Not sure how long i have left.

[tiredtoo]

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.

[Kajun Gal]

1. When my sister had breast cancer her son showed her how to do a website where she

could write her thoughts and encourage others. She is ok now so she sort of stopped blogging. But what a great thing to have online forever, for future generations to see.

[tiredtoo]

2. Thanks

I have a blog which i haven't posted on since my wife died. Do not want to post there at this time as my children all get updates when i post there and i haven't told them my actual condition yet. This site is where i thought i could get anonymity while sharing.

[irisblue]

6. You can

I'm glad you're using the journal function, and I feel honored you're talking with us.

[Kajun Gal]

7. Prayers for you. You are anonymous here! God bless you always.

[Dem_in_Nebr.]

28. My Brother used a website called CaringBridge

It's a pretty decent website. It's not a pay site but they accept donations.. It allowed him to update folks on his condition. But since you already have a blog I can see the semse in using that.

[woodsprite]

66. Please encourage her to post an update, even if it's a yearly check-in.

It means a lot to people who are looking for information on particular types of cancers, long range possibilities, etc. I know that when I found the stories with followups online when I was searching (endometrial cancer), it made me feel more positive.

Blogs do help. They help the individual (if they like to write and share), and they help other people change their outlook, make plans, see something beyond the diagnosis and drs. office.

[pnwmom]

3. If he's the only one who needs special help -- and it sounds like he is --

then I would do what I could for him. What's going to happen to him without you, if he can't live with anyone else in the family?

[rurallib]

4. Please do keep us informed

Thank you so much for sharing your life with us.

My very best wishes for a good outcome.
I would be a lousy source for any advice, though.

[Hoyt]

5. So sorry you are in this situation, but admire heck out of how you seem to have sorted it out

and are doing your best for your family.

I'm sure there are times when you are not quite as calm as now. I, and I'm sure others, would like to see updates when you feel like it.

I'm getting on up there too, and think about these things a lot more. I'm not sure how I will respond. Take care.

[Frustratedlady]

8. Feel free to vent all you want on DU. We are good "listeners" and often have advice you can

actually use. <grin>

You have quite a load to bear. Just having the responsibility of the grandchild is enough for a person your age, but I hope he is a help and not too much of a load. I just had a great-grandchild born with autism (1 year old by now) but I don't know that much about it yet. Will the boy be able to live by himself eventually? If the 5 older children are set in their lives, I would consider a trust fund for him.

Don't be hard on yourself. I'm sorry you lost your wife, as that would ease the situation if she were still around.

Good luck and keep in touch.

[GeorgeGist]

9. Sounds like you are holding up well, in a very trying situation.

I would seek help in doing right by your grandson. He probably needs someone to turn to when you're gone. A cousin or sibling perhaps?

[0rganism]

10. you might also want to check in with the Chronic Health Condition subforum if you haven't already

https://www.democraticunderground.com/?com=forum&id=1147

[scheming daemons]

11. Best wishes. Hang in there.

[PA Democrat]

12. Hugs to you tiredtoo.

Have you ever reached out to a local Autism Society Chapter? They may be able to help you find some support services for your grandson (and for you). Services vary greatly from state to state, but I have found that other parents are great sources of information and assistance.

I'm so sorry that you have the worry about your grandson's future in addition to your own health problems.

[magicarpet]

13. Hello, thanks for sharing your personal situation here.

It seems you might want to contact providers for social welfare resources available for your grandson. Living arrangements if needed, maybe group housing, maybe an advocate, maybe disability income, maybe a program such as Goodwill employment and social worker assigned to offer guidance.

You might want to introduce and walk him through any changes before hand because it seems he might not respond too well to rapid change or quick alternate arrangements. Not springing rapid change upon him might produce the most favorable result, - rather, advance planning and slow walking change might bring the best reaction/result.

It seems if you are unable or not around there are few provisions to attend to his immediate daily needs - so you might explore what is available so his long-term daily/monthly/yearly welfare are provided for because absent your guardianship not many others are eager to oversee that his long-term needs are attended to.

Good luck in piecing together the puzzle to be sure his needs are provided for. Periodically keep us posted as to how the battle goes. Your are good person to watch out for his long-term interests and formulate plans so these issues are attended to even if you are not around.

[Rainngirl]

14. Bless you.

There is a website called Caring Bridge. It's a place to write what you're going through. You can invite people to view it or not. My friend is being treated for breast cancer right now and puts all her thoughts there. I can't go there yet, because I think I'm still in denial about the whole thing. The best of luck to you. xoxo

[LiberalArkie]

15. Might I suggest the aspies at reddit

https://www.reddit.com/r/aspergers/

Us strange people tend to congregate there.

[tiredtoo]

36. Thanks, just sent link to grandson

He would be mad as hell if he knew i was posting this here.

[LiberalArkie]

43. I think I may be the oldest aspie on it at 70 years old and really acting and feeling like my 30's

He will mainly find that he is not the only one having the social problems. Not the only one that is a klutz. Not the only one who bangs into door frames and people in a crowd when his thoughts are somewhere else. A lot of parents get in there to ask how to handle a child. Everyone is there for everyone else. All of us will have a problem that we think are the only one with it. We post DAE (does anyone ever) do this, and 15 or 20 people jump in and say all the time.

[Lonestarblue]

16. Thanks for sharing, you sound well organized.

As others have mentioned, there are reaources that may help with your autistic grandson. I have a friend with an autistic son who was helped greatly with special counseling while in school. He loves computer games and has taken some online courses in programming. I don’t know that he will ever hold a job in the computer industry but they hope so. Having that interest means that he has a focus for his attention. Perhaps your grandson has just such an interest that can be developed. I’m wishing all the best for you.

[onethatcares]

17. best of everything to you but

don't read the story about the Nobel Prize winner on this forum.

It only served to cement my belief that the first thing the doctors do is put you on the table and extract your wallet.

I was caregiver for my wife for two years as we fought a cancer diagnosis, thankfully she's ok now but I have nothing left to go through it again.

Peace to you.

[samplegirl]

18. I just read online today that a

woman had the same condition as you and had a lung transplant from a donor. Not sure if that’s a possibility. WiYou soynd like a wonderful Dad and granfather.

[Soph0571]

19. All he very best with your health issues, however...

....Not sure if I am being harsh, but obviously your grandson is a serious concern, maybe you should consider leaving your legacy to his care? As you have suggested he is not safe in his family home, funding his care - maybe an adult half way house for adults with learning difficulties could be a way forward.

[GeoWilliam750]

20. Hoping that your condition is mild

And that you have many, many more days to make the world a better place.

Also that your grandson is able to understand that he is a truly wonderful person - it may take some more work, but there is nearly always a way to win.

[malaise]

21. Wow y're such a thoughtful person

[eleny]

22. I'm wishing you all good things always

[Fla Dem]

23. Share your thoughts as often as you feel the need.

It sounds like you are doing everything you can to make sure when you leave this earthly life, all will be in order. Some don't have the chance to do that, so that in itself is a blessing. We're here for you.

[calimary]

24. Thanks so much for sharing these thoughts, tiredtoo.

I'm with the folks here who recommend you use a majority of your assets mainly to help your grandson, particularly if your other kids have financial means of their own.

Long after you've made the jump to lightspeed, he'll still need care. It needs to be secured for him.

Please keep us updated on how you're doing, if you can. 'Cause otherwise, we're gonna worry.

[chia]

25. "I have written a personal letter to each, sharing my thoughts and memories with them..."

I wish my mom or dad would've done that.


Wishing you peace as you go forward. Much love.

[SoCalDem]

45. That's what I plan to do too, but

I may guilt trip them a bit..

Our sons are typical younger folks who think everyone should text everything..but we enjoy talking to them.

I plan to tell them that there was never a day I would not have loved to hear their voice.. It's just an issue with me

[Ftrump]

26. Clinical trials

Have you discussed with your doctor the possibility of enrolling in clinical trials. There are several new drug candidates in various phases of clinical trials, which have shown promise (better efficacy, stabilization of lung function, and fewer side effects then current therapies) for the treatment of pulmonary fibrosis.

One of these, PBI-4050, is currently in or will soon enter Phase III clinical trials - if you area candidate, you may benefit

http://www.rtmagazine.com/2018/06/antifibrotic-drug-pbi-4050-lung-function-patients-idiopathic-pulmonary-fibrosis/

https://www.mdmag.com/post-conference-perspectives/ats-2018-perspectives/pbi4050-demonstrates-promising-efficacy-results-for-ipf-treatment

https://www.raredr.com/news/pbi4050-receives-rare-pediatric-disease-designation-treatment-alstrom-syndrome

[tiredtoo]

33. Thank you for the links will bring up with doctor EOM

[iluvtennis]

27. Blessings to you. The 20 year old grandson cares for you,

...at 20, he just doesn’t know how to say it.

Sending my positive karma.

[delisen]

29. I hope you will keep posting, tiredtoo.

78 is young and I am hoping you have some good time still to live. I suspect that your grandson will grieve and that he may actually be scared of losing you.

If you are able to make some special arrangements for him it might be a good thing Without knowing the specifics of your situation, and what may be available to you I would suggest that you use the professionals who will be available to you to help you think about what you want and how to go about living during this phase of your life; and how to best make plans for your grandson-if you want to.

The fact that you have been able to make his life better is no small accomplishment. I am fairly sure from my own life experiences that his time with you is helping him with a sense of self-worth, even though it may not be apparent until later.

[blm]

30. It's a tough one. I thought I had it 8yrs ago and planned my farewell

tour. It made me pretty accepting about my eventual fate. My heart is with you at this time. DU is with you.

[Ilsa]

31. Hugs to you and your family.

I hope you get good news in December.

[Jane Austin]

32. Bless you and yours.

May the docs be so wrong about your condition.

Meanwhile, you are a strong man.

[NewEnglandAutumn]

34. I can say

He will grieve. When my oldest son passed away his brother, who is on the spectrum, most defiantly grieve. Just not in ways others do. He was overwhelmed by people at the funeral (hugs etc.) and I have not seen him cry. He does however talk about his brother. At first he 'mocked' him. He would say that we should have asked everyone who came to the funeral to wear shorts over their pants as CJ did in high school. He would tell people his brother died of old age because he was bald (shaved his head), had a pin in his hip and died in his sleep.
I could not bring myself to scatter his ashes so about 2 weeks after the funeral. My son set up some action figures in front of his ashes as a mock honor guard. Then later he changed it by adding and removing things a bobble head Jesus, put a map of middle earth over what is now called "The Shrine" and put out coffee beans as an 'offering'. We now decorate The Shrine for Christmas. For many. people it seems weird but for us it is a way to remember CJ without making it a big deal because we don't make it huge thing or cry buckets of tears. But I assure you he DOES grieve and we stumbled on a way to help him do so; by treating his brother with our own odd mixture of love and teasing.

[TNNurse]

35. I hope you are able to make a plan for your grandson.

Sounds like the rest of them can take care of themselves. You will face your future and your own situation with more peace if you know he will have what he needs.

Please know you will be treated with respect and concern on here.

[cate94]

37. Maybe you could do a trust for your grandson.

It might be a way to help him move forward, without expecting him to be able to manage money himself. I would not have the guardian be his parent, however, maybe an aunt or uncle would make sure it is administered properly. Hugs to you. It is a tough road.

[tiredtoo]

38. Thank you all for the replies

Some of the things mentioned here have already been done, others are now in my plans. I just want to say how much I appreciate your support. As time goes by i should be better able to more explicitly share my reasons for posting here. But the primary reason is wanting to talk to someone about it without having people feel sorry for me. If that makes any sense.
Thanks again, you folks are great !

[LakeSuperiorView]

39. We share the same birthday. Not year, but day.

I am named the same as my dad. His only brother had one middle name, but we have two. I missed my chance to ask my Grandmother why. I did ask his 10 year older brother and he did not know why my dad got two middle names. With each generation, stories get lost. I'm in my 50's and it seems like my generation and beyond don't care about heritage, heirlooms and such.

I have spent a good deal of time researching family history and hope to pass on the info to an interest niece, nephew or cousin. Of the current ones old enough, none seem to be interested. At least I'll document what I can so someone looking can find it. I've spent the last couple weeks scanning slides from my parents, aunt and uncle and I've got more from my grandparents yet to do. The ones I've scanned of my grandparents helped me decipher who is who in some pictures I found online of my paternal greatgrandparent's family taken in about 1910 and 1924.

A long way of saying that writing down family stories can be valuable if any of your children get the urge to do the family tree.

Well wishes from another Christmas baby.

[kooth]

40. Hang in there ...

You have many friends here! Please vent as long as you need. I share your wife's birthday (March Forth into Battle - the only date that is a military command!) - corny I know.

My wife and I wish you the best! Keep us in touch!

[Danang1968]

41. Pulmonary Fibrosis (pf)

I was diagnosed with pf about 2 1/2 years ago because of scarring on my lungs. Forget about statistics and mortality rates. Everyone is different with this terrible disease. You could have a good quality of life for years.

In my case my scarring has not progressed at all since I was diagnosed. I rode my stationary bike for an hour today and my oxigen level was 98. Thank God. Other people decline rapidly. There is no predicting pf.

Stay as active as possible and do cardio and strength training while keeping your oxygen level at least above 90. Google Bill Vick from Dallas who is a long time pf survivor and has support groups.
Also sign up at Inspire.com. It has a community of people with pf and you can get great suport, ideas, and info on pf not available anywhere else. One of the first things they will tell you is to find a pf center of excellence and get a second opinion.

I hope this helps and God bless.

[tiredtoo]

42. i have copd

have been on oxygen for years. I cannot walk to bathroom without my oxygen level dropping below 90. To mailbox out front and back it will drop under 80. Currently sitting in chair with O2 set at 3.5 my oxygen is at 96. but just a walk to bathroom will drop immediately to 80 something.
Thank you for the info.

[spanone]

44. ...

[Roland99]

46. All the best of my thoughts for you.

You have a lot of friends here.

[MoonRiver]

47. You can set up a trust for your grandson.

I'm a retired school psychologist and have worked with many families who had this same concern. From what you've said, it doesn't seem that he needs a group home or sheltered workshop type of arrangement. However, a little income from you would help him out, especially if it were doled out on a periodic basis. He could also apply for disability. That would bring in some more money. Has he acquired any college education or job training? If not, encouraging him to do so might be helpful.

You are wonderful to care so much about him and the rest of your family! Wishing you the very best!

[SayitAintSo]

48. Set up a Special Needs Trust for your autistic grandson

The Special Needs Trust would contain his inherited assets and would not be considered in the event if he needs to apply for government assistance. It would also protect his inherited assets from ne'er-do-wells . This is what I understand from my experience... I set one up for my little brother some time ago. Laws may be different in your state you will need an estate attorney to help you set the trust up appropriately. Best of luck and peace be with you.

[mountain grammy]

49. Thanks for this

Reminds me of all the loose ends I need to tie up.. I admire your attention to the people in your life. Please continue to keep us updated and I’m hoping for the best for you.

[tiredtoo]

50. A couple of clarifications

First, My concern for my grandson is not a financial concern. His parents have the wherewithal to provide for him adequately. My concern is for his mental condition. Methinks he can be more comfortable in life given proper care and teaching.
2nd, i have updated this post under the title Day 2 and posted it here as well as placing it in my journal. Not sure if that is the best way to do so but?

[Pinkflamingo]

61. This I know: Any living arrangement the family as a unit can agree on, will be the best,

most carefully crafted solution. If you can meet with the family (away from his ears) and weigh the possibilities, perhaps together a solution or a plan could be crafted. I went through something similar and a social worker recommended this option.

I understand his irritation with his parents. The issue is, we love our kids more than they love us! It will always be this way.

If an aunt and uncle could plan to fulfill the role you have with him, that might work well, provided they are willing, and get a good heads up on the way he likes things to be. These types of issues could be discussed ahead of time and then of course eventually with him. His input matters too.

I remember an NPR podcast pointed to a place in Sweden where these adult kids are basically exchanged with other families. The program works well. I’ll see if I can find it if you’re interested.

New research has pointed to the autism gene being somehow linked to the schizophrenia and bipolar genes. It’s important that he not be pushed over the edge. He should have the dignity he deserves and a say in how things go.

Let me apologize if I’ve said anything to insult you or anyone. I’m just speaking from my own experience. I don’t really know your particular situation.

You seem to be handling things very well. I wish you well in this journey sir.

[TNLib]

51. I'm using Facebook to let friends and Family know about my condition

I was recently diagnosed with Stage 4 Ovarian Cancer. Statistically speaking I have a 20% five year survival rate but I think those statistics are at least 5 years old and not very helpful since new Parp drugs have come along in the last couple of years.

I would get a prognosis and treatment plan from your medical professional. Also look into trials for your medical condition sometimes new drugs can prolong life expectancy.

Maybe find an online support group of people with your specific medical condition and ask them questions about treatment, and how to deal with symptoms from treatment and when they were diagnosed. I found this to be extremely helpful and hopeful, especially hearing from survivors outside of 5 years.

I got my will and my husbands's, Power of attorney, medical directive and affairs in order. Including making sure my daughter is taking care of in case something happens. This gave me some piece of mind.

Organize your household and life to reduce stress and focus on your health. Allow trusted friends and family to help out as much as they can. I'm currently working on this but haven't quite gotten there.

As for your grandchild I don't know maybe you could make some tentative arrangements just in case, so you and he won't worry so much. I think my husband might be on the spectrum he usually doesn't show much emotion but when he worries it's usually physical signs of anxiety like dizziness, sweating and gastrointestinal issues.

[lunasun]

52. Is ther a possibility for independent living you see for his future? Can you help transition ?

MAy be better than his home situation and he is 20 so something must be done eventually I assume but also assume he doesn't like groups and your place is a welcome haven
Take care

[Maraya1969]

53. Sending you light and love.......

[disillusioned73]

54. I am sorry to hear about your prognosis..

My mother was diagnosed with PF over 12 years ago (approximately), she was diagnosed in her early sixties and we believe it was due to her years on seamstress work in various manufacturing environments.. don't allow them to bring you down with any time frame talk.. my mother has fought, she is essentially down to one lung but has been able to live through it and now she is my fathers daily primary care giver - hard to believe since my father seemed so healthy when she fell ill to this.. Keep fighting, live through it and spend your time doing what you love with whom you love.. peace to you

[DesertRat]

55. I'm thinking of you

[lillypaddle]

56. Holding you in my thoughts.

How unbelievably hard it must be for you.

[renate]

57. I'd suggest talking to a lawyer

For all kinds of reasons.

If this grandson gets something the other grandkids don’t, there could be hurt feelings and resentment towards either you or him. That would be a sad legacy.

But if a lawyer helps you set things up so that the extra money were used to pay for classes, or learning life skills, or whatever, that might help.

Also, you wouldn’t want to leave him with too many assets that might disqualify him from getting assistance from the government if he wanted to live in a group home with supervision or anything like that.

Good luck with your health

[Grasswire2]

59. that's a good point

And I wonder if the grandson needs a guardian to protect him after the OP is gone.

[LAS14]

58. My sympathies. And my admiration for your clear thinking. Please do post. nt

[mahatmakanejeeves]

60. My father had interstitial pulmonary fibrosis.

He died of it, in 1993, at age 74. At the time, it was incurable.

He didn't last any two years.

[tiredtoo]

63. When i first heard the diagnosis and googled it

I was hopeful to live to the mid-terms. Looks like i am going to make it. Now for the general. I really want to see trump get his ass handed to him on a platter.
Hope no one minds my occasional sashay into politics, my avocation at this time.

[HelenWheels]

62. I have two grandchildren on the autism sprectrum

One, John, is doing well the other, Thomas is not. They both live at home Tom recently returning home. They are in their mid to late 20's. John is attending school and Tom has recently found part-time employment. John is very easy to get along with Tom not so much.


I have big concerns for their futures.

[smirkymonkey]

64. Thank you for your thoughtful post.

I wish you and your grandson all the best.

[Bibliovore]

65. First off, congratulations

It sounds like you've had a pretty good life so far and have done well by yourself and your family. I know that doesn't make this diagnosis any less scary, but kudos to you for everything thus far, including on how you seem to be handling this.

December's a long time to wait for a more-specific prognosis and treatment plan, or to look into the possibilities of clinical trials as someone else suggested. If you haven't yet, you might talk with your regular doctor as soon as feasible to get some pre-pulmonlogist information and answers, and/or ask the pulmonologist's office if they have a waiting list in case an appointment is available sooner (say, if someone scheduled for tomorrow cancels and creates an opening). And if you may be eligible for any clinical trials -- either in your own town or in any you'd be comfortable traveling to -- those trial coordinators might want to see you themselves ASAP for assessment.

Other people have made really good suggestions about autism-specific organizations and support groups, and about trusts (though it sounds like that's not an issue for you). If your grandson will need to live with someone else eventually, it might be easier for him if you start looking into that sooner rather than later, together, so he can get your support for his own feelings and preferences and have some time to get used to the idea. It'd be great if you could meet and get to know his eventual new support, and share your concerns and get their views.

I understand that you may want prognosis specifics before you tell your family, and I don't know the nature of your family relationships or communication, but they might rather know earlier than later. It can be hard to find out that significant news was withheld for a while, and the sooner they know the sooner they can start working through their own thoughts and feelings and plans. Might any of your other family members have their own insights and assistance to offer for your grandson?

If you haven't been to see a counselor/therapist/psychologist, that might be helpful, too. A good one will have ideas on what you could do to help your grandson work on a positive attitude, and will also know (or have ready access to) exactly what services and help your local area has available for people on the autism spectrum. If your grandson doesn't already see a counselor himself, that, too, could help; having an extant relationship with one might make it easier for him to deal with grief and loss and change whenever that time comes.

One affairs-in-order thing that sometimes gets overlooked is having all necessary information organized in one place for whenever family members may need it. My grandparents kept what they called their "black book", a black notebook binder, by their desk at home; it had all details and numbers for their doctors, insurance (health, life, disability, home, car, etc.), my grandfather's military service and benefits, bank and investment accounts, billing/charge accounts, funeral service information, lawyer, etc. It was invaluable for each of their final illnesses and eventual deaths, and prevented a lot of added stress in a already-stressful times.

May you have many more years of comfortable and happy living, and may your grandson and all you care about thrive.

[LoisB]

67. What a wonderful man you are.