Just when I thought things had eased up a little it all came crashing down again. He is not doing well at all. His color is not good and he is sleeping a lot during the daytime. He is very clear on the he is ready to pass on and go "home". He is not scared of dying and has finally accepted the fact that he is going to go soon. He told me last week that he knew this was our last Christmas together. So we have really been putting some effort into enjoying every minute we can together. I asked his nurse what we needed to be watching for so I would know when to call the kids in. She gave me a list of 5 things and only one has he not done yet. That one was a rattle in his breathing. I asked if that was only when they had pneumonia and she said no that they all rattle. I hope she was not talking about the death rattle you hear when they are passing away I really need more notice than that! But the other 4 are here already. From everything I have read he is in what they classify as "the final stages". It really seems to have whipped up on us! Some of the other signs are 1- shallow breathing (his is very shallow) 2- they run a fever (his comes and goes so I consider that a plus). 3- sleeping a lot during the daytime (and at night). He sleeps a lot in the daytime and always seems so tired. 4- Is the one I can't remember right now. But the good thing I found out was that if you choose to go the natural way and not do all the machines you go peacefully in your sleep. Many family members of many ALS patients say it is peaceful and easy on them. But if they choose to do the machines/ trac/ and all these other things to extend their lives then they are the ones that get pneumonia, a P.E. (blood clot), heart attack and such like. They are the ones who have a hard time. When we found all this out Dan had filled out and signed his medical advance directive and his DNR a couple of days before. Now we are really glad he has decided to go all natural. At first when he decided it I was upset but I agreed because it is his body and his choice. I wanted that extra time with him. But I have to put him first because I love him. I thought about it and decided for myself I would much rather have him go peacefully in his sleep that chocking to death with pneumonia. He had a PE before and it was so painful he cried I can't imagine how much more so it must be to kill him. And I have heard a heart attack really hurts!! I don't want any of that for this dear sweet man that I love. Yes, this is hard but that is not part of this equation at all. I want the best for him. As long as he is alive I will pray for him. But now that he wants to go back "home" my prayers have changed. Now I pray that he will be happy (so he will want to be here still) and that he won't have any pain. That is important to me.
Here is a couple of pictures of him with our latest grandbabies.
This is him with Jaclyn. Our babies baby. She really loves him.
And this is him with 3 month old, Madison. She will just sit in his lap and lay there forever.
We had a tough week here. It has been a few weeks since we had anything bad happen so I thought we were mostly stable and wasn't as worried as I could have been. Soooo what happens? It all comes raining down on us. His feeding tube got infected and then the next night- he had blood coming out of his penis. A lot of blood! So here came the nurse again. The next night he started aspirating and gagged for 15-20 minutes. It was terrible!!! Tracy, our LPN said we were testing her to see if she always wore her uniform even to sleep in. Now every day some of his skin gives and he gets another sore. He only has 2 so far but is having problems with those two. So a whole week has gone by and we had problems every day!! Yesterday we were talking and he wants his DNR put back in place. He said "I am ready to go home" Since we were sitting in our living room I can only assume he means back to live with Heavenly Father. He tells me he is tired and wants rest. He doesn't say "to rest" he just says rest. I know this has been a long battle for him (and for us all) and I think that he is ready as he says. He has told me he has no reason to fear and I know this is true because he is a good Christian man who loves the Lord. I asked him to try to stay at least thru Christmas so that the kids can have one more Christmas with their daddy. But I don't know if he has the energy to try anymore. It is so hard for him to even get a word out and he has a lot of pain now. He hurt from 2 am until 630 when he finally gave in and let me give him some pain drops. He usually doesn't want to take them but gave in this morning so I can only assume it was pretty bad. We will be praying for God's will to be done. But I sure don't like to see him suffer and I know the kids and Jeff don't either. So we pray he won't suffer and that he can find some happiness in every day.
Yes I know this title seems selfish. But I want to wake in the morning to hear Dan singing in the bathroom because he forgot he is home and not in a hotel in some other country. I want to hear him whistling a happy tune as he is doing service for someone who stopped by because they needed something. I want to walk along holding hands with my sweet husband while he looks over at me and smiles. I want the bathroom door to open and the smell of MAN to come out. I want to shave ( I do a terrible job and he is so good at it). I want to sit in the quiet of my house with the smell of supper cooking while I wait for Danny to come home. I want the things that we put off for later to be able to do. I want the vacations we were going to take when we got older. I want old age with a husband who loves me. I want the Danny of old. But that is not to be. And I am sad about that. But I still love Dan with all my heart. I wouldn't trade every day together for anything. I want every day I can with Dan. I thank Heavenly Father every night for letting us have one more day together. I am blessed and I know that but I sure would have enjoyed old age with Dan by my side.
Dan has run fever the last two nights and I thought I was paranoid before but I sure am now. If I walk out of the room for anything I am scared to walk back in for fear that Dan is dead on the other side of that door. Now I am terrified! I hate it when he feels bad. But when he is sick it is so scary!! Every time we face something new it is just terrifying. But we face it and get him well. So we washed him and cooled him off, then gave him some aleeve. And waited and waited. Finally his fever broke and all I could feel was relief, a deep Ahhhh. We had made it past another scare. Then the next night it came back and we went thru it all over again. Today he is looking good so we are praying that we are thru with that. But I sure wonder why?? But that is part of ALS wondering what is coming next and why and how are we getting past it. What do we need to do to keep Dan alive and well. Every day a new adventure.
Many people have told us that as the bad weather comes in that ALS patients heath goes down. But so far Dan is stabilizing. I love that. I thought we had a problem but it turns out that I was putting him to bed to close to brushing his teeth. He always drinks water then and the water was causing the choking. So now that I figured it out and shifted when I brush his teeth not more choking sounds and no more gagging. So far so good. We have decorated for Christmas and He is loving out new outside lights. We got the projector lights so no climbing and not hard at all to start and stop. I love it, too! Our tree is up and lite and that makes him happy, too. I think we are going to be okay but we are not going to get out much and that really seems to help when it is cold outside.
So while we were in Louisiana we found out that drinking Lemon water (its a natural diuretic) will keep the swelling off Dan's hands and feet. In the beginning when we were first on Hospice we found out that Papaya juice will lower his phlegm. Sounds like Dan needs to drink a lot of juice. So I thought we were doing pretty good but I think I was just trying to not see the new signs. It is so hard to see them and know that he is doing worse and there is nothing I can do about it. Every night now he aspirates. He chokes and chokes and it is getting worse. I will have the nurse check him out tomorrow and see if there is anything we can do. He is talking less and less, he just doesn't have the air to do it. Once again I am watching him get worse and I have to adjust to something new and pray this is not the thing that is going to kill him. I want him to stay around until we are 90! I just want to grow old with this man of mine.
Today the weather was bad and I gave the decision to Danny whether he wanted to go to church or not. I knew that letting him go out in the weather ups the chance of him getting pneumonia which is what kills most ALS patients. I felt very strongly that when a spiritual question comes in that that decision needs to be made by the person. So he had to decide. When he woke up the weather was a little better but not great and he decided that he would rather stay home and be safe. I will admit I was so glad. I know it hurts him and makes him to sad to not go to church but I just want him around for a while. When the ramp was icy I felt like I could just say no but when it was mostly clear it was his call.
He is doing more leaning so that is not good either. It won't be long (we have been putting it off for weeks) before he has to stay in the hospital bed instead of going up the stairs on the lift due to safety. I hate when that day comes. My mom has been here for a few weeks and it has been wonderful. She is so good with Dan and they sit around and she talks and he smiles. I take a nap so it works for us all! :)
We are hanging in here and wondering what change tomorrow will bring.
We had a wonderful vacation filled with people who loved him enough to come a ways to see him. He loved being loved so much. He really basked in the attention. We saw people who we hadn't seen in forever. I think that it is a case of they didn't want to wait until it was to late. Plus, they realized that there might not be a tomorrow that they can see him in so they needed to do it today. What a great lesson for us all to not put off until tomorrow what we should be doing today. So if you have a dress you want to wear, a dish you want to try or use or anything else you are putting off. Stop it!! Do it now and enjoy your life!!
This week Dan went into the Neurologist for his check up, and found his reflexes are down from 2.8 to 1 something which of course is a concern. When they tried to take his blood they couldn't get any out of his good arm after a few pokes gave up and went to the bad arm and got it there. But that was a little concerning too. His speech is going more everyday but he is learning to smile thru it which is great! I really hate when he is sad! I wish you could have seen his face as his sisters tried to figure out what he was saying and laughing with him. He was really enjoying it. Maybe we have reached a plateau there so he won't be so frustrated. For some reason the last two weeks have seemed a touch easier. I have found bed baths are hard but if I do it while he is on the toilet it is way easier! So we are adjusting to make things easier and anything that could do that is my friend these days.
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.
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.
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!
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.
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!
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!
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.
We are on vacation. I didn't know if we could make it but with help from my brother we are in Idaho and spending peaceful time with our son and his family. It was actually a nice trip. It took us a lot longer because we stopped to spend the night and stopped every couple of hours for him to have a break. But it was nice. It has been good to be here. Dan has seemed more peaceful and happy. It has been nice being in a smaller place so I can always hear Dan when he needs me and he loves that. It has brought him such comfort knowing he is not alone and won't die alone. He even let me leave his mask on while I wasn't in the room. It was a nice change and I have been able to take longer breaks because he feels secure. I am thinking about getting a small apartment to live in until our house is finished. If it brings him peace and makes him happier it is worth it. We will see how I feel in a week. If I still feel that way I will get on it as soon as I can. Only bad news is an increase in how he is drooling and still having bladder spasms. But nothing new. Thank goodness!
It was a really hard week! I know I say that a lot but it is always true. But Thursday was a down day for us. Nothing bad happened and that is the best news I could ever give. I do about 3 hours of Nursing for my sweet husband every day. An hour in the morning and 2 at night. I can now do everything from give a shot to clean a catheter bag (after changing it out of course!), My life is not fun but it is necessary. There are so many things that I used to love to do that I no longer have time for. There are so many things I want to have time to do but no longer do. That is including returning phone calls. I tell people I will call you back with the answer but I never do. I will call you back after I get Dan settled but I never do (get Dan settled and call them back). But I don't. I didn't realize this until a couple of nights ago. I laid down to go to bed totally exhausted and it was midnight. As I was in that gap between total exhaustion and sleep I realized that I hadn't called anyone back in weeks. I just don't have the time and I honestly forget. My brain is full of all the things I need to do. Many of which I am not qualified for but have had my 5 minutes of training so I am supposed to know how to do it. These days I am so tired that I am doing everything automatically. As the day is finished I have to ask Dan what I had forgotten to do this time. Most nights there is nothing but some nights there is something. Dan can't talk anymore at least not where anyone can understand him so when he is trying to tell me we both get so frustrated. It is awful! Dan's muscles are worse. He can't help at all when we try to move him. His back won't hold him upright and his neck won't hold his head up. So to brush his teeth I have to either tilt him back in his recliner or hold his head up with one hand while brushing his teeth with the other. It makes things really hard. The other night he had something stuck so I tried picking his teeth which I hate doing but have to do regular. But since it didn't work I was trying to floss them but he wasn't having any of it so he bite me. Can you believe that?? Then he said it was my fault that he bite me. He said I put his head back to far. But since I barely had it back and his mouth was barely open not sure how it was my fault so I told him no it was his fault since he is an adult! He looked shocked that I had defended myself at all. I realized that I let him get away with blaming me a lot! I knew then that I should have been defending myself a along. It is one thing to baby him because he is sick but another to take the blame for everything that was happening. Everything that happens had become my fault for some reason or another. He was always laying blame. Because he is dying I have let it slide. My brother says we are entertaining in our arguments. We had never had one before he got sick so we are really not any good at it. He had never even raised his voice at me. Now he says "you made this happen" Me " what?" Him "I hope I die soon because I know you want me out of your way" Me "WHAT??" Then all the sudden I am apologizing and saying how much I love him and how sorry I am about whatever! But I have learned the trick now. And it took a major one for my eyes to be opened. I was exhausted when it started and when he got to the part where he knew I wanted him dead. I said no that at that moment I wished I was. He didn't even care. He just went "um" and it stopped there. Well I have caught on now. These little arguments are going to go a little differently now. It also helps that even though he is yelling I can't understand more than 2 words out of 20! So I may win a couple now. Who knows??
This week is crazy busy! On Monday we had a 9 am appointment an hour away. So we were up at 7 and Dan was exhausted all day. But we saw the VA ALS doctor. WOW that was a lot of initials. VA is the Veterans Affairs out at the Veterans Hospital and of course you know what ALS is or at least you have a pretty good idea by now! He also see patients at KU (Kansas University) So he just signed on there website as a doctor and read what Dr Jeffrey Statland had written. I just want to add here that Dr Statland is one of the best in America. He specializes in ALS and does a great job. He is so calm and sweet and will answer any question and you can ask him anything. You can even send him an email and he will get right back to you. He is wonderful! So back to the VA doctor story. I can't even say his name! So when he introduces himself I was trying to hard to hear how he says it that I missed whatever he said until we got to his office. Anyway he just looked up what Dr Statland had said and then just did a couple of other test and called it done. Then he asked was there anything he could get us that we didn't already have. I asked "like what". So he listed some things and we already had everything he could have given us. and we had on order the last thing the VA can give us. That was kind of nice. I wonder if we have to keep going out there now that we have everything?
Late yesterday *Monday in case it takes me a long time to finish this one! we got a phone call telling us that Dan's communication device is in. They said we could come at 10am today and pick it up so of course we went and back out to the VA we headed. So we had to get up early again and head out. So tonight Dan was trying to work with it and failing because he was so tired he couldn't hold his head up. He went to bed pretty frustrated! I would say that he will have better luck tomorrow but we are heading to the Urologist in the morning. He is hoping to get his catheter out but I am not counting on it. All our ALS medical people are not even surprised that his bladder could have stopped working right. I guess we will know more tomorrow.
Believe it not I am in the Living Room without him. That is a miracle! He really doesn't like me to be away from him while he is sleeping. He is afraid that he will choke and no one will be there to help him.
As we start another week I realized a few things. One he was diagnosed (second opinion) a year ago yesterday. And another is a year ago today Dan was dancing at our baby daughter's wedding. He was worried about it but was able to do it. He also stood for an hour while the pictures were being taken. He was so healthy except for a weak arm and weak leg. But it was just weak nothing big.
The daddy/daughter shot. Even having just gotten bad news he was still thrilled to be there with her.
He was so happy to dance with our baby girl. And she was thrilled to be with him. We have 2 daughters who aren't married yet who are worried that he won't be at their weddings. I tell them if they want him there they need to get out there and date! :)
Some days we worry about a lot of things other days we just try to be happy. But this week we did get a bit of good news. He doesn't have to take the Lovenox shots anymore. I am so excited since that was twice a day and it burns. He was super excited that that was over! For me since I don't like to hurt him I am super excited too! We went to see the pulmonary doctor this week and found that his breathing hasn't changed much from 49% to 46%. So he said he doesn't want to see us for 4 months unless we have new problems. Like if we need a trac. Something he has not decided if he wants to get when the time comes. He was so sure what he wanted until now and it gets closer so now he is not so sure what he wants. He wants me to decide but I told him that it is his body and he has to decide. So he is working on figuring out what he wants. I believe when it gets even closer he will know and if not we will go with what he decided a while back when he could still talk.
It gets harder and harder to understand him. Some days I can't understand about half and other days not even that. We found out this week that the reason we don't have his communication device is that it wasn't marked urgent. Turns out ALS patients are supposed to be marked "urgent" so the guy in charge is planning to do that on Monday so we can get it soon. I hope because these days I can't understand so much and he has so many needs. I am not sure why but I laugh when he tells me long drawn out sentences. It just hits my funny bone just right and then he gets really mad. I feel bad and I am not sure why but I do it any time it is long. On shorter sentences I do fine as long as I can figure out what we are talking about I can figure the sentence out. Some times we both get frustrated and he will just say never mind. Church was great today. We have so many people who love us and care how he is and actually stop to listen to the answer when they ask how I am. Some times I feel so broken that I don't know which way is up and other times I am able to learn how to take care of the new problem he has. Yes this week was hard but I don't see any easy ones in my future. So I will press forward.
I have found out so many bad things about myself in the midst of all this. I have very little patience for whiners. I can't understand people who do not speak clearly (I think this is because I don't hear well or at least I hope so), I can't drive a wheel chair. Today after church I caught Dan's hands between the door and his wheel chair. No matter what I do it will never be enough. No one and I repeat no one Loves Dan as much as I do!
This week has been awful for many of the reasons some I listed above but mostly because our CNA's are gone. One went back to college and the other messed up her knee so we have replacements for one and nothing for the other. The 2 replacements CNA's have been terrible! I can't believe the things they have done to my poor dear husband, such as when giving him his bath they didn't wash his privates (as we call them). He has a catheter in and has to stay clean there. They also almost dropped him twice and lifted under his arms even after he told them how much it hurt. The next time they washed his face after the washed his behind. He explained it was ok since they used my wash cloth to wash his behind. Then they used a dirty brown towel to dry him. Yes he has a clean one yes I pointed it out to them. I told them blue. Dan said maybe they are color blind! They almost dropped him twice. Then the last two from Friday- I wouldn't let him bath him since they hurt him and did all kinds of weird things. So all they had to do was bring him downstairs. Just pick him up and pivot, twice. Not that hard but I had to catch him! Sheesh! They don't take good enough care of my man. Not sure what I am going to do about it! I sure hope Ruby is back this week or I am back to doing everything myself!
As I am changing so is my hubby. He is short tempered now. My sweet man who never raised a voice yells at me now. He has phantom pains and phantom feelings. Sometimes he feels a bug on his face but there is nothing there. He will say that his foot hurts and then that it doesn't he doesn't know what I am talking about. He complains all the time of his tailbone hurting or his back hurting. They take turns hurting but I think they really do since his back hurt before all this and with all his sitting I am sure his tailbone hurts now. He thinks of ways that he can die. Such as the other night as we are getting ready for bed, which is an exhausting task. He comments that if I leave the room while he is sleeping and he is wearing his bi-pap that he could vomit and choke to death. He was really concerned about this. So I laid there waiting for a problem since I assumed he must be feeling nauseas or something. Since he never throws up. But nope it was just a passing thought for him. Something for him to worry about. Then there is the day a week or so ago where I put him on the toilet and didn't come by in 15 minutes so he started to panic (he had told me to come back in an hour and I came back in 20 not an hour!) and he came unglued. When I got in there he was sweating and screaming, like a 2 year old throwing a really big temper tantrum. He wanted off that toilet now and didn't want to wait not even to wipe. So he has to wait a minute while we wiped. But he was mad. BTW: Dan used to never get mad. So now when he is in the bathroom I have to sit in our bedroom and wait for him to poo. Sheesh! I used to love to watch TV but I don't have time to now and when I would usually watch I am now sitting on my bed waiting for him to poo or for fear of him waking up and not finding me there and getting scared. When this all began he had in his mind what he wanted to happen. HE wanted comfort care only. Now the fear has gotten the better of him and changed his mind in many ways. We filled out a DNR a month or so ago and now he is not sure he wants it so we took it out of his hospice folder and put it aside until he decides. He can't decide if he wants machines hooked to him so we are waiting on an advance directive. One thing he has decided is I am a terrible wheel chair driver and I am pretty sure he is sticking with that one. Here is a few pictures from the last couple of months
This is Dan with our great nephew who came to visit us.
First we found out he didn't have a UTI they think the muscle in his bladder has stopped working. So they put a catheter in. Which means another tube for me to keep clean. He laughingly says a tube to put water in and now one to let the water out. But of course he has had problems with the tube. Two days in his urine turned pink. This meant he had blood in his urine. So we called our Hospice nurse in and she reassured us that it was ok. It was a light pink, which is better than red. She said that it would clear up soon. The next day it was still pink. And then today it is still pink!! So of course I am still worried about that.
Good news for our week. Dan got his trilogy. It is a machine that will move up with us as his breathing gets worse. Turns out it is really easy to use. While they were setting the numbers and adjusting it to Dan it seemed to be taking his breath away. Kind of scared me but as he went to sleep tonight with the same numbers he slept so good. So don't let it scare you. I guess in the beginning it feels different to them so it sounds different. But in the end it is good.
I want to put in a if you get a chance to get Hospice, then do it!!! It has been a Godsend. They handle things you just don't have time for and plus will help you with getting your medicine, calling doctors, turning in and ordering lab test, bringing over medical supplies. Plus you get a CNA for however many hours you NEED her. Not want but need. So right now I just have one for 3 days a week for about an hour. She comes over and bathes and shaves Dan. I never minded the shaving but the bathing was hard work. Even with the transfer bench. Which BTW is the best invention! I love our transfer bench! It saves my back a ton. She does a great job. Plus in the end neither I nor Dan will have to be alone. They volunteer hours to sit with you until your family can get there and then they will stay with you until your loved one is taken away. It is nice to know I won't have to be alone. But I probably won't need this part since most of my kids live close but it is nice to know.
Just when I thought the progression had slowed down he has developed more problems. Not any we have dealt with before so we are once again starting from scratch and learning how to take care of something new. When we got in from church today he needed to urinate but couldn't he pushed and pushed. It really hurt him and no matter how he pushed he only got a few drops out. So he gave up and I went to take a nap. When I came back he had peed all over himself. He said he tried to wait but it just came out. We changed his clothes and a short time later he said he had to pee again. So I went over with the urinal and the same problem occurred. A short time later he had urinated on himself again. We are not sure what is going on but he is hurting again so we will be doing a Doctor's visit in the morning and start the testing to figure out what is going on this time.
You know this is one strange illness. There are so many problems that come from it and many of them can kill you. You never know what it will be. There is a list as long as your arm that can cause problems/death. As I was laying in my bed next to him earlier this week I woke up terrified. Not a little scared but that fear induced trembling and just wouldn't stop. I was so scared and I laid there and listened trying to figure out what had caused it. There was nothing wrong in the house so I prayed and tried to relax. As I laid there I realized that one day I will feel that and he will be gone. I realized then that I really don't want to wake up next to a dead husband and thought to myself how selfish I am. But I just can't stand the ideal of him dying there next to me and me not able to do anything about it. How awful that will be but it will happen maybe not today or tomorrow. Probably not even next week or next month but it is in our future. So what do I do? How will I get thru this? Not even this but how will I get thru the ideal of him dying. I will do just like I have been doing for months. I will put one foot in front of the other. I will put on my I am okay face and I will stand strong for as long as Dan needs me too. And if he dies in our bed I will know that he was not alone which in my mind is way worse than anything I can imagine. So whatever this problem is and whatever I have to do to help him thru it I will do it because that is what you do when you love someone. Yes, I know this post has been more of a downer than I usually post but today has been hard and it was time to post and I am trying to post every Sunday, Scheduling helps I have found. So I am sticking to it. I will probably post something more uplifting or helpful later in the week.
There are so many things he knows how to do that I have no idea how to do. Now I am having to figure it out. He is a natural smart but I am not. So when our server went down I had no thought what to do next. It has been down for a couple of weeks now and we have found that 4 months of pictures are now missing. I am panicking but know that there is nothing I can do. Because I can't do like he could and just go downstairs type some stuff in and fix it. So here I sit going thru sites and looking for cloud backups. I am not even sure what a cloud backup is but I know we need one because I would hate to lose 13 years worth of pictures that we have stored. One of our daughters came over last night and Dan talked her thru a temp fix. It took them hours to do what he could have done in minutes. But we all have more trouble understanding him now and that made it even harder. So she sat patiently waiting for each letter of each word to come out. Bless her heart she was so patient. Occasionally I would hear the frustration in his voice. I know he just wants to put his hands out there and just get it done. It must be so hard for him! Some days I think it would be so much easier if it was me. He was the one who made the living, he is the one who knows how to do things, he could have made the things I needed and honestly if I died I think he could just move on. He is strong like that. Me on the other hand fear life without him. He is all I know! So I am learning. Today I am learning how to fix my toilet. I can't wait for him to come in from out of town like I could have a year ago. Today I will do it myself. I will learn!
It has been a really good couple of weeks. Our morning CNA is in place and really has been a life (and back) saver. Her name is Melissa and she has really taken on the hard stuff. I was sad to learn that she will be leaving us in August to go back to college. So we will have to retrain in a month or so. Our afternoon CNA, Ruby will still be in place and we really like her too. She doesn't spend as much time or energy here. Not because she doesn't want to, we just really don't have anything else for her to do. They tell us as we need more help it will be great to already have her in place and she will already know us. So that will help. As it is Melissa does his baths, and rubs her hands and feet. Both of which is going great. He has some movement in his hands and they aren't stiff anymore. I can even get his brace on without him crying out in pain. Which is awesome!! He can flex at his ankles, too. That is also awesome. I take anything as progress. Even if it is only for a day, hour, or even minute it gives us hope. And hope can make anything bearable. He is still taking Protandim which he is sure is helping but since he is choking way more and can hardly speak most days I really don't think that is it at all. I think that God is blessing us with tender mercies so that we continue to have hope and it gives us strength. Some days hope feels like all I have.
I know I have to stay strong for him. And most days I am. But when I am not it is the small things that do me in. Like earlier this week I saw a old couple dressed alike, holding hands and out for a walk. I cried and cried! Not because I thought Dan and I would ever dress alike (I think that is weird! but that is just me) but just the very thought that I will never grow old with this man who makes my heart happy just to be in the room with him. The thought that I am going to be by myself for years before we get to be together again. These things are hard to think about and I am crying just writing them. I want to be with him but that is just not to be. But I still pray that our days together can be happy days and I look for ways to make us both enjoy our time together. So we cry and try to make it thru the hard days. The easy days we laugh and are happy to just be together. Those days are what make the hard days livable.
We finally got our handicap van and then we all piled in and went out to eat with Dan and his easy in and out. It was wonderful to finally be able to use his electric wheel chair. He can ride down our new ramp that some guys from church built and into our new van and then off we go. No pain to Dan and that is wonderful!
I was looking back this week and realized that a lot of things I thought were impossible for me to get thru are easy now! Even simple things like brushing his teeth. When he would spit the sound would remind me of the sound at the end of someone vomiting and make me so nauseous. Oh my goodness! I would try every time not to vomit, too! LOL! Now I have to hold his head up to brush his teeth but the sounds don't bother me at all. My arm gets tired after holding his head up but it doesn't bother me. So it is easier. Next is giving him his shots. I was so worried I was going to hurt him but have found that even though it burns him it is ok, because it wasn't anything I did. Lovenox burns. It does when anyone does it. A couple of tricks for it not to as much is let the alcohol dry before you start the shot. And another is don't wipe afterwards once again it can make it burn more. If Dan laughs he can pop that needle right out of his skin and we have to start again. So go fast!! Next, is working the feeding tube. It scared me so much!!! Even after the nurse said to not fear it. But I couldn't help it. It was scary! Now I work that tube like I always have. I have also found that I can get the extra air out and his doesn't let near so much wind so he doesn't toot every time we move him. They smelled so bad!! It was awful. Now he very seldom lets air. A nice thing in my eyes and to my nose! :) Then we have bodily fluids. Do I like them - no way!!! But now I can work with them. I wipe his behind without gagging, he pees on me regular (without meaning to), I have to wipe his nose and get snot on me pretty regular. It has become a standing joke that every day I get some kind of bodily fluid on me every day, it's true but I can laugh about it now. I no longer gag every time, or feel like I am sick inside or feel like I just can't do I one more time! As he is sick more I become better and better at taking care of Dan.
We got a ramp this weekend. One of the men from church who helped Dan last week volunteered to make him a ramp on Saturday. He showed up yesterday morning with some people from another ward at church and they went to work. They worked until early afternoon when the second shift kicked in and went to work. They stopped at 8 with only a half of the ramp not painted but everything else was done. We woke up this morning and it was finished. They had showed up some time after 1030 last night and finished painting it. Super sweet!!
Last but not least our morning CNA is really getting in there. She is doing Dan's showers, shaving, and exercising his hands (which are a little more flexible now). Our afternoon one shaves him and rubs his feet and keeps the circulation up and moving. It is easier now? sure it is. But that is not saying it isn't super hard still. The more help I get it is because he has gotten worse to earn. I would rather have Dan well and no help at all. That would be perfect. Next though is having help. That is wonderful and gives me more time to be his wife. Awesome!
I almost forgot to mention. My brother who has been living with us has been gone for a week and I made it thru. I didn't think I could but with the help of my morning CNA, some sweet brethren from church we made it. I am glad to know I can but sure hope when he gets back tomorrow that he doesn't go again for a little while. But now we know that he can heave a morning job and all will be well.
Things are getting better around here. Dan got the paperwork needed to get our handicap van. We are just waiting for a guy to put his john hancock on it and we are done and can pick it up!! It is already paid for and everything! YAY! Then some guys from church was over and helping us get Dan inside on our way home from church. And he said "I am an engineer, can I build you a ramp" Of course I said yes! So he came over, measured everything, his brother came and they designed it. They have already gathered things they needed to make it (people donated) and they are coming Saturday morning to put it up! I am so excited! Dan can come and go by himself! That will make things so much easier! Then our contractor came today and is ready to put in his bid to get the house redone and ready to put Dan downstairs where it is safe. So that is moving forward too. I have a lot of work to do to get the Family room ready to be redone but it is in motion now and that is wonderful! And we now have 2 CNA's and a nurse coming and seeing us! One CNA, Melissa comes every morning to help me get him up and going and does his PT. The other, Ruby comes 3 days a week and does his baths, shaving, nails and rubs his feet. I feel so blessed! Things are really starting to come together!
We are having to put his meds in the tube now, We were hoping for a few more weeks without it but that was not to be. Even with all the trouble the tube has been I am really glad we have it now that he is choking more. Putting the meds in the tube sure makes things easier for me, too. I am also having to hold his head up to brush his teeth. He just can't hold it all the way up by himself. Bless his heart he is really folding in on himself more and more. But we are getting it done. Some days are hard and some are harder.
Today I heard a couple talking and she said "this is my love (introducing her husband). We have been together for 60 years" and I thought wow! Dan and I had planned to make a lot of years. We thought it was doable since we had married so young (I was 18 and he was 21). But now when I hear things like this sweet couple I cry because I know that I won't have that. I will probably have a lot of years alone and that makes me so sad. I have only ever been part of a couple. We married the same week I graduated high school. We had plans and they were good plans and now that is all going away because of some stupid illness that no one can even figure out where it comes from or how to cure it. I have never hated in my life but I really hate ALS.
I have never been so scared as I was this afternoon when my husband said "wow" and I looked over and his shirt was covered in blood! The gauze surrounding his peg tube was full of blood and was congealed on top in puddles. WOW! It was so scary! Since we had just started Hospice today I wasn't sure who to call. So I called 911 and soon the firemen were at the house and had things in hand. They were so calm that it helped a ton! They had his information down, had packed the wound, and were ready to help the paramedics when they got there. They also carried him down the front stairs and out to the ambulance. It was super fast and seemed easy to them. They carried him to Shawnee Mission hospital and got him checked out. They did some labs (everything was good), a CT scan (they told me that he wasn't bleeding internally), then they went to work on my hubby. They hurt him so bad. It was crazy! They pulled the tube out to the max and put meds in that were supposed to help him clot, then compressed it. He bleed thru the gauze. Afterwards the doctor gave him a shot to numb it and went to work scrubbing it and cleaning it. He put more medicine on it (still trying to help it clot), Then pulled it tight, then he loosened it and put some more packing on it and pulled it tight again. Then they gave him a dose of morphine and sent him home. They helped us put him in the car and off we went. When we got home our home teacher was here waiting to help us get him in. He picked up one side of the wheel chair and my son picked up the other and up the stairs they came. It was hard work but they got it done. We have him upstairs in bed now but I am still scared. So off to bed I go!
It has been a really hard week as I have found most weeks are when your spouse is suffering from ALS. I have to add in here that I would assume if your spouse was dying from anything it would be hard but ALS is all we know here. So we had the hard appointment on Tuesday. Then Wednesday was hard until the evening when my newest granddaughter was born. That made it a wonderful day. Then Thursday came and we went off to see the dermatologist. Dan's skin is drying out and falling off. He says it is really itchy. Since he can't move his hands he can't scratch it, it is kinda driving him crazy! So we saw the doctor. It took about 5 minutes. It took us longer to get into the building from the parking lot than it did for the doctor to see us. We were in and out before our appointment was supposed to start. As we head home we hear that our new grandchild and our daughter who had her were both sick. That really stressed us out. But Dan couldn't even go see her. Then add in that she got sent upstairs to NICU and there was no way he could then because you have to be able to wash your hands good and for 3 solid minutes up to your elbows. His hands don't uncurl and stretching his arms out cause so pretty bad pain. Washing his hands while he is in the shower is about all he can do and I wash them then and it is HARD! On my way home from the hospital I was rear ended by another car (twice before he finally came to a stop). All I could think was "really? I needed that?" then my insurance company proceeded to harass me. I was on the phone with them for over an hour and it wasn't even my fault!! I can't even imagine if it had been! We get up Friday morning and take Dan in to have his peg tube inserted. In case you don't know it is the feeding tube the put straight into their stomach for when they can't swallow anymore. Ours was just preparatory at this point but I think we are heading toward it pretty fast! Now here are the things I learned on this one. 1- At the VA they are not going to keep them overnight not matter what the paperwork and their doctor says. So don't get all excited about being able to sleep thru the night because it is not coming! You are going to worry and get less sleep! 2- They will give you all kinds of instructions for when they come home but it will be contradictory and quick. My 24 hour training took about 30 minutes! 3- Do the best you can because you are all he has to do it. 4- Pay close attention because when you get him home you will have 500 questions that can't be answered because they closed 10 minutes after then kicked you out the door. and last but not least the doctor is going to bully you and nothing you can do or say is going to help. Now for the good things I learned. Have a nurse coming to your house already from a reliable home health care place and don't wait like I did, call her right away and ask her to come over and get you some training! Now Ashley our nurse came over*on a Sunday and spent a couple of hours with me on her own time to help me. Your nurse will be your best friend if you have a good one. Her best advice of the day was "Don't be afraid of the tube" the doctors was "if the tube falls out just bring him back and we will put it back." and oh yeah my favorite advice from him. "if it starts pouring blood be sure and bring him back here we have his records." So I explained we live an hour away. He said that is okay I should still bring him there. Ashley on the other hand said "call an ambulance or go to the nearest ER." He is on Coumadin by the way so he can bleed to death in a very short time! Normally my advice to you would be stand up for your spouse and yourself but in this case it is go anywhere but the VA!!!!
Our good news for the weekend is our daughter and granddaughter got to go home and our paperwork for our van is in the mail so we should be able to get it any day now! YAY!
So this is just another weekend with ALS.
We have had a really bad week here. The doctor told Dan this week that if he had goodbyes to say or business left unfinished he needed to take care of that because he is not guaranteed any tomorrows. When we asked how Dan was doing he said that Dan was on the fast track downhill. It was really hard to hear so many truths but we needed to know so that we could prepare for what was to come. Dan is scheduled for surgery tomorrow morning to get his feeding tube installed. I am actually looking forward to that part because giving him his medicine will be easier without the worry of it choking him. But I am scared. The doctor said that there can be a lot of complications since his breathing is becoming so hard. His numbers had dropped a lot in the past few weeks! He was at 66% and now he is down to 41%. That is a huge drop! When the doctor started doing test he found that Dan's left thigh is the only muscle on his limbs that still works.
What we learned that was useful this week- You can buy a wheel chair or scooter on Craigslist super cheap. As little as $300 for a good one! Doctor said to check ebay because they have them cheap too! Who knew to check there???
My good news for the week is my baby daughter gave birth to her first daughter! I am so excited but Dan seems not to be as happy as me. Part of that I think is that he can't hold the baby without help since his arms don't work anymore. He always loved to hold and love on kids. His favorite was always that sweet little cry that a baby has. He loves to hear that. When you have just given birth it is the sound that a baby makes that says he is alive and well and he wants everyone to know it.
Then to top off my week I was rear ended! Like I needed that in my life! The guy hit me so hard that he bounced off me and hit me again! I am so sore! But that seems to be my life, having sore muscles! But once again I am just glad to be with my husband in the little time we have left. Love deeply and be strong. Have faith in God for He will get me thru this hard time!
So on Friday we went over to the VA for an appointment. We actually got done in 3 hours which is a record! First we went and saw the pharmacologist who ordered his shots and gave us a schedule of how to clear Dan out so that he can have his peg tube (feeding tube) put in on Friday. Then we went and saw the Speech therapist and the person from the company that we are ordering his communication device thru. (Tobii Dynavox) Which is great since I can only understand him every now and then. Usually when he is yelling at me. Which is sad since he never yelled at me before he got sick. Back in January he changed to a yeller. Anyway while we were at the VA we went by and picked up his cervical collar. He said it really helps when he is tired and is having trouble holding his head up, which also helps his back. Then we went by to see his nurse Nikki. She was able to help us check and see why we didn't have a CNA yet and gave me some advice on how to help Dan better. She had had a really bad week because 6 more people had been diagnosed with ALS in the past 10 days. That is a LOT! I told her I really want to start a support group so that the ones who had been there can help the ones who are just starting out. She recommended someone whose husband has already died to work with because she would be really good, too. After we saw Nikki we went down to see Brent who works with the PVA. He didn't even recognize Dan. He told us that since Dan has gotten so much worse that Dan could get more money more than twice what we are getting now. That will help a whole lot! Since then we can hire a CNA and get some help in here. He told us that we had to have a quick check up with the benefits people so they could see how much worse he had gotten. After we left Brent we went and picked up the shots, Rick had ordered and we headed home. When we got home we were all exhausted so we took a nap. Saturday we were super busy again and then today the kids came in to see their dad. Well all but 2. One is on vacation and the other lives in another state. It was great to have them all here so that was my favorite part of the weekend! Our son from another state skyped in and the daughter on vacation called and sent a video to her dad. It was a sweet time for him. I love my family so much but some days it is hard to cope with having a husband who is sick and he is tired and having such a hard time with not being able to take care of himself!
As I sat last night and cried I thought I just can't do this anymore. I knew it was going to be hard. I had not lied to myself that this would be easy. I knew that there were going to be tears, my dear sweet husband was dying. But I never knew that I could be so tired. I am exhausted! My day goes something like this- get him up, get the urinal, get him dressed, get his breakfast, get his medicine, sit with him (he gets offended if I don't because he thinks I don't want to be with him anymore), get the urinal, get tired of the TV being so loud, so I go to my room to take a nap, only to wake to his needs having multiplied because I wasn't there for an hour. Get the urinal, (btw: I am dumping it in the upstairs bathroom since our downstairs one isn't finished yet), Feed him again, rest for an hour then take him upstairs, put him on the toilet, wait an hour, get him off, wipe his bum (praying that he can poo today or he will start to hurt which I don't want), 2 or 3 days a week I give him a shower (using a transfer bench). Somewhere in here I try to get him shaved, trim his hair (around his ears, in his ears, nose), clip his nails(fingers and toes). I think you get the idea! Never do I sit alone and just be. The other night all I could think was I just want to be his wife again. I don't feel like his wife anymore because I am doing all these things for him that is more caretaker. I miss being his wife! Then last night we got into the whole, he doesn't want CPR if anything happens. We have discussed it before but now he is laying the blame on "I just want to get out of your way" Where did that come from? Yes, I am tired but I don't want him gone, I love that husband of mine! Yes, I am tired and yes, this is hard but I agreed to in sickness and in health. This is hard for him, too. Sometimes he gets tired too. I sure will be glad when the CNA starts so I can be his wife and just love him!
Last week was a tough one. Dan's right leg doesn't work now and for 2 days his left didn't either. We were worried that his days of walking were over. Not that he walks anyway but he shuffles his feet. Now he drags his right. This whole time he has been able to stand for a minute or two so I could do the simple things like pull his pants up, wipe his bottom, transfer from toilet to transfer bench. But for a couple of days that just didn't happen. It was super hard and I am not used to him not participating at all. It was Wednesday and Thursday of last week. It made for a really hard week. I was supposed to give him a shower on Wednesday morning and As I tried to get him up his legs buckled and down he headed. We were barely able to keep him off the floor. Which was super scary since he is on warfarin and was headed toward a book shelf. He ended up on my brother's lap which was pretty funny after the fact and after the fear was gone! But he lived and we celebrate that fact every day. But yesterday was an awesome day. He was able to drag his right and with his walker took a couple of steps! It was really exciting! We were able to get him to church! He and I both love being at church! The people in our ward are always so glad to see him and are so kind to us!
We have been married 35 years as of yesterday. I am not going to say this last year has been easy or that it was a breeze and we are the happiest couple ever because it wasn't. It has been a hard year. Yes we still love each other but having one partner totally relying on the other is hard on them both. Dan gets frustrated that his body doesn't work anymore and I get tired from doing so many things. My life is out of control, my house is a mess, I never have enough time to get things done that need to be done, I am exhausted most of the time. Up until now we have been so blessed and have what many call a perfect marriage. I think that makes this even harder! We have breezed thru most years. It was hard when one of our parents died and the year my brother died. It was hard when we had to move but we moved a lot so it got easier. It hasn't been perfect but this, this is real and it is hard. So many people tell me I am so wonderful because I am sticking with him. What on earth are they talking about I always think. This isn't the time to walk away. This is what your marriage vows talk about "for better or worse, for sicker or poorer." This is sicker! This is it. As I watch him getting sicker every day, getting weaker everyday, needing me more every day how could I walk away, he needs me and we love each other. Many times I say "we had a bad day" because to me this is happening to both of us. This disease doesn't just affect just Dan it hits him, me, our children and grandchildren. Even our little grandkids pray for Dan all the time. One of the littlest prays "bless pawpaw, bless papaw" They all see that he is sick and getting weaker every day. This is not a disease that you can hide or if you take the right medication you can live forever and nothing changes. I wish he had one of those, or cancer where they could take it out and with chemo he could possibly get better. But no, it's not like that. There is no medication, there is no exercise, there is nothing that can change this. It takes over his life, over my life it is out there eating away the motor neurons inside my husband's body. The doctor says "you know this is going fast right?" Well, I am not stupid so yes I do know it. I can see! Not that I want to but I can. So here I am starting my 36th year as his wife with love in my heart and praying we will make it to our 36th anniversary.
Things I have learned today. It really doesn't matter how sick you get because you still have to take care of them. There is no break, no time out, no off, no weekends, no holidays. I worked as hard on Mother's day as I do every other day of the week. It is the same as it was when my kids were little. Life goes on everyday no matter what. One day of the week is no different than any other. I miss having Sundays as a day of rest.
What I learned today about ALS. Things change fast. So take the CNA when offered. You will need them! You can't do it all yourself no matter what you think. For the last year we have been trying to handle it our selves. I was raised to believe that you took care of yourself. It was no one else's responsibility to help you. You can't do it by yourself. This is a BIG illness and it takes a lot of energy, and there is a lot of doctor's appointments, and a lot of needs to be met. Most insurances cover a CNA and she/he knows how to do all those things you don't. If nothing else let them teach you so that you don't hurt your back. I am pretty sure mine is going quick because I really don't know what I am doing. I am learning as I go and many times someone will say "why are you doing it that way, try this way" and it will be so much easier!! Ask questions!! And let people help you! I know it will be hard but I think I would be dead if I hadn't had my brother here. He and my son in-law have done a ton to help. When Dan got to where he couldn't do the stairs they literally walked his feet on them while the other one held him upright.
What I learned otherwise. Plan their funeral. I am sure you have heard it more than once and I am sure you thought as I did "Stop saying that he is not dying yet" or "We don't need that yet" But it really did give me one thing I didn't have to worry about. And right now, one thing is a LOT!
We are living day by day. It is not easy and I am just trying to stay ahead of the curve ball most days. Today is a bad day it started that way and hardly ever changes once it gets started that way. I just hold on for tomorrow and hope it will be a better one. He took a few real steps with the help of a walker yesterday. That was really big so I will take a bad day today for a few more good days in return.
Yesterday was a hard morning for Dan. Some days are like that. I have found that we have no clue whether or not tomorrow is going to be a hard day. He just wakes up like that. I think that Dan is just trying to keep me on my toes. But last night he was able to get out of the bathroom without help and used big steps. Well, big for him anyway. He hasn't done that in a while. Things like that are so hard for me because they give me hope that we are going to get thru this and that he is going to live for a long time. Then he will have another major setback, and it is usually the next day or the day after. So now I live in fear of what it is going to be. All I want is my dear, sweet do anything for anyone husband back. Not this angry, sometimes mean fellow who has taken his place. And I get it. I don't want anyone to think I don't but it is so hard to set apart the man who is sick for the first time in his life and having a really hard time dealing with what is happening to his body to my awesome husband who never would have yelled at me. I have to consciously think "this is not my husband it is his illness" but when I don't think it fast enough then I get my feelings hurt and that starts a really hard cycle to get out of. Usually takes me a day or two and I always want to snap back at him "I am doing the best I can" or "I do everything for you why isn't that enough". But why say anything since it won't change anything and it will just upset him. And he cries so easily. Bless his heart it is hard for him to not cry. Yesterday at church there was a lot of our old friends there and he cried a lot. Seeing them as they came over to shake his hand or give him a hug made his day. He was so happy but the tears came. He also laughs easily and once he gets started he has trouble stopping. He and our youngest get going and set each other off. The worst part is his little boy attitude like "letting gas" really tickles him or the other day he pooped in his pants and that really tickled him. All the while he was saying sorry he laughed. Makes it hard to believe him.
ALS lesson of the week. A Hoyer lift is great but wow is it hard to use. Order it early so you can have time to practice. I practiced on my son in-law and even with him being able to move it still took me 6 tries to get him to where he would move like he is supposed to. It works much better if it is not on carpet. We are going to use one of the plastic things for the floor that Dan used his computer chair on. We are going to get the biggest one we can find. We were told we could use plywood but then I would have to wear shoes all the time. And I hate shoes but I hate splinters even more!
Lesson learned this week about death. I found out that if your spouse has served in the military you can have them cremated for free and they will then put them in a vault at Leavenworth for free. And did you know that they charge you per pound to cremate? A friend of mine just had to go thru that and at the last minute found out the military would take care of it. Thank goodness since they were going to charge her over a thousand to cremate him since he was so heavy. He had swollen up the last couple of weeks. BTW: He didn't have ALS. Not sure if they swell or not and I am not looking forward to finding out.
I started my day so grouchy! I don't really like mornings at all but Dan had an appointment at 830 at the VA so I had to get up at 645 and after not sleeping well last night I was grouchy! Then He had trouble sitting up so every time I let go of him he would start to fall over so I would have to stop and catch him to keep him from getting hurt (he was sitting on the bed so he wouldn't have I just panic easy these days). Sheesh it was so aggravating! But some days are like this. Now we have to wonder for the next couple of days it he going to have trouble sitting up tomorrow? Is he going to have trouble from now on or in a few days will he be able to sit up again. That is what ALS does it leaves you wondering every day if this is the end of something big. He shakes when he walks more than a couple of feet (with his walker of course). And that is getting worse every day. Last week he could walk across a room now trying to get to the bathroom is an issue so he uses the urinal every time except when he is having a bowel movement. That has happened in the last month. Back in March his chest starting hurting again, it had back in December while we were in Louisiana visiting family. That time he had bronchitis. We were afraid it was pneumonia and that is a really bad thing. I asked him to go to the doctor and as it got worse to the ER. I think he is sick of doctors because I got the "no it will be ok" line. Finally he gave in since the pain was so bad he couldn't stand it anymore. So off we went and it turned out to be a blood clot in his lung. So that added even more meds to his criteria. He was in the hospital for 3 days. It was his first hospital stay. They assured me there would be more. When I ask about how he is doing sometimes I am told "he is not dying yet." Well, sheesh I knew that. But some days I just need reassurance. So a couple of months ago I went online to see if he was close to anyone else's schedule of if it was as fast as it seems. There was nothing. This disease hits everyone differently. There is no schedule or even estimates! We have no idea what will hit or when. We don't know if we will get something new any days or ever days. I wish I was bigger/stronger/smarter or something because I often think a different person could help him better. Who knows how or why but here we are and I will do the best I can as long as I can.
One of the first lessons we learned was when something changes in your body it is a good idea to go to the doctor. He didn't go in in the beginning because 1- he just doesn't like to go to the doctor and 2- we figured it was something simple. He had never been sick! Not ever and I just want to add in here that he is not good at it! :) We have been married 35 years next month and in that time he had a couple of headaches that lasted 15 minutes (literally) and the Eifel crud (which is like the flu but your body is getting used to living on the top of the mountain after living sea level all your life).
Next thing we learned was that if you have served in the military more than 90 days they take full responsibility for ALS. Not sure why but Congress passed a law. So we got 100% disability and PVA advocates for us to get big things we need. Like they are helping us get a grant that will pay for a van for Dan to use with his electric wheelchair. The VA has already gotten us our wheelchair. The van grant is a LOT of paperwork! But we have everything in now and hopefully we will get it back soon. BTW: If you have been turned down before and have ALS the law changed back in February and you can get one now without having to have loss of limb. Which wasn't the case before.
Next thing was that the VA would have put our stair climber in if Dan had been able to get up and down from a chair by himself but he didn't need it then. Once he needed it (because he couldn't get up and down the stairs by himself anymore) then they wouldn't do it. So we had to pay for it by ourselves. So online we went. We found that you can get a used one and it doesn't matter why the more expensive sites say my brother, Jeff was able to install it in under 2 hours and he had never seen one before. So it is super easy! The more expensive and new sites say that you have to have a professional install it and want to charge you a LOT of money for that privilege. We measured it ourselves and told the store on the phone and within 10 days had it at our house and installed. It cost us $1440 for the climber, shipping and sales tax. We got the acron120 and it works awesome. We called 800-7901635 which is Ameriglide in NC. Dan loves the freedom and I love being able to get him up and down the stairs by myself again.
We are still waiting for the adjustments to our house to be made so he is on the main floor. This will include a wheel chair lift to get him from the family room, which we are making into a bedroom to the kitchen, living room floor. Another thing we learned was A- this takes a while to get everything done for it and B- It is better to adjust your home if you can. By the time we had we out and looked at other houses for over a month we realized that finding one that was already handicap accessible was almost impossible and next that we were going to put the same money in to adjust a new one as to adjust ours. Plus I don't have to try to move my husband. And since I already have so many changes I don't have to add another one. I also got to keep my support system, my church groups, and my home. Since VA is giving us a grant for that too we are doing the paperwork on that one too.
Last thing I learned recently Patience truly is a virtue. Dan is moving slower and I am having to learn to walk slower, be more patient when he talks, and wait for him to be ready to do what ever. Things I never thought I would do, I do such as wiping his nose, itching his underarm, picking him up (yes you do need a gaitbelt!), and putting his medication in his mouth, brushing his teeth showering him, wiping his behind. It is not easy but I love him and you do these things for the person you love.. Things I never thought would ever happen to him has and by extension to me. I am learning more every day!
In March 2014 we had went on a family vacation and had a wonderful time. Everything was perfect! Then it all hit! It has been a year now since his first "weak spell". He thought that it was his medicine for his cholesterol causing some trouble and the doctor changed them but it didn't help. That was in April of last year. Oh my goodness, what a difference a year makes! By the second week in May he had fallen in my sisters yard. We still chalked it up to "he stumbled". By the end of May he had fallen again helping our daughter, Kim unload her mattress. Then we knew something wasn't right. So off to the doctor he went. At first they thought it was MS. We thought that was the worst news we could get! We were so wrong. He went to the first Neurologist after waiting almost a month for insurance approval. After he saw Dr. Lehman (who was also my neurologist) one visit we were told that he no longer took our insurance. So then we began again. But this time while we waited our primary doctor ordered a bunch of test, cat scans, MRI's, x-rays, blood test. Then we found out that it wasn't MS. I will admit that we had a party we were so excited! :) We thought we could handle anything else that was placed before us. We were so mistaken. He got worse still. So then we talked to our Bishop at church (who is an ER doctor) to get a recommendation for another neurologist. He told us to see Arthur Allen. So we finally got to see the other Neurologist (and yes we did use Dr. Allen) and he said he suspected it was ALS but that there was one more test to do. So we scheduled another visit for a couple of weeks down the road to do the EMG. In the meantime we worried and worried and cried. We cried a lot. He went in and got the EMG and it said for sure or as sure as a diagnosis for ALS can be. Then we were scheduled to go over to KU to see the top specialist in the area. The Sunday before we got his final diagnosis I remember crying to the Lord with all my heart that this wasn't what was wrong. I remember pleading for help and I remember hearing a soft voice saying that he had ALS. That it would be our cross to bear. That I needed to accept it because I needed to save my energy for all that was to come. Our youngest daughter, Samantha was getting married in the temple the week we found out. It was between her Thursday big day and her Saturday wedding. That Friday that should have been one of our happiest days was full of tears. We tried to put on a happy face for her.
It was now August 15, 2014 and we were getting our second opinion. We both sat and listened as they told us "This is a fatal illness" "You are going to die" "The odds are that you will die between 2-4 years" "You need to make plans" "Do you understand what I am saying?" We sat there and just looked at him. We had cried so much at this point. He talked to us about ALS for over 30 minutes while looking at us strangely. Finally Dan leaned over and whispered "Baby, Can you shed a couple of tears I think he will keep talking until one of us cry," We both smiled then and I am pretty sure Doctor Statland thought we were crazy. But we made it thru the appointment by holding on to each other and our faith. Looking back I can see why he thought we were crazy and why he was waiting for us to cry but we had had weeks to come to realization that this was it for us. This was going to be our life for now.
We have learned so many things! We learned that you have to be a mind reader to know what it going to happen next. That everyday is a new surprise. That you can make it thru this with your faith intact but you have to hold on with both hands. We learned that we have to rely more and more on outside help. Something I never thought we would need because we have always relied on each other. And I have learned that we have so many, many people who want to help us because they love us. Next blog will be what happened when. But just so you know the doctors say my husband is progressing fast and your loved one may not.