HELP where do we go from here? Venting/ advice

[Karigav]

As we enter the next chapter of this disease, I wonder what the future holds. I am a 2nd to my awesome step-mom, the warrior, who is careing for my father. I am at their house a few times a week, almost all day, in between running my business (a small salon in town) and trying to spend time with my family (my kids are 2 and 4, my hubby is a firefighter out of town) but feel guilty because I want to be at Dads more. I really feel like they need me more now than ever before. My father, diagnosed on December 16, 2010, had been hanging as good as to be expected. His arms were the 1st affected. He was still able to walk, kind of feed himself, and use the restroom with only needing help to get dressed afterwards. In the past months I have not been there with them as much as I would like, knowing the day will come that she would need me all the time. I feel guilty even now that I am not there to help everyday. Its hard to try and level out my life when I want to be there so badly. In the last 2 months, my dad entered into a drug trial, which had hope. This was it, was going to be the cure! (of course) After the 1st treatment (5 days of medication), dad got sick with like an upper respritory infection of sorts and had trouble breathing. It went away about a week before the next treatment was due. after the 2nd treatment he got similar symptoms but more flu like and was passing out because of getting so choked, he also had a lot of pain in his back and shoulders. a week after that, he was in a hospital bed, in extreme pain, and we cant move him at all. He was showning signs of dehydration ( dark orange/reddish urine), not wanting to eat because of choking, talking about crazy things and begging for mercy. This is not my dad. I convinced my step-mom, the warrior, to get him to the hospital because I thought he was seriously sick. After spending the night in the ER, They said his white cell count was really high, but found no cause, they gave us heavy pain meds convinced he would be back to being able to sit up by the next day. That was monday. Today, he still cannot move, extreme pain in his mid section and back, unless picked up by 2 people, and is still begging for mercy. Is this it? He said the other day that he wasn't going to be around much longer and didn't want me to worry. He cried and appologized that he did not want to be a burden on us. But he isn't. I want to do nothing else than be with him. I want to talk to him, but he is not all there. I am really lost and confused and need some advice. Is this the end? He has expressed that he doesn't want to be kept alive, but is avoiding the feeding tube and trache discussion with me. Its not fair. He should not and doesn't deserve to suffer like this. I am going out of my mind, as is my step-mom, the warrior. She is not ready to let go. She doesn't want him to die, but doesn't want him to suffer. Help please. give me a heads up if I need to let go or hang on. What do we do now?

 

[EGBAR]

My heart is breaking for you. As I look ahead facing this with my daughter, I too like your Father dont want to be a burden on my wife and my daughter. The greatest gift of ALS for me is that I have it and they dont. Life becomes very precious at the end and no one knows how to handle it, but we figure it out. You are doing the best you can, and I know your Dad appreciates it. Hang in there for him, I love you for what you are doing for him.

 

[Karigav]

Egbar,
I am so sorry that you are on the other end. I see now how much suffering, and pain that comes along, and although you read about what to expext, nothing truely prepares you for what will happen. Hanging in there is not an option. It is a must. I just wish there was more I could do. I have gotten closer with dad in the last weeks, more than I ever was. I am very thankful of that. everyday is a new adventure for all 3 of us. I have learned to get over my own issues and focus on what is really important. We are talking about trips we took, animals we had and what he wants for my kids when they grow up. We have never talked like that before. It was always business. This is what I am greatful for now. I really appreciate your kind words and pray for peace and comfort for you and your family. Sending a big but gentle hug your way!
Kari

 

[Ms. Pie]

I'm praying for you Kari. Praying that when it's time that you can let him go with a clear mind and heart. What do his doctors say?

 

[Karigav]

I got to talk to the trials neurologist today. He called personally to see how dad was. They are not sure what is going on, but they know that this pain is not als related. However, there may be a secondary condition that they are unaware of. We are taking him to the hospital tommorow and going to have him admitted. They will run a battery of tests and give him heavier meds. The phentenol patch is helping a little more, but he is still in pain and a lot more out of it. I will update as soon as we know more. Keep praying that we can get it under control, and he can have comfort and relief. Thanks to you all!

 

[Ms. Pie]

I'm thinking of you and your Dad and your family Dear one. God's protection and comfort for you.

 

[notgivnup]

Karigav, my Prayers are with you all... Prayers for peace and comfort at this difficult time. ((Hugs for all))

 

[Karigav]

Thank you all! I am sitting here at the hospital tonight, sent my over exhausted trooper home (step mom). So far they have found a massive infection in his intestines, and we will have more results tommorow. I am ,however, still wondering if he has some kinda of demensia, I know the pain meds have something to do with the talking out of his head, but now he seems more confused. Dont know. Anyway, thank you all for your thoughts and prayers, I would hug you all if I could!gently of course. Good night!
Kari

 

[Katie C]

Kari.. while your dad may or may not have some dementia going on, keep in mind that not only pain meds but also fevers associated with the infection can cause similar symptoms. I wouldn't worry about that too much until he's feeling better.