Scared of these later stages ! And what to expect

[loving wife]

My husband was diagnosed with ALS October 2010 , we made the most of every day while he could walk and talk, now he is on a ventilator 24 hours a day, peg feed for the last 12 months, and is bed bound. We get help with palliative careers once a day but I look after my husband 24 hours a day .He never moans about anything we communicate by blinking his eyes for yes and squinting to say I love you so we do make the most of everything and have adapted in every way. The reason for my post is to ask about the late stages , the last couple of evenings he has started making excessive saliva and choking ! And he has a hyocine patch on , I even additionally use atropine ( eye drops ) to help dry it up . He keeps biting his tongue to which the blood is dribbling everywhere , he panics and then starts to sweat and get very hot , this lasts for about 2 hours (I also give him 5ml of larazopam & 5ml oramorph to calm him down) it takes a while but this evening 2 hours and I can't find any information on what exactly happens at this late stage ...? He has filled in an Adrt so calling do I still call an ambulance as he wants to be at home, I would be very grateful if anyone could give me any advice or if they have cared for someone with this condition. Many thanks in advance xxxx god bless xxx

 

[loving wife]

We have been through all the wheelchairs, cough assist, suction machine, now it's just peg feed, nippy ventilation, fentanyl patches and hyocine patches, there seems nothing else so is the end near ? It's the worst disease I have ever encountered and it really does test you emotionally , but I stay strong because my husband never moans and keeps me strong we help each other through x

 

[slicknscoot]

I too am wonderingbthe same. My mother inlaw refuses bipap and ventilator. Her lung capacity is at 42% as of nov 8th but I feel its dropping even more. She still walks but very slow. She does have a feeding tube but has lost 9lbs in the last month and doesn't do anything but sleep and go to the bathroom and toss and turn all night. I hope you find the answers that you seek.

 

[Barbie]

Dear loving wife, is the care you get daily from hospice? if so, they should be able to give you more answers about your husband's condition.

My husband recently went thru a tough time with choking and saliva and it was very scary for a couple of months. It was very much like what you describe. why he started choking and coughing I do not know--the sweating comes from the fear and lack of oxygen which caused his blood pressure to go up.

The only thing that I can figure is that he had a virus and got over it.

 

[Barbie]

one other thing, there are some good older posts about what to expect in the end--some caregiverers have very kindly shared their experiences. I know that Astugi started one last summer. go back and read some of those, they are very moving and informative.

 

[skipper66]

Loving wife: Wish I had some information for you but I don't. But, it does sound like you are a very loving wife. I am truly sorry that you and your husband have to go through all this. You as well as everyone on this forum are in my prayers. Kim

 

[jmchilindrina]

My mom has been on a ventilator for four years now. She has no movement except for blinking her eyes. She also gets a lot of saliva so about 2 years ago she started having us place a folded paper towel in her mouth. The ones that work the best are the bounty select a size. We use one sheet (they're half the size of the regular ones) and fold it in half 3 times. She has one in her mouth most of the time unless we're taking a picture or something. She has us change it about every 10 minutes or when it's soaked with saliva. This has been working for her for a while. We also suction her mouth every time we finish suctioning her trache.