Old 11-17-2015, 08:35 PM #1 (permalink)
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Default Advanced ALS

My Dad (80 years old) has advanced ALS. It happened extremely fast. Feb. he passed out, had every test known and came out with a clean bill of health. Swollen ankle a few months later and no Dr. could figure out why. In May he had what we thought was a cold/sinus/flu, then all of a sudden his speech sounded like he suffered a stroke and he started having difficulty swallowing food. Went from a soft diet to a stomach feeding tube in Aug. Now he is bedridden/wheelchair only in skilled nursing. To make matters worse, by brother passed away 7 weeks ago from a heart attack, so it's just me & my Dad.

Hospice has taken over his care, he says he is in no pain, but weeps quite a bit. I know his mind is fine, but I can't understand him anymore and he has a hard time writing or using speech assisted software on a tablet. Just don't know where to go from here...........at what point does hospice give meds for comfort...........he's a Christian and would not want to have the feeding tube removed.............anyone have any similar experience at this point in this horrible disease. I visit daily, but have to work also and feel numb...........
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Old 11-17-2015, 09:14 PM #2 (permalink)
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Default Re: Advanced ALS

Believe you can ask for these meds anytime in hospice. Don't worry about him talking. Now is the time to orally tell him different ways in your life that he impacted you. What a great gift you can give him by retelling stories of things you shared.
Know the talks my hubby had with our daughters were so important- even when they did most of the talking. Affirmation that he made a difference in your life is so important now for both of you. Sorry this is such a difficult time. Donna
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Old 11-17-2015, 09:17 PM #3 (permalink)
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Default Re: Advanced ALS

Bren, I'm sorry to hear about your dad.

I guess my first question is, why is he crying? Are you saying he's in a nursing home or at his home? Is he unhappy about where he is? If his mind is fine and he's not in pain, I would want to understand his distress and try to alleviate it before talking about the end. Many PALS live for years without a voice, but everyone wants to communicate still.

Have you looked into a head mouse that he could use w/ a laptop, or even a low tech letter/word board where he could point, nod or blink at letters? There are examples on line. There are other methods but I'm not sure how much movement he has in his hands? There are also many speech apps so if you can share what he's using and what's hard about it, some of the users here may have suggestions.

Is he having trouble breathing?
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Old 11-17-2015, 09:20 PM #4 (permalink)
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Default Re: Advanced ALS

Brenm51. I am newer that a lot of the other PALS and CALS on here but can offer some advise based on experience on here. Hospice's job is to make sure the patient is comfortable and should give your dad meds when he needs it. They should make sure he is comfortable until the end.

I am so sorry that you have to deal with grief of the death of your brother while having to experience this horrible disease. You can make some cards with common words and that way he can still communicate with you. I think that is the most important thing you an do right now. I understand the feeling numb and my thoughts and prayers are with you and your father.
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Old 11-18-2015, 01:46 PM #5 (permalink)
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Default Re: Advanced ALS

Since your Dad is a Christian, is there someone he knows, a pastor, church friends, who pray with him on a regular basis? Someone to read the Bible to him? To just be there with him when you're not?
Very, very sorry to read about your situation, the loss of your brother, and your Dad being so ill. You and your Dad are in my prayers.
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Old 11-18-2015, 11:33 PM #6 (permalink)
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Default Re: Advanced ALS

Thank you all for your prayers and comments. My Dad is in skilled nursing. He's not unhappy about where he is, it's a private 5 star facility. He's weeping from mourning and depression from this tragic disease. His mouth is going totally numb and we are not able to understand anything. He can not use his hands much, he did write and use a tablet with speech assisted software previously. His breathing is OK right now, but he is weaker. He reaches for things but doesn't quite make it, no control. He is also diabetic and has HHT (he can get a nose bleed that won't stop and he has had blood transfusions from it). It takes 2 aides to get him up into a wheelchair. The hospice pastor comes once a week and church/friends come often.

I told him tonight that hospice can give him meds to let him sleep. Hospice told me they can give him morphine and when the time comes, they can remove the stomach feeding tube.............this is the part I'm having major issues with. Donna, yes, I need to talk about the good times and how proud I am to be his daughter. I will make some cards, words that we use frequently, etc. I see his state as suffering..........laying there unable to move, coughing/choking on phlegm, not eating, not being able to be understood, wearing a diaper......... it's so sad, it's unbearable and I know he is miserable. The rapid decline is also so shocking........
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Old 11-18-2015, 11:46 PM #7 (permalink)
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Default Re: Advanced ALS

Why on earth would they remove the feeding tube?

Other than the obvious, food, it's also highly useful for hydration and delivering medicine.
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Old 11-18-2015, 11:56 PM #8 (permalink)
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Default Re: Advanced ALS

Yes, that sounds very weird, Greg. Maybe they meant stop feeds at the end and it was misintepreted.

It is also possible, Bren, that your dad is experiencing emotional instability as some PALS do and if so a trial of Nuedexta might be worthwhile. If he's in a five-star facility, I would also ask why they can't use a sling lift to toilet transfer instead of a diaper, or at least a bedpan & urinal?

He may need a BiPAP and could be choking secondary to shortness of breath, or he may be choking on mucus (or both), in which case there are many high- and low-tech strategies for reducing mucus [you can search the forum for threads] and that should be part of the care he receives.

I guess what I'm saying is, it doesn't sound like he's getting all the comfort measures that we typically provide at home, and he deserves them. So I'd print out some things, have a chat w/ his primary doc, the SNF medical and nursing directors, hospice, whoever's involved -- to make sure that best practices are being followed.
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Old 11-19-2015, 10:35 AM #9 (permalink)
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Default Re: Advanced ALS

The feeding tube would be removed at the end........... or whenever he choses. Yes, I believe emotional instability could be a contributor to the weeping. He has had a diaper on for weeks. He is unable to use a urinal or bedpan. The large contraption must be a sling lift that they just brought in. He had a BiPAP, he can't use it, makes him feel like he is suffocating and hurts his face. It also makes his nose bleed. He is choking on mucus, they give him meds for that and a patch behind his ear to help reduce the amount.

My brother & I discussed having him at our homes, he declined. Having the medical staff available 24/7 makes him feel more comfortable. He has his furniture and large TV in his room. He also has nursing home insurance that pays for 2/3 of his room. They have brought in an oxygen machine now. Hospice nurse visits every 3 days and they come in to bath him every other day. The facility is there 24/7 and feeds him 3 times a day. Everyone keeps telling me he is in the advanced stages..............I will research best practices. The hospice company has experience with ALS.
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Old 11-19-2015, 02:24 PM #10 (permalink)
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Default Re: Advanced ALS

Sorry for all that is going on for you.

They don't remove feeding tubes in end stage people, I'm sure there is a little confusion there.
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Old 11-19-2015, 11:23 PM #11 (permalink)
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Default Re: Advanced ALS

Also, oxygen is a poor substitute for BiPAP (often makes things worse). They need to find a mask and settings that work for him, not just give up. There is a combination that will give him the air he needs, without causing bleeding or claustrophobia. There are dozens of masks, thousands of settings. Ask hospice or the SNF for an RT who can work with him. A cloth mask or one that just touches, does not go over or into the nose, may help.

Again, I would also try the Nuedexta as it is hard for anyone to try new things if he is just sad all the time.
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