How to cope

[Turtle3008]

I'm heartbroken. I don't know how everyone deals with this disease the way they do. I find myself crying time and time again because of what my father is going through.

After getting off the phone with my dad his voice sounds a lot weaker. For the last few years since his diagnosis I have always opened up our phone calls with "Can you eat? Can you breath fine? Can you swallow?! But this time he had told me that his breathing is getting weaker.
He tells me that he is gasping for air more often now and he feels like he is choking. When this first started happening a month ago our family had thought it was maybe the food he was eating. Fast forward to now and he gets these gasping for air attacks regardless of him eating or not.
I currently live in Yakima, Washington and he lives in Guatemala so I can't do much as of right now. I did notice my family from down there has started to add me on Facebook and it's giving me anxiety in general. Is there something they may not be telling me regarding his overall health?
I'm thinking to myself...is the end near?

I told him that I had joined an ALS forum support group and have been reading a lot of others experiences and how equipment helps vastly and so on. I brought up feeding tube's and bipaps (this type of machinery was alien to me until I joined the group) and he said that's not what he wants for himself.

I'm at a loss for words but I find comfort in knowing that this forum is here for some support.



Thank you for your time.
Jose

 

[Nikki J]

It is his right to choose whether he wants the interventions. If he understands and decides that isn’t what he wants then you need to be able to support his choice. It isn’t that unusual. My mother chose no intervention too.

It is hard to deal with and extra hard when you live far away. I think it is a touch easier ( not much) when you see the day to day struggle. There is no shame in seeking help. Grief counseling, medication, perhaps a local support group can supplement this forum though here you will find others who are dealing with similar issues and we will help as much as we can.

ALS changes a family forever

 

[lgelb]

If he is gasping for air at times with no plans for BiPAP, José, it is probably time to start your calls with "I love you" and just share stories of your day and memories of your times together, and anything else he wants to listen to or talk about, instead of asking about his health. He might have special wishes or hopes for your future that it could be meaningful to hear. Likewise, you can encourage the family in Guatemala to follow his lead and to avoid placing any burden or expectation on him.

We don't know how much time we'll have together, but we do control how we spend it.

I would also make sure that the family members that are taking care of him understand his wishes for peace ahead of a longer life, to reassure him that they understand, and that he has access to sedating drugs that will enable his breathing to be more shallow and easy when it is no longer as important to him to be fully aware. A good life deserves a good death, and all religions support helping with comfort at this time.

 

[ReginaS]

I would not have known the following had I not lived with someone with ALS. If getting air is a problem and the patient does not want to use BiPAP, most likely - at least here in the US - hospice will provide morphine and ativan to help a patient find comfort.
When this starts (without use of BiPAP) often the patient might live for weeks, but not for many months. I am not a physician and have limited experience. Best to talk to people who know more.
So sorry you are so far away. My father died and I was in a different country as well. I traveled for the funeral but it would have been nice for us to be able to say good-bye.

 

[Turtle3008]

I just wanted to say thank you to every single one of you for your love and support.

I will be going on an airplane tomorrow from Pasco, Washington to Guatemala Aurora International Airport.

Unfortunately my worries were spot on and my father is not doing well at all. The doctor did not tell my dad but instead told our family that his organs are failing (This I'm assuming is caused by something else entirely different from ALS). On top of his body withering away from ALS he is also battling a plethora of other issues it seems.

The doctor told us to just enjoy what time we have left and give him what he wants along with making him feel as comfortable as possible.

The return flight is going to hurt so much but I am ready to be there for him.

Had to join a flying anxiety support group since I hate planes (lol).

Love you guys and thank you again for your kind words and support.

- Jose Hernandez

 

[Turtle3008]

Hello Family!


Landed in Guatemala on Monday (The flight was rough). Since then we have put my father on a BIPAP through his consent. He was so happy to see me it's unreal. I think me visiting changed his mind about the future and how he is managing ALS. The only thing is that he is having a super hard time getting the Phlegm out of his lungs.

I've looked everywhere tirelessly on a machine that will help in this matter even went as far as calling multiple businesses that sell these devices. Apparently the government cracked down and they are no longer making any new type of BIPAP/Cough assist machines and the best case scenario is looking at a certified refurbished and a new machine if I'm lucky.
Any advice on where I should look?
We did manage to get a prescription for some of these machines but even then we are looking at 3k +$.

I might need to take out a student loan to pay for this. I just want my dad to feel relaxed and stress free even though I know that isn't achievable (there will always be some type of stress with this disease).

He is having a hard time eating at times so we are breaking down the food in smaller portions to accommodate these new changes. Eventually he will need a feeding tube I am assuming.


He unfortunately nearly died the day before I landed due to him choking on food and not being able to breath. I'm assuming the disease is know reaching his Lungs and is impacting his ability to swallow. He can still talk fine.


Any ideas are welcome.


Thank you ALS family,
Love you tons.

- Jose Hernandez

 

[Nikki J]

I am so glad you are there. It means the world to both of you.

Will the government allow a bipap from the US ? People here have used secondwindcpap with success. Aside from the getting it into Guatemala I don’t know if they honor prescriptions from out of the US and think they only ship to the US - but since you normally live here perhaps you could ship to a friend who could send it on.
If he is having swallow issues adjust textures and hopefully he will accept a feeding tube. Earlier is better than later. He could still eat for fun as long as it is safe but aspiration is a big danger and weight loss will speed progression

 

[lgelb]

Second Wind does ship to other countries. You can contact them via their web site. Currently they have a "Standard ResMed S10 Aircurve ST" with humidifier on their site for $849. That is the best deal for what he needs for BiPAP that I see there. You would still need to get a mask, which they also sell -- look under "Masks" on the site.

As far as a refurbished Cough Assist, look at Bemes Online. Not sure where they ship but they might have a referral or as Nikki said, maybe you could use a Yakima address and get someone to forward it if you are not back at home.

Take all hard skins, raw produce, kernels, seeds, etc. out of his diet. You can blend the rest smooth if that is easier for him. For some people, regular dairy increases mucus so you might want to try nut milks/yogurts/ice cream if available.

Eggs, nut butters, olive oil, canned fruits, puréed meats, applesauce, yogurt, ice cream, are examples of smoothie or soup ingredients, and you can feed him via wide straw or spoon. If he can still eat some solid food, an oyster fork or other small utensil like a baby spoon can be easier to manipulate for you or him. Warm or tepid may be better than cold for some things.

​

 

[ReginaS]

I'm so glad you made it! Much luck and energy for the care. I hope you can get the equipment that you need and that it makes a difference.