Dan has decided finally that he can get well. My problem with that is that his faith is in a little pill that isn't FDA approved. They can't even use the name of the pill on their website. That is not a good thing to me! But he is sure that little pill, with some fat, and a lot of water will make him well. I wish that faith was more in the Lord and less in a man's word. He says that every time he prays to get well that, that is what the Lord tells him to take. But he was sure that it would work from the beginning. He took it for a while but it didn't seem to help back then but a little faith in said pill might make it work. Who knows. He did drop out of the clinical trials but that was because they just weren't helping him at all. Matter of fact it seemed to make him get sicker faster.
We have had a hard week. Between a biopsy, a breast lump, and a growth in my daughters uterus. But we have had all good reports so far. Dan's got a slight rattle in his chest and I have one more report to get thru and we are solid again. We are excited that things are going so well. We need that in our lives.
Monday, October 26, 2015
Sunday, October 18, 2015
I am tired
No one warned me that this was going to be exhausting. No one said it would be easy but I was not warned how hard it was going to be. Some days I feel so weak that I don't know where I will get the energy for one more need. Tonight I had to do all kinds of things for this man that I love that I never imagined doing for anyone. It is a hard job taking care of him and gets harder every day. Honestly I am just done. I feel overwhelmed and so tired that I can't see straight. Yet I am sitting here at 1 in the morning because I can't sleep. I have realized that being tired and being sleepy are two totally different things. Tonight was just a really hard night. As he called me over and over and over for more and more needs. I was sitting in our bedroom and he was in our bathroom. He has pulled things like this before but it has always been when he was scared and he was afraid he was going to die alone or he just wanted to know he was not in the house alone. This time I think he just wanted to see how many times I would come to the bathroom. He finally has decided that it is almost time to move him to the hospital bed. He can tell that Jeff is doing all he can and it is just barely enough. It won't be long before Jeff can't pick him up anymore. Then he will be in the hospital bed. We will have to once again rearrange the house so that he can have what he wants and needs near by. Another thing I realized today that at least one of our grand daughters are scared of him. She was playing tea party across the room from him and when I told her she could ask him she looked at me like a scared rabbit. I even helped her so she would relax or at least I hoped so. But no go. It is something I will have to work on. Because I can tell by his face that it hurts him when they are scared of him. So lesson of the week, talk to every one explain what is going on and why and most important explain that they can't catch anything and it won't hurt them even though it is hurting him. We don't learn a lot of new things anymore since he is probably at his worst or at least pretty darn close. He can't use any of his muscles. His bladder, lungs and now bowels are either not working or pretty close to done. His tongue doesn't work so his speech is awful. He tries to talk in paragraphs and I may catch one word. I try to pay attention to where he is looking so that I have a guess but it only works once in a blue moon. Next lesson- get everything signed early because that is hard enough without you having to sign a DNR for him or filling out his advance directive that says no machines for him. It feels like I am signing his death warrant but it is how he feels and by the time we got hospice he had already made these decisions just hadn't signed anything. So get it signed! That is it for tonight I am going to try to get some sleep. He changed from his bi-pap back to his c-pap and is noisy again but he can sleep better. No rest for the weary but there is for the sick and since it makes him happier that makes my life a little easier.
Monday, October 12, 2015
Here we are again
So here we are. It has been a tough couple of weeks and I got a bit down last week. I try not to because it makes things harder for us all. I haven't been able to help as much since I have been sick. But tomorrow is my procedure and hopefully the doctors will figure some things out and I will be back to work, helping Dan again. He is a lot weaker, has a really hard time talking because he is out of air, and is using more tube feeding than ever. He uses the tube twice a day and has a milkshake for breakfast. He loves that part! :) By the time I get done it is about 1100 calories which is still only half of what they want him to take in. But I add Carnation instant breakfast, a protein drink, milk and then a lot of ice cream. He really enjoys it. I think he misses a regular breakfast but most things won't go down. He just chokes and chokes. It is really hard. A couple of nights ago it sounded like he stopped breathing. There was a couple of minutes there where I thought he was gone. It scared me at first and then when we woke up the next morning and he was crying because he hurt so bad I realized that it would be a good thing for him not to have to hurt any more. I hate that he is in pain and he hurts so bad some days that he shakes with it. It is so hard, because I am trying as fast as I can to get his pain medicine in but it just doesn't seem fast enough. So we are having out ups and downs, as usual. By noon every day he is exhausted and his speech is really airy. It is really hard for him to communicate. Every one keeps looking at me like I know what he is saying but I have no ideal!! Some times I can get a word here or there but these days he gets frustrated with me but I really am doing the best I can. I am home from having my procedure done and barely awake and he is already wanting me to get things done for him. Sheesh! I am so tired but that doesn't stop his needs. I better get back to work!
Sunday, October 4, 2015
Not sure
When I first started this blog I had so much to say. These days I have gotten so quiet. You need to understand this is just not me. I can go hours without saying a word in a room full of people. As he gets quieter I am getting quieter too. As I sat and watched General Conference today they spoke on the 3 apostles who had died and the strength they saw in two of their wives (one wife is already passed on). I really stated thinking am I going to be that strong when it is Dan. Am I going to truly be okay or am I going to be tired and bitter. Will I spend all my time alone or will I get out and make friends, take a class, go to church? What am I going to be like? All I have ever been is Dan's wife. I find myself getting so sad. I started taking depression/stress medicine over a week ago. I am not sure it is helping because I am so introspective today. My biggest fear is will I feel like I didn't do something just right? Or if I had tried one more thing would it have worked? What about if I had talked him into going off those clinical trials would he have lived one more month/week/day? Will I have so much guilt that it will wipe me out? Or will my inner strength come thru and make me strong. Will the strength that got me thru all those years of raising my kids while Dan worked crazy hours or while he was TDY or while he was out of town. Will my faith sustain me? Will it make me whole? I am just not sure what will become of me or my family. So I pray every day for courage and strength but will it be enough. I don't know but as he gets sicker I pray harder. I pray that I am making the right choices, that this is God's will, and that Dan is happy. There is not much else I can do right now but pray it is enough.
Friday, September 25, 2015
Communication is the key
Last week was a rough week. I honestly didn't think I would make it. Between the chest pains and the flu on top of the doctor putting my on a new medicine for stress and anxiety, which by the way makes me sleepy if I take it in the morning and keeps me up if I take it at night. Either way I am blurry. I feel like I am on drugs which I guess technically I am. Anyway- My being sick got the message thru to my kids that I am not young and can't continue to do everything. So I am having more help around the house which is super nice.
Dan is talking softer so I can barely hear him most of the time. His head falls forward and when he picks it up it rocks all directions and he can only hold it up a short time. It is super sad for him and I can tell it makes him tired really fast. He also had his first catheter change out here at home and when he cried out I wanted to cry, too. It was pretty awful. He gets tired faster. He has been getting sponge baths since it is so hard for him to stay up but asked tonight before bedtime if he could get a regular shower tomorrow so he would feel cleaner. So we are going to try. Last Saturday I had to hold him up while she washed him. Not easy on either of us. Some times his legs go to sleep and then getting him up is almost impossible. His legs almost always stays bent now when he is kinda upright. So he looks like an S. And he has lost a lot of weight. He is down to 194 from 244. So they are watching his diet more. There seem to be more changes than anything around here. The one good thing is that he is not talking in paragraphs anymore, well not much anyway. He mostly talks in one word or a sentence. He also spells a lot which basically means that I start at A and he nods when I get that letter right and then we go to the next letter and I start guessing at A again. I never realized how much all the letters rhythm until he got sick. We were talking the other day about if he could get just one thing back what would it be. I choose speech. I think he would love his hands. Both of us wanted a way to communicate. I never realized how much time we spent just talking to each other. Whether early in the morning in the bed, on the phone while he was away or late at night just before sleep. I miss that more than anything. I want to know what he needs, if he hurts, how to help him. All the things I took for granted hearing from him, I want to hear just one more time. But it is not to be and I have to get used to it. It took me months to get used to not hugging anymore. Something we had done all the time but starting hurting him so we had to stop. Or holding hands because his fingers cramped up. They are not in a curved shape so we kind of hold hands again now. Now we are adjusting to something new. Every week something else new. Some days I think I can't learn one more thing and then I do. You can feel so overwhelmed! Now he is tube feeding, which by the way you start with a half can just to see how they tolerate it and work up to a can and then more as needed. Flush with 60 cc, one can and then flush again with 200 cc. Jeff can do it as good as I can now. Learn as you go. Learn one thing at a time and you will surprise yourself by all you can do!
Dan is talking softer so I can barely hear him most of the time. His head falls forward and when he picks it up it rocks all directions and he can only hold it up a short time. It is super sad for him and I can tell it makes him tired really fast. He also had his first catheter change out here at home and when he cried out I wanted to cry, too. It was pretty awful. He gets tired faster. He has been getting sponge baths since it is so hard for him to stay up but asked tonight before bedtime if he could get a regular shower tomorrow so he would feel cleaner. So we are going to try. Last Saturday I had to hold him up while she washed him. Not easy on either of us. Some times his legs go to sleep and then getting him up is almost impossible. His legs almost always stays bent now when he is kinda upright. So he looks like an S. And he has lost a lot of weight. He is down to 194 from 244. So they are watching his diet more. There seem to be more changes than anything around here. The one good thing is that he is not talking in paragraphs anymore, well not much anyway. He mostly talks in one word or a sentence. He also spells a lot which basically means that I start at A and he nods when I get that letter right and then we go to the next letter and I start guessing at A again. I never realized how much all the letters rhythm until he got sick. We were talking the other day about if he could get just one thing back what would it be. I choose speech. I think he would love his hands. Both of us wanted a way to communicate. I never realized how much time we spent just talking to each other. Whether early in the morning in the bed, on the phone while he was away or late at night just before sleep. I miss that more than anything. I want to know what he needs, if he hurts, how to help him. All the things I took for granted hearing from him, I want to hear just one more time. But it is not to be and I have to get used to it. It took me months to get used to not hugging anymore. Something we had done all the time but starting hurting him so we had to stop. Or holding hands because his fingers cramped up. They are not in a curved shape so we kind of hold hands again now. Now we are adjusting to something new. Every week something else new. Some days I think I can't learn one more thing and then I do. You can feel so overwhelmed! Now he is tube feeding, which by the way you start with a half can just to see how they tolerate it and work up to a can and then more as needed. Flush with 60 cc, one can and then flush again with 200 cc. Jeff can do it as good as I can now. Learn as you go. Learn one thing at a time and you will surprise yourself by all you can do!
Wednesday, September 16, 2015
My hospital stay
I learned some interesting things this week. One that if you are having chest pains you have to go to see the doctor. Who will put you in the hospital. Then you will endure a ton of test and come home a day later feeling gross and bruised. In the meantime Hospice had to come in and take care of Dan. Things I learned about hospice. First for a year and a half after your spouses death you can get counseling for free. Next in case of emergency they will come and do your husband's meds and supposedly anything else you ask for. But for us they didn't even put his bipap mask on. So my lesson of the week was you need to teach everyone you know how to do his medicines, bipap, and anything else that you do. We do things so without thought but make a list in case someone else has to do it. I had never planned to have chest pains (which turned out to be stress, as if I didn't know that). I had never planned to not be available to help Dan with whatever he needs. As the lessons we have learned of old- Plan ahead because you don't know what will happen tomorrow. What if you were hit by a bus walking across a street. Be prepared!
Saturday, September 12, 2015
Vacation
So we went on our first vacation since he became so disabled. It was truly a learning experience. I learned so much and a lot of it I can't even put into words. First- No one else knows how to take care of Dan so even if I go where they want to take care of him there is only so much they can do because it has now become second nature so I do a lot without thinking about it and I will leave it off a list if I am asked to write one. Second- if someone else volunteers to get him up, dressed and feed him breakfast let them. What a blessing that was. I realized that it was the first time in over 6 months that I didn't do it or at least have a big hand in it.
Third- Let others serve him. It helps them while giving you time out. What a blessed time it was.
No they can't do everything I can but my goodness what a relief it was to not have to do so much.
Fourth- When traveling carry everything (medicine wise) you can ever think he might possibly need. There is a LOT so take a van with lots of space. Take both the electric wheel chair and the manual one. The manual one is much easier to get in other people's houses who have stairs or even a big enough bump that the electric wheelchair can't get in. So you can visit everyone you want to.
Fifth - give yourself plenty of time to get there because it is going to take longer. Much longer than you plan. Plan to spend the night somewhere. We went 10 hours one day and it was a long day and we were all way more tired than you can imagine.
Sixth- lower you expectations.
Seventh- Get a hotel room with a disability setup. Make sure it has a roll in shower because the transfer tub is nice but I could have never gotten Dan in there.
Eighth- If you have hospice let them know a week in advance (or more) because they will set up hospice care for you wherever you go and you will still have support.
Now since I have gotten home I have learned that if you have anything on the inside of the tube of his catheter then it can clog up the works and cause a major blowout and then the pee will flow in his pants instead of down his tube as it is supposed to. After the blowout the bag will fill up quickly because it is now flowing but at that point change out the tube and bag so it won't happen again.
Last but not least, you know how everyone has a "I know someone who died of ALS" story. I got one today that gave me hope. When it first started I was so sad. I am not sure why anyone wants me to hear how their family member suffered and died. But they all do. Today's was good. The father hadn't been suffering at all and just died in his sleep one night. No pain no agony, no pneumonia, no anything bad he just went. So I am now praying that is how Dan goes. What a blessing that family had. Every time Dan says he hurts wherever it hurts me so much that my stomach tightens and I feel a little like I am dying inside. It is horrible to see and feel. Now some people think I am so great because I am still here and still trying to do everything I can do. But that don't see me in my weak times. Some times I just want to curl in a ball and block out the world or just cry until I feel better. But I know it will never happen. In the beginning I thought that I wanted to go first so I didn't care about me or my life anymore. I had to learn how to be careful again. I am just a human in a horrible position. One that I would never wish on anyone. Some days I can just barely survive the day. Then there are days like today when for just a minute after I wake up I think it has just been a bad dream and that he will be okay and then I open my eyes and start another day. Just hang in there no matter what. That is what I keep telling myself. I will make it thru this, too. For this to shall pass.
Third- Let others serve him. It helps them while giving you time out. What a blessed time it was.
No they can't do everything I can but my goodness what a relief it was to not have to do so much.
Fourth- When traveling carry everything (medicine wise) you can ever think he might possibly need. There is a LOT so take a van with lots of space. Take both the electric wheel chair and the manual one. The manual one is much easier to get in other people's houses who have stairs or even a big enough bump that the electric wheelchair can't get in. So you can visit everyone you want to.
Fifth - give yourself plenty of time to get there because it is going to take longer. Much longer than you plan. Plan to spend the night somewhere. We went 10 hours one day and it was a long day and we were all way more tired than you can imagine.
Sixth- lower you expectations.
Seventh- Get a hotel room with a disability setup. Make sure it has a roll in shower because the transfer tub is nice but I could have never gotten Dan in there.
Eighth- If you have hospice let them know a week in advance (or more) because they will set up hospice care for you wherever you go and you will still have support.
Now since I have gotten home I have learned that if you have anything on the inside of the tube of his catheter then it can clog up the works and cause a major blowout and then the pee will flow in his pants instead of down his tube as it is supposed to. After the blowout the bag will fill up quickly because it is now flowing but at that point change out the tube and bag so it won't happen again.
Last but not least, you know how everyone has a "I know someone who died of ALS" story. I got one today that gave me hope. When it first started I was so sad. I am not sure why anyone wants me to hear how their family member suffered and died. But they all do. Today's was good. The father hadn't been suffering at all and just died in his sleep one night. No pain no agony, no pneumonia, no anything bad he just went. So I am now praying that is how Dan goes. What a blessing that family had. Every time Dan says he hurts wherever it hurts me so much that my stomach tightens and I feel a little like I am dying inside. It is horrible to see and feel. Now some people think I am so great because I am still here and still trying to do everything I can do. But that don't see me in my weak times. Some times I just want to curl in a ball and block out the world or just cry until I feel better. But I know it will never happen. In the beginning I thought that I wanted to go first so I didn't care about me or my life anymore. I had to learn how to be careful again. I am just a human in a horrible position. One that I would never wish on anyone. Some days I can just barely survive the day. Then there are days like today when for just a minute after I wake up I think it has just been a bad dream and that he will be okay and then I open my eyes and start another day. Just hang in there no matter what. That is what I keep telling myself. I will make it thru this, too. For this to shall pass.
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