Suctioning - It's nonstop

[jayswife]

Is this normal? Jay says he can't swallow his spit so I have to suction him every few minutes throughout the day. I don't mean to sound selfish but this is making me crazy. Before ALS Jay was a always a spitter and it drove me crazy. If he was outside he would spit nonstop. So I'm wondering if this is normal with ALS or if its worse because he was always a spitter. The only time I don't have to suction him every few minutes is when he's laying down which I don't get. If he can swallow his spit when he lays down then why can't he when he's sitting up? Is there anything we can do for this? The other day he told me that its better to be suctioned when he's sitting straight up rather than when he's in his recliner - which isn't really back far, more like his feet are up and he's reclined a little. I said if that's the case and I have to sit you up every time you need to be suctioned then I'm going to end up in a mental institution. I know, it' was wrong to say that I cried and apologized after. It's just this is becoming way too much than I can handle. I feel like I'm about to break.

 

[KimT]

Maybe it's time to get some help.

 

[jayswife]

Yes, I would love some help. However, we don't have the money for that.

 

[Nikki J]

For the problem of excess saliva there are medications to help. My sister had great results with Robinul and there are a couple of other things to try. Ask the doctor

I am sorry you are so overstressed

 

[jayswife]

Thank you! I just emailed the nurse from the clinic regarding meds. Jay has an appointment today at the clinic but we can't make it due the extremely cold weather, wind and ice on the ground around our house. I can bundle up and clear it up so I can get him out of the house but since it's so cold he tends to become stiff and I can't really move him. And once he's cold he stays cold for hours.

 

[Dave K]

It took us a long time to dial this in. My wife tried multiple medications and eventually found some success with Scopalamine patches. Also, she eventually started to keep a small piece of cloth (a section of microfiber washcloth) in her mouth, which actually helped more than anything. But we still had to do a lot of oral suctioning. As for the affordability of help, are you sure you have exhausted all efforts to maximize the available home health aide and/or nursing help from your health plan? It is extremely common for health plans to try to get away with skimping on this. You can't be someone's nurse 156 hours per week. It's not humanly possible.

 

[Narrowminded]

Jays - we found success with Robinul, for Brian scop patches were too drying as were Atropine drops. Trust me, I totally get it. I also get the "no help" as well.

Dave K - while you can't be a nurse 156 hours a week, some of us still have to. We too cannot afford care and Medicare covers nothing. I've tried every which way. Even though Brian is on a vent, that is still not considered by Medicare to be a skilled service. I've personally looked into waivers etc, we don't qualify there either. We do have a stipend from our ALSA that affords me a nurse approx 2x a month.

Hugs,

Sue

 

[KateEmerson]

Regarding swallowing spit when lying down and not when sitting up....I noticed with my husband that as he progressively lost tongue movement he had difficulty getting food and then liquids to the back of his throat in order to swallow them. Wondered if this might be an explanation for what you describe? Sorry I can't offer any suggestions on the amount of saliva since we didn't have that experience. Hope you can find a solution as I know what it feels like to hit the breaking point which I have reached many times.

 

[sweetmozart]

I am in the same 24/7 caregiver camp. It is not easy.

My husband has had issues with excessive saliva, especially at night. He takes medication for it, but only as needed. He has bigger issues with needing constant nose blowing, probably the same vein so to speak, so I know where you are

 

[scaredwifetx]

jayswife, I am so sorry that you are not able to get a break. I cant help concerning the saliva as Steve has not had issues with it yet.
I just hope that you can get family, the community or friends to help and give you a break. You might want to talk to his doctor to get some suggestions. Also try the ALS Association and ALS Worldwide.

You are in my prayers. Hugs from afar!

 

[soonerwife]

My PALS has had problems with excessive saliva for quite some time. He uses gycoplyrrolate which doesn't eliminate the problem but helps. I can't imagine what it would be like to have to suction every few minutes. I hope someone can give you some relief soon.

 

[IbisPibis]

My mom tried the scopolamine patches and atropine drops (already mentioned by others) with no success.

Botox injections were another potential solution. 8 shots to the salivary glands and the effect lasts about 3 months. Unfortunately, that actually made her saliva thicker.

Maybe your husband will have better success with those options.

The only thing that works for my mom is hyoscamine taken orally, which (strangely) wasn't offered to her until she was on hospice.

My mom was offered a suction machine on many occasions. I'm grateful to her that she recognized the impracticality of that option and turned it down. To that point, we told the hospice that we would take their suction machine if they also hired a full time suction attendant.

 

[Dave K]

Even though Brian is on a vent, that is still not considered by Medicare to be a skilled service.

Skilled nursing care, according to Medicare benefit policy manual, includes care for a G-tube and suctioning via a tracheostomy. See also See AARC Clinical Practice Guidelines Endotracheal Suctioning of Mechanically Ventilated Patients With Artificial Airways 2010 ETS 12.3 (“Personnel. Licensed or credentialed respiratory therapists or individuals with similar credentials (eg, MD, RN) who have the necessary training and demonstrated skills to correctly assess need for suctioning, perform the procedure, and adequately evaluate the patient after the procedure.”).

Care for both a feeding tube and a tracheostomy can be taught to a family caregiver, but even when a trained family caregiver provides tracheostomy suctioning, it is still skilled nursing care. When a hired care worker is needed to supplement the family caregiver, any health insurance plan--including Medicare--should be supplying nursing shift care. While the family caregiver is sleeping, if the patient requires monitoring for suctioning, it should be deemed medically necessary to provide the care of a skilled nurse. While the family caregiver is awake, any board certified rehabilitationist knows it is medically inappropriate for any one person to provide more than 8 continual hours per day of skilled nursing care to a quadriplegic on a ventilator. One cannot expect to provide a competent level of care while suffering from extreme exhaustion and fatigue. Hence, if a bureaucrat is telling you that caring for a vented ALS patient is not considered by Medicare to be a skilled service, they are dead wrong.

Note: By statute, Medicare home health services are currently limited to a maximum of 35 hours per week. For hospice patients, there is no maximum number or duration of nursing visits. Anyone who tells you otherwise is simply wrong.

 

[Nuts]

Thank you, Dave.

Sue, are you receiving physical therapy? That's another area where HHAs try to get away with not following Medicare guidelines. ALS qualifies for maintenance PT care. All the family has to do is refuse to do it. Tell them you are uncomfortable or unable. They then either provide a thereapist or train (and provide) an aide to do it...under supervision.

Once a patient is receiving skilled care, they then qualify for a bath aide.

I had to push this for my mom while she was still here. The same company provided care for Matt (Pals) and mom (Parkinson's). When I was asked why I couldn't shower my mom, I asked if they'd met my husband (DUH). they sometimes make you feel like a slug for saying you can't or won't....we shouldn't have to push back this hard.