New phase of progression?

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Jackfishem

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I wrote this weekend about mom having an indentation above her collar bone when she inhales. Since then, I've found out that this is called tracheal tug or suprasternal retractions. It's a sign of respiratory distress.

Mom was dx with FTD in early 2014 and ALS in late 2015. She's got restrictive lung disease, which makes it hard to exhale, and COPD, which makes it hard to inhale.

Lately, she's been eating less, been more tired, and now has the "tugs". I assume this is just the next phase of disease progression. I'm questioning if this is the beginning of the end -- the last phase. Do any of you have experience with this situation? I want mom to be comfortable -- we've had her on hospice since January. Unfortunately, I think the FTD keeps her from making decisions that can give her lungs a break -- she refuses to use a wheelchair and prefers to walk everywhere; she refuses to use her bipap during the day, even when she is short of breath. I just don't know what to do. It's so hard to just stand by and watch. It's even more difficult when the hospice group has very little experience with FTD and ALS separately and pretty much no experience with the diseases together. I feel like I'm on an island.

Anybody out there have any words of wisdom, encouragement, experience?
 

Atsugi

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No wisdom here, but some experience. My PALS had a very rapid progression with limb onset. She lasted nine months from first symptoms to totally locked in. She was totally locked in, and could not blink or move her eyes, for just 24 hours before peacefully passing away in our home, surrounded by family.

Everybody is different. Treat each symptom as it occurs.
 

affected

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Hi Jack,
my husband had FTD and was poor at decision making for his quality of life.

But I let him make decisions that I did not agree with. Some of those decisions may have shortened his life. If they did, probably only by weeks, or maybe months.

But it was his disease, his body, his life. I did draw the line at a few points, but really ALS takes away nearly all control. I was not going to take what little control he had.

Loving your mum is the most important thing now.
 

Jackfishem

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I asked mom's hospice nurse if mom may be developing pulmonary hypertension due to the lung diseases -- mom is short of breath, fatigued, dizzy, has swollen feet, and has a rapid heart rate. The nurse said mom's symptoms are non-specific -- there could be a number of reasons mom is having those symptoms. I ask the nurse to consult with the hospice doctor to see if there is any medication we can give her to treat the symptoms and make sure she's comfortable. The nurse asks what symptom I'm most concerned about and I tell her it's the shortness of breath -- I don't like seeing her having problems breathing. I tell her how frustrating it is that we can't rationalize with mom to get her to use the bipap and that mom can't tell us what she's feeling because she's lost her ability to speak. The nurse says she understands, blah, blah, blah, and that she wants to get mom an oxygen tank in case she needs it....

Oh my gosh...she won't use the bipap, but you think she'll wear an oxygen mask??? And have you read anything about the contraindications for oxygen treatment in ALS patients??? I just want to scream right now...

It's bad enough watching my mom slowly slip away, both mentally and physically. Now I have to make sure the "professionals" know what they are doing? Wow. Just wow.

Vent over. Thank you for listening.
 

affected

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Sadly with your mum having 3 different breathing issues, O2 may be indicated as a palliative measure. If her only breathing issue was her diaphragm and intercostal muscles failing it would be different.

Maybe the decision needs to be made on the basis of - are we trying to prolong her life for a long time, or are we only concerned with palliative care.
 

Atsugi

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Jack, just my 2¢: Whether you're looking at the end or not, just make her happy if you can.

Sad to say, but you just can't tell. PALS might die suddenly, or they might stay with us for a long time. Our mantra is to live life one day at a time. You wake up each day, see what she's got left, and then make that day the best it can be.
 

lgelb

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Jack, is your mom using any kind of communication method, like a word board? She is the ultimate authority on what she wants, as you well know, FTD notwithstanding.

The symptoms you describe (not sure how "tugging" signifies since she has been in respiratory failure for some time) of course relate to COPD and it is quite likely that she now has new or worsened CHF, which often accompanies COPD. Is she on any antihypertensives? Is her BP/pulse checked regularly? What does she eat? If she is willing to take oral meds, something like an ACE inhibitor might be helpful if indicated. Why does she not want BiPAP? If it's the mask, have you tried mouthpiece ventilation (don't know if she can seal or not). Have you tried a cloth mask?

At the end of the day, as Mike says, there is no way to know how close the end is, esp. without knowing what she wants out of her remaining life, and so I would try to have that dialogue, very simply. I can also understand your frustration with hospice. Her internist should be able to consult in terms of her heart.

Best,
Laurie
 

Jackfishem

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Thanks for bringing me back to reality. My one goal right now should be to make mom comfortable and to enjoy the time I have left with her. I'm a "fixer" and am having a tough time not being able to control anything. I know y'all know this, but it is sooooo hard to just stand on the sidelines and watch. I appreciate all of you!
 

affected

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Oh Jack I can identify!

I'm a fixer too, it was so hard to come to acceptance of something I could not fix.

But I have such peace now that I was able to work hardest to love Chris and give him comfort and dignity.
 
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