Some updates and decisions

[worrieddaughter77]

My dad is declining very fast. As new changes happening I would like to ask you for an advice/comments on the following points:

Fatigue: My dad is very weak. He almost can't walk or stand up from a chair anymore. Taking him to the Dr or clinic is such a draining task on him. Just getting an x-ray the other day for him was an ordeal. I am getting very frustrated now as I believe he could be getting a much better care if a nurse would visit us instead of me sending emails or taking him to the local ER or clinic. What is the protocol in these situations? Can we get a nurse visit him at home at this point?

Neck: Holding his head is difficult for him. I started looking into neck braces but immediately got lost. Can you please suggest a brand or site where I can start looking for one?

Cough: the cough has come back. He is suffering so much. We stopped using the nebulizer or the cough assist, simply because they produced even more exhausting cough. However, the cough is not gone without using those either. What are the options to ease it? What could be the reason? The most frustrating thing is that we still didn't get X-ray results back, so we don't know if he has an infection or not! This is so frustrating. I may end up taking him to the ER today, as I am worried his lungs are full of fluid. I really don't know what to do.

My dad's final wishes: This one is a serious problem for me. My dad is from another country and culture. He does not understand the individualism culture of Amerca. He told us that he wishes that we (me, my brother, and my mom) make all of the health related decisions for him, including end of life. And this drives me crazy! How can I convince him that I do not experience what he is, and I do not know whether the quality of life for him is bearable or not. AS things get worse, and we have no way of communication with him, how do I know? Also, he is getting so progressively weak that asking him to decide or type his decisions now seems like a torture. It feels like we are too late to try to change his mind.

His foot and hand: Very swollen. My mom massages them every evening, and the swelling goes slightly down.

My biggest worry is that what if he developed the same swelling in his lungs? EVerything else is petty OK still, he can eat reasonably, his weight is good, he still can shower by himself. But if his lungs are failing like this, how close are we to the need for vent? What are the signs and symptoms that those serious decisions need to be made soon?

Also, I have to say that what breaks my heart the most is that my dad never complained a bit. He only thanks us for anything we do, like bringing him meals, helping with dressing up, massages, Dr calls and so on. He is just silently suffering...

 

[soonerwife]

Is he on hospice? If so, you will have nurses visit periodically and you can call a nurse and speak on the phone 24/7. Sounds like this could be very helpful at this point.

 

[KimT]

Agree. I would get him on hospice. Maybe contact your local ALSA and see which hospice they recommend.

At this point I think his wife, with the help of you and siblings, will have to make the hard decisions. I'm glad he has a loving family.

 

[Narrowminded]

Worried there is also a difference between a vent and a bipap. A vent can very definitely be life extending. My husband has been on his for 7 years. However, he has not movement save 1 thumb, but not a lot of control over it. He can still smile and blink and there for uses an eye gaze computer to communicate, email, watch Netflix etc.

A bipap on the other hand helps with breathing but will not extend life. Not sure if your dad has one yet or not, but he may need one is he is having issues breathing.

That said, how long someone lives on a vent is as individual as this crazy disease itself. Diane H on here has been on one something like 15 or 16 years and she is still able to up and around much more than my Brian. Others, don't live but a few months with it. There is no predicting.

What I will say about a vent, is you need someone with them 24/7 that are capable of dealing with it.

Just wanted you to know the difference. The choice has to be your Dad's. I know he doesn't want to make a choice, but he must. And those supporting him must be ready, willing and able to handle the vent if that is the path you choose.

Hugs,

Sue

 

[lgelb]

If he is too weak to get up or walk, he needs a wheelchair. Is the clinic working on that? The equipment firm can send an ATP to evaluate him, to his home. But they will likely try to wait for clinic, so you may have to push.

I am not sure how frequent/severe the cough is. Again, improving the BiPAP settings may help; I'm happy to advise. But all PALS cough some once those muscles are getting weaker.

As you say, you don't want to wait to talk about his wishes when he can't express them. Talk about your willingness to put his wishes in place, as a way to talk about the wishes themselves. You can place them in his cultural context, I know, using phrases like "We will want to do what is right." Above all, find out more about the kind of life he thinks is worth living; you have examples from these pages to share.

For his neck, I would start with a medium density foam cervical collar from Amazon. You will need to measure his neck to determine the right height option.

 

[worrieddaughter77]

Soonerwife: he is not on hospice yet. I never thought he'd progress so fast, 2 weeks ago he was still driving. Now he can barely get up from a chair, can't walk stairs by himself anymore.... Things happened fast.

Narrowminded: He is on BiPAP already. And he wants to get a PEG, too. It is the most difficult decision:trach and ventilation that we do not know whether he wants it or not.

Laurie: they are not working on the wheelchair yet. I have contacted his ALS Dr about it today. Again, things are just crazy fast all of a sudden. I didn't think he'd need a wheelchair before next year. Thank you Laurie, also, for the next brace reference. I am ordering it right now.

Also, about coughing. It is significantly less now than last weekend, when he could cough for an hour straight, several times a night. After he quit using nebulizer, he got better for the first several days. NOw he has some bouts again, they last maybe 15 minutes at a time, also only in the evenings. Usually they are triggered by laugh, so I am trying to keep my baby away, as she always makes him laugh (which is so heartbreaking, since I want him to enjoy her, and he does, too... But then he starts coughing..)

 

[KimT]

Can you borrow a loaner chair from your local ALSA chapter? I don't know anything about your chapter but some are very helpful in getting resources and equipment...others are not.

Is it possible he is choking on his saliva when he laughs?

 

[judylyne]

If you don't have suction machine you should get one

 

[worrieddaughter77]

some more updates. the xray results came back. he developed platelike atelectasis in the lingula. The right lung is clear though. So now at least we know the reason for his cough. Ughhh... is this normal this early? I bet they won't let him have a surgery for peg now. It seems that bad news just keep coming.

 

[affected]

Sorry to hear this.

Sadly the one predictable thing about this disease is that it is totally unpredictable. So while this is not what we might expect to have happen so early, it is all about what nerves are affected and when. Your dad is having his breathing areas affected first unfortunately.

If they are looking at putting his feeding tube in as a RIG this should not really be any problem if they can maintain him on bipap and use the cough assist to keep his lungs as clear as possible. The main thing will be pain control as we don't want him breathing even more shallowly to control pain in those first days.

 

[Jlynn]

Worried, you mention taking your Dad to the ER. I'm not sure where you live but in my town I took my brother twice and it was obvious they had no idea what to do. Our best bet and saviors were hospice. Here you can be on hospice for up to 6 months and even then depending on the situation they would keep coming. It really helped having a "leader" so to speak. It took some pressure off of me. Thinking of you.