Caregivers Sharing, Part 16

Angie, it seems that the Respite worker came just in time today. Just when you think you're going to lose it, something happens to prevent that.

Carol, that's always a good thing.

Hugs,
Connie

Hi Caregivers,

I'm sitting at my husbands bedside waiting for the liver team to come in. I brought him in to the ER night before last in unbearable pain and a fever. Since then we've learned that it's highly suspected that the cancer has spread to his lymph nodes. I was numb yesterday but that is wearing off. This morning up until a few minuts ago I just felt sad, now I'm feeling mad. And I just need to vent. I'm mad at this scoring system that UNOS has for cancer patients!!! I know they give extra points and he got them, but in the meantime because his underlying liver disease isn't progressing as fast as the cancer, now it's has spread. Knowing it's was going to spread I just don't get why they wouldn't move him to the top of the list and get him transplanted before it kills him. So we've been waiting for them to do a biopsy since yesterday,but he was stuck in the ER because there were no beds and they wouldn't do it until the got him in a room. they got him in a room last night and they keep telling him that he can't have anything by mouth because he's having a procedure but no one knows when. His fever is going up again. I just called the TC on call she said the doctor will be in soon.

Ok so now I need to remember what I have to be grateful for. I still have him, we just went for a walk, we prayed together first thing this morning, we have an awesome God, our family, a ton of friends. My husband is in a room, a very nice room. It has a couch and a recliner and it's quiet. And I'm ever so grateful for this forum.

Love

Barbara,
Hang in there. Hang in there. Hang in there.
Angie1953

Mark tried to end all suffering on his own on Saturday by taking an overdose,I dont know how to feel besides anger right now,why a thousand times i ask myself !

My family thinks he is a hopeless cause,is going to die anyways and think I should just walk away ! I try to give him hope,but I cant do anymore than I am now ! I am angry,but I cannot in my heart walk away !

NEH
Thinking of you tonight. So sorry things have gotten so tough. But perhaps he is getting help that is beyond your ability to give right now....or his ability to hear you right now. He is choosing the path he must walk...you can't choose for him. And maybe this is better for you too.

Things are getting a little rough at our home. Hubby's fluid retention has gone from his ankles, up his legs into his testicules now. Good thing I had read that this could happen (on here), so we knew what was happening. We have doubled up on the lasix and he says he is taking more lactalose. Hospice stopped by and not much in the way of help there. Just mentioned taking fluid out with a needle, but it's not in his stomach really... fluid is in his legs and privates. Also, the local Doc here will not do it anyway. The one and only time they did it, they didn't have the proper equipment...was very messy and not sterile at all, and very painful. Anyway Doc told me he didn't think it was a good idea to do it again...just get a drain surgically installed (which we choose not to do 1 1/2 years ago.) Transplant team (who we consulted with) said no..don't get drain...bad idea. So we didn't.

In the past I could control the fluid retention, as I controlled what he ate, what he drank, no snacks, meds at the right times, but now with me working, he is on his own 10-11 hours a day. Hasn't worked out well for him. Makes me feel guilty that he started going downhill so quickly upon me going to work. What's one to do...have to pay bills. ?? I also say to myself that perhaps this is just the natural progression of the disease and no matter how much I controlled things I couldn't prevent it (But I don't believe it!!)

But...I read about those who have a lot rougher time every time I come on to HW, so will just take it one hour at a time, like everyone else here.

I know there is not much we can do but watch the diet, take the meds, drink water and wait. Still a heartbreaker. He tries to go outside daily when it's not too cold.

I wonder if this is the beginning of the end...or another rollercoaster ride ... up....down....up. Who knows, I guess.

Make the evening be gentle to you caregivers and ill loved ones.
Angie1953

Mike had the leg edema also. For a long time. Til his legs wept fluid. He didn't get the belly kind. They used the two kinds of diuretics and sometimes he got a bag of albumen in ER. But with hospice I don't think you do ER. So it is just going to run its course. So sorry

Hugs
Carol

Yes, Angie, Brian's wife is in surgery as we speak! So exciting that she got her new liver, Im so glad for them, what a roller coaster!

Angie, Im so sorry you and hubby are going thru all this...you need to work, and nothing you could do would make it much better for hubby, God bless you both.

I wish I had a magic wand to make this all go away for you ;(
You're a doll and don't ever feel guilty, you've done the best you can and he knows it.

Big Hugs for your whole family
Mae

what causes edema ? Mark said last night his legs were swollen all the way up his calf's,and he has the kind of veins that stick out on his arms, feet ext,,vampire nurses love him ! Anyways he said that the veins on his feet were so big he thought they could burst !

fluid travels through our body with nutrients across the cell membranes into each cell. wastes come back across the cell membrane and eventually out of our bodies.

When fluid gets into the cells but cannot get out again, the edema IS that fluid...cell by cell, holding onto the fluid when it should not.

Some folks have sodium problems at that same time...not allowing sodium INTO the cells.

We are one giant science experiment. It is a wonder how it all works.

Thank you for the info,,I know heart disease can cause edema in the legs,but wasnt sure if its the same reason from the liver ! Angie,i feel the same as you,its that helpless feeling that gets to me,I am the fixer of all and I cant fix this ! Hopefully Mark will be released from the hospital tomorrow and I can get him to his regular Dr and do something about his feet and legs ! I am kinda scared to see him,and the swelling,i am quite sure it will put me in that "panic mode" for a few minutes ! But I also know I can get through this like everything else,,
Robin

Ongoing therapy would be seeing a psychiatrist and getting on an antidepressant.

Hugs,
Connie

Maybe this is the bright spot in all this...problems may get addressed that were causing him to feel bad, you to feel bad, the family to feel upset, etc.

Sometimes the emergency gets things moving in the right direction.

Best, Carol