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Hi how are you I just read your post and prayers going up.
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Hi how are you I just read your post and prayers going up.
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My mum died....slowly...from a lung disease. I spent the last 3 years of her life as her caregiver 24/7. I didn't work for 3 years and only was able to work part time the prior 2 years. My mum wouldn't leave the house with her O2 due to pride so those last 3 years she only left the house by ambulance to go-to the hospital. She was miserable, depressed, terrified and bored out of her mind. Those factors created a very grumpy if not mean attitude. Everything was a battle....from PT to taking meds to breathing treatments and so on. She didn't want to do anything the doctors advised and there was no talking any sense into her. At first I would argue with her and try to force what I thought was best....after all I was only trying to make her do what the doctors told her to do. But I realized that SHE was the one with the disease and she should be treated with dignity and respect....once I decided to allow her to make all decisions regarding her care and treatment she began to open up and share her fears with me in a rational way. I also realized that the disease robbed her of her independence and my telling her what to do and nagging her to do her PT ect.... only stripped her of the last bit of control she had left. I concluded that since her disease was terminal she should be able to decide when she wanted to give up.....not me. I stopped pushing her and instead I allowed her to gripe and complain and cry as I listened and complained and cried along side her. My goal was to focus on her quality of life not the quantity.
But as a caregiver you need to take care of you first. You are no good to your loved one if you do not tend to your own needs. Contact a hospice and see if a support group for caregivers is available and please go. You will find an outlet there....a group of people who are dealing with the same issues you are and I cannot stress enough how helpful this will be to you. I didn't want to join a group...I went into it with a crappy attitude and the mindset that no one knows what I'm going through. But I was wrong ! I became a better caregiver and a happier person because of that group.
I had a place where nobody judged me because I was angry at my mum for not following doctors orders....a place that encouraged me to stay positive. A place I felt that my needs and wants were being taken care of.
Weather or not you chose not to go to a group like that my advise to you is: (1) live in the moment with your loved one. Not yesterday or tomorrow...just the moment....the present...the now. (2) Allow your loved one the dignity and respect to make any and all decisions regarding their treatment/care. (3) always remember that you cannot fathom the fear your loved one deals with every second of every day....that fear is what is making your loved one lash out and seem unreasonable.

Try to stay calm even when your loved one is yelling or ordering you to do something you know she can do....because the cold hard fact is she feels like she's dying all the time....and unfortunately she is right. Terminal is a death sentence and I cannot begin to imagine how might react if I were given such a diagnosis.
I wish you the best....
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I have had this Interstitial lung Disease diagnosis for seven years now. Take good care of your health,vitamins, eat properly, exercise as tolerated. I am taking the steroids and immune suppressants off and on for the last two years. I believe the disease is progressing quickly now. Life is becoming a challenge. Live every day as if it was your last,in seven years you will have lived life more than most. And you may find in a year down the road a cure.
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Sounds so much like my sister
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Hi... discovered a device called SoeMac which has excellent testimonies of helping people with severe COPD, asthma, fibromyalgia and other conditions... It greatly enhances the capacity of the body to use oxygen. In case of interest, just google it. Many other supplements that are useful to detox and clean the lungs are available and useful (searchAmazon or any herbal pharmacy). Particularly, marine phytoplankton has helped various people dealing with copd, mesothelioma, lung cancer and other severe diseases. Yeah, and never forget praying for the dear ones... all healing is in our Father's hands anyway.

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My mom was hospitalized on jan 7, 2018 with shortness of breath....thought to be pneumonia and bronchitis. She was on several antibiotics and steroids and oxygen with no improvements. She was transferred to 2 different hospitals, had a bronchoscopy and biopsy more meds more oxygen. By the time she reached the 3rd hospital she required 15 L of oxygen at rest. Was put on a ventilator on jan 27 and passed on feb 9 with a diagnosis of ILD UIP. Such a terrible disease!
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I was diagnosed Oct 2016 with usual interstitial pneumonia I immediately searched the internet and was concerned with the study done in Spain ( search Catlin ) that the researcher's thought 50% of cases were associated with feathers I immediately disposed of my down pillows and converters. After having a lung biopsy in Dec 2016 I could not walk a quarter of a mile with or without oxygen, I purchased a portable unit and I am now up to 2.4 miles without oxygen but still carry my portable oxygen. I am now taking a clove a garlic a day, seems garlic has a natural ingredient to prevent pneumonia to help lungs. I have also had auto immune since I was 9 years old, I am 65 now. With auto immune you have to find out what your body is having a bad time with, it can be difficult because when you become inflamed it reacts to everything. I would say do not give up and push yourself to exercise and try to check for feathers, mold and fungus in your environment. I am also on prednisone.

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Thank you for sharing your story... I am sorry about u.... That is about what I am going through now.. It is a terrible, horrible thing to have to go through. God Bless you...I am 56 yrs. old....
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WHAT IS LIFE ILD
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END OF LIFE ILD WHICH SYMTOMS
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How r y doing
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My husband was suffering from shortness of breath, he walked to the ambulance and was taken to Adelaide, I arrived in the morning and he was put into a coma and on life support and not expected to survive the night. I spent 3 months with him while they tried various treatments. Went on life support many times. Day one they said its uncurbable and he wont survive, how long he had they didn't know.
All I can say its a cruel disease and watching my husband struggle day in and day out was very hard to watch. I became a widow at 59 years old.
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