Jump to content
Forum Conduct & Guidelines Document ×

Weekends are still the worst...


MaryB

Recommended Posts

  • Members

widower2,

I keep saying I am only one person and I will do all I can for as long as I can. Thank you for the words of encouragement and there is no help from anyone because the only 2 people in my life now are still working and have their own things that they need to take care of.

  • Like 2
  • Hugs 1
Link to comment
Share on other sites

  • Members
16 minutes ago, John9 said:

Sadly that is a "fear" of many or most of the older couples, how do "I" go on after "you" die.

John9:  My husband and I did have a nest egg. A small one but nonetheless we did have one. And at the time we were laid off and had to sell our house, we were only 6-7 years away from paying off the mortgage. Well, it was my husband's house. Our plan was to stay in that house until we retired and needed to downsize or go into a nursing home. We would have had that asset to sell. But between 2 layoffs, having to pay for the VERY expensive COBRA health insurance, etc, etc...we pretty much lost it all. And we never quite financially recovered from all that. Use to make me mad when his father would moan and complain about his water bill...and yet he had NO mortgage and the luxury of living in the same house nearly 50 years. And he'd go out and buy himself new cars, has a membership to a country club, etc, etc..but while we were losing our house, he would complain about his damn water bill while also telling us all about the prime rib dinner he cooked for friends. He absolutely had no filter. And he certainly hasn't had to worry about surviving just on social security. Okay sorry, I went off on a rant...but it does anger me how some people can not only be so insensitive, but don't appreciate how fortunate they are.  

  • Like 3
  • Hugs 1
Link to comment
Share on other sites

  • Members
26 minutes ago, tnd said:

LMR:  Isn't that something? They (the social security admin) said we can only draw from one or the other. I don't understand that because BOTH of us worked and BOTH of us paid into the system. It's angering. 

Sadly it is probably an "old" rule that should be revisited, look at the death benefit $255 what does that pay for(?) but since Social Security is struggling I don't think the issues will be addressed in our lifetimes IF EVER. When I filed for widower benefits and they said I had to send in "our" original Marriage License to prove we were married because they weren't doing in person visits. I was afraid that it would be lost and I would lose that too, luckily they did send it back very quickly. These are things the other people don't understand that "we" may have to deal with on top of our grieving. Paperwork, phone calls, etc.

  • Like 1
Link to comment
Share on other sites

  • Members
1 minute ago, John9 said:

When I filed for widower benefits and they said I had to send in "our" original Marriage License to prove we were married because they weren't doing in person visits. I was afraid that it would be lost and I would lose that too, luckily they did send it back very quickly. These are things the other people don't understand that "we" may have to deal with on top of our grieving. Paperwork, phone calls, etc.

John9:  I had to send them our original Marriage License too. Kind of makes me nervous. As for that $255 one-time lump sum benefit, I don't know what that's suppose to help with. Groceries I suppose. Once I move in with my brother, I am sure my SIL will control the what/when of anything purchased. I will be at their mercy because I won't have my own money. If I get the $255 I will give it to them.  And I've got to show my appreciation and be grateful because it is either suck it up and move in with them or go to the streets or shelter. And that's when the anger comes over me...that I worked hard all my life only to end up poor, sick and having to live in somebody else's house who doesn't even appreciate what they've got. 

I wonder if I am going to be treated the way she treats her house. They've already pretty much ignored my grief. 

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

tnd,

I have sadly had to "deal" with many people who as I say "lost" their filter. My wife and I many years ago had to deal with COBRA and it was VERY expensive and when she died that is now where I receive my Insurance but because she was covered through her work I "only" have to pay the cost that her Employer was paying for "me" It is not cheap but I have no choice because I can't "afford" to not have it. All of this was definitely not something I was looking forward to and at the worst possible time too. My friend who died  had a stroke in 2009 and he was "waiting"  till he was 65 for Medicare and he had no Insurance so the risk isn't worth it. And this is all another part of the stress I go through.

  • Like 1
  • Sad 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

tnd,

2 minutes ago, tnd said:

I wonder if I am going to be treated the way she treats her house. They've already pretty much ignored my grief.

I can only "hope" that since they asked/invited you to live with them that maybe when you can actually explain to them just what you are going through that they will at least try to be more supportive in the grieving you are going through. I do agree that after all of the things "we" have gone through to feel how you feel and of course you don't want to be on the street or in a shelter, not under your control. But we really aren't in control are we.

  • Like 2
  • Sad 1
Link to comment
Share on other sites

  • Members
2 minutes ago, John9 said:

My wife and I many years ago had to deal with COBRA and it was VERY expensive and when she died that is now where I receive my Insurance but because she was covered through her work I "only" have to pay the cost that her Employer was paying for "me" It is not cheap but I have no choice because I can't "afford" to not have it.

John9:  I hear ya. Use to be that employer group insurance was actually affordable. But then things changed. It's gone downhill ever since. I am on 7 medications and need every one of them (I already tried to go without a few, was disastrous). I am going to have to somehow qualify for cheap insurance that either my SS benefits can afford (if I even get SS benefits) or that my brother can afford. Otherwise I have looked into a "free and cheap" county clinic in their area. The lady who emailed me an application was very nice but did mention that they are very limited when it comes to specialists and medications. I feel so screwed. I am at the lowest of low points. 

  • Like 1
  • Sad 1
  • Hugs 1
Link to comment
Share on other sites

  • Members
11 minutes ago, John9 said:

But we really aren't in control are we.

John9:  No, we most definitely are not in control. That's why it is so hard to be dealing with this mess. As if losing my husband wasn't bad enough. It's hard for me to even care about anything else now but no, my SIL and brother bark at me to take care of all this -pronto. I use to be the type that was neat and orderly and responsible. To have others now decide things is going to be hard. No fooling, shortly before my husband passed I asked myself "what if THESE are the good old days?" It's almost as if I sensed something. Didn't realize it was the nitemare I am living that I sensed. If I was 95 and had to go live with somebody I think I'd find it a little easier to accept but at 57, sheesh...what if I live to be 95? I hope not! 

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

tnd,

This is an issue that I call, "the people who make decisions don't understand how it affects others". We watched the premiums and co-pays and deductibles go through the roof and then to be told it is affordable. I am still lucky that I take no medications but MIL is diabetic with 2 types of insulin and the cost shot up this year as did her other drugs just not as much. I have seen and heard about the issues of the costs of drugs and how hard it is to receive treatment when "they" don't understand cost and resources and such.

Link to comment
Share on other sites

  • Members
3 minutes ago, John9 said:

I am still lucky that I take no medications but MIL is diabetic with 2 types of insulin and the cost shot up this year as did her other drugs

John9:  I don't know if there is a Walmart near you but you can get insulin there for $35 a vile. And without a prescription. And since this thread is titled "Weekends are still the worst", having to go to ANY store while grieving would/is hard. 

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members
2 minutes ago, tnd said:

John9:  No, we most definitely are not in control. That's why it is so hard to be dealing with this mess. As if losing my husband wasn't bad enough. It's hard for me to even care about anything else now but no, my SIL and brother bark at me to take care of all this -pronto. I use to be the type that was neat and orderly and responsible. To have others now decide things is going to be hard. No fooling, shortly before my husband passed I asked myself "what if THESE are the good old days?" It's almost as if I sensed something. Didn't realize it was the nitemare I am living that I sensed. If I was 95 and had to go live with somebody I think I'd find it a little easier to accept but at 57, sheesh...what if I live to be 95? I hope not! 

tnd,

I have always said "I seem to always be right about the wrong things" and then it seems only the "bad" things happen like I thought, not the good. I was in no way expecting the outcome that happened because it didn't seem like it was even possible, she wasn't that "sick" (as far as we knew). The comment about living to 95 is the type of fear she had, not being "healthy" and not being able to do the things she did. I suppose again that they just don't know how hard it is to deal with the things you need to deal with just to "move". I suppose that whether or not these are or are not "the good old days" will depend on how the future goes. I do feel that mine are definitely behind me because "NO DREAMS, NO HOPES AND NO DESIRES anymore so how can the future be better than the past for me.

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members
5 minutes ago, tnd said:

John9:  I don't know if there is a Walmart near you but you can get insulin there for $35 a vile. And without a prescription. And since this thread is titled "Weekends are still the worst", having to go to ANY store while grieving would/is hard. 

tnd,

I am not sure about the insulin, when she broke her hip and was in the hospital the Doctors took it upon themselves to "try" to fix her diabetes and switched her insulin and made a mess of things. So we have to stick with what has worked for the last many years and right now it still works. I had to force myself to go to Kroger today because I do have to feed her and I need "diapers"

  • Like 2
Link to comment
Share on other sites

  • Members
5 minutes ago, John9 said:

I suppose that whether or not these are or are not "the good old days" will depend on how the future goes. I do feel that mine are definitely behind me because "NO DREAMS, NO HOPES AND NO DESIRES anymore so how can the future be better than the past for me.

John9:  Exactly!  Funny, my husband and I could be just as happy with each of us doing our own thing but knowing that the other was just in the other room, or outside or reading instead of watching the movie somehow computed to "togetherness" in our minds. With his passing, so went the togetherness. I hate that.    

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Moderators
On 7/28/2021 at 4:14 PM, tnd said:

it does anger me how some people can not only be so insensitive, but don't appreciate how fortunate they are.

I know, right!  I have some relatives who also do well but have no clue how the rest of us live.  And it's not for lack of trying, I worked hard all my life and was careful with my $, but we all know life isn't fairly doled out!

When George died I got $140 from soc sec death benefit, it was hardly worth the 120 mile drive when the lady pronounced our marriage ended in death and made me cry all the way home.  No need for her to say that!  Wonder how she'll feel when she goes through it!

tnd, OR has "OR Health Plan" for indigent, perhaps there's something in the state you're going to?  Sometimes have to establish residency before qualifying (usually six months I think).

 

  • Sad 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

KayC,

27 minutes ago, KayC said:

When George died I got $140 from soc sec death benefit, it was hardly worth the 120 mile drive when the lady pronounced our marriage ended in death and made me cry all the way home.  No need for her to say that!  Wonder how she'll feel when she goes through it!

I am not sure why you only received $140, because I have dealt with SS since 1980's in the MANY deaths I have had to deal with and it was always $255 which is too low anyway let alone $140. The comment is "just" one of the STUPID non-thinking foot in the mouth things people say and are completely unaware of how it hurts. I have said before I am still married in my eyes basically because we were not divorced and we didn't choose to end the marriage and unless my wife TELLS me we aren't married anymore I am married and WILL and do wear my ring. The person who made the comment may not have a spouse or anyone or is one of the people who won't "care" if their spouse dies. Or won't be torn up about it like "we" are. And the fact that it still bothers you after all this time shows me that you were in love with George and still love him. Sadly though words can and do hurt and that is why it is good we have this site to vent and write about what bothers us.

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members
7 hours ago, KayC said:

When George died I got $140 from soc sec death benefit, it was hardly worth the 120 mile drive when the lady pronounced our marriage ended in death and made me cry all the way home.  No need for her to say that! 

KayC:  You're right, there was no reason for her to say that. There is absolutely no reason to pronounce such a thing. I bet she's one of those people that tell young widows/widowers "you're young, you'll find someone". 

The nurse on the phone with me who had taken a turn performing CPR on my husband was trying to get my permission for them to stop and she told me "M'am, I broke his sternum, I felt it crack".  I did not need to hear that. Now I can't get that picture out of my mind. 

  • Like 1
  • Sad 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

tnd,

I am sorry that you had that experience in what is the worst time and yes the pictures in the mind will beat you up. I know mine are. The "issues" I have experienced is SOME of the Healthcare workers (Doctors, Nurses, etc) do not have a good bedside manner, they don't have the sense God gave them. Of course the comment made to KayC shows it isn't limited to any one group. I have had a few bad statements also made to me and I think sometimes it is just an automatic reflex to "speak" without thinking who they are speaking to and what the "topic" is. Certain people who deal with "death" should know better but emotions and adrenaline probably take over and words come out without the thinking of how it effects the receiver. I am in no way defending the comments just in my mind trying to figure out HOW they could say it and that is what I came up with, maybe I'm wrong.

  • Like 3
  • Thanks 1
Link to comment
Share on other sites

  • Members
8 hours ago, KayC said:

tnd, OR has "OR Health Plan" for indigent, perhaps there's something in the state you're going to?  Sometimes have to establish residency before qualifying (usually six months I think).

 

KayC:  I've applied for Medicaid and their state uses plans offered through their state marketplace. And yes, I have to prove residency. 

I also contacted a clinic with the county called the "Free and Cheap" county clinic. They offer most of my medications for very cheap ($3-10) and doctor visits free or cheap ($0-35). The lady was very nice and will help me if I go that route but did say they are very limited when it comes to Specialists...like a pulmonologist or rheumatologist, which is what I need. But I might be able to see a good doctor for my primary care and then be referred out. And then there is the issue of my oxygen equipment...list goes on and on. I know it's not my fault that I have Sarcoidosis but still, I feel so humiliated and down for having to seek out "free or cheap" care now. I worked most my life beginning at the age of 12. I "put in" to the so-called system and now I am having to beg to be helped.

Remember the housing crisis/economic crash in '08? Yeah, like anyone could forget...well, a lot of people including my husband and I were laid off -twice. We never financially recovered from that. And guess what? I don't like to talk about this but I worked as an auditor. I cannot say for who. But I will say that I was one of a very small and special group that warned about the crisis coming and no one, not the "powers to be" did anything about it. And unfortunately, by the time I figured out why no one was doing anything about it, it was too late. You would not believe the corruption that goes on and why. The "system" has let a lot of people down...continues to do so. It's meant to. Corruption...

  • Like 2
  • Hugs 1
Link to comment
Share on other sites

  • Members
10 minutes ago, John9 said:

Certain people who deal with "death" should know better but emotions and adrenaline probably take over and words come out without the thinking of how it effects the receiver. I am in no way defending the comments just in my mind trying to figure out HOW they could say it and that is what I came up with, maybe I'm wrong.

John9:  I would agree but this nurse was a highly trained individual working in the ICU. I'm sure it wasn't her first rodeo. If I had been there in-person I most definitely would have said something out loud. Perhaps she was a burnout. Still doesn't remove the image from my mind.   

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members

tnd,

I do understand and I wasn't trying to defend her I was just saying what my brain came up with as it was processing comments made.

  • Like 2
  • Thanks 1
Link to comment
Share on other sites

  • Members
2 minutes ago, John9 said:

I was just saying what my brain came up with as it was processing comments made.

John9:  I don't know why I just thought of this but years ago I helped a man that was in a car accident. I witnessed the accident and got out of my car and ran through traffic to help him. While someone called 911 I walked him over to the curb to sit down. He had blood running out of his ear and mouth. When he looked at me and asked if he was bleeding (he was too afraid to feel his face) I told him that yes, he was bleeding a little bit but not much and not to worry, the ambulance was coming and that I'd stay with him. He somehow stayed calm and never reached to feel his face but I could see the fear in his eyes. I just hung on to him. The last thing he would have needed was to hear me or anyone say "Oh man! You got blood coming out everywhere!" Nurses and doctors are not perfect, they're human too. But using descriptive words like that nurse did with me was careless. If she's burnt out, she needs time off or to be reassigned. Sometimes I feel like calling and asking for her and then telling her this. 

  • Like 2
  • Hugs 2
Link to comment
Share on other sites

  • Members

tnd,

I don't know if I would have been able to stay calm but I guess you never know what you can or will do. I know that the Medical world in regards to Doctors and Nurses are overworked and stressed but yes "words" hurt and as I said it is at the worst time like in your situation. There is no good reason to be that descriptive in those situations as it does not help "you". I am not even sure she was fully aware that she did it that way but yes they are human and sadly make mistakes in care and in communication. When my MIL was in the Hospital with her broken hip and I was there to make sure she did her therapies to be able to come home, I told the staff she has dementia and is diabetic and MUST be fed by 7am so she can have her medications and pain pills because therapy started at 8:30am but I would get there and she would be in pain and not fed and it would mess everything up because the therapists have a schedule too. It was even posted on the "board" but nobody would read it, finally got it done but it was a pain having to constantly deal with all of the different people because the staff was never the same and the attitude was we don't do it that way.

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members
11 minutes ago, John9 said:

When my MIL was in the Hospital with her broken hip and I was there to make sure she did her therapies to be able to come home, I told the staff she has dementia and is diabetic and MUST be fed by 7am so she can have her medications and pain pills because therapy started at 8:30am but I would get there and she would be in pain and not fed

John9:  I went thru this with my husband. And I personally went thru it when I was a patient in the hospital. They run on their own schedule. They don't care about yours and what works for you, they go by their own. I know that these days nurses won't even fart without a doctor's order. My husband suffered because of it. Really suffered. He had terrible and infected bedsores because they weren't doing what they should have been doing and what they had told me they were doing. They lied. For the first time ever I heard him cry. The infected bed sores are mentioned on his death cert. I wish I could have found a way to have gotten him out of there. I'll be thinking of this not just over the upcoming weekend but for the rest of my life, every day, every weekend. 

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members

tnd,

I am so sorry that you have to rerun the memories that cause pain and suffering. The memories are what tears me up, the GOOD and the BAD and the last "vision" I have is her struggling to breathe with the oxygen mask on. I never got to hear her sweet voice say the final LOVE YOU I know she said it but I didn't hear her voice say it.

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Moderators
14 hours ago, tnd said:

I know it's not my fault that I have Sarcoidosis but still, I feel so humiliated and down for having to seek out "free or cheap" care now. I worked most my life beginning at the age of 12. I "put in" to the so-called system and now I am having to beg to be helped.

I totally understand.  When I googled Sarcoidosis, they made it sound temporary so maybe that's why you have to prove yours is more debilitating and permanent. 

The growths most commonly occur in the lungs, lymph nodes, eyes, and skin.
Symptoms vary, depending on the organs affected.
Sarcoidosis often goes away on its own. Minimal treatment is needed in most cases. For some, it may last for years and lead to organ damage.
 
I think this is why it's essential to get a full doctor's report, they don't want to ferret out information and since you're the only one with the vested interest in the outcome, the responsibility lays fully on you to prove it to them...just when you're least up to the task!  It's more than unfortunate how things occur so hard right after their death.  
  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Moderators
14 hours ago, tnd said:

But using descriptive words like that nurse did with me was careless

Yes, so wrong.  Professionals needs to act like they are!

  • Thanks 1
  • Hugs 1
Link to comment
Share on other sites

  • Moderators
22 hours ago, John9 said:

I am not sure why you only received $140

IDK, maybe I remember wrong, I tried to look back in my check registers but that is the ONLY one missing over the years!  Odd. 

  • Like 2
Link to comment
Share on other sites

  • Members
25 minutes ago, KayC said:

since you're the only one with the vested interest in the outcome, the responsibility lays fully on you to prove it to them...just when you're least up to the task! 

KayC,

This is a similar to a statement that i used to say to my friend, he would comment about "WHY" didn't anyone care about... and I said because it ONLY affects you and they don't understand and sadly I couldn't do anything except offer moral support because he WAS able to handle his own "affairs". I tried my best to help him as I have for everyone else who has asked me but in the long run it seems to "always" backfire and cause more work or issues for me. As for as the $140 ($255) and the check register doesn't it seem like no matter what you "need" is always missing, I had kept things for years and never needed it and when I need it I don't have it. Murphy's law at it's finest. And as I said even if you did receive the FULL $255 it isn't and wasn't enough for the loss of your LOVED one. As far as that goes you could have Life Insurance for all the money in the world and it isn't enough because you can't replace them, it would be less mental worrying but doesn't hurt less.

  • Like 2
  • Hugs 1
Link to comment
Share on other sites

  • Moderators

I always thought they gave it out to help pay for burial/cremation, ha, it doesn't in the least!  Why they've capped it and it's the same now as it was in 1981 I don't understand. https://www.ssa.gov/history/lumpsum.html  Do they think there's no inflation?

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

KayC,

It really doesn't cover anything except maybe flowers if that is what you want. I still think it is just something that isn't addressed but it isn't in the BUDGET either. We know it isn't a lot of money but if you ADD it up times anyone who qualifies it is  a lot of money for the Government. I understand that we are the "Government" in that it is tax dollars and how it is spent but like everything else it is supposed to be our responsibility to "make sure" we plan for the future blah blah blah. One of many things that could be fixed but won't be fixed because it isn't a problem for "them". Just venting.

 

 

  • Like 2
Link to comment
Share on other sites

  • Members

As I said Saturdays are bad and today is 20 weeks (140 days) and today I received a postcard from Michigan Medicine (U of M) Hospital that there is going to be an Annual Memorial Service in October for Loved Ones who died from January 1-June 30 2021 at the Hospital, it will be virtual and supposedly they named a Star in their honor  Saudade 2021. Of course it made me cry walking back from the mailbox. It is nice that they offer something but as you know I would much rather that my wife be here.

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members
16 hours ago, John9 said:

the last "vision" I have is her struggling to breathe with the oxygen mask on. I never got to hear her sweet voice say the final LOVE YOU I know she said it but I didn't hear her voice say it.

I actually took a photo of my husband lying in ICU. It wasn't intentional. A friend had just given me a small tablet and I hadn't used the camera before, hadn't known there was one. Anyway I was trying to photograph the monitor so I could find out what it all meant. I accidentally got the bed instead. Its a distressing picture ( I actually managed to take it 12 times) but there's no way I can delete it.

Hugs

  • Like 1
  • Sad 1
Link to comment
Share on other sites

  • Members

Regarding professionals not being very professional: 

One of the procedures I authorized to be done on my husband during his last week was a spider-like stent to be placed in his vein to catch any blood clot before it entered his lungs. About two months after he died, I got a notice from the surgeon's office that I needed to schedule the removal of the stent.  Of course I cried like a baby, but I called them and told them he had passed away and therefore would not be scheduling the removal surgery.  

Although that was painful to go through, and could have been avoided if the hospital had communicated with the surgeon, I was understanding.  However, that surgeon's office continued to send me additional notices that I needed to schedule the removal of the stent for over 2 years!!!!  Every 60 days I would get another letter.  I called several times, each time an emotional wreck, and each time angrier than the call before.   I finally just began throwing them in the trash unopened.  But they still made me cry. 

I'll never understand why they could not have deleted my husband's name from their automatic follow-up letters.  It caused me a lot of pain, but clearly they didn't care. 

Gail

  • Like 1
  • Hugs 1
Link to comment
Share on other sites

  • Members

Gail 8588,

I have never understood how people whose job it is to do the job they were hired to do can't or won't do it. I didn't have this exact experience but I have had multiple ones with people not doing their jobs. My wife received a bill for the Air Ambulance and I called about it and they said they understood but then they send notices and "TOLD" me until the FINAL NOTICE is sent they can't do anything to help me and they call and I say look at the "notes" and they say yes we see it BUT... Another example of decisions made and nobody cares about who it affects. I hope that nobody ever goes through this at the worst time of your lives but you know they will. I did have similar experiences in my work and it never went well until after many many phone calls and or letters. The fact was that the Doctors office actually called the Monday after she died and asked to speak to her because they never followed up with the Hospital and the Hospital never followed up with them. I had to also make sure that they cancelled the appointment that she had made for the following Month for a physical so as not to leave a message for her and cause an issue with me or MIL.

  • Like 1
Link to comment
Share on other sites

  • Members
9 hours ago, KayC said:

When I googled Sarcoidosis, they made it sound temporary so maybe that's why you have to prove yours is more debilitating

KayC:  That is what makes the Sarcoidosis community so upset...the internet does not give accurate info about it. A lot of us (but google says only about 10%) fall into the "chronic" category with permanent lung damage. But also, it's a systemic disease and attacks many organs, including the skin, eyes, heart (the worst), liver, spleen, kidneys and brain (which is neurosarcoidosis). So far, it has only attacked my lungs, skin and spleen. My lungs are permanently scarred, which is Stage 4 Sarcoidosis aka Pulmonary Fibrosis. I'm breathing on just 49% lung capacity. That is like breathing with only one lung, My doctor already brought up the possibility that I may need a lung transplant in the future but I don't want one. Anyways, it's an insidious disease. 

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members
8 hours ago, John9 said:

ou could have Life Insurance for all the money in the world and it isn't enough because you can't replace them,

John9:  That's how I am looking at things now and it is just darn bleak and depressing. But it's reality. Like in my situation, money would be very helpful but like you say, it can't replace our loved ones. If I could have my husband back I'd go live in a tent with him if I had to. Just feel so helpless about having to accept he's gone. 

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members

tnd,

That is what I said about "caring" for everyone BUT not having the chance to care for HER, THE MOST IMPORTANT PERSON in my world who was my EVERYTHING and I never got to. I would have given anything to have been able to care for HER.

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members

tnd,

16 minutes ago, tnd said:

.the internet does not give accurate info about it.

Sadly the quote about the disease you have is why All experts warn about relying on "Dr. Google" to get your medical advice. When the Hospital was running the tests to determine what was wrong with my wife, I was receiving notice of test results but when I tried to look them up the information was very confusing and this was when she was still alive and I could actually still think. The internet is good but like everything else it is only as good as the information it has and some of the information is just plain wrong. The search profile makes you go through pages and pages to see if the information is consistent and honestly people are lazy and look at what comes up first.

  • Like 2
Link to comment
Share on other sites

  • Members
2 hours ago, John9 said:

That is what I said about "caring" for everyone BUT not having the chance to care for HER, THE MOST IMPORTANT PERSON in my world who was my EVERYTHING and I never got to. I would have given anything to have been able to care for HER.

John9:  I think I understand...you've cared for others and continue to do so (your MIL) and taking care of your friend's estate but didn't get to care for your wife. I would say she probably felt cared for by you by the marriage you had. My husband would tell me nice things and always told me he loved me but really it was his overall behavior and actions every day that told me he cared for me. But I think I know what you meant. You wanted to be there in her time of need and take care of her and now you think or wonder if she got the short end of the stick? 

  • Like 2
  • Sad 1
Link to comment
Share on other sites

  • Moderators
21 hours ago, John9 said:

We know it isn't a lot of money but if you ADD it up times anyone who qualifies it is  a lot of money for the Government.

WE paid into that all our lives!  As for planning for death, we were in the middle of taking out life insurance and would have had it but they way overbilled what they had quoted so I was fighting them over it when he died...so...nothing.  I did NOT expect him to die, barely 51, he looked in great shape.  :(

15 hours ago, Gail 8588 said:

However, that surgeon's office continued to send me additional notices that I needed to schedule the removal of the stent for over 2 years!!!!

That is HORRIBLE!  I know II would have reamed them out.  You're a better person than I am.

13 hours ago, tnd said:

A lot of us (but google says only about 10%) fall into the "chronic" category with permanent lung damage. But also, it's a systemic disease and attacks many organs, including the skin, eyes, heart (the worst), liver, spleen, kidneys and brain (which is neurosarcoidosis). So far, it has only attacked my lungs, skin and spleen.

I went on to do more reading about it as I knew what you'd said, so didn't stop there, but I wonder that the powers that be don't just assume the best instead of the worst case scenario and then base their decisions accordingly.  You endure way too much and IMO should qualify for disability if anyone should.  My ex had throat cancer and was denied disability, he had to hire a lawyer to fight them and did end up getting it...until after his surgery, they canceled his disability when he got released to go back to work.

13 hours ago, John9 said:

I would have given anything to have been able to care for HER.

That is how I feel, I'd have given anything to have had the opportunity to take care of George.  We'd have gotten through it together, the same as we did with everything.

 

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Members
7 hours ago, KayC said:

My ex had throat cancer and was denied disability, he had to hire a lawyer to fight them

KayC:  That's what I might have to do. Hire a disability lawyer that will work pro-bono. I've been telling that to my brother and SIL and they just keep thinking I will be approved in a couple months. They start in with "Oh, I have a friend that got it quick". Doubt it. Bad enough I have all this "stuff" going on right now and sick but what makes it harder is having to explain things to my own family over and over again. They either don't believe me or else not really listening. Either way it is making life difficult for me. 

  • Like 1
  • Hugs 2
Link to comment
Share on other sites

  • Moderators

They have lawyers for low income, might have to look in your state, here's a link I sent my daughter...1 Getting Free or Low-Cost Legal Help

I understand.  I have some family for sale real cheap!  Kidding aside, they can be a lot to deal with sometimes.

  • Like 1
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

This site uses cookies We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. and uses these terms of services Terms of Use.