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tiredtoo

(2,949 posts)
Thu Oct 4, 2018, 04:14 PM Oct 2018

Not sure how long i have left. [View all]

Last spring i was diagnosed with Pulmonary fibrosis. Initial google search said 2 years, next search a few days ago said 3 to 5 years.
I am scheduled to get another X-ray in December and then an appointment at Pulmonologist where i assume he will give me a more accurate prognosis.
Posting this here because i may need some advice etc. NOT looking for sympathy! May have some questions and seeking answers.
Background information.
December 22 I will turn 78 years old. My wife of 56 years died March 4 2016, her 75th birthday. We had 5 children and all are doing well. 4 girls and 1 boy. Have 8 grandchildren and 5 great children.
Other than my son being a republican everything is super with my heirs.
I believe all financial items are in line. Small amount of assets are all joint with children and set up for equal distribution to the 5 children. I have written a personal letter to each, sharing my thoughts and memories with them, will most likely add to these letters as time goes on.
I do have a 20 year old grandson living with me who is on the autism spectrum. A little over a year ago the court determined he cannot live with his parents and brothers. The environment creates havoc with his life. Since moving in with me he has calmed down and now spends weekends with his family. Frequently when he returns it takes a day or so to get him calmed down. He is a good person but has been raised to believe he is a loser and can do nothing. Sad story for sure, but I will do whatever i can to help him have a decent life. If only i knew how to get him a more positive attitude I would feel like success has been achieved.
He is a concern for me, not sure if i should make any special arrangements for him or just let him be another grieving grandchild.(He has told me he does not grieve for anyone and does not expect to ever do so. Hard ass? but i just fed the dog and had to sit in a chair for a few minutes to catch my breath, he asked me if I was alright.
Thinking about posting occasional updates on my thoughts, feelings and condition .
Nuff for now. If this post is not appropriate or not in the appropriate forum, removal will not offend me.

67 replies = new reply since forum marked as read
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Not sure how long i have left. [View all] tiredtoo Oct 2018 OP
When my sister had breast cancer her son showed her how to do a website where she Kajun Gal Oct 2018 #1
Thanks tiredtoo Oct 2018 #2
You can irisblue Oct 2018 #6
Prayers for you. You are anonymous here! God bless you always. Kajun Gal Oct 2018 #7
My Brother used a website called CaringBridge Dem_in_Nebr. Oct 2018 #28
Please encourage her to post an update, even if it's a yearly check-in. woodsprite Oct 2018 #66
If he's the only one who needs special help -- and it sounds like he is -- pnwmom Oct 2018 #3
Please do keep us informed rurallib Oct 2018 #4
So sorry you are in this situation, but admire heck out of how you seem to have sorted it out Hoyt Oct 2018 #5
Feel free to vent all you want on DU. We are good "listeners" and often have advice you can Frustratedlady Oct 2018 #8
Sounds like you are holding up well, in a very trying situation. GeorgeGist Oct 2018 #9
you might also want to check in with the Chronic Health Condition subforum if you haven't already 0rganism Oct 2018 #10
Best wishes. Hang in there. scheming daemons Oct 2018 #11
Hugs to you tiredtoo. PA Democrat Oct 2018 #12
Hello, thanks for sharing your personal situation here. magicarpet Oct 2018 #13
Bless you. Rainngirl Oct 2018 #14
Might I suggest the aspies at reddit LiberalArkie Oct 2018 #15
Thanks, just sent link to grandson tiredtoo Oct 2018 #36
I think I may be the oldest aspie on it at 70 years old and really acting and feeling like my 30's LiberalArkie Oct 2018 #43
Thanks for sharing, you sound well organized. Lonestarblue Oct 2018 #16
best of everything to you but onethatcares Oct 2018 #17
I just read online today that a samplegirl Oct 2018 #18
All he very best with your health issues, however... Soph0571 Oct 2018 #19
Hoping that your condition is mild GeoWilliam750 Oct 2018 #20
Wow y're such a thoughtful person malaise Oct 2018 #21
I'm wishing you all good things always eleny Oct 2018 #22
Share your thoughts as often as you feel the need. Fla Dem Oct 2018 #23
Thanks so much for sharing these thoughts, tiredtoo. calimary Oct 2018 #24
"I have written a personal letter to each, sharing my thoughts and memories with them..." chia Oct 2018 #25
That's what I plan to do too, but SoCalDem Oct 2018 #45
Clinical trials Ftrump Oct 2018 #26
Thank you for the links will bring up with doctor EOM tiredtoo Oct 2018 #33
Blessings to you. The 20 year old grandson cares for you, iluvtennis Oct 2018 #27
I hope you will keep posting, tiredtoo. delisen Oct 2018 #29
It's a tough one. I thought I had it 8yrs ago and planned my farewell blm Oct 2018 #30
Hugs to you and your family. Ilsa Oct 2018 #31
Bless you and yours. Jane Austin Oct 2018 #32
I can say NewEnglandAutumn Oct 2018 #34
I hope you are able to make a plan for your grandson. TNNurse Oct 2018 #35
Maybe you could do a trust for your grandson. cate94 Oct 2018 #37
Thank you all for the replies tiredtoo Oct 2018 #38
We share the same birthday. Not year, but day. LakeSuperiorView Oct 2018 #39
Hang in there ... kooth Oct 2018 #40
Pulmonary Fibrosis (pf) Danang1968 Oct 2018 #41
i have copd tiredtoo Oct 2018 #42
... spanone Oct 2018 #44
All the best of my thoughts for you. Roland99 Oct 2018 #46
You can set up a trust for your grandson. MoonRiver Oct 2018 #47
Set up a Special Needs Trust for your autistic grandson SayitAintSo Oct 2018 #48
Thanks for this mountain grammy Oct 2018 #49
A couple of clarifications tiredtoo Oct 2018 #50
This I know: Any living arrangement the family as a unit can agree on, will be the best, Pinkflamingo Oct 2018 #61
I'm using Facebook to let friends and Family know about my condition TNLib Oct 2018 #51
Is ther a possibility for independent living you see for his future? Can you help transition ? lunasun Oct 2018 #52
Sending you light and love....... Maraya1969 Oct 2018 #53
I am sorry to hear about your prognosis.. disillusioned73 Oct 2018 #54
I'm thinking of you DesertRat Oct 2018 #55
Holding you in my thoughts. lillypaddle Oct 2018 #56
I'd suggest talking to a lawyer renate Oct 2018 #57
that's a good point Grasswire2 Oct 2018 #59
My sympathies. And my admiration for your clear thinking. Please do post. nt LAS14 Oct 2018 #58
My father had interstitial pulmonary fibrosis. mahatmakanejeeves Oct 2018 #60
When i first heard the diagnosis and googled it tiredtoo Oct 2018 #63
I have two grandchildren on the autism sprectrum HelenWheels Oct 2018 #62
Thank you for your thoughtful post. smirkymonkey Oct 2018 #64
First off, congratulations Bibliovore Oct 2018 #65
What a wonderful man you are. LoisB Oct 2018 #67
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