When should I prepare for the end?

[Jecc]

Hi all! My mom was diagnosed with ALS in October of 2014. Through research, she discovered a link between ALS and Lyme. She got tested and sure enough has LYme. She started IV antibiotics and we thought would help. We were all hopeful until very recently.

She is immobile from the neck down. She just got a feeding tube in October. She refuses to ever be on a vent. That is OK for right now because she doesn't complain of trouble breathing and her O2 levels are 98%. The pat week she said she wants everyone to accept that she will not get better. She is terrified of not being able to breathe. Selfishly, I am terrified of the thought of watching her suffer. Also in the past week, she has gotten weaker, had more difficulty swallowing, and has been sleeping so much. I'm scared she has given up and I don't know whether to push her or to let her go in as she pleases. I cannot believe how devastating this disease is. I have watched loved ones suffer from Alzheimer's and pass and cancer and pass - this is by far the worst thing I have ever witnessed and my heart breaks constantly.

I just need to know - when do we know the end is near? I'm not ready to lose her. Her suffering is so tremendous. I know no one can give an exact time. I guess I just need some support and guidance. Thank you in advance.

 

[Nikki J]

I am sorry.
You are right we can not say when. ALS kills directly by malnutrition and respiratory failure. She has a feeding tube Does she go to clinic? Has she had breathing tested by blowing into the handheld device? If that is good she could go on for a good length of time BUT
She is vulnerable to the hazards of immobility- clots, infections. She is vulnerable to all the things humans are such as heart attack or stroke

Also I truly believe attitude matters. If she is ready to go she may go sooner than expected.

What she wants matters most as you know but if she is depressed she might feel better with medication

Where is her neuro? If she can't go to appointments and goes to MGH you can do a televisit. I think they still have a nurse who does home visits but that might be only for vents. Alternatively she might be interested in hospice

 

[Jecc]

Thank you for your response, Nikki! I'm not sure what breathing test she did. She is on antidepressants and an anti-anxiety medication to help her relax at night and sleep better. We used to have nurses come in. But supposedly their job was just to give us tools that we could use and once they taught us everything they could, they were gone. Her doctor has offered to make house visits. There just hasn't been a need yet. I'm just not sure what is involved in hospice. Do they just administer medications to make her more comfortable? Is there more to it than that?

 

[Nikki J]

The nurse visit is a specific mgh program so not applicable if she is not a patient in the ALS clinic. For future readers I believe it to be the nurse making specific assessments to relay to the neurologist who does not make house calls
Hospice is about comfort measures and emotional support for the patient and family. If she has all the equipment she needs you might want to at least look into it. You might want to ask her doctor to come and make an assessment. Is this a neuro, an internist, a geriatrician?

 

[lgelb]

"Refuses to be on a vent" doesn't apply to noninvasive ventilation (e.g. BiPAP), generally. If she got one and got comfortable with it, she could be less afraid of not being able to breathe. It might improve her sleep so she would not need so much. I would ask her clinic about her breathing test results and a BiPAP.

Best,
Laurie

 

[Jecc]

Thank you guys for listening and answering. We deal with her primary care physician and occasionally a neuro. She refuses to see a neurologist because they told her she was crazy when she suggested she might have Lyme. After her test came back positive, she wants nothing to do with them. She does have a nutritionist since she has the feeding tube. She has also been to the Children'a hospital at Milford Regional Medical Center to get communication devices. Today she has been coughing/choking all day.

 

[lgelb]

I'm sure there's more than one neuro in your area, but if she doesn't want one, any doc can write a BiPAP with an ALS dx. Our internist wrote ours.

As to coughing/choking, these are discussed a lot so you might want to catch up on past threads. Strategies range from pineapple/papaya juice (through any route) to Coke to suction, CoughAssist (both of which, again, an internist can write) and beyond. A BiPAP with humidification will rest her respiratory muscles somewhat and may [temporarily, admittedly] help her cough. You may also want to reconsider climate control and humidity in her home.

As to how near the end she is, it's hard to say from what you have said, but surely no harm in trying to make sure she is comfortable as technology can make her. And speaking of comfort, if she is still on the IV antibiotics, you should know that they are unlikely to make her significantly more comfortable (there is no convincing evidence for long-term IV abx in Lyme), and can cause their own discomfort. It is her choice, but you might want to explore the research a bit.