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Mar 11, 2006
Another change in Dad's condition....

Since New Year's Day Dad's condition has changed. He is developed "delurium". Some of the time he doesn't seem to know where he is or who we are. He often asks "if we are staying here again tonight" when he has been in his same bed now for over a year. He has often spoke about dying and has said many times that he is "going home". It is heartwrenching for us because he has said his good byes so many times this past 9 days.

I am just wondering if anyone else has had this experience with a PAL and if this is common during the later stages.

Just to note....It has been two years today since Dad was diagnosed.

Hi jac, gosh I wish I knew what to tell you, but It's kinda hard to pinpoint what is really taking place. You said he's had Als for 2 years, and now he says he is ready, and has been saying his goodbyes for days. He is the only one that knows how he feels, and if he says he is ready, he might be. I would not take a chance on this, I would take him very seriously. Death is quite tricky (right word?), it'll take your loved one away before you know it, and leave you there with all kinds of unanswered questions. I know, because it happened to me. I learned this from experience.

Now my question is: Where is Hospice? They are really good at telling if the time is near. If Hospice has not stepped in yet, you need to contact them asap! All I can tell you is, please take him seriously! May God bless you folks, and keep us posted!

Hi Jacquelyn. Sorry about your dad. Possibly his shallow breathing is contributing to a build up of CO2 in his blood. This could be causing the delirium. If he is not using a Bipap or any assisted breathing then this is probably what is happening. Is he on any new meds that could have this listed as a side effect?
jac, please listen to Al. He knows a lot about this disease, as I am only guessing. I know about als, but not as much as Al does, so please go by what he is saying. God bless!

Dad had been on bipap now for over a year now. He only takes it off to take his meds. I asked the doctor if it could be the oxygen level to his brain. But because he doesn't have blueish color fingers or around his lips he doesn't think that this is the case.

Dad has been on morphine now for quite a while. We did change his morphine from 15 -18 ml every four hours but that wasn't until after the delurium started. He wakes up from sleeping and often doesn't know where he is and keeps asking to get up. We try to reassure him and tell him that everything is ok and he is safe here with us but he often gets agitated. The confusion is usually the worse at the end of the four hours when his morphine is due.

Thanks for your comments...
I asked the doctor what could be causing the delirum in Dad. He told me that it could be a part of the progression of any terminal illness. The delirum hasn't gotten any better. If anything it has gotten worse. Dad gets agitated more and more and we keep him medicated cause it seems like the only time he is content is when he is sleeping.

If there is anyone who have went through this with a loved one, I would love to hear from you. ALS is bad enough without this sudden change in his mental condition. It is like he doesn't even know that he has ALS. He keeps asking us to get someone to help him.

I am sorry this is happening to you and your Dad, Jacquelyn. I wonder if some folks are just better "fighters" than others. Reminds me of that poem about not going softly into the night...It must be tough on you, though. Cindy
Hi Jacquelyn,

I am sorry that you are going through this--it must be really scary for you. How old is your father? Could it be age-related dementia? I agree with Al, though, that it could be a CO2 buildup. When my mother's CO2 level was too high, she experienced confusion and hallucinations. Her lips and fingernails were not blue when this happened. She was on bi-pap at the hospital when she suffered from complete respiratory failure (before I took her in, she had just been on it at night). Do you have access to a pulse oximeter? This can measure the amount of oxygen in the blood, and it might help you get a sense of what is going on. There are little bitty ones now that just clip onto the finger, and they cost about $150. You could probably "buy" one and then return it, or you might ask groups like the MDA if they have one you can borrow. You could also just take him to the hospital to get him checked out. This might be the best option, in fact.

Good luck, and I'll be thinking of you.
jac, cindy has a point, by saying some folks are better fighters. Not everyone departs the same, everyone is different. Have you tried talking to him? If he says he is going Home, try to go with the flow. I learned quite a bit from Hospice, because I have dealt with the dying on several occasions. It is alright for you to talk to him, hold him, soothe him, assure him that everything is going to be okay. He wants to hear that you will be alright once he passes. You can even talk to him about the funeral. Let him know that he is getting a beautiful/glorious farewell. As my son was dying, he reminded me once more who he wanted as pallbearers. He wanted to hear it from me that he was going to be laid to rest close to my mom, and that is exactly where he is. These folks even when they drift into a deep sleep, but still breathing, continue talking to them. They want to hear loving, soothing words, and lots of love. You can even lay next to him, hold him, pray with him. All of this will give you so much comfort later. May God bless you!

Good point, Irma. People who are used to having a lot of control or were in charge most of their lives need the reassurance that things will go as they wish and that the ones they love are going to be ok.
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