Mists, I am glad to hear that your inlaws thought to ask you to come over. It sounds like they are pretty stressed out about this situation right now. I am wondering if now would be a good time to broach the subject of coming home with Jim again? Perhaps they could all use a break from one another?

I have been wondering how Rachel is doing through all of this?

My thoughts and prayers continue to be with you at this time Mists.

I'm not sure if they would have called me if I hadn't called them first and left a message, actually.  From what I heard from Jim's brother, it seems they had called him a while before I called.

They think I wouldn't take care of Jim.  They already think I'm not taking care of him or helping in any way when I'm there, even though I'm dumping the bucket when he throws up and getting him whatever he needs and helpling him to change his clothes and so on.  There is absolutely no way they would trust me to have him here.  As it was, last night when I was there they called Jim's stepmother's sister over to stay downstairs and "babysit" because they didn't think I could handle it while they were out. 

I also found out from her sister that they've been saying that Jim and I were having "marital problems" before he got cancer.  Apparently he wanted out of the marriage.  That certainly comes as news to me.  I thought that things were going ok...not perfect, not wonderful, but ok.  Comfortable.  Jim still said that he loved me and still does for that matter.  He never gave any indication that he didn't want to be married to me anymore and he gave plenty of indications that he did.  *sigh* 

Everything else that she's said has been wrong, whether the call yesterday that he was failing and vomiting blood (nope) or her interpretation of his condition or his treatments or the lies she's told about me throughout this.  I still fear that maybe this is true, though.  Maybe he did want to end it with me and just never said it.  I have no way of knowing for sure except to try and trust what I remember. 

I try very hard to remember that his dad is in pain.  I have a child and I know that it won't matter if Rachel is 5 or 50, she'll still be my little girl, and if she were dying it would kill me inside.  I know his father must be feeling that, too, about Jim.  I go in there meekly.  I don't get angry at them.  I don't disagree with them.  I don't know how they can't understand that this is devastating for me.  How is it ever ok to treat someone this way?  I can't think of any justification for it, no matter how much either of them might hurt.  Once in a moment of extreme emotion perhaps, but this has been repeated for over a month now.  I keep trying to be brave enough to go back for him, but I don' tknow how much longer I can do this. 

Sorry - I wasn't clear. I meant talking with Jim about having him come home again (not his parents as it is not their decision to make).

I'm wondering if their are any local hospice societies in your area? They might be a good resource for you to check out - a good neutral ground for everyone.

I'm not sure.  Jim is comfortable there and everything is arranged.  I don't want to cause him any more stress with this stuff.  I'd rather he not know just how bad things are for me when I come to see him because he's already feeling guilty about throwing up.  I don't want him to feel guilty about being there, too. 

I never answered your other question about Rachel.  She's doing ok, I think, although she's getting upset about things sometimes that would never have upset her before.  It's got to be hard to be 5 years old trying to understand all of this.  I told her that Jim is dying yesterday; when I heard that he was doing so much worse, I thought it was important to let her know so she'd know what was coming instead of just being told that he had died later without any warning.  She cried a bit and I cuddled her, then she focused on the Wiggles on TV.  She hasn't spoken any more about him yet.

I've tried to keep life happy and normal for her as much as possible, too.  I'd been planning to get her a bicycle...her first...and I got it the other night.  It has training wheels on it and she's starting to get the hang of it.  She was so proud of herself tonight riding on the sidewalk through the neighbourhood.  Later she was telling really, really bad jokes that she was making up like "What did one bed say to the other bed?" "Where are your pillows and blankets?"  *eye roll*

We had one very funny moment in Metro the other day, too.  They had new dividers for putting between orders at the cash that were advertising some kind of cooking knife.  It was shaped like the knife with a handle and I picked it up to show her how cool it was, and I pretended to chop vegetables on the conveyor belt.  She took it out of my hand, put it back down and in a totally serious voice said "Mommy, I don't think you're supposed to play with that."  It was just like she was the mom and I was the kid.  There's just no end to my love for that child.

Mists, I can't tell you how sorry I am to hear of what you're going through. I am wondering if their are any rsources, i.e. social workers, counsellors at the hospital that could maybe offer some kind of group counselling. Can your doctor refer you to someone who makes house calls? Perhaps through hospice, as Somegal mentioned. It sounds like the whole family is struggling to cope, and with everyone dealing with the stress in their own way, and not able to be supportive of you, it's creating even more pressure on you. Take it easy on yourself.  It sounds like you're doing the best you can for Jim and Rachel, and then some. Are you still seeing your counsellor?

I feel so bad for you MistsOfSpring, that not only do you have to deal with your husband's (and father of your child) very serious illness, being apart from him at t his time, and loss of him sometime down the road, but that you also have to deal with such draining, challenging, painful  family relationships.

One never knows how much time we have left with anyone in our lives, whether they are sick or healthy.  I hope you are able to make whatever time you have left with your husband count in the ways that are important to you.

Praying that an abundance of hope, peace, joy, and love fill your heart and life.

Hi MistsOfSpring,

Sometimes family sucks.  This would be one of those times.

Everyone is suffering in some way.  None of that suffering entitles any to abuse another.

The situation is intolerable.

Jim needs to make a choice or Jim needs to support you in making a choice.

Jim is your husband and his folks should fight like hell to support the two of you or they can visit if he feels up to seeing them.

Grace and peace to you.

John

(((mists))) what is the response of the social workers dealing with Jim's case.  S/he are there to provide you both with support during this tough time - hold them to that!

Agree 100% with John.  This should be between yourself and your husband first.

I too agree.  Jim should be home to hear Rachels talk about her new bike.  He should be resting in his own space.

His parents should be visiting him at your home and helping you there as much as possible.  Bringing food, helping with Rachel, sitting with him for company......

I wonder if in fact though, that you prefer this situation.  Death is a very scary thing and caring for someone dying is scary.  Are you perhaps frightened of insisting on Jim living in his own home with his own family?  Is that some fear that you will be on your own and unable to cope?

I think you need to honestly assess yourself and if that is the case then make peace with the situation you are in. 

If in fact you want him home and know you can care for him ( perhaps with your mothers help)   then insists on it to Jim.

He needs to know that you don't feel he is a burden but instead that it is a honour and a job as his wife that you want.  A gift you want to give him, that he is able to see his daughter as puch as possible.

Right now he is taking the path of least resistance and that is ok for him.  But you need to insist.  As long as you honestly know that you want him home

I honestly don't know what I could handle.  In Burlington, they have all kinds of extended family coming to help them take care of him and he gets visitors all the time.  Here there would just be me.  I wish his family didn't hate me and I could be there taking care of him, too, but that's not happening.  I feel like I'm an open wound or a severe burn emotionally and instead of treating me with any kind of gentleness or care, they are handling me roughly and pouring acid on me instead.  I wouldn't feel safe with them coming here to see him if he were here, but I don't know if I could take care of him alone. I have very few complaints about the physical care that he is getting there and I want him to feel as comfortable as possible. 

When I go there I try to do whatever I can.  I help him to the washroom, I get him drinks, I empty and rinse the bucket when he's done throwing up.  I try to help his father and stepmother, too, by offering to get things or telling them I'll stay there and they are free to go out for a while.  When I say I'll do something for them, they often say no.  They won't let me help when I try, then they get mad at me for not helping more.  An assumption has been made that I'm neglectful, lazy and uncaring and everything that happens is seen through that lens. 

All I really want from them is a minimum level of respect.  If they could simply be polite to me and let me visit and help, that would be good...althought at this point I'm not sure I'd even trust it.  I'm always bracing myself for the next hit. 

Hi Mists,

I appreciate your comment about the difficulty of caring for Jim yourself.  Everyone learns what their limits are and how much help they can get.

To that end I think it is important for you and all of us .  We have all been urging you to bring Jim home which chlearly is not helpful when you don't feel able to.

I expect alot of the animosity towards you is related both to the stress everyone is under and the knowledge that they all have that you can't handle him alone.  That probably makes them feel mad, superior, judgemental........

I always think with difficult families that it helps to have expectations out on the table  No matter how hard the conversation is.  It helps because everyone knows where everyone stands.

I think you need to sit down and figure out what you can do.  Not what you wish you could do but exactly what you can do.

For instance

Maybe you can be at the inlaws house Monday after you drop off Rachel to school and take over all his care until 7 p.m. when you pick Rachel up from a friends house

Tuesday you can just be there from 10 - 3 and then back for Rachel

Wednesday you arrange for Rachel to stay with a friend and you come at noon and stay till the next morning.

Thursday you dont' go

and so on.

I woudl think about it carefully and arrange care or better yet ask your mom to come down to facilitate everything.

You should be clear on what care Jim needs.  Toiletting, sponge baths or assists in the shower.  Meals cooked and assistance with eating.  Taking him for walks around the block in a wheel chair...........

Then once you are clear, hae a chat over tea with his parents and lay out your plans

On a side note, it sounds to me like Jim is getting very little fluids and vomitting up regularily.  I would call his doctor about the thoughts of IV fluids and IV antinausea medication to allow him to feel better

That might be part of the problem, although I was very clear that I wanted him home before when his needs weren't so great and I could have handled it all by myself.  They were quite adamant that he stay there.  Also, it seems irrational to me that they would be angry with me for not being capable of caring for him completely on my own while also taking care of our child while they have arranged nearly a dozen people coming in and out of the house to help them with it.  Even if it were just the two of them without anyone else helping, that's still more than just me. 

Regarding Jim's needs...he hasn't seen a doctor in weeks.  The last time he saw the oncologist was Feb 21st, I believe, and a family friend who is a doctor came to the house once since then.  I would love to take him for a walk in a wheel chair, but there is no wheel chair; other than trips to the bathroom he hasn't been out of that room for a month.  They have hired someone to come in and bathe him.  He hasn't eaten anything at all in a couple of weeks, either, and they have made the decision with home care to not give him any IV fluids.  There is no effort being made to strengthen him in any way.  He has a narcotic patch for the pain and he gets a shot a few times a day for the nausea, but it isn't working.  At this point he urinates about once every 36 hours, but he still gets up to go on his own.  He takes sips of water or Gatorade or ginger ale because his mouth and throat are so dry, but he never keeps any of it down for longer than a few minutes. 

This is what the home care nurse and his surgeon father consider "keeping him comfortable."  I have no experience with any of this...I'm trying to believe that this is really the best way to do things, but I wondered about the IV fluids, too, and why they weren't providing them.  I also think that if he went back to the oncologist, there would probably be palliative treatments available like radiation or targeted chemo that would help with symptom reduction, such as the vomiting.  No one listens to what I have to say, though.  As I've been told by them so many times, I don't know what I'm talking about because I'm not a doctor.

That might be part of the problem, although I was very clear that I wanted him home before when his needs weren't so great and I could have handled it all by myself.  They were quite adamant that he stay there.  Also, it seems irrational to me that they would be angry with me for not being capable of caring for him completely on my own while also taking care of our child while they have arranged nearly a dozen people coming in and out of the house to help them with it.  Even if it were just the two of them without anyone else helping, that's still more than just me. 

Regarding Jim's needs...he hasn't seen a doctor in weeks.  The last time he saw the oncologist was Feb 21st, I believe, and a family friend who is a doctor came to the house once since then.  I would love to take him for a walk in a wheel chair, but there is no wheel chair; other than trips to the bathroom he hasn't been out of that room for a month.  They have hired someone to come in and bathe him.  He hasn't eaten anything at all in a couple of weeks, either, and they have made the decision with home care to not give him any IV fluids.  There is no effort being made to strengthen him in any way.  He has a narcotic patch for the pain and he gets a shot a few times a day for the nausea, but it isn't working.  At this point he urinates about once every 36 hours, but he still gets up to go on his own.  He takes sips of water or Gatorade or ginger ale because his mouth and throat are so dry, but he never keeps any of it down for longer than a few minutes. 

This is what the home care nurse and his surgeon father consider "keeping him comfortable."  I have no experience with any of this...I'm trying to believe that this is really the best way to do things, but I wondered about the IV fluids, too, and why they weren't providing them.  I also think that if he went back to the oncologist, there would probably be palliative treatments available like radiation or targeted chemo that would help with symptom reduction, such as the vomiting.  No one listens to what I have to say, though.  As I've been told by them so many times, I don't know what I'm talking about because I'm not a doctor.

MistsofSpring....is it possible the parents are exercising Jim's requests.

In other words, is it possible that Jim wants to be at his parents.

I recongize that this site is a place for you to vent, and as such, we hear and see your focus on how your life will be; however, nothing you post is anonymous

Others may have read it, or be reading it, and not recognizing the focus may not be repesentative of how you feel over all.  It could give them the wrong impression...

This is horrible.

Jim is suffering terribly and needs an advocate.  I'm not a nurse or a dr however if my husband or close family member were suffering like that and receiving palliative care (which is what keeping comfortable is however Jim doesn't sound comfortable in the least).  I would go all Shirley MacLean from Terms of Endearment on the medical people's asses.  Seriously. 

As lastpointe suggested Jim should be on an iv with anti-nausea medication and what about morphine???? He is not receiving adequate medical care and should not be enduring this nightmare at the end of his life.   

Hi Mists.  

I am sorry to hear about the situation with Jim but I do think, after reading what you have said that he is getting appropriate paliative care.

There is no way to eliiminate pain from cancer with out keeping a person in a drug haze of morphine injections and I suspect that because that hastens death in some ways no one is prepared to go there yet.  Marijuana can help at early stages but it sounds like things are too far gone.

If someone is not getting liquids and is voiding every 36 hours then the end is close by.  Maybe not tomorrow but not three weeks either.

It is time to realise that and to make arrangements.

It is time to bring Rachel for her last visit.  It is time for your mom to come down to stay with her so you can stay there.

Sleep on the couch, sleep in a chair but be there.

Rent a wheel chair to try a trip outside but he may be too weak to manage it.  A strong guy( male nurse or brother) could perhaps lift him and carry him to a couch for a change or carry him outside.  I suspect he can no longer walk to it.

He has a nurse to bathe him and give him shots I think you said three times a day. That is good.  It is no different than giving him pain or nausea meds vis iV and someone has elected that the fluids would only give him an extra day or three and that is likely true.  And those days filled with pain.

Sometimes as the end approaches patients start to be given shots of morphine but then they more or less lose consciousness until the end.  

It is time to discuss his funeral with Jim and his dad.  What does Jim want, what can you afford, readings? hymns or Springstein........

It is also time to ensure that you know the will, the lawyer, the executor.  If you have a minister or if Jim's dads minister is doing the service then this is the time to perhaps ask him/her over to meet with Jim and talk.

This is the time to talk to Jim about Rachel and her future.  Do you know what his dreams and wishes were for her?  Was there something that he really wanted her to experience......

Get over there with ice chips, sips of gingerale, a banana popcycle ( often very tasty for the very ill)

But first be clear in your mind what you cna do and wish to do and then be there.  Wil you get poorly treated?  Perhaps as it appears that the stress is bringing out th worst in the family but you are his family.  You are the mother of his only child.  You are the important one.

If you don't stay there then prepare yourself to get a call that he has died and has already been sent to the funeral parlor.  Be clear on what Jim's wishes and your wishes are for the funeral.

Peace be with you.  The time is short.  There is no cure coming just an opportunity to be with the man you love as he leaves you.  You may only have a few days

Well I feel a little better after reading this as I know you are a nurse lastpointe.  Excellent advice about preparing for the end asap - with respect I think the time has come for him to be made as comfortable as possible even if it means a drug haze.  That kind of Nausea and vomiting = 0 quality of life.

Mists, not everyone is meant to be a "nurse". That's why there are nurses. Do you know how many people are squeamish at the sight of blood and bodily fluids? or how many men choose not see their babies being born because the are not able to handle it? What I hear from you is your sensititivity, your love and your helplessnes and I want to remind you that when a minister shows up to see the dying they are not there to fulfill the physical requirements of the journey from life to death but usually to spiritually nurture a soul or the mind (depending on the belief or non belief of the person)

Don't be so hard on yourself just because some may see you as the one that should be emptying the bedpans, cleaning the emisis, or whatever.....it's not for everyone. You have a relationship with your husband that is unique that no other person can give him but you. Your presence, caring and love are as essential as water and everyone has a role that is just as important as the other ones. YOU ARE VERY IMPORTANT in this journey for Jim and don't let anyone tell you otherwise. You share this mans life as his wife, you have shared his body and his mind and you know him like no other, through the good times and the bad, you have been there and so has he. If all you could offer him now was your love while the nurses and others take care of his physical needs, don't underestimate how crucially important you are to your husband. Just being there, holding his hand, smiling, and loving, is life sustaining.

Here is a site for a hospice in Burlington, there aren't too many around Ontario. I noticed they have a bereavement support group that you may want to contact. Not sure if it's a group open to anyone who doesn't have family at the hospice but it's worth checking out and you may want to ask Jim's doctor if it's an option for your husband to go there.

http://www.thecarpenterhospice.com/

Actually she's been doing very well with the nursing stuff imo - seems as though Jim's family are the ones who are being unreasonably hard on her and that hurts. 

From ACS:

Being there

"No matter how hard it may be, it is still important to try to be there for the person. The person with cancer may feel lonely even if there are people around. This is because the people nearby may not be really in tune with what is going on with the person. You can be the person who is in sync with your loved one every step of the way. Just by staying close and listening with a smile or gentle touch, you show you are there for your loved one. It takes courage and extra energy to be in this situation.

Sometimes the person with advanced cancer may pull away from people and seem to be withdrawing as death nears. This is usually a natural process and is one way of disconnecting from life. The best thing you can do if this happens is to take the person's cue, and simply stay in the background and be available. Try not to take this withdrawal personally or feel hurt when the person pulls away. It likely has nothing to do with you."

Meridith, I was just worried that Mist was being "guilted" into doing something that she wasn't that comfortable with. You may be right, it's hard to really know from "afar".

Others have offered good advice, Mists, so I will simply say that I am keeping you close in thoughts and prayers.

Contact with Jim is important as he nears death - the touch of a hand....your comforting voice.  I hope circumstances allow you to be present for the final days and hours of his life journey.

I've no doubt that she is Waterfall and it was good gentle advice you gave.

I have no adivce either mists just gentle, loving hugs and prayers.

I think there is wonderful advice present in this thread for anyone who is walking with someone on their last days.

Thank-you to those who have offered their wisdom, their experiences, and their own witness to grief to the community.

I am sure that there will be others who just pop in, who read this thread, and if not now, at some point, it will offer them strength and guidance.

peace to all that post

More soft thoughts and gentle hugs for you MistsOfSpring. I am so very, very sorry for all that you are experiencing ....

continued strengh for you Mistsofspring

This reads as if the decision has been made to provide hospice care in home, allowing him to die and doing nothing to hasten death or prolong life. May he transition as easily as possible.

Mists when my elderly father was living with my family in a pallative care situation and matters got really bad I found the social worker and community nurse who was assigned to our case very helpful.  If Bill is getting in home medication there must be a community care nurse.  I really suggest that you have a heart to heart with him or her.  Because they have special training in pallative care they are really aware of the dynamics of grief and also how difficult it is to care for a dying person.  They also may be able to assess your in-laws and see if they are capable emotionally of continuing to look after Bill or if you are capable emotionally to look after him.  Often times it doesn't seem like it is possible to have a loved one at home until you realize the supports that can be provided.  

I was able to have my Dad at home for about 8 months until we finally had to admit that it was too much for us and he is now in a nursing home.  The community care nurse was really really helpful in making it possible for us to have him with us as long as possible but then allowing us to let him go without taking on too much guilt.  BTW he is doing absolutely great there (or as well as can be expected)

Mists,

I hope that you have had a good few days and that things with Jim and his family have ben ok.

Thinking of you often and wishing you the best.

You are going through the worst of times and it will tax you to extremes.  Tkae care, be strong and lean on those who will help you.

Hoping that this week you (and hopefully Rachael) will be able to spend some time with Jim.

Thinking of you and Jim today Mists

Ah Mists of Spring-It really is a difficult path you are walking.... Make YOUR decisions based on what you can live with-Do what YOU WANT without regrets as this time will pass very quickly!