[Sita]

@reshma
Dear Reshma

I find a lot of similarity between our moms. She says the same thing about milk too.

Steroids doesn’t cure any condition, it only gives them some relief. My mom and I resisted taking steroids until she could hold out. Then we agreed to 5 mg per day, it was then increased to 10 mg if we needed to travel or do something outside home. Her condition worsened in her last travel to India, I don’t know if it is the air quality or the pollution, I accompanied her back to here. Ever since that she has been on 20 mg, May she worsened a bit so we increased to 40 mg for 2 weeks and then brought it down to 30 and now to 20 mg again. You can talk to your mom’s physician, but again this is not a cure…you are only treating her symptoms.

We have also tried homeopathy. It worked for sometime but not much options now 🙁

[Sita]

@reshma

When my mother was diagnosed in 2015, she was 125 lbs, now she is 95 lbs. She eats very little. She says she can’t taste or smell anything, sweet is the only taste she has retained. Thanks to heavy dose of steroids and cellcept, it leaves them with all these side effects.

I agree with Charlene, I give her ensure also, it gives them a good source of nutrients. I also give her soups, she finds this texture easier to eat. Remember, being too full makes their breathing very uncomfortable, so if you can give her small portions in frequent duration that would help her.

 

[Sita]

Charlene and Susan

Thank you for your response. Charlene, I appreciate all the extra information you have provided. I will call the oxygen company and have them come. Due to Covid, they haven’t shown up and it has been 4 months. I think I will also call my township and put my mom in the emergency list – I didn’t know these options existed. Thank you. I appreciate it.

We have a Resprionics too but it works only on pulse setting, mom’s level only goes up to 90 on it. She dislikes the pulse flow, says it is very uncomfortable. The pulmonologist has contacted the oxygen company for us to change our POC to continuous flow. May be that would give a break to the main concentrator, my mom recently finds it very hard to be without the oxygen even for few minutes.

Thank you ladies, I am so grateful to all your feedback.

[Sita]

Susan,

Thank you for your kind words. I appreciate your feedback and I was thinking the same. I am sending some prayers and positive thoughts your way too.

 

[Sita]

I have a question on oxygen concentrator. My mom is on oxygen 24/7 and is dependent on this machine now. My questions are:

• Does this like other appliances get overheated? Should we be turning it off for sometime?
• Do most of you have a back up generator in the house in case of power failure?
• My mom’s POC hardly helps. Are all POCs on pulse setting?
• Are there any other helpful tips/tricks from other oxygen users?

[Sita]

Thank you all for your responses. I understand your shock. My mother is set up a bit differently than most people who live here in America. My mother lives with our family in the same house. I am her caregiver. After my dad passed away, she moved in with us. I take care of all her needs and she doesn’t want any responsibility. I take her to the appointments and I keep in touch with the physicians. The term hospice is not used in my birth country- India. My mom speaks and understands English but she will not understand the medical terms used in this country. Hence she asks me to talk to the doctors. It is not easy for me and I will not decide anything without her consent.

This is why I love this forum as I can read all your opinions and make sense with it. Thank you for sharing your thoughts. I have not reached any conclusions yet. My mom is doing fine in her new normal. She is on oxygen 24/7, she stays in her room most of the day, climbs down the stairs end of the day and sits in the deck with me. I’ll take this for now. I’ll hold onto her as much as longer as I can.

 

[Sita]

Thank you Mark. It is devastating for sure. I will try to find out about the option of a social worker. Are they associated with hospitals or with doctor’s office too? I am sorry, I am quite ignorant in this whole process.