The daily struggle...

[KATPILOT]

Gwen you are right about us being evolved, certainly not as evolved as we hoped. Sometimes it seems as if we are going backward.  Kathy would have been having a very sad time with how we are behaving in the world today least of all right here in our country. She taught me not to judge and the truth is she was so far more evolved than I that I wanted to be like her. I continue to want to be like her. She would be the one finding love among hatred. I wonder what the world would look like if every person alive was widowed. I think compassion might overpower hate

 

 

.i think I will just put an 'out of order' sticker on my forehead and call it a day.

Now that is really great Gwen.

[Gin]

 Today I was looking thru some old pics.  I realized how Al was deteriorating over the last 3 years.  He got thinner and weaker.  I did not see it while it was happening.  Now it is so obvious.  I do not think I could have stopped anything.  We were at the doctors all the time.  Just curious that I thought everything would be OK.  Feel rather foolish.

[Patty65]

Oh GIn, me too... I look through the progression of pictures, and I see it.  How couldn't have I THEN?  It's so hard to see what we couldn't/didn't then... (((hugs)))

[Gin]

I  think that we do not see the day to day changes because we are so close to it AND we want everything to be O K.  My friends saw the changes that I did not.  We went to a friend's house a few months before Al died.  Later she told me that she told her husband that they would never see Al again.  

[scba]

Do you think we were in denial back then? i see the non-progression too in pictures...

[Gin]

Probably.  We certainly did not want the bad stuff to happen.  I was so sure Al would pull thru this last bout.  He pulled thru so many other horrible things.

[Margm]

I try not to think about working nearly half a century typing symptoms of diseases, symptoms before death, wasting of the skin.  I saw Billy's skin was hanging, but I thought it was just our age.  Gravity.  We neither were spring chickens anymore.  I thought it was just aging.  Then they told us and the light bulb went off over my head.  I remember my cancer doctor fussing at me for reading up so much on my cancer.  He told me that I just wrote words the doctor dictated, to quit trying to be a doctor.  And the time I went to the library and was reading about a rabbits reproductive organs and cancer.  It hit me, I was in deep over my head.  I knew words, I knew symptoms, I did not know what things looked like and here I was reading about cancer in rabbits.  (Before computers, before Google), so I quit taking things so serious.  No one would give me a prescription pad anyhow.  They told me Billy only had months to live and I knew it, I knew he had skin wasting and it was not age and I hated me for knowing but not really knowing.  I knew words, I knew how to spell them, I was no doctor.  I had Billy at his twice yearly checkups.  Couldn't someone have read his lab work during all that time?  My doctor's nurse called today.  She said the counselor they had found me would not just accept Medicare.  She said she had told me that when she (counselor's office) called.  I told that nurse no counselor had ever called me and that I had Blue Cross and Blue Shield also.  I told her the next time she talked to the "counselor" to tell her that she had never called me.  Then I asked "was my lab work okay?"  She said "wait, let me look, I will have to get back to you."  Hell no she did not look. This was done a month ago. Neither did the doctor.  And my little verse underneath that is.........I don't give a damn.  No, they did not read Billy's lab work.  If they had, they would have seen his LFT's were so messed up they would have had him in months before.  But, even then it would have done no good.  We have had Group Insurance with the State of Louisiana since 1959, now the retirement Group Insurance, which has to be secondary because the almighty Medicare says they have to be first.  Old people fall through the cracks because they cannot hold on long enough.

[Brad]

3 hours ago, KATPILOT said:

Gwen you are right about us being evolved, certainly not as evolved as we hoped. Sometimes it seems as if we are going backward.  Kathy would have been having a very sad time with how we are behaving in the world today least of all right here in our country. She taught me not to judge and the truth is she was so far more evolved than I that I wanted to be like her. I continue to want to be like her. She would be the one finding love among hatred. I wonder what the world would look like if every person alive was widowed. I think compassion might overpower hate

One of the positives I took out of our ordeal with Deedo's cancer was how many wonderful, compassionate and caring people there are in this world.  From the people at the American Cancer Society, Hope Lodge, Mayo Clinic, Hospice of the Valley, almost everyone we encountered were angels on Earth; the countless volunteers, the people who so selfishlessly gave of themselves and their talents.  I see the news reports but honestly I encounter very few people like those who make the news.  I believe social media has given voice to those disenfranchised fringe elements but the people I meet and see really are good, kind, caring souls.  So Steve, my friend, from my perspective compassion continues to overpower hate; at least in my little corner of the world.  But then I live in a neighborhood where I can only remember one petty crime in nearly thirty years.

[kayc]

Marg, you are very astute, I think you have them nailed down...it's just, what good is it?  It doesn't change anything.  We all left to their mercy.  I drove 110 miles to the valley and back for a doctor's appointment two weeks ago only to be told they'd wrote it down in December, not November.  They never mentioned December.  I know exactly how the conversation went, it boils down to they made a mistake and don't care, certainly no apology.  Medical care is sadly lacking nowadays.  There was a time they didn't know as much but they seemed to try harder, care more, at least apologize when they made a mistake, now they don't seem to follow through.

It comes down to we have to battle for everything and sometimes that is just so wearing.

[Margm]

My worlds collide often.  I used to watch Gunsmoke and think, well if Doc Adams is 10 miles away just use your cell phone and call him.  What a waste of Chester's stiff legged time to ride those 10 miles to town and bring Doc Adams back.  But the thing was, back then we had people that were like Doc Adams. A family doctor that was not afraid to spank me at age 7, when I was having my tonsils out and bucking the ether.  (Have you ever smelled that stuff?)  At least that (ether) has improved.  I think Marty's father was a Doc Adams type.  They disappeared about the time the HMO's came into being.  My doctor left the hospital for another one because he did not want to take the HMO's (and I hope I am remembering that right).  I think Cigna was one of the first.  Now medical costs are outlandish.  My sister thought our wonderful president was saving so many people with his new Obamacare.  Then, Jindal in Louisiana started shutting down the charity hospitals.  It is not all the doctor's faults.  Their insurance against people suing them is impossible almost, to pay.  But, we have no more Doc Adams's and we still have some caring doctors, but you cannot find them.  If you do find them, keep them.  One of our "good ones" you cannot get an appointment with.  He has too many patients.  And you have nurses that time them no more than 15 minutes with each patient.  They charge Medicare an impossible rate, because they know Medicare is going to pay Doc Adams charges, not modern charges.  And Obamacare.............?  We have someone in there now over health and hospitals that hated Obamacare.  In Louisiana, we can no longer have our charity hospitals, the teaching hospitals, because Jindal has done more harm than Hurricane Katrina.  That is not an exaggeration folks.  One person cannot fight city hall.

[Cookie]

17 hours ago, Gin said:

 Today I was looking thru some old pics.  I realized how Al was deteriorating over the last 3 years.  He got thinner and weaker.  I did not see it while it was happening.  Now it is so obvious.  I do not think I could have stopped anything.  We were at the doctors all the time.  Just curious that I thought everything would be OK.  Feel rather foolish.

Don't feel foolish.  I have had the exact same experience.  My husband was skin and bones and I was still in denial about him dying.  Of course, he was walking, talking and joking all along until he died.  I also vividly remember the strong spirit in his blue eyes and that was all I saw.  I have seen some videos of that time and am shocked at how obviously sick he was.  It makes me so sad.  I feel like maybe I would have been a little different and not acting like he still had time.....Cookie

[Cookie]

14 hours ago, Brad said:

One of the positives I took out of our ordeal with Deedo's cancer was how many wonderful, compassionate and caring people there are in this world.  From the people at the American Cancer Society, Hope Lodge, Mayo Clinic, Hospice of the Valley, almost everyone we encountered were angels on Earth; the countless volunteers, the people who so selfishlessly gave of themselves and their talents.  I see the news reports but honestly I encounter very few people like those who make the news.  I believe social media has given voice to those disenfranchised fringe elements but the people I meet and see really are good, kind, caring souls.  So Steve, my friend, from my perspective compassion continues to overpower hate; at least in my little corner of the world.  But then I live in a neighborhood where I can only remember one petty crime in nearly thirty years.

I agree with you Brad.  There seem to be mostly really good people out there.  It's the same story where I live.  My neighbor has been coming up to grade my road without being asked since John died.  I have tried to pay him but he won't hear of it, so I volunteer with his church.  He is not the only one.  I believe most people have good hearts.  The media is really skewed....Cookie

[Gin]

Cookie,

My husband was telling jokes right to the end, also.  Everyone else saw it but me.  The one who should have.

[Gwenivere]

19 hours ago, Gin said:

I  think that we do not see the day to day changes because we are so close to it AND we want everything to be O K.  My friends saw the changes that I did not.  We went to a friend's house a few months before Al died.  Later she told me that she told her husband that they would never see Al again.  

Unfortunately I saw the massive changes in Steves appearance in the last 2 years.  One time we ran into someone that had not seen him since he got sick and she cried when she saw him.  He had had chemo so was bald at the time and gained a lot of weight.  I somehow saw but did also not see that guy.  I would hear his voice from another room and the image was the guy in the profile picture.  When I was physically with him, I adapted to the change.  His personality was exactly the same most if the time.  One thing that never changed was his beautiful blue eyes.  Now i get visions of him occasionally when he was sick, but all in all in my mind are the 'hunk' I married.  All pictures in the house are of that guy.  I've asked myself I this shallow?  Nope.  It's because I don't want to ever see the disease anymore.  I want my memories to be of the person he was before that monster started taking him away. 

[Brad]

Regretfully I too saw the changes the cancer, the chemo, and the radiation all took on Deedo.  These are those unwelcome memories I am trying to cope with.  I watched as she was robbed of everything and finally robbed of life itself.  

[brat#2]

I'm so sorry you all had seen the changes that were made in your soulmates.  I didn't really have that, not enough time for the treatments to really take their ugly side effects on Dale, the only thing was he did lose his hair, but truthfully he look good bald and didn't look that much different as his hair was so thin anyway and he always wore it pulled back.  He never lost his beard or the spark in his eyes or his sense of humor.  So in a way it was hard when he died because he didn't look sick!  Even if he had, I would be like Gwen, and only see the man that I married and loved, which I'm sure all of you did too.  That is probably why you couldn't see what the disease did to them and that is the way we should remember them, I know it is difficult sometimes not to think of the changes, but they wouldn't want you to think of them that way. 

Joyce

 

[Gwenivere]

23 minutes ago, brat#2 said:

 That is probably why you couldn't see what the disease did to them and that is the way we should remember them, I know it is difficult sometimes not to think of the changes, but they wouldn't want you to think of them that way.

Beautifully put, Joyce.

[kayc]

The last year my husband was alive he wasn't putting things away.  I remember saying something to him about it.  This was not like him, he was always so organized, so neat.  He was the one who would walk through the living room and straighten up the pillows and throws.  He was so tired!  Why didn't I notice it?  I should have known he had something wrong with him (five blocked arteries and still going to work 75 miles away at a physically demanding job). I wish I'd babied him more that year, known somehow he was going to die.  I didn't have a clue.  

[Gin]

My husband had so many issues.  The remedy for everything seemed to be Exercise.  The poor guy went 4 days a week to try to exercise.  He was so tired and weak.  I should have just let him stay home and relax.  He really believed it would help.  It did not.  Of course, I do not know how he would have been if he did not exercise.  Maybe he would have died sooner.  

[Cookie]

I understand all of these stories.  I despair that I will ever get the sick pictures out of my mind.  It's not that I don't remember the beautiful, healthy man I was married to, but when I do, I get a strong longing for him and so have to move away from the memories or I'm remembering him sick and get really sad and depressed.  Do you ever come to some peace with this?  I realize I am still not at peace with the loss of him and the cruel way it happened even after a year and a half.  I somehow need to find that peace.....Cookie

[Margm]

Cookie, I had only a very short time to take care of Billy.  He had to know (and I believe he knew) that every thing I did for him was done with love and never with any revulsion on my part at all.  I would have done this forever if I could.  But this man (who when we first married said a wife of his was not going to work), he prided himself in "being the man."  He was old fashioned in a lot of ways, but also he was not going to make the same mistakes his dad made.  "I love you" was never said in his household.  It was said 100 times a day in ours.  If I left out of the house without saying it and got down the road, I knew to go back.  He would laugh, but he expected it.  And we meant it.  Toward the end he even got his sister to saying it and after he is gone, she still says it.  He had to be "the man" and even after I started working, it took a little away from him, but in these days and times, this happens.  It was never called my money or his, it was always ours.  My helping him had an effect on him that he did not like.  He had taken care of me totally, changed the bags that were attached to the colon rupture and wanted to drive me everywhere. He was being "the man." He went from walking, no trouble, to cane, to walker, to wheelchair in five weeks and to my giving him baths in his bed.  It was a loving thing on my part, but on his part, his old fashioned manhood and dignity had been injured more than his body.  

My dad had prostate cancer.  Things that were done to him injured his own manhood and took away his dignity.  My mom's sisters could be crude.  One's husband had had prostate cancer.  My aunt came down the halls of the hospital very loudly saying, "Well Elvie, did they cut off your _______s".  My dad lost every shred of dignity he had and it took him four years to pass away.  

My only consolation is that Billy only suffered a short time.  I do not believe he would have wanted to live with my taking care of his every need.  Yet, he did not mind, expected to do all the personal things for me, because he was THE MAN.  We grew up small town, red-neck country southerners, maybe we had different customs than people in other states.  Maybe the customs in the homes we came from were different.  Myself, I enjoyed living in trailer parks after we retired.  That was the fun of having an RV, just move.  

And people may look at my cards strangely, I always sign them Billy and Margaret, after all, it is still "our" money, and he contributed more to it than I did.  

 

[kayc]

Cookie, it took me a long long time to get those ending memories to quit haunting me, but it's finally lessened its grip.

[Patty65]

Marg and Cookie,

Thank you so much for posting what you did.  I've been dealing with those things silently - and haven't been quite able to express any of it out loud - the horrible images that come so often of the rapid deterioration... the heartbreak of my strong, tough, truck-driving man losing his dignity.  He used to tell me that if he was ever ill and not going to make it, he would drive off in his truck and never be seen from again.  I would tell him, it's an island, I'll track you down! When he was passing, I asked him to haunt me, but these images are not what I meant.

(((hugs)))

Patty

[KATPILOT]

Sadly Patty we get the bad haunts as well as good ones. I wish sometimes I could select what I wish would pop into my head.  This week when you drive Ron's truck I hope you will feel him in it. You talk about a place to meditate? I think perhaps you might have one of your own. Just a thought.

I wish we didn't have those memories. They get in the way of happier times. Too bad we don't have an MIB neuralizer. As agent K said "That's one of a thousand memories I don't want to have".

[Patty65]

Yeah, tomorrow is the day that I start driving his 4x4 full cab Silverado.  I started it up the other night, after over a month, and vrooom... of course it did.  He took pristine care of it. A hint of hesitating starting up last year about this time, and he was off to get a new top-line battery.  

That's a really good idea, Steve.  Meditation in his Truck. Try to connect.  Try to find his energy there.

Having a weirdly grief stricken day, weird because my daughter Catherine comes home tonight from college -- she'll be driving the red pasta-mobile while she is here... which is why I'll drive the truck. I haven't seen her since her trip here for the service.  I should be (and am?) excited to be with her, but I'm fighting back tears with every step today.  The knot in my throat. All the signs of the holidays, and for some unknown reason, all I am doing is projecting what he was thinking and feeling a year ago.  It was when he started retreating... and I'm imagining that he Knew, and feared leaving me alone with the business, and the house and just everything, with no life insurance to help.  He was helpless. And I was worried but clueless.  Or Polyanna.  I'm trying not to be hard on myself, with little success.  I know logically, rationally, there was nothing I could have done. Except help him through the reality more.  I think we both didn't want reality.  I think we both subconsciously couldn't stand the pain of this separation, and held it tightly in us until the collapse, the last three weeks.

I want to be strong for Catherine.  I want her to believe her mom is OK.  All these months later. I just don't know if I'll be able to pull it off.

Thanks for listening...

Patty