Mom does not want feeding tube.

[GilWest]

Just a little background. My mom had polio as a kid and had been unable to walk since age 3. late last year, she started becoming progressively weaker and we thought she had had a stroke. The doc at the hospital thought it was a stroke and we went home with that. A month later, her speech had gotten worse, so i took her back. The new doc said not a stroke and probably post polio. ALS Specialist trip followed, and he agreed that it was not a stroke and was probably post polio or ALS. Mom progressed, weaker still and then EMG. It declared that it was prob not polio, but new motor neuron disease. In the meantime, I had placed mom in skilled nursing at our local hospital. Now, mind you, Mom has all the classic signs of upper motor neuron disease. She is easily strangled when swallowing and the slurred speech began mid-year last year before the weakness. Anyway, she was released from skilled nursing, sent home, but I had to take her back and pay day to day for respite care until a bed opened up at a local assisted living facility. Whilst in skilled/respite care, mom ate with a little difficulty, but she seemed to maintain weight. After 3 weeks in the assisted living, I am unsure if mom eats much at all. She maintains that she does not want a feeding tube, but I told her I cannot let her sit and wither. She has atrophied more and lost quite a bit of weight in the 3 weeks since leaving respite. I am unsure what to do. What are the pros and cons of a feeding tube? We see another ALS specialist in a month because she was unable to travel the distance to the original specialist. Every doc I ask says it is just the progression of the disease and that there is not much to do, but I can't let her starve can I?

 

[Nikki J]

I am very sorry. If your mom is of sound mind she has every right to refuse a feeding tube and you need to honor her wish hard as it is.
However, I would look at a couple of things: if she suddenly began to drop weight in a new environment is she being given appropriate consistency food and is she being fed with patience and skill. Are you there for meals? Sadly not every worker performs at the same level. Now it may be that this is in fact due to progression as you were told. In that case all you can do is make sure she fully understands her decision and then love and support her.

 

[GilWest]

Mom is in her right mind, and the facility she is at is small. 16 beds to 2-3 CNA and 1 RN. However, she just picks at her food and eats with much difficulty. I guess her thought are what is the use. She actually wrote on her pad, "I know I have a fatal disease". I am still going to contact her new doctor and see if we can get her in earlier. Slim chance I know.

 

[affected]

I'm sorry about your mum, but I do agree the feeding tube is her decision.

What about getting some ensure or sustagen or similar and having her drink thick shakes with lots of calories packed in?

It is complex. As they weaken it takes far more calories to perform the smallest of tasks, including eating and they fatigue so quickly. They need more calories than they used to, but often the will to spend the energy to eat and digest weakens. It becomes a cycle, and it will hasten progression - the body needs the calories, the muscles are wasting, so the protein is used and wastage happens faster.

BUT - many PALS do not wish to take invasive measures to prolong their lives in order to continue to deteriorate. For rapid progression bulbar PALS it is often a matter of keeping them alive, not really giving then much quality, and only the PALS themselves can really say what their quality is and what their wishes are.

I wish there were good choices to make, but in this there are really only the better of bad choices

 

[MaxEidswick]

Hi, Gil --

>I guess her thought are what is the use.

I know exactly how she feels. Can she swallow liquids like smoothies and chocolate milk? Can the caregivers make blended drinks for her.

Tell her I have been unable to eat since January, but am maintaining my weight with 3 smoothies twice a day, I can give you the ingredients if you would like. They are easy to make and are tasty (if not a bit boring after 3 months ).


>She actually wrote on her pad, "I know I have a fatal disease"

Me too, but let her know that life doesn't end with diagnosis and many here have lived with ALS for many years.

Everyone progresses at a different rate, so guessing doesn't work.

>My mom had polio as a kid and had been unable to walk since age 3


she has definitely been dealt a rotten hand, but she must be pretty resilient for all she has gone thru. FWIW, I am 62 and can keep hanging on with the smoothies for a while longer.

Kind regards to you both!

Max

 

[GilWest]

We go for a swallow test next week. Do not get me into why the hospital/speech people did not do this sooner. But she really cannot swallow much without difficulty. She is still in good spirits, but if you were to see how fast she progressed...it is shocking. Most people cannot believe it.

 

[GilWest]

The specialist at the ALS clinic told her that she is progessing rapidly. Many of the push/pull kind of tests went from 4+ to 2 in a matter of 6 weeks.

 

[MaxEidswick]

>it is shocking. Most people cannot believe it.

I believe it.

I go for a second swallow test on the 22nd.

>She is still in good spirits

That is what is important!

There is a thread in the PALS section (Anxiety recommendation please), which discusses problems (ok, panic attacks) with swallowing.

keep her in good spirits. Believe me, I have swallowing problems, but so far I am getting down between 2,000-3,000 cals/day and haven't lost hardly any weight.

Sandy makes me a fruit smoothie first which is harder to get down, but I use it to take the pills (*los* of pills). Then, I have to face 16 oz. of chocolate mile, banana, & 2xtbls peanut butter, But thatt is good for 700 cals!, combined ~1,000 cals ... I the fill it in with 2-3 8 oz liquefied gazpacho which doesn't do much for cals, but the fiber keeps the plumbing operating .

hang in there. There are folks with tricks for every step of the way down this path. Check out the CALS forum to find inspiration .

Max

 

[affected]

I'm afraid I can believe it too.

My PALS is a rapid progression bulbar onset, and he loses some kind of function every single day.

 

[TGB1]

How old is your mom? My mom is 87 and has had her feeding tube for well over a year. She still has her strength and walks with a walker. Do you think your mom is making an informed decision - or is she afraid to get the tube because she doesn't understand it? I know it's a fatal disease, and the feeding tube is what's keeping my mom alive at this point - but the alternative of watching her aspirate food/choke/waste away from inadequate nutrition just didn't make sense for us. Again, if your mom is making an informed decision that's one thing, but you need to make sure she understands what the feeding tube is all about, and you need to understand it also, before she decides something this important.

 

[cervus]

I agree with all of Nikki's comment. As difficult as it might be, the ultimate choice is your mum's. Sorry you're all going through this.

 

[GilWest]

How old is your mom? My mom is 87 and has had her feeding tube for well over a year. She still has her strength and walks with a walker. Do you think your mom is making an informed decision - or is she afraid to get the tube because she doesn't understand it? I know it's a fatal disease, and the feeding tube is what's keeping my mom alive at this point - but the alternative of watching her aspirate food/choke/waste away from inadequate nutrition just didn't make sense for us. Again, if your mom is making an informed decision that's one thing, but you need to make sure she understands what the feeding tube is all about, and you need to understand it also, before she decides something this important.

That's nice, but this disease is different for everyone. My mom seems to think that a feeding tube will only prolong the inevitable.

 

[hjlindley]

I certainly agree that a feeding tube is your mother's personal decision. My neurologist got my attention by calling it a medication delivery system. Just a thought. But I certainly understand how your mom feels. I'm just sorry you have to watch it.
Hollister

 

[Atsugi]

... she does not want a feeding tube, but I told her I cannot let her sit and wither. ... but I can't let her starve can I?... She actually wrote on her pad, "I know I have a fatal disease". I am still ...

-- emphasis mine.

GilWest, I'm sorry you're going through the CALS experience. It does not get easier. As a CALS, we can help give our PALS the best quality of life, but also we can give them the most peaceful death possible. I hope that's what I get when it's my turn to go.

By looking at your words above, I believe I read that your mom has adopted a fatalist attitude, actually a realistic attitude, and is preparing to die. You, however, are still clinging to her life. (I could be wrong.) There's a conflict there. In my lonesome and most humble opinion, you might need to prepare yourself for that second part of the job: helping her in death. Let her make the decisions without pressure and conflict. Allow her to control her own life and death.

My PALS refused all tubes but a catheter. At the end, she preferred morphine over breathing assistance. It was her choice to go as quickly as possible. That way, she spent only one day in the totally locked in state. Of course, your situation maybe different at the end.

Your mom might benefit from an anti-depressant, too. But, of course, that's her choice.

 

[TGB1]

So sorry. I thought you actually asked for other people's opinions.