Hospitalized 19 weeks

shanda1127

My husband has colon cancer that has metastisized to his peritineum and liver. He has been hospitalized since January 19, 2008(that's nineteen weeks). He has a small bowel blockage that is coming from the tumors that are scattered throughout his abdomen. He has had an NG tube in place since January 19th. He was able to go for 3 weeks without the tube during that time, but he got an infection and he ended up in ICU for 2 days. I have taken a leave of absence from my job and I spend most everyday at the hospital. We have a six year old daughter that has done an amazing job of handling this family crisis, but I am noticing a change in her moods. She is starting to withdraw from friends, and she is very tired most of the time due to the crazy schedule and trying to suppress her feelings.
I am tired and weary as well. There will be another chemo treatment tomorrow, and then a CT scan will be done in two weeks. So again we wait.

The thing is- I have never heard of another situation anywhere close to this. Nineteen weeks in the hospital, no clear path in sight- Not even sure what to do when the CT results come back- the last two scans have not shown any growth or reduction in tumors. How much longer do we go with those same results???

My husbands quality of life is zilch. Most days are spent heavily medicated due to pain and nausea. What time he is awake, he is mostly confused, disoriented and sometimes hallucinating.

Is there anyone that can help me? Can anyone relate to our situation?? Please give me some advice.

soccerfreaks

Shanda:

So sorry to hear of your dilemma, and of your husband's ill health. I was going to break out the "Everyone should have a living will" speech, but it probably doesn't even apply: it is not the panacea that people like to think it is, I have discovered.

It happens that my wife has endured an ordeal recently of similar proportions in some ways. I went into the hospital on Jan. 31 for a lobectomy, only to acquire a staph infection that kept me in the hospital for virtually the entire month of February. Meanwhile, midway through Feb, her dad, who lives here in our area, went into the ICU of a different hospital, where he remained until he passed away in May. While it wasn't 19 weeks, her schedule got rather complicated too, to say nothing of the toll on her psyche.

Since her mother can't drive, she had to figure out a way to be with both me and her dad while ferrying her mother back and forth to a different hospital as well, at least until I got home.

Here is what had to happen, and what happened: she had to put her foot down, for her own sanity, and insist on some conditions, some self-constraints, regarding her schedule. Perhaps you should consider the same for the benefit of yourself and your daughter.

I do not know the extent of your visitations, but perhaps you can decide NOT to visit every day; perhaps you can decide to curtail the length of your visits; perhaps you can arrange for someone to care for your daughter during some visits so that her own schedule is not so taxing; perhaps you can establish some sort of visitation by committee with friends and relatives, so that he has company when you are not there.

Tough decisions to make, I know. Bear in mind that by your own description, he sometimes doesn't even know you are there. Bear in mind that he is (I hope) being 'visited' by nurses on a structured basis, probably every four hours or so, and so he has some 'company', even if it is not always you.

To be perfectly honest, I hated every single minute that my wife was not with me during this last go-round, but some of that was because she was almost always there: she brought my reliance on her on herself you might say .

Not much help, I suppose. In short, you need to take care of yourself if you are to be of any 'use' to your husband AND your daughter, and your daughter is probably too young to be exposed to this much stress.

Best wishes, Shanda, to your husband, to you, and to your daughter.

Take care,

Joe

TereB

Hi Shanda,

I agree with everything that Joe said. I just want to add that your child needs to be taken care of too. Kids understand more than we give them credit for and when we do not explain what is going on, in words they can understand, they usually imagine the worst. I cannot say for sure that your daughter may be scared or depressed but do not ignore her mood changes, withdrawal from friends and being so tired. Give her an opportunity to express what she is feeling. Suppressing feelings is not good for anybody, child or adult.

Check to see if there are social workers in the hospital that can help you with some advise, especially concerning your daughter.

All the best to you and your family,
TereB

soccerfreaks

TereB said:

Hi Shanda,

I agree with everything that Joe said. I just want to add that your child needs to be taken care of too. Kids understand more than we give them credit for and when we do not explain what is going on, in words they can understand, they usually imagine the worst. I cannot say for sure that your daughter may be scared or depressed but do not ignore her mood changes, withdrawal from friends and being so tired. Give her an opportunity to express what she is feeling. Suppressing feelings is not good for anybody, child or adult.

Check to see if there are social workers in the hospital that can help you with some advise, especially concerning your daughter.

All the best to you and your family,
TereB

Well thought, well said, Tere. I got my soccerfreaks handle by stealing it from my daughter (:)) but I felt I deserved it after coaching for 15 years or more, ages 6-16. One thing I learned doing that that I am not sure I would have learned through parenting my own is that the youngsters are VERY perceptive, VERY intelligent, and VERY expressive if you allow them to be. In my role as a coach, I was of course not their parents and I learned a great deal from them about their world views, much of which surprised me in its depth, scope and complexity.

Tere is right on, here, I think. I am not sure that counseling should be considered, as I sometimes think that it can be too much of a life-changing anchor in one of such tender years, but maybe a relative that she relates to strongly or a dear friend?

Unknown

All good advice. One other suggestion, if I may.
Your daughter is six and will understand the concept of 'helping Daddy feel better' and can actually take part in the process....from a distance, so to speak through the magic of video.
I am thinking you might make videos of her talking to daddy, 'reading' to him, showing off her new toy, or whatever. Tell her that Daddy will watch her videos at the hospital and they will make him happy. Yes, I realize this is a stretch. BUT we know that hearing and seeing those we love can be comforting and even healing. If you can actually show him these videos and get some kind of response from him which you can then pass on to your daughter, she will feel 'helpful' in the situation and your hubby may even benefit to an unexpected degree.
Just an idea. If it doesn't 'fit', feel free to disregard it.
God bless you all.

shanda1127

thank you so much for your wonderful advice. My husband is the youngest of 10 children and they have been a wonderful support, they are staying with my husband when I can't be here. I do realize that I need to get some type of support for my daughter. I have been told that Hospice has a grief program for kids that are dealing with loved ones that have cancer. I will make a call to them today.

soccerfreaks

shanda1127 said:

thank you so much for your wonderful advice. My husband is the youngest of 10 children and they have been a wonderful support, they are staying with my husband when I can't be here. I do realize that I need to get some type of support for my daughter. I have been told that Hospice has a grief program for kids that are dealing with loved ones that have cancer. I will make a call to them today.

Good for you! Please keep us posted. We do care.

jeanette7

shanda1127 said:

thank you so much for your wonderful advice. My husband is the youngest of 10 children and they have been a wonderful support, they are staying with my husband when I can't be here. I do realize that I need to get some type of support for my daughter. I have been told that Hospice has a grief program for kids that are dealing with loved ones that have cancer. I will make a call to them today.

i feel real bad, hurt, my friend prostate cancer in his last stage also confused, disoriented, god was with him when i prayed for him and the next day he;s off life support !in the name of jesus pain free. if he gets doctor says call a pastor email prayer and help @yahoo.com put the phone to his ear and i will pray for him