Feeling Helpless

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Jackfishem

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Mom has FTD-PPA, ALS, and COPD. She started antibiotics this week due to an upper respiratory infection. Last week, she would wear her bipap to sleep and for a few minutes during the day on occasion. For the past couple days, she's used the bipap pretty much all day. Even with the bipap on, she is still short of breath. I can see the physical signs of her body straining with every breath. Last night, I saw something I had never seen -- it looked as though her diaphragm was contracting with every breath. I was literally seeing a jerking motion in her belly.

She is pretty much mute from the FTD and is unable to tell us what she is feeling or what she needs. I feel so helpless.

From what I read, people with air hunger show panic in facial expressions. I don't see any of that. Mom just looks really tired and like she just doesn't feel well.

Mom is on hospice care, but I don't know when it's time to start utilizing their interventions -- maybe starting with some anxiety meds? Should I just be patient and wait for the antibiotics to do their work?

Does anyone have any experience with this type of situation? Any suggestions?

Thanks in advance!
 

affected

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Are hospice suggesting something and you are not sure if you should start doing it?
 

Jackfishem

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When mom got on hospice, they provided orders for the usual stuff - Ativan, Morphine, etc. The nurse hasn't suggested anything yet. I just don't like seeing her struggle like that. I'm sure if I asked for them to medicate her, they would, I just don't know if it's time yet.
 

scaredwifetx

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This is only my opinion after watching my mother struggle with her breathing before she passed at my home from cancer. The hospice nurse will give suggestions if you ask. I decided to have the Morphine and Ativan started when she was struggling to breathe. It helped to calm her and helped her pass pain free. My husband has ALS and has made me promise to not let him keep going once he is unable to breathe and is not able to communicate his fear. He is very fearful of the breathing. It is such a hard decision at any time but search your heart and try to figure out what your mom would want and what you would want in that situation.
 

affected

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Thanks for answering my questions so I can try to answer a little better too :)

A good hospice team understand medications and how to titrate (adjust them, usually upwards slowly) for effect.

You may be surprised at how much help is gained from tiny doses given frequently. Medicating a PALS does not at all mean bombing them out. A small dose of morphine or clonazepam can really take the edge of the anxiety, and help them breath better by just relaxing them a little.

There is a lot of fear around giving these medications, usually that it will bomb the person out so they are in a haze all the time, or that it means the end. This is totally false - good palliative care can make a huge difference without the bombing out effect at all.

Maybe you could talk to your hospice team and see what they would recommend, and really ask them to talk you through it all. Then you may feel you have enough information to really make a good informed decision?
 

Jackfishem

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Thanks for the suggestions. I will definitely start the conversation with the hospice folks.

Quick update on mom. After a couple days on antibiotics, her temporary respiratory issue seems to be resolving. Although she is better, she now wants to stay on her bipap pretty much all day, except to eat and go to the restroom. I know this is good for her health overall, but it shows me that maybe we need to give a little bit of anxiety meds. Maybe she's scared to feel that strain to breathe? I wish she could tell me...

Thanks again. I'll update after I talk to the hospice folks.
 

GregK

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I recently went from sleep only to full time use of the bipap.

I realized I was looking forward to my naps and bedtime not solely for sleep but for the relief of the bipap.

When breathing moves from the diaphragm to the chest muscles, the task of breathing becomes tiring.
 

Jackfishem

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Thank you so much for your response! I hope this isn't a stupid question, but how do I know that change takes place? What are the outward signs?
 

GregK

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Breathing with chest muscles is pretty obvious.

Same muscles as when you're out of breath and your chest is "heaving". Just a bit less extreme.

You can also watch the middle abdomen for the expansion that comes from normal diaphragm breathing.
 

affected

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It was easy to see that Chris was only breathing with the top half of his lungs for some time. He would kind of shrug his shoulders to help make himself breathe.

I would watch him sleeping and he had quite prolonged apnoea as well.

Staying on bipap as much as possible is the best thing she can do now, and hopefully a good discussion with hospice, who are seeing her and working with you both, will help you make the next decisions.

Remember thought, this is terminal - you can all make the best possible decisions at the time, but the monster is relentless and moving on and it's never your fault that it can't be halted.
 
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