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My mom was diagnosed with pulmonary fibrosis last week, has been put on oxygen. We are awaiting results from an echocardiogram to see about possible pulmonary hypertension. She has been my dad's primary caregiver and we do have in home health everyday from 9am-10pm. Mom is very "vigilant" and "instructive" with the caregivers and very particular, often micromanaging. I can understand how hard this all is for her, but she won't take a break. She insists on keeping my dad at home and I am trying to comply with what she decides on for their lives together. I, along with her friends have a meal train going while she adjusts to her "newest reality". I have been taking care of the bills, appointments, etc. for a long while now, but just wonder if she really can sustain this lifestyle. I am wondering also, what the prognosis is for her diagnosis and what quality of life can she expect for the coming years. Anyone have experience with pulmonary fibrosis? She is currently on oxygen level 3when moving around 2 while seated or sleeping.
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Honestly, that's a pretty good set up with 13 hours of in-home caregivers per day. Just let your mother be herself, as it seems like her "in-charge" personality will not change. Probably as things progress she will need to slow down and do less micro-managing of the caregivers, and simply let them do their jobs while she gradually takes it easier.

When the meal train ends, don't jump in to start providing meals for them. Sign them up for Meals on Wheels, and set up a grocery delivery account. Do the research on local facilities with both Assisted Living and Memory Care. Hopefully if the ability to stay in their home becomes too much, you can gently guide your mother toward this path in a way that makes it seem like it was her idea.
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Reply to MG8522
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https://www.google.com/search?q=pulmonary+fibrosis&oq=pulmonary+fibrosis&gs_lcrp=EgZjaHJvbWUyDAgAEEUYORixAxiABDIKCAEQABixAxiABDIHCAIQABiABDIKCAMQABixAxiABDIKCAQQABixAxiABDIHCAUQABiABDIHCAYQABiABDIHCAcQABiABDIHCAgQABiABDIHCAkQABiABDIHCAoQABiABDIHCAsQABiABDIHCAwQABiABDIHCA0QABiABDIHCA4QABiABNIBCDI0NTVqMGo3qAIAsAIA&client=ms-android-samsung-rvo1&sourceid=chrome-mobile&ie=UTF-8#lfId=ChxjMe

This is a good article. From what I read, its going to be hard for Mom to care for Dad. Because this desease makes it hard for oxygen to get thru the body, I would say there may be some cognitive problems later on if not already. Both may need to be placed.
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Reply to JoAnn29
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As long as you and friends prop them up she will be OK for now maybe. You need to sit down with the friends and other family, but not mom and decide what the breaking point is that they both have to move to a care home.
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Reply to JustAnon
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I don't know about pulmonary fibrosis. I'm sorry for this latest diagnosis. I'm sure it's hard for your mother to accept this change in her health and it may take a while for her to see the reality of it.

You and friends are providing meals, and you have been paying bills, making appointments, and I'm sure much more. The question is How long can YOU sustain this lifestyle? You're parents are very lucky to have your help. When their needs become more than you can provide for, it's ok for you to say, "I can't do it anymore". Mom likes to manage. Let her make a plan for their care that doesn't include you. Make that your Plan B when you become overwhelmed.
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Reply to CaringWifeAZ
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