Barbarassister's thread- new member

[barbarassister]

Today, as every day, brings the need for yet more adaptations and modifications in my BIL's care. He has, with much anguish, acquiesced to having her bathe him and clean his bottom. Consequently, he has wept inconsolably as she reminds him that they promised "in sickness and in health". She has not wavered form that even for a moment. She said that the other night he had much difficulty sleeping due to a lot of stuffiness in his nose and head. They did the usual routine of Zyrtec tablet and Flonase spray with little to no benefit, as is often the case.....even with his head raised on a multitude of pillows which take from 15 minutes to over an hour to configure at bedtime and each time he has to get up at night. While the hospital bed is still being considered, does anyone have suggestions to try to help alleviate the stuffiness that impairs his breathing, please?

 

[nona]

Has he considered non invasive ventilation (bipap)? In addition to assisting with breathing, the filter and humidifier help immensely. Also, he may want to consider taking Nuedexta, which might help level out his emotions. I didn't think I needed it at first but when I went off it for a month I was a wreck. Everything made me cry and I couldn't cope with regular decisions. Both the bipap and Nuedexta should be overseen by his ALS clinic.

 

[lgelb]

Nona, it was mentioned earlier that he has a Trilogy.

Sis, for nasal congestion, Flonase or any other nasal steroid should be used morning and night on a regular basis, to get more benefit, likewise an oral antihistamine should be taken every 24 hours; neither works immediately. The machine and room humidification can be tweaked, filters cleaned, etc. And she could try a baby bulb aspirator to get mucus out, as we did, or, with care, an olive tip with a suction machine.

A note on small rooms -- in our apartment, I had a twin bed that I got a custom width for (30") to fit next to my husband's 36x84" hospital bed. They were a couple of inches apart, just enough to stand in for care and allow for movement of his bed mechanism. We moved the wheelchair out of the room before using the Hoyer as there was not room for both while maneuvering the Hoyer. Just some things to consider, not knowing the dimensions of their room.

 

[nona]

Sorry, I did not reread the whole thread, just started with the most recent inquiry.

 

[barbarassister]

Thank you all. I just got off the phone with Barbara and shared some of this. Then I sent it all along to her in her email. She has, as always, expressed her deepest gratitude to all of you....as do I.

 

[Oaks]

Regarding eating issues and a feeding tube: As much as we hated the idea of my wife getting a feeding tube (G tube), it relieved some stressors. It got too difficult to get calories and healthy nutrition and avoid weight loss. Eating was also tiring, so she could not get in enough food, and it got to be stressful trying. With the tube she gets Real Food Blends and Liquid Hope, plus we blend our own. With some exceptions and with some experience, any meal I eat she can have the same thing blended. I strain some of these homemade blends to make sure there is nothing that might clog it.