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A very close family friend had surgery in June for a rectal bleed and weight loss.

They removed a large chunk of colon and rectum but did not create a j pouch. They gave him a temp ileo which was, to say the least, problematic. He spent more time in hospital for dehydration than at home (and was probably more comfortable there too). His wife was feeding him fried foods, chinese and pizza as soon as he got home. No wonder his ileo hated him.

He did not accept the ileo and refused to deal with it at all. It leaked constantly.

When he couldn't take it any longer they rehooked him (3 months) and did tests.

He had metatastisized everywhere.

In spite of the chemo and the radiation they have given him between 3 months and a year. No hope.

The rant starts now.

His wife decided from the start that he should not see anyone. Not friends, nor family. 

No one is allowed to go visit him in the hospital or at home. We are not allowed to call him. We are supposedly unaware of his condition. It is not to be discussed.

It is embarassing. It is a dirty cancer. It is unmentionalbe. 

I am pissed. This is a man who has so little time left. He could have his people around him, distractions, friends...I don't know what. I feel like his wife is living in the 1970's where we were left to rot in a corner because our cancer was unmentionable. We were parias.

This is my frustration talking. I thought that we had finally grown up and become open and honest about this disease and suddenly I feel like we have been thrown 40yrs into the past.

What do you do? Call anyway? She is manning the phones and he does not answer them. Knock on the front door? Send flowers? How do you show support and affection to someone who is a dying prisoner in their own home?

I do not want to upset his wife but...her opinion is that he should just be allow to die and not fight, not take any treatments...just to die and get it over with. He is just depressed (rightly so!)

Any suggestions? His family is at witts end...I am supposed to have the great ideas but I am running dry on this one.

Sharon

 

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Sharon, I'm so sorry about your friend. I don't know if he's connected with hospice at this point, but it might be helpful to contact them and ask how to handle a situation like this. I couldn't help but think of my parents when I read your post.  My dad always deferred to my mom with anything medically related.  I wonder if your friend and his wife have that kind of relationship. Either way, hospice can act as an advocate for him and you, if he is deferring to her but he's really needing and wanting more support.

I'm sorry for your friend, his wife, family and friends. Can you talk to his wife and tell her some about your personal colon, or lack thereof of problems? Maybe that will crack the ice about the taboo body parts. Maybe she is distraught by it all and needs help too. It could be him, not wanting to see anyone. He didn't want to care for his stoma so maybe doesn't want to deal with the prognosis by being around others.  I isolated myself after my surgeries and  still don't want to talk to anyone on the phone.

 

Just keep on being Sharon and you will find a way to be there for both of them. He is facing death and she is facing that as well as her life without him. Depression comes hand in hand with illness, especially when it hits this hard.

She was around a lot at the time of my catastrophic surgeries and failures (not my surgeon's fault) she is part of my  close family thus she was over and saw what I lived through (while complaining bitterly to me about her marriage and how I could not understand how she suffered in life)

She is one of 'those'...that does not negate the horrors that she is living though now.

I tried to talk with her but she refuses, sort of wants him to kick off quietly and get it over with...

I like the idea of sending a gift certificate for the cleanning lady or some other service...flowers won't help him but maybe sending healthy food would...Great ideas.

I feel so sad for him. He got sick in May, (probably been sick for a while but living in denial) had surgery, started chemo in Sept and now they say he will be lucky to live to X-mas. 

I am sure that he is depressed, no doubt about it. He is totally dependant on her and she is not even allowing the family in...Hospice is a great idea...maybe they have psy department or some sort of family councilling service...mediators?

Just sad...the whole family is shaken up. Feeling powerless.

Sharon

Close enough but not my ilk...(I know nothing about being sick, I wouldn't understand what gut surgery feels like, how embarassing having a bag is...) I feel so sorry for her misery but she is only making it worse for him.

The latest news from home was last night...

(you gota love crazy people)

She is planning a long cruize post-hubby-death!  (I've heard of destination vacations, weddings and divorces but never destination widowhood!)

This is one for the books

Sharon

This reminds me of the sad case of my neighbor who apparently committed suicide almost exactly a year ago. She was a bubbly retired woman in her mid 60s who was very active and very social at our condo complex, and was on the board for many years.  About 3 years ago, after being divorced for some years, she met and fell and love with a fellow whom I would say was close to 70, and had just retired. They got engaged, and started traveling together all over the country etc. Then he had a heart attack or some cardiac event that didn't kill him right away, but caused him to linger in a semi-vegetative state for many months. This was very, very emotionally draining on her - she kept holding out hope that he would recover, but he never did. After he passed away I would see her around and she clearly wasn't the same person. Her family/children must have also sensed she was in a depression because they tried taking her on overseas vacations. This went on for months and she didn't snap out of it.  I don't know the whole story but heard that she took an overdose of pills. I felt terrible because back in the day, she was such an upbeat woman, like a life of the party kind of woman. I had many conversations with her after her fiancée died and she just couldn't recover from it. In these situations I never know what is the right thing to do or say except to say I am sorry. There is no guidebook on how to help someone in this situation.

One way to look at it is that it could be therapeutic for her. Shortly after I received my cancer diagnosis when things were still uncertain and dicy, I decided to go on a preplanned vacation rather than cancel it.  My family urged me to cancel the vacation and schedule surgery immediately, while my travel partner had no objection to me doing so either.  I decided to go on the vacation, and during that vacation I spent little or no time dwelling on my predicament.  Perhaps it could help her think clearly about what is next in her life.

I don't disagree...I am just used to most future widows not being able to imagine life without their beloved spouses...not going on a month-long holiday to...celebrate/survive/get over it.

Like I said, I admire the strength of character that it would take to do something like that (unless she is traveling with friends who are going to help her through it )...

When I got my first really bad diagnosis I moved across the Atlantic...but that was my life, not losing a beloved.

Maybe modern life has given us a new set of rule and emotional responses to old situations.

Sharon

It doesn't make me think of her as a warm and fuzzy type of person. We all behave differently but this is one for as you say "the books". I certainly hope her husband doesn't know about it. It's not like she can book anything as no one knows the exact date he will die.  Death is never convenient. ...even when we know it's comming. My wonderful step-mother was trying to find someone to take her place after she died. She was worried about him. I've heard about other spouses doing the same.

 

Hopefully she will realize that she is cheating him from talking with his friends before he dies. Funerals are for the living.  Maybe you should send him some flowers now so he caneeds enjoy them.

 

Last edited by TE Marie

Warm and fuzzy she is not.

I will try to call and see if she will let him talk to me but I doubt it...I am not supposed to know that he is sick let alone dying...

On a different note..one of my poor students had an epileptic seizure in class tonight...he sort of staggared out while hitting walls as he walked then I found him on the floor off of the hallway...I stayed with him til it was over...apparently he is not on any treatment in spite of the frequency of the seizures...turns out the kid has displasia of the brain! Only treatment is surgery which means he loses his eye...suddenly dying at 60 seems like a ripe old age compared to 22.

Sharon

What a terrible situation! To be honest though, I don't know what to say, since we are only hearing one side. I have no doubt what you say is true, but everyone copes in their own way. And yeah, some people do not want others seeing them in a less than positive way. I don't get it, but it is true. While I was not dying, I did not want visitors while I was in the hospital or home recuperating. It was just too exausting.

 

I guess you are just going to have to do what you think is right. Send letters, offers to sit with him while the wife gets a respite, whatever. I suppose you could go over there and call, saying you are sitting right outside and would love to briefly visit. Just be prepared to be turned away.

 

Jan

I understand the not wanting someone (especially those that you love and respect) to see you at your worst  but what about the 'saying good bye' part of the illness?

There are a lot of people out there who care deeply for him and many will suffer (and already are) terribly if they cannot see him now... knowing that he is not going to get any better.

He is the 1st young person (under 70) in our family to be dying...(we sort of accept the fatality of the older members even if we do not like it) and it is hard to know how to react or what to do...I guess that in our selfishness we sort of want to feel useful...for now the door is shut tight and they are on lock-down.

Very little news in or out so we wait. Try to respect the wishes of others and hope that somewhere along the line they will ease up on their decision and allow us in to pay our respects and show some support.

Sharon

 

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