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I have no idea how to title this so please bear with me.

post #1 of 22
8/4/08 at 9:04pm
Thread Starter 
I admit that I practice a great amount of anonymity on the web and it's mostly for personal reasons. I do like to share some of the good things about the family but tonight I have to share some of the bad.

5 years ago my Uncle (Mom's younger brother and my Confirmation Godfather) was diagnosed with bladder cancer. It was a very rocky road but things seemed to go into remission for a better part of 3 out of the last 4years. This year though things certainly took a turn for the worse. The cancer resurfaced even though his bladder was completely removed and he developed what is called "black kidney". From there things metastasized to the point he was bed stricken about 3 weeks ago.

As if there wasn't enough happening right now........ today we got the news he was now in Hospice.

I've never experienced this with a family member before since I was either too young to understand or the issue was not of Cancer in nature. I understand that Hospice is the end of the road especially given the fact that all meds for him have stopped other than morphine. I also understand they try to make things as comfortable as possible for the patient and family but that almost seems futile given the nature of things.

None of want to loose him but at the same time we wish he doesn't have to suffer much longer. Has anyone ever experienced this before and could possibly share how long the person has to endure this stage? I hope for my Aunt and two cousins sake it's not too long but as I eluded to a sentence ago that's a mixed feeling.

We tried explaining things to the DD tonight. That was not fun but I guess that's just part of life. This will be her first conscious experience with death and the events surrounding it since she was just shy of a year old when her Great Grand Mother passed and I'm just not sure how she will react.

Since Chicago is where I and the rest of the family is from we will heading back to there when things actually happen. I wish it could be sooner but life and budget restrictions will prevent that. It's gonna take 300 bucks in gas alone for the trip. But I guess that's better than the 3600.00 bucks it could cost to fly so.....

I was mentioning to a good friend earlier that in the last 9 years we have only made it back to Chicago twice. One time was for my Grandmothers Funeral and the other was a more celebratory time. It really sux that this trip will have to be of a more solemn nature as well.

Now for a bit of a break and lighten things up........In trying to turn a really bad situation into a better one we may try and spend an extra day to get "some perspective". I know a couple of ya'll here are in the Chicago area if ya'll are up for some food and a drink ( or 20 'cause I know I sure will be) at a local watering hole..... PM or email me and I'll send a reply when we have more figured out.
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post #2 of 22
8/4/08 at 9:53pm
Oldschool, I am sorry to hear about your Uncle. My father passed away in 2001 after a year long battle with cancer. He was diagnosed with colon cancer and when he underwent surgery it had already metastasized to his liver. He was a tough Irishman and fought the good fight, but stopped undergoing treatment after about ten months and passed two months later.

He died at home in his bed, but was under the car of visiting hospice people for about three weeks if I remember correctly. They made sure he was washed, turned in his bed, etc. After he stopped eating and drinking anything, I believe he was in a coma for seven or eight days until the end. There were some seizures and we had an anti-seizure medication we injected into an IV. My mother was with him and either I or my one of my sisters was there at all times. The hospice people, however, also sat with him, and even spoke to him while he was in a coma. I remember my mother telling me how the hospice person told her in the afternoon that he would most likely pass that evening, and before she left my mother's house she kissed my father on the forehead and told him sleep well with God.

I'm not sure if that's the information you wanted, but once I started typing it, it came out. I guess my answer to your question would be one to two weeks after the eating and drinking end. The hospice workers who helped us were nothing short of angels. By the time they entered the picture, we were all exhausted. Their presence allowed us time to sit back, reflect on my father's life and come to terms with his pending death, and think about what our lives would be like going forward.

I think of how hard it was often, but I also think of the hospice people and visiting nurses we dealt with when I do. There are some very compassionate people out there. I hope your uncle's last days are without undue suffering. Our experience makes me think the hospice care will help to mitigate that for both your uncle and your family.

Kevin
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post #3 of 22
8/4/08 at 10:14pm
big huge huge hugs old school
my daddy died 6 years ago next month, he had leukemia , then got eye cancer and finally it mastized in to his liver, the hospice are the most wonderful people in the world, we looked after daddy at home with the help of the hospice when we found out about the liver cancer we got told he would last 2 days he lasted 6.5 weeks, in the last week he went down quite quickly, he had stopped eating or passing body fluids 2 days before he passed, ,
but you know everybody is different, bruces daddy passed last year and he was only in the hospice for less than 24 hours, tell the family to say everything they need to say to your uncle , even if hes comatose he will still hear them,Its so hard watching somebody in pain , and you just want the pain to end, but then you feel guilty for feeling that way, dont worry thats all very normal feelings.The hospice deal with these situations all the time and they treat you all with great dignity and respect. they will make sure that he is as comfortable as possible and tend to be very flexible with visiting and being there for your family ,
Sending you and your families lots of white light and healing energy
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post #4 of 22
8/5/08 at 6:00am
In my personal and also former professional opinion, hospice care is the place for your uncle to be. It is better for him and almost more importantly, its much better for the family. They hopice staff will see to it that he is taken care of and will do their best to manage his pain levels. Its a balancing act between keeping the person comfortable and lucid with comfort being the overriding goal. Keeping the person lucid allows him to interact with family and tell the stories of their life and maybe say some things that need to be said to promote healing and reconciliation in some cases. Its all very individual and very personal with each family.

I have been through this with several family members as well doing hospice care as a professional. How long a person lives once in hospice care is highly variable. Some people have passed in a matter of two to three days; some have lived for a few months. During this time the remaining family members have a chance to accept the passing of their loved one and are often quite involved in the care of the loved one. On this point, do a google for Diane Kubler-Ross for a discussion on the process of grieving.

Best regards to you and your family,

Jim
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post #5 of 22
8/5/08 at 6:01am
7 years ago i had to place my mom in hospice. it was the best choice possible, i was able to remain her daughter for the last 23 days of her life and not her caregiver, something that would have pissed her off to no end. she had brain cancer and possibly a stroke and she was unable to move anything other than one arm, head and neck.
in my opinion the hospice workers were saints - they allowed her to pass in the best possible manner, surrounded by her loved ones. they gave her morphine and atavan for the anxiety, and held her hand when i wasn't there.
they were extremely kind to my children and showed them that the end of a loved ones life didn't have to be horrible.
i chose to put my mom in private hospice, ten rooms furnished with antiques, beautiful grounds and a heck of a price tag - but well worth every penny. this allowed me to not have the house turned into a sick room atmosphere - something my mom and i had discussed only a year before, when her sister died of brain cancer, also. my mom was adamant about not being, as she called it, a burden.
so, old school, it's usually not long after being put in hospice before passing and it's the best place to be - there's no tubes or iv's, just care and understanding. i'll be praying for you and your uncle.
kathee
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post #6 of 22
8/5/08 at 6:50am
Two years ago...
My Mom, who had suffered a really bad stroke had degraded to stage where she needed constant care. One morning she tried to get out of bed and broke her hip. We were with her at the hospital and the doctors were very reluctant to do anything, but we insisted and they did a hip replacement. Two days later she contracted Pneumonia and things slid down hill very quickly.

She was on morhpine for about a week but it was extremely painfull to see her go so quickly. Between us three kids and my Dad, we kept a 24 hr bed-side watch on her. Worst two weeks of my life......

We feel for you
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post #7 of 22
8/5/08 at 7:28am
Thread Starter 
Thanks all for the replies so far.

I can't say that I am having a difficult time with this mostly because I have had to face some of my own mortality over the last 5 years. My issues are not the topic here but I will say that they can cause undesireable outcome and issues but nothing compared to what a cancer patient has to go though. I'm also not sure what I should do, say, feel or how I should act. It's very odd what I am thinking/feeling at the moment. I have to say it was easier with my Grand Parents to pin-point my feelings and come to terms. They were sudden but not entirely unexpected. Both were 90 when their time came. However my Uncle is only it I think 64. Plus it's not so much what I feel that bothers me but what my mother, other uncle and my aunt and his kids are feeling or enduring. That's where I'm at the biggest loss.

In all honesty I certainly have deep feelings for my Uncle, Aunt his two kids Bob and Sherri. Actually the whole family in general is a big thing and being Italian makes it even bigger. Yet at the same time I wasn't as close to them as I seemed to be with other family members, even ones that lived further away. We did get togther more than rarely at my grandparents for meals as well as holidays, b-days, etc, etc at each others homes for the entire time I lived in Chicago and even after I moved away. They made the trip to Atlanta for our wedding and have always asked my folks how we are.

There was 6 years between my cousin Bob and 8 between his sister Sherri and I. I know it shouldn't matter but that's how it ended up. My Uncle and Aunt are fine people and have always been good to me. But I never developed the closeness that I share with my other uncle and his older brother.

It's funny but, thinking back, since I was the only grandson/nephew/son that was at that age in the area I seemed to be approached differently than my brother and two cousins. All three of them were 3 to 8 years younger than myself. It was no better or worse but just different. Believe it or not it really made a difference in all our perspectives and attitudes toward each other as well as things in general. I also never knew what to say since we seemed to have far different interests and some perspectives on things.

My brother, on the other hand, has almost the same relationship with them as I have with my other Uncle, Aunt and a couple of those cousins (there were 8 too). Funny how family can be that way.

Anyhow we just sit and wait. Sounds horrible but it's the truth. Gotta say that the mind will runaway everytime the phone rings now. Good thing it doesn't ring that often....I guess.

Now knowing what to expect out of Hospice does help provide a bit more clarity.

Thanks again.
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post #8 of 22
8/5/08 at 7:59am
Sorry to hear this news.
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post #9 of 22
8/5/08 at 9:55am
Oldschool,
It goes with out saying that you and your family are in our prayers. Distance and time do not change the fact that this is family you are losing and family that you know is suffering, I am deeply sorry for that. This is the man who stood with you when you were confirmed in the Church, he loves you and you love him.

We all have experiences with death, sometimes I feel like I have more than most.

My favorite uncle, who was the baby of his family…so wild, so young, so cool in the eyes of his niece, went into surgery to remove a stomach blockage, when they opened him up he was riddled with cancer and passed from pneumonia within days, he never left the hospital.

What to say, what to do, what to feel? The answer: whatever you want. You get one shot to make your final peace with your uncle; don’t let the idea that someone else’s grief and feelings hold primacy over yours sway your choices. Your grief should not be weighed against that of others. It’s not fair to you or them. Do it on your terms, what ever that might be.
I made that mistake when my first husband committed suicide. I allowed my feelings to take a back seat to those of his parents and family. Everything I did was because I didn’t want to hurt them further. Needless to say, they didn’t offer me the same courtesy. I had no one to stand by me, no one to lean on (my family couldn’t make it for the wake, they arrived the next day). I stood in a corner out of the way, ostracized by his family, until a friend of his (that I didn’t know all that well) helped me walk to the casket for me to say good bye.
While I’m sure you won’t find that level of a “grief contest” going on, milder versions exist when ever this type of tragedy strikes. Guard yourself before you guard the feelings of others, because no one else (out side your DW and DD) will be concerned with your feelings. They will be thinking of themselves, human nature.
My sainted grandmother lived with me the last 2 ½ years of her life, she was with it until the day she died at 95 years old. We took her to the hospital where she was taken to ICU and she slipped into unconsciousness. I’m a converted Catholic, and I’m sure that there is a tad bit left of that little Presbyterian girl inside, but standing there over her bed I reached for faith and instinctively grabbed the Hail Mary for the first time in my life. She was a proud member of all of those Southern genealogical societies and the only thing I could do for her was to recite her lineage to her (she had, after all, beat it into my head since I was a child), who she had come from in this world and who she had left in her wake. The people she had touched and how she had made a difference in the world. Since she was ever the Southern Lady, she held on to decorum to the end and waited for me to leave her room to take the children home before she left. It would have been bad manners to die in front of someone.

I don’t know if your Uncle is lucid, or able to take phone calls, but perhaps before he is gone you could send a message to be read to him, making sure that he knows how much you feel for him and how his legacy with you has changed the world. Both the reading and the writing of it can heal.

As far as your DD and explaining death, I have some experience with that. My oldest was 2 when her biological father passed. The younger they are, the easier it is for them to accept death as a matter of fact with little or no emotional baggage. At least that is what all the experts I dealt with told me. It is especially easier if the departed is older. We all expect the elderly to die. I realize that your Uncle isn’t what we would consider “elderly”, but let’s face it even a college student would view someone in their sixties as knocking on heaven’s door. If this is the first time in her memory that she has encountered death, your actions (even more than your words) will be what frames her notions and feelings on the subject for the rest of her life. This is one of those times when it is vital that parents lead by example.

Again, our prayers are with you and your family.

-EMO
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post #10 of 22
8/5/08 at 10:43am
I m sorry to hear this news


Prayers to you and your family


Gilles
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post #11 of 22
8/5/08 at 12:10pm
Oldschool, I'm so sorry to hear this news.

Jbd had a great recommentation. Her first name is Elizabeth, though, and her writing can bring you comfort- it did for me.

I had young students with various forms of muscular dystrophy. They all knew their lifespans would be greatly curtailed. Unlike most people, who can push their mortality into the background, these three kids lived every day with that knowledge, from about age 6. They taught me a whole lot about making every day count. As each of them weakened and faced the end, they were more concerned for the welfare of their friends and family! They'd been able, over time, to make their peace. Knowing how each situation turned out, they all had what I'd call "good deaths".

My dad had a tough life with the aftermath of polio, but as if that wasn't enough, he got myasthenia gravis in his 70s. As the medications began to fail him, he grew weaker and weaker. Three of us four kids visited him on the weekend before he died. He, too, had more anxiety about my mom's welfare than that he was facing his end. We spent the weeknd reassuring him that we'd do all we could to help her. He was in hospice less than 18 hours before he died.

Everyone has his/her own way of facing this ultimate challenge. After seeing a lot of death and dying in 56 years, I'd say, follow your uncle's lead. But understand he's probably concerned about all of you and how you'll take it, how you'll be after he's gone.

Take care of each other.
Mezz
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post #12 of 22
8/5/08 at 1:14pm
its hard when they are young , my daddy was on ly 61 when he passed so i understand about the age thing. dont feel guilty about not being that close, its all realtively new experiences for you and its family,
We all grieve in different ways , no particular way is a right or wrong way and the elizabeth kubhler ross books are amazing
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post #13 of 22
8/5/08 at 8:16pm
:o:o Major embarassment on my part. I knew her name was Elisabeth but have absolutely no idea why I typed Diane. I was thinking Elisabeth when I typed it.
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post #14 of 22
8/5/08 at 8:43pm
In all honesty, they are all probably pretty much feeling the same as you. Were your mother and uncle close and/or on good terms with each other? If so ask your mother about some of the good memories of things they did as children or experiences they had as they grew up, had families, etc. Talk about the good times they shared over the years. It will do your mother a world of good to talk if she wants to and when she wants to. By asking, you give her the opprotunity if she wants to take it. She may not want to at this time but maybe later she will. As tessa amd Mezzaluna noted everyone grieves and comes to terms with grief differently.


Anyhow we just sit and wait. Sounds horrible but it's the truth. Gotta say that the mind will runaway everytime the phone rings now. Good thing it doesn't ring that often....I guess.[/quote]
Can I advise to not "sit and wait" ? I understand you can't make the trip at this time and I also don't know the specifics of your uncles current condition but if its at all possible talk to him on the phone every few days if he is able. Maybe only a few minutes is all he can manage but someone else in the family will be there and you want to give the same opprotunity to talk as I have suggested with your mother. Often times the immediate family benefits greatly from knowing that the extended family members care and actually show that care by being there in any way they can. Calling a couple of times a week can mean alot to them.
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post #15 of 22
8/7/08 at 12:12pm
Thread Starter 
Thank you all very much for the time and thought.

I got the call from my Father about 5 minutes ago that my uncle had finally passed. Mom still doesn't know as probably half the famil since we're spread ot across 6 states and 3 countries right now.

The first experience I had with a relative passing was when I was a little younger than our daughter. Considering this was over 40 years ago and since then I have lost both friend and family alike, it never gets any easier.

But talking and reading the replies here certainly did help.
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post #16 of 22
8/7/08 at 3:25pm
I'm so sorry for your loss old school... To all of you who have had to go through the pain too.

I count my blessings
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post #17 of 22
8/7/08 at 11:39pm
ohhh Buddy big huge hugs and lots of comfort and sympathy sent your way and your entire families too
Hes no longer in pain and now he gets to fly free and unfettered
he will always be with your family in spirit
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post #18 of 22
8/8/08 at 4:48am
Ditto tessa's thoughts and comments.
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post #19 of 22
8/8/08 at 9:04pm
Thread Starter 
Thanks again ya'll. The drive provided to be good therapy. Found more context today. Unfortunately it's "Insomnia in Akron". Sounds like a bad "B" flick.

The 3 of us are here in a single room, the DD and DW are fast asleep and I thought I would be too. No Makers to take the edge off so why not just sign back on. Now if I could just get the numbness in the legs and feet to transfer to the head.:look::D You'd figure with only 2 hrs sleep last night..... a 500mile drive and a decent meal would send me off to lala land. Not! Too funny.:lol: Light day driving though tomorrow. We'll have a nice breakfast and make a bee-line outta here.

We'll hit the Chicago area tomorrow. Been trying to set something up with Nicko that hopefully will come together. I'm sure I thoroughly confused him or I should say my mother did it to us both. She tells me we need to do somethings tomorrow all the while it was Sunday which a couple that I already knew of were in the first place. Who can blame her, after all this was her younger brother. But still she's kinda funny when she realizes what she did. We had a good laugh.

I do have one positive thing to say about the trip so far, that Honda Odyssey of ours (2006) is really working out great on the gas mileage thing. 27mpg today from Richmond to here. Wer'e talking V-6 mini van here! 534miles on one tank and that was with heavy traffic about 1/2 the drive too. Finally getting close to what they advertised. I think the 25,000 mile point has something to do with it.

The best thing is if we can cintinue this we'll save 100.00 in gass from what we planned for.
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post #20 of 22
8/9/08 at 1:43am
Sigh. I wonder if I can get through this post without shorting out the keyboard with my tears.

Hospice versus hospital brings up an old issue. My mother died of breast cancer back in 1964 when I was 10 years old. We lived in South Bend, Indiana, she was in a hospital in Chicago. I can't remember how long she was there, but it was many months. Sometimes Dad would go visit her on his own, sometimes he'd take us kids with him. We'd sit in the hospital lobby reading magazines, coloring, whatever.

The hospital had a strict policy of not allowing children under16 as visitors to the patient's rooms. My mother was dying, but the rules said she couldn't be with her children. Insert loud, profanity-ridden rant against clueless bureacrats here.

One night near the end, though, a few of the nurses, possessing both hearts AND brains, risked their jobs for us. They stealthily led us kids up the back stairs and snuck us into my mom's room for some last goodbyes. Why on earth would such a natural and obvious thing to do be treated like a criminal endeavor?

I still hate hospitals.

mjb.
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post #21 of 22
8/9/08 at 8:09am
Safe travels and warm wishes "oldie"...
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post #22 of 22
8/9/08 at 7:50pm
Thread Starter 
I guess this would be a good example of a couple of things. First would be the life of a topic and the conversations within... the other would be the evolution of that topic and the posts.

The topic started kinda dark and depressive. The posts were supportive to say the least and they offered personal experiences as well as good caring advice.

Then we turned to making the journey and now a very positive and delightful turn.

I was finally able to meet Nicko and his lovely wife. Had an outstanding dinner and the conversation time with them we....wel....priceless! What a great couple!!

I have to sya we certainly covered the basis unfortunately I think the wives may have felt left out given the fact that we ( or I should say I) did a lot of talking.

Had a great Greek dinner at the Greek Islands in the western 'burbs (almost made a trip to Greek town but time was short for both sides asnd we decided to skip that. Dang.

Anyhow it wasn't the best of circumstance that brought us to the are but the fact that we met and enjoyed meeting them was a good circumstance.

Ya'll are two great folks. We look forward to the cahnce we get together again in the near future. Just remember Virginia's a great place;)
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