we have been home he has been in bed, he won't get up to eat...I guess he has to work this all out in his mind.
The roller coaster...going from being on top of the world full of hope and confidence, to having the ground ripped out from under you...I can't imagine what he is going through. It breaks my heart to think of the fear, the emotional pain,the despair. I have asked him if he wants to talk to our pastor, his bother, mom...he says no. I asked if he wanted me to pray with him...he says no, so I pray over him while hes asleep.

There is life on dialysis, no it's not always an easy life. He will have to make serious lifestyle changes to extend the time he has. Stopping smoking, changing the way he thinks about fluid consumption, getting out more and walking. We have already made changes in his diet, more will have to be made. The biggest change is going to have to be in his emotional and spiritual state. He has lost hope right now, and needs to find his way to the only hope we have, Jesus, on his own. I can't give that to him, Lord I wish I could...I can only be a witness to what life with hope looks like and hope the eyes of his heart see it.

"I'll praise You in this storm,

and I will lift my hands,

for You are who You are,

no matter where I am.

And every tear I've cried,

You hold in Your hand.

You never left my side,

and though my heart is torn..

I will praise You in this storm.

I lift my eyes unto the hills,

where does my help come from?

My help comes from The Lord,

the Maker of Heaven and Earth"

"Praise You in The Storm",

Casting Crowns

Aug 25 2009

Sunday was awesome! Dan surprised me with the desire to go to church with me. I was so happy that not only did he wish to go, but he felt really good. It was great having him beside me during the service and to hear him being prayed for. I think that really spoke to Dans heart to hear his name and the heartfelt request for his healing. Pastor Mike didn't realize that Dan was there until after the service so I know that Dan was truly being ministered to by our Lord that morning. Dan enjoyed the worship, he heard the message and has said he will go with me more as long as he feels up to it. I know this is what God wants and He will provide the way for Dan.
Monday started really well. Dan had his new mouthpiece delivered so he can once again use his c-pap machine while he is sleeping. This is going to work so much better for him and now that he has this new device he will actually use the machine.Dan did have some distress with his breathing Monday night but not as bad as I thought he would considering how heavy he came off on Saturday. He tried very hard to control his fluid intake and It made dialysis this morning a little better but they still were only able to take off what he had gained and nothing more so we are hoping that Thursday and Saturday his treatments will be better.
Yesterday was a tough day for someone near and dear to my heart.I know what she went through was very difficult. I cannot imagine the pain of taking a pet that you nurtured and loved from the day they were born. She hand fed this pup taking the place of it's mom, gave this pup a wonderful loving home for years. I know that having to put this dog to sleep was very heart wrenching so I send love, comfort, and support to her knowing that she is full aware that the greatest comfort she gets is from the God of all comfort but even though we are across the country from each other we feel each others joys and sorrows and share so much in life.Having this kind of support from different avenues is so vital to keeping a healthy mental attitude during care giving. It's important for each of us to know that we all share the same range of feelings from fear,sorrow,joy, and sometimes anger and resentment. These feelings are going to surface. As ugly as they are and as much as we want to avoid them. The best way I have found to deal with them is this. Know that we have a loving God who is merciful and knows our every hurt. He is faithful to calm our fears, ease our pain, and shower us with His Grace. When these feelings come, don't suppress them, let them out, pray for peace, give them up to Him, and accept the peace that is given.

This is not my blog for the day, more will come tonight but I have to right this now while I am being led by the Holy Spirit. Several weeks ago I was watching The 700 Club as I have done on a semi regular basis since my coming to know my Lord. On this morning I was led during the healing prayers to place my hand on a small affliction I had that was nothing major, just a nuisance type affliction. As I prayed with the the others on the show I was healed. Of course the enemy for several days afterwards kept putting the thought in my head that it wasn't really a healing, it was just the care I had given it and it was coincidence that it stopped bothering me. This morning the spirit nudged me with this message from Christ himself,:" If you trusted me, even tested me with this small affliction, and I was true to my word of healing that, can you now see that you can trust me with the Big healings you are asking for?" This spoke so strongly to my heart. I have been fretting over issues with Dan at this time...arterial blockages, transplant issues, blood pressure issues...Jesus told me not to rely on the Drs and surgeons, it is Him who is going to do the healing, trust in Him and don't worry about the hows and who's....just give Dan to Him fully, trust in Him fully, and let Him do the healing.

Aug 21,22 2009

Yesterday was a great day. We didn't go fishing...Dan didn't wake me up, he let me sleep in.We had a very relaxing take it easy kinda day. We watched a movie and just hung out together. We did go to the beach yesterday evening before sunset for about half an hour and watched the surf and surfers. The waves were great, some were about 7'. I took some video and photos. Last night I was pretty wrapped up in storm coverage of hurricane Bill. All in all, it was a very good day.

This morning after I took Dan to dialysis I came home and was just mesmerized by the surf, it was still a good swell thanks to Bill so I sat here the whole morning and just reflected on how blessed I am to be able to live on the coast and enjoy God's creation in all it's splendor. I just don't see how people can overlook the wonder of God's hand in the creation of this Earth. Just watching how the waves crested, the pelicans fishing for food while skimming what looked like inches from the cresting waves. The sound of the waves pounding the beach as they come ashore. There is so much power and beauty in the ocean especially when the sunlight in the morning reflects on the moving water and glimmers like diamonds. Needless to say I got nothing accomplished that is worldly, but I accomplished so much spiritually while hanging out with God and praising Him for what I beheld out my window.
I received lots of birthday wishes from fiends and my kids which always makes this day a little easier...
When I went to pick up Dan I was very surprised to find him already unhooked from the machine and the machine off...I always get there a few minutes early. Apparently his blood pressure dropped so low that even after they gave him quite a bit of fluid back it still didn't come back up, so they had to turn the machine way down for the rest of the treatment and ended up taking him off early. Needless to say he is feeling poorly because he still has toxins in his blood and he's heavy. I dread this Monday and Monday night because he won't have another treatment until Tuesday. I will sure be glad when we get his vascular situation straightened out. We will find out more on that this Wednesday morning. I see Dan spending a lot of time in bed the next 2 days and that doesn't help with his emotional health at all. Sometimes I think the emotional part of care giving is much more difficult than the actual physical part. I'm very thankful that God is in control and I can draw strength from Him. His Grace truly is sufficient and our Hope is in His mercy and faithfulness.

Aug 20 2009

The morning started early for dialysis. Dan had a rough morning. His blood pressure bottomed out so they couldn't pull much fluid weight off of him. When I got there to pick him up the nurse was irritated, I guess they are getting tired of Dans excessive weight gain. I had to sign an "intermediate disciplinary" form for him because of non compliance of fluid restriction. I'm a little concerned about this for a couple of reasons. First, I am very uncomfortable with the idea of these reports going to the transplant team. If they think Dan will not comply with Drs orders they will not do the transplant. I cannot support the idea that if he wont restrict his fluid during dialysis that he wont comply with his meds, to me that seems ridiculous. I also see this as an opportunity for the patient to get the misconception that if the team decides not to do the surgery because of these notices then they will blame the kidney center for not getting transplanted. It all seems like way too much bureaucratic monitoring to me. I feel like a parent that has been called into the principles office because my school kid has bad grades or something. There is a disciplinary meeting on Monday that I have been "invited" to attend.I think this whole healthcare thing has made it to where they are going to start picking and choosing who is the most valuable to spend the funds on for these surgeries. Only problem is, the program hasn't even started yet...so what does this mean? Is someone coming down on the center and the proverbial poopoo is running downhill? The wording in the notice is very biased. It makes it sound like Dan is refusing to comply instead of that he is struggling with the restriction. I'm not sure if I should go to this meeting or not....do I play the game and appease them or speak what I think about it and risk even more biased notices and reports that would not be in his favor? I'm really going to have to pray on this one. Needless to say Dan came off the machine heavy which means he feels like doodoo and spent almost all day in bed. I think maybe I will suggest in the morning that we go fishing,if he's up to it, give him something else to think about. I don't dare talk to him about this because he would just go off on them...he's so stubborn and doesn't think before he lashes out in anger and this would send him thru the roof.
I did some volunteer work at the church this afternoon folding bulletins. Had a great time with the "folding ladies", we folded over 400 bulletins I believe, all with inserts as well. Once again I was blessed being in the company of these dear sweet ladies. It felt good to do service for the church, I bake the communion bread but that's only every other month, this I can do weekly and it gives me another opportunity for fellowship. I cherish the times I have for the companionship, and feel so blessed every time I get them.
Even with the small aggravation this morning, today was still a good day. Every day I have with Dan will always be a good day! Thank you Lord for each day you give me, every blessing, and for Your Perfect Peace!

Aug 18,19 2009

I am posting for two days this evening because last night I wanted to go to bed early to get a good night sleep for today's busy schedule.
Yesterday was my sons birthday so I talked to him for a short while which always lifts my mood. He has a way of making me laugh and feel good every time I talk to him.
I was able to get a lot of really good feedback from my life group, it may be small but it's spiritually huge! These two ladies have a strong walk with our Lord and I truly hope one day to be as strong in Him as they are.I went to the church office afterward to find out if we had someone in our church members that did financial planning. I need to get some budgeting going so we can be prepared for the after transplant expenses and care. We do have someone and the call will be made on my behalf to see if his schedule allows for him to take on another client. What a blessing that will be. Just knowing that I can get control over something in all this is a tremendous help and I know will help keep these ruts from taking control over my life. My wonderful best friend/sis from Washington state called me at bed time and ended my evening on a loving note. I love talking to her...even as I write this she is going thru the same things I am...she is such a vital part of my life and words will never be adequate enough to express how dear to my heart she is...thank you sis, I love you!
Today was a Good day! The morning started with a very powerful devotional study on forgiveness at bible study which really brought me back to focusing on my Lord instead of my present circumstances. I got in this rut by looking horizontally instead of looking vertically. All it took was for me to lose focus and take my eyes off Jesus for a short time and wham! Rut moves in. The mentoring and nurturing I get from these women in my bible study group is just amazing. God surely blessed me the first time I walked into that study and felt His presence so strongly. After that awesome encounter with Christ it was off to Orlando. I was ready to face anything including the long two hour drive just to get there. Dan was able to rest all morning and was physically prepared as well. We met with one of the surgeons who do the transplants. We got a very good feeling from this meeting but of course he is just one voice in the committee when it meets next week. He was very open and honest in saying that Dan is a high risk case and insured we truly understand exactly what the risks are. One thing he did say though is that he has high hopes that Dan will be called within the next 6 months, so that led me to believe that the trend is that this may be the last year he would be considered a viable candidate, very premature, but something that I picked up on. Dan feels very good about this meeting today and that a very very good thing. The more positive his outlook the better he feels and harder he will work at getting healthier for the surgery. He's a man and a stubborn one at that so of course his feelings are that he will be fine and all this fuss about him being high risk is just a lot of poopoo. I'm hoping he will be more receptive to some good structuring in his diet and other issues that are a deterrent to his health. All on all...today was a good day, came home to a message on the phone that the call to the financial advisor has been made and the gentleman will be more than glad to assist me when his schedule clears in a couple of weeks...awesome!!!


Aug 17 2009

Today started out pretty good. I usually get to sleep in on Monday mornings but this morning I was up early to watch a rocket launch so I stayed up. Before noon Dan took Jazzy outside to the field next door and he sat in a chair in the shade and let Jazzy play in the field for a bit. It is so hot and humid right now that they were back inside after only about 20 minutes and I could tell that he was struggling a little to breathe. He has to be so careful about his activities even in the morning when it wouldn't bother a healthy person at all. He was much better after he sat in the AC and cooled down and took in some oxygen.He did good the rest of the day. We watched a movie here at home which was nice and afterwards I went in to take a nap. I felt really sleepy but as soon as I laid down my mind started racing.I generally don't feel anxiety, at least I haven't for quite a while. I started feeling this sense of being overwhelmed, I still haven't shaken it. I guess I've been in denial about the rut I seem to have gotten myself into. I just can't seem to get a handle on things anymore. I do just enough to get by telling myself that I will get it all caught up the next day, over and over. I do just enough of the laundry that we live out of baskets, I do just enough dishes that we live out of the dishwasher but I still have to handwash what I need to cook in, the trash gets taken out into the hall and sits there for a couple of days before I take it downstairs to the dumpster. This rut just won't leave. I took a shower and see that the border paper is peeling off the walls from the moisture, it needs to come down.The sink needs to be wiped,shoot I need to go from one end of the house to the other because I have done just enough for so long that I'm too far behind to get caught up. This seems to be a devistating pattern I see emerging not only by the normal household affairs but with everything, phonecalls, bills, finances in general. We have gotten so far in debt that I feel horribly overwehelmed by it. I guess I'm just bending under the weight of feeling like I'm doing everything here in every aspect of our lives. I'm getting snappy with Dan when he asks me to do something for him that I know he can do himself sometimes , but I also realize that there are times when he is in pain or in shortness of breath and can't do it. Am I getting burned out? God I hope not, what in the world would Dan do if I just couldn't do it all anymore? I think that may be a lot of the problem as well. I feel so depended on that it overwhelms me.I started this blog so I could share the experience both good and bad with intention of letting out feelings that I cann0t share verbally for what ever reasons so here I go...where is my joy? Where is my peace? Tonight I feel nothing but this rut I'm in. Is it wrong for me to scream inside that this isn't fair? I married a healthy man...I gave up a lot to do so. I feel resentment right now, not bliss. I feel angry that I have allowed this to overcome me like this. Does this make me a bad person? Where is my faith and why is this darkness stealing my joy? This could be nothing more than menopausal hormones misfiring and in the morning I may feel just fine and get my house in order, but right now...I'm angry, discouraged, and everything but happy. Will that keep me from taking care of Dans needs...of course not, the caregiver is always on autopilot and ever ready to jump into action. Maybe it's the heat and spending too much time in this apartment.Maybe it's the lack of companionship,friendship. I know that I am always surrounded by Grace and Love spiritually, but I feel isolated emotionally and physically, I feel alone, sad. Are these feelings normal for someone who has the responsibilities that I have right now?...maybe, I don't know....would I do this over again given what I know now?...better ask me tomorrow, tonight I don't trust the answer I would give. Tomorrow morning I will take Dan to his treatment, then I will come home and either put some music on and get this stuff done, or I will go back to bed. I seem to do that to escape now days and call it a nap. Either way, tomorrow is another day and it's probably a really good thing that this day is over and I can put it to bed.

Aug 16 2009

Today was awesome! It was so wonderful welcoming our Pastor back from his summer sabbatical. He looked refreshed and ready to lead us in God's will. I have really found a great home church that is so nurturing in every way. I really wish Dan could accept and draw from the blessings that come from being so closely knit with the family of God. He always says that he draws his strength from me, I wish he could see how truly weak I am, and that all my strength comes from God. Some walls are only penetrated by God himself I guess. I sure am thankful for my fellowship and all who pray and encourage me!
When I got home from church Dan asked if we could go to the movies, I really needed to get some laundry and stuff done but I figured as long as he felt up to going then I should take him. We went to see District 9, what a very very strange movie, nothing like I thought it would be. Definitely not a movie for kids. I can see where this will have the same following as Blair Witch Project did...it had the feeling of more of a documentary than fiction. Very violent and disturbing.
The rest of the evening was spent between tracking the tropical storms including Claudette and catching up on some social networking. I was blessed by a long time internet friend Melissa sending me a photo that I had lost track of.It was taken in 2000 and included my mom, Melissa, and I with Garth Brooks.It was probably the happiest I have ever seen my mom. It was just a few weeks before she was diagnosed with lung cancer, she passed a year later. A bittersweet memory...so happy, yet so sad. Cherished memories for sure. I just read a message from another good friend, in California, who used to babysit my kids. Lovely sister in Christ. She is at the Harvest Crusade, more cherished memories of taking her and seeing her go down into the field and accept Christ. She was also baptized with me and my family in 1995. God is so Good!
Yes today was a great day!

Aug 15 2009

The past two days have been pretty darn good. Yesterday Dan went in for the extra treatment so with today's regular dialysis they were able to get a lot of weight off him. It was a little tough afterwards today, his blood pressure dropped and he had white hazy vision but it was also very hot and humid so he had to get into the house and AC. He spent most of these two days in bed but I expect he will feel much better tomorrow. Dialysis just wipes him out and when he has 3 days in a row it really takes a toll on him. If we can keep the fluid under control better then he won't have to go through this again. Wishful thinking! I suspect because Dan is stubborn and thinks he can handle the fluid gain he will be heavy again by Tuesday. He just doesn't grasp the damage it's doing to his heart.He thinks the nurses at the center just have fluid on the brain and that's all they worry about. Guess he would have to literally walk in their shoes to understand. In his defense I have to say I don't know how in the world I would handle the fluid restriction either. It's like when you are almost out of milk, that's when you want it the most. I guess if you know you can't have a lot of fluid, you are always thirsty. I have been preparing for teaching adult Sunday school in the morning after our regular service. I enjoy my bible studies and life groups. They have been a vital support system for me.
I found out something interesting this evening, in fact right before I started writing this. Potato peels are really bad for dogs, but potatoes them selves are great for straightening out a dogs upset rear end...will have to remember that!
I feel energized this evening, we had a very tropical squall line blow through from a wave down south west of Florida that kicked up a little line of lightning and heavy wind and rain. It has been a very busy day for the weather enthusiast in me with the formation of tropical storms Ana and Bill, both in the same day. I tend to be glued to radar and satellite maps during these events. All in all...I will sleep very good tonight. I am concerned a little about later in the week...we have a trip to Orlando we have to make on Wednesday, I just hope the weather is manageable for that 2 hour drive back and forth. I love watching it, but I don't like driving in severe weather.
For most, the weekend is almost over...for us it is just beginning. So I will sleep in a little tomorrow, just a little, but Mondays are when I really get to sleep in and I love those lazy get up when I feel darn good and ready too mornings, unless there are storms around...then I can't sleep at all.
I talked to my daughter yesterday on her birthday...she has struggles going on in her life right now but I can't help her except to offer love,prayers, and encouragement. Things are tough all over and I don't see improvement any time soon. I talked to my 3 yr old grandson...what a character he is! I didn't know there were so many different ways he could tell me about his toy lawnmower. That is his pride and joy and he can talk forever to you about it. Thank you Lord for the blessings of grandchildren!
I think it's time for me to get ready for bed and another wonderful day tomorrow by the Grace of God it will be a Good day.

Aug 13 2009

Today started on a positive note. Another dialysis patient passed me a wonderful little message this morning:

GOOD MORNING

THIS IS GOD

I WILL BE HANDLING

ALL OF YOUR

PROBLEMS TODAY!

I WILL NOT NEED

YOUR HELP SO

RELAX

AND HAVE A GREAT DAY!!!

What a nice way to start the day.

After we got Dan set up on his chair the head nurse and admin for the center decided we needed a little pow wow about his fluid gain. They want Dan to come in for another 3 hours tomorrow as well as his normal treatment on Saturday. Dan got a little testy after the treatment because he feels he is being left out of the loop even though he was sitting right there and could've spoken up at any time. He just has a hard time accepting the fact that he has put himself in this position and it needs to be dealt with, still I have a feeling he will decide not to go in for the additional treatment tomorrow.I can't force him. He tried to start an argument at the restaurant we were having lunch at, but I didn't take the bait so he just had to work it out in his mind. I have had too many instances in the past when he was drinking after work where he would pick fights, and I'm not going there any more. We lost good friends because of his ranting when he was drunk. So he wallowed a little in self pity until we got home and he went to bed. He slept for a long time this afternoon and he felt a little better for a short time. He is having stomach problems and I know that doesn't help matters very much. I refuse to feed into his pity parties any more, and I know that gets to him. When it's a valid complaint I'm there for him don't get me wrong, but when he's just venting I let it go.

Had some neat storms in the area today, for some strange reason that always makes me feel better, I guess now that I see them as a beautiful act of God instead of something to fear, they excite me. I love taking photos of them and posting them on Myspace for Tyler to see.

I had a great phone conversation with my sistah out in Washington state late last night before bed. I always love talking to her, she soon will be in the same position as caregiver to her hubby as I am so our conversation was bittersweet. She was here with me during a very scary time back in 2006 when Dan was diagnosed with endocarditis and they told us he needed open heart surgery that the cardio doc didn't expect him to survive. Very dark days were those. Needless to say the Doc was wrong and Dan survived, but the complications haven't stopped since.

Hope is such an important factor in our lives, it truly is the glue that keeps us held together through the storms of life that try to blow us away. I would be completely lost without the Grace that my Almighty God so lovingly pours upon me each and every day!

Aug 12 2009

Have you ever woken from a dream and tried to go back to sleep to finish it? I believe God sometimes chooses to speak to us through dreams, it is a biblical occurrence after all. Does He do it today? Maybe, maybe not. I woke up from a dream with the urge to go back to sleep to finish it. It seems to have bothered me more later in the day, but first the dream.
I was in a house which represented the present. I was exactly where I was supposed to be. It was very stormy with heavier storms heading my way. There were 2 men in this dream, one represented the past, the other the future. How I knew these things I have no idea, I guess in my dream state I just knew. The 2 men were men I know now and love dearly as brothers in Christ. One is indeed from my past, the other is in the present but not someone I see often. I was under obligation to stay in the house for 24 hours. The man who was the past was very upset that I was sending him away before the storm really got bad. The other man who was the future was cutting trees, (very strange in a storm) and was very excited ( an understatement, he was ecstatic, and so was I) that I was not sending him away. There was anger in the man who was leaving because I was not sending the other away. Just as the man left in the storm I woke up. That's where I left the dream, feeling like there was unfinished business I tried to go back to sleep to tie things up, but it wasn't meant to be. I thought I had forgotten about it and went on with my morning.
Bible study this morning was awesome! I love being mentored by such loving, devoted women of faith. We have such a wonderful time of sharing when we are together. I believe though that while we were enjoying some great conversation about kids and grand kids that deep inside something changed in me that set the tone for the rest of the day. Everything seemed fine when I got home. Dan had a successful meeting with his c-pap tech and they formulated a plan that I think will be great for him.
Soon after I made lunch and Dan laid down for a nap I found myself slipping into a funk. I had a sink with dishes to be done, a laundry basket full of clothes that needed washing, and absolutely no motivation to be found anywhere. I sat at my computer and wasted time doing meaningless stuff just to pass time. I look back now and can see where I was being oppressed. I started thinking about my kids and grand babies being so far away (3000 miles) and realized that my daughters birthday is in 2 days and my sons is 4 days after that. How in the world did I let it get so close before I remembered? I haven't even gotten cards for them. So along with lack of motivation along came guilt to play, and my mind went straight to the playground with it. I swung on the swings of life with guilt right beside me taunting me about what a bad mom I must be to have not remembered my children's birthdays coming up. I guess self pity was the one pushing me on the swing. What a depressing playground lot we were! My response to this funk was to make a pot of coffee...I'm just tired I told myself. So I drank a cup of coffee....looked in the kitchen at the sink with dishes in it, and did what any person on a day like today, feeling the way I did would do...I went to bed.
After waking from a nap I actually felt better, so maybe I was just tired. Sometimes I just have to let myself be tired, I'm allowed that right? I have this little "Maxine" voice in my head sometimes that says "Oh honey your just menopausal, get over it" I guess I have yet to accept that some days are going to be funky, just like Dan has ups and downs, so will I. It's hard to keep up the pace of caregiving if you cannot accept the fact that you are not super human, you have off days too.
Reflecting back on how this day started good and went weird I thought about the unfinished dream. I guess dwelling on it somewhere in a back corner of my mind left me feeling incomplete all day and that opened the door for the enemy to oppress me because of my past, after all I chose to move so far away from my family.The part that intrigues me now though is how excited the future representation was in my dream. It was like God is telling me that no matter how wrong my past was, I am right where He wants me to be and the future is excited to welcome me because it's full of God's work in my life. As for my motivation for doing the dishes...I'm sure it's around here somewhere, I probably just misplaced it along the way. I will do them in the morning while Dan is at dialysis and I have the house to myself. I did do the laundry though.


Aug 11 2009

Last night was rough. Dan slept in his chair all night so every hour or so I was up checking on him. Very restless night for us both.
The day started with getting him ready for the the CTA scan. That was a challenge with his jerking but we managed to get him in the shower and dressed. He did end up on the floor once right before he got in the shower, his knees buckled under him and he slid down the wall, he's alright with the exception of a jammed big toe. That's going to hurt for a few days.
Thank God for patient techs! Despite all the shaking and moving they were able to get the IV in him for the contrast and managed to get him still enough for the scan. Dialysis afterwards was deffinately needed and welcomed. Dan gained way too much fluid weight, 6.4 kilos, each kilo being 2.2 lbs of fluid.Thats like carrying 2 gallons of milk in your body surrounding your heart and lungs. So the nurses and techs gave him a bit of hard time, stubborn man...when will he learn?
Thankfully they were able to pull 6.1 off of him and the jerking is almost gone. After Thursday's treatment it should be all gone. While he was at the kidney center I spoke to the tech for his c-pap, and we may have another option that would get him back on the machine while sleeping without having to wear a full face mask, I am very relieved to hear that. The tech will be here in the morning while I am at my Wed. morning bible study. I figure maybe with me gone Dan will speak candidly with him. If needed he knows he can call me to give me details after I get home from the study. When I am with Dan during these appointments and such I sometimes feel that he relies on me too much to speak for him and he needs to speak up whats on his mind and heart...not what I think he wants them to know, so I think me not being here in the morning is a good thing. I did manage to get an hour nap this morning...that was nice...LOL
On the 1 to 10 scale for the day(10 being worst)...Dan started at 9 and ended at 3 to 4. As for me...I am relieved another Monday night/Tuesday morning is over. They are always a challenge, some more than others...this was one of the worst.


Aug 10 2009





It's been a long journey that started back in December of 2004 when my husband went into congestive heart failure. Unknown to us at that time his kidneys were shutting down. On January 29th 2005 he had his first dialysis treatment and has had them at least 3 days a week ever since. Dan has been off and on the kidney transplant list for 3 years, and is currently on hold pending results of tests he has to have on a yearly basis to determine if he is healthy enough to be transplanted. We will know before this month is over. He has had numerous complications from the kidney failure over the past 5 years ranging from infections, to congestive heart failure, to open heart surgery to replace a mitral valve. Dan takes many medications that cause a wide range of complications from side effects so we never know what each day will bring.





Today is Monday, Dan hasn't had dialysis since Saturday which is his normal schedule, this is what they call his weekend. It's the only period in the week that he goes more than 1 day without treatment. Mondays are always rough. On a scale of 1 to 10 , 10 being worst, I would say that tonight he is at 7 to 8. He has a lot of fluid on him, his eyes are swollen and he has the jerks...the fling food across the room kinda jerks, so eating was a challenge for him this evening. Hopefully he can get some sleep he has a challenging day tomorrow. The day will start out with a CTA which is a CTAngiogram to find blockages in his arteries which are causing a whole bunch of problems with his treatments. Following that procedure will be his treatment.
For me today, I have had a pretty good day. I did have to really watch Dan because of the fluid on him he has breathing issues so I always have that in the back on my mind. I know the time is coming when I will have to completely take over Dans meds. I monitor them now, and am finding that more than once he has skipped a dose here and there.I really try to give him as much independence as possible but, it's looking like his memory loss is getting worse. Another side effect of all his meds. I sometimes wonder if he is being over-medicated. He has so many things going wrong right now it's a tough call.
Today I kept busy with twitter (I love my storm chaser twitterbuds), facebook, and my normal emailing. Storm chasers you might wonder... I live my adventures vicariously through them. I love the online streaming of the race to see a great super cell out in the Midwest drop a wall cloud then spin a nice little funnel into a tornado. I have even learned what terms like...mezo, punch the core, convection, evasive action, mean and am getting really good at reading radar. I would love to go on a chase someday...I know 3 or 4 chasers that I would really learn a lot from. For now, I ride along in my desk chair. I have really gotten some great photos of storm clouds here on the coast, I guess the weather has fascinated me ever since I lived in Tenn as a teenager and developed a raging fear of thunderstorms.Moving here to FL really made me learn to respect lightning rather than fear it ,and now I see the sometimes tragic beauty of storms.
Being unemployed at this time is a God send because of all the issues we have dealt with and still are dealing with. I worked for almost a year until last March but Dan was healthier then. Do I miss work, yes...even tho it's hard work and I'm getting old and grumpy...LOL, I love being an electrician. It's an awesome thing to build something from the ground up and see the fruits of your labors when you turn on the lights. It's very tough for construction workers right now so I am taking a forced vacation.
Tonight I am a little tired, but I know I won't sleep well because Dan will be up and down and so will I. I wish he could get used to his c-pap machine's face mask. He has severe sleep apnea but the mask gives him anxiety attacks when he wakes up with it on his face so he has given up on it. Listening to him snore is both a blessing and a curse, a blessing because it means he is breathing, a curse because I know many times during the night, he will stop. I can't help but go in and check on him every time it gets quiet.
How do I cope you might ask? Faith, I know God is in control and whatever is happening in our lives, He is working it for our good. That gives me the freedom to have Peace that only The Lord can give. It strengthens me, it sustains me, He is my refuge and comfort.