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Searching for a post about end of life
Hi, all. I am not sure if it is appropriate to introduce myself here, but I’ve been browsing your forums for a while and found lots of information that is helpful. Some I have passed on to my mother, who is the patient. I’m joining because I’m the one interested in online interaction, at least at this point.
We are not at this stage yet and in fact only starting to come to terms with the whole thing, but I came across a lovely post a while ago by a lady about her and her husband’s journey to the end of his life with PF. I wanted to go back and reread it and the comments, but cannot find it now. Not sure I get how the searching works yet.
If anyone can point me in the right direction, I would appreciate that. Blessings to all of you.
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7 Replies
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Hi Jacqui, welcome to the forums! I know it can be hard for some patients to want to get involved with community support like this–my mom was like that–while some others are all for diving in and getting involved in all aspects of this journey. As a fellow caregiver, I understand your want for connection, so feel free to reach out if you need a buddy.
As for the post you’re thinking of, the search bar at the top right of the page might help you find it if you type in some keywords (try typing without hitting enter and see the list that drops down as you go). You might also check in the “In loving memory” forum if the person’s spouse had passed.
Let me know if you need more help navigating the forum, but maybe we’ll get lucky and that person will see this and share a link to their post.
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Hi, Christie, and thank you for the welcome. I’ll try looking at the drop-down list (I remember quite a few phrases from the post, frustratingly). Now I know to bookmark discussions that I want to go back to!
The hard part with my mom is that I live in another country, so most of what I can do is communicate and support from afar. I’m sure many people here know that the amount of information can be overwhelming, especially with the “brain fog” that often seems to accompany this condition. My parents are doing great, but all us “kids” (40s) live far away so we worry about the many issues that can also accompany aging.
Thanks again,
Jacqui-
Hm, perhaps if you remember the phrasing, typing it into google with “pulmonaryfibrosisnews.com/forums” and “forums” as accompanying keywords would yield results? Worth a shot anyway.
I’m sure that whatever support you can offer your mom, near or far, is greatly appreciated. Just keep checking in with them to see how things are progressing and if you are able to take the time, be willing to jump in as a relief caregiver if/when your dad needs it. Sounds like you have a good family dynamic and siblings you can lean on. 🙂 When my mom was hospitalized she told me “this is an opportunity. lean on them.” ‘them’ meaning my partner and my friends, as I previously had trouble asking for help. Glad I listened to her.
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Thanks, Christie! Sorry I just saw your reply now.
I am blessed to have a flexible work situation and the means that I can travel to see my parents and help them when the need arises. At the moment, because my mom feels “okay,” they are getting ready to come visit us! Which is a long trip for them, but they’ve had to defer it since 2020 (because of the pandemic, not PF) and no one thinks it’s a good idea to defer it any longer. -
No worries! I am glad you will get to see your family soon. I know how horrible… stressful, scary, isolating, etc. it is to live abroad from your ailing parent during this time. Especially if she is on immune-suppressing therapies. Yes. I do know that very well and I am excited that you will finally be reunited!! Enjoy every second of their trip. Take lots of pictures, and enjoy each other 🙂
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Hi Jacqui,
This may be it: https://pulmonaryfibrosisnews.com/forums/forums/topic/wrestling-end-stage-pulmonary-fibrosis/
John R.
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Thank you both.
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