So I'm looking for some insight? I guess.

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DCWatson

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Hi. So I'm new to this and feel kinda odd talking about it online, but I am at a point in all this crazy that I'm looking for some life experience of other people. So here goes the story my dad was diagnosed with ALS at 31 years old he is now 47 so 16 years. I'm not really sure of what I'm supposed to say other than what was the end like? For other familys? My sister and I are doing full time care (I'm 23 and she is 21) and I guess I want to know what we should prepare for? I'm sure its different across the board I guess I'm Just reaching for something.....
 
Everyone is different and your dad is already an outlier at 16 years. Is he on a vent? Does he have a feeding tube? If you tell us a little bit about where he is at people might be able to say more though no one can predict. I am sorry you and your sister have grown up with this. It is hard and it changes you in many ways - not all bad though.
 
Yes he is on a vent and has a feeding tube his body is completely stiff he can't move anything other than minor movements in his head and his eyes and mouth but he can't really control his Tung he wasn't able to talk before the vent. He has become hyper paranoid and doesn't like to sleep because he is afraid he won't wake up. So he sleeps on and off all day but he can't be left alone for any reason for more than 30seconds. So we run shifts with my grandma. She is up from 3am till 11am and then my sister is up from 11am till 2pm and then I'm with him from 2pm till 9pm and then my sister is back for the 9pm till 3am. I don't actually live in the house with them im married and have a newborn so we live separate. But the point is his personality has changed ALOT he has become so paranoid and hateful. He gets very little joy though we try to make him as happy as possible. His skin has become very sensitive. Because he is in a hospital bed and always has his back he gets rolled and is on a pressure mattress to prevent bed soars but that only does so much so we are actually using my breast milk to treat his back right now and it's actually really helping it's almost cleared up all the redness and irritated spots.
 
I really don't have any advice but would like to say two things. First, you and your sister are angels and so is his mother. You all are so devoted.

Are there resources available to get some help? I really don't think it's helpful for you having a baby and being there that much. What does your husband think should happen?

I'm so sorry you had to grow up seeing your dad so disabled and helpless. How long has your mother been out of the picture?
 
I would have a hospitalist or a dermatologist advise on the skin. Milk dries up too quickly, and the supply won't be there forever.

Sometimes, the disease, over so many years, changes the patient. You can't expect him to be his old self when he is hurting so much with no hope of relief. I'm sorry.
 
I don't know how to separate replys so I'm going to do it all in one.
I
Idon't expect him to be the way he was before, i just wish there was a way to help the paranoia, and he has a doctor's appointment for his skin this week but we had to do something and breast milk does alot of Good things. And for the thing of being in pain, we do theropy with his joints to keep him from being to sore and if you ask him he doesn't really hurt to much normally but then again he doesn't like to think about it who knows.

Not angels just dedicated. Before he was sick he was the most giving man i have ever met. I am not biologically his but it didn't change the way he seen me I was his blood or no blood. The moment my mom brought me home I was his.
There isn't really much in the way of help his insurance will only pay his care taker 6hours a day and that isn't enough time for me and my sister to have normal jobs so we split it and each work "part time" for him so the only thing else is hospice and we don't want that because they want to medicate him heavily and that would take away from the little things he does still enjoy. And he doesn't want that. My mom and dad got divorced when I was 2. she is still helpful in anyway she can be but doesn't do normal day to day care. My husband knows this is important and is supportive of this. I just take my son with me my dad enjoys seeing him greatly so that helps with that aspect. The only thing I fear is my son seeing some of this stuff "if my dad lives another 4-5 years" but I want my son to learn what it means to love selflessly. I'm just worried about the possibility of scaring him. But then again who knows he could be a natural caretaker and help with things like filling his tube feeding bad or rubbing my dad's feet lol who knows.
 
The way you replied is fine, DC.

If your son grows up seeing how you help your dad, he will not be scared, and only learn more about love and and family. I'm glad your husband supports how you are dealing.

But when you say that your dad now "gets very little joy" and is "paranoid" and "hateful," I feel like you're not just asking how this might end, but whether it should. You don't have to be afraid to say that, or anything else, here.

Is someone keeping an eye on his vent settings? If his paranoia is relatively recent, after all these years, they may need adjustment. And how is his nutrition and hydration? Has he started any new drugs, supplements, changed his diet or regimen in any way?

If he is not sleeping enough, that can create paranoia and meanness or make both worse. So to test that hypothesis, you could ask for permission, using "I" statements, to put a sleep aid in his tube.

Best,
Laurie
 
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I don't have advice but your post really touched me. I was diagnosed at age 31, I'm now 32 and about ten months out from my diagnosis. I have 3 young children ages 5, 7, and 9, sounds like it is very close to the age you and your sister were when your dad was diagnosed. I often wonder what it will look like when they are teens or young adults and if I will be around then.

Sending you and your sister and grandmother virtual hugs and support. Your devotion to your dad is humbling. The breastmilk idea was brilliant by the way!

I do wonder if a medication might help with anxiety/paranoia, maybe something to look into.
 
Along with what Laurie and Kristina said it's possible that an antidepressant might help.
 
He been on the ventilator since February. He only takes Tylenol and ibuprofen to help with his sore joints. And Miralax to help him go to the bathroom. He takes Benadryl to help with allergies sometimes. He refuses to take anything else because he doesn't want to be on anything narcotic. And yes...I do wonder wether or not it should end.. and I don't mean it in a " I wish you were gone way" I mean it in a what is he's quality of life is he suffering to much to deal with this anymore I just dont know.....I just don't know......I feel bad for even saying that but �� I don't know.
 
DC, I hope he knows that antidepressants are not narcotic. They do not make you loopy. In the old days, it seemed like everything the doctors gave us for the brain/mind/nerves was an addictive drug that made the patient goofy. The pharmacy is sooooo much more sophisticated these days. I'm a 62-year-old military man from a long line of conservatives skeptics that thought psychiatrists were ghouls. But after some experience--I was married to a doctor for 20 years, and I've been taking an antidepressant since 1996--I can assure your dad that after I took an anti-depressant, I did not get either addicted or high--I just got better. Better attitude, better perspective, and better outlook.

Concerning your own emotions, don't feel bad. I think nearly everyone has the thought "he disease is killing me, too!" That's true. I suggest every caregiver look out for themselves while they are caring for their PALS. The disease is going to kill a loved one--don't let it destroy your life, too.
 
I agree with Mike, 100%. I've been taking Remeron since 2003. It made me think more clearly. I was a college professor, authored textbooks, and a CPA. Remeron made my work easier and my mood and disposition much better. While on it I was awarded faculty of the year, the President's Award of Excellence, and Faculty's choice for research and professional development besides publishing two textbooks. The side effects, for me, were better sleep, dry mouth, and constipation. I also gained about 10 pounds the first year I was on it, which I needed.

They use it off label in nursing homes to stimulate appetite.

I was afraid to take it for a couple of years and very skeptical that it would diminish my work performance. It only made it better.
 
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