Amy:
I'm starting a new thread here so not to impinge on your journal. As caretake to Gil, this is my first experience with caring for anyones serious medical needs. When my children were tiny and needed shots , I handed them to the nurse and left the room because it made me quesy.I agree- we are almost nurses now. When people talk about how hard it is to sustain love- it is all the pretty things. The ability to do what you are doing is truly love- it has brought out internal resources that are enabling you to care for John. Straight out- I'm not from the Ozarks but from Upstate Hardscrable New York and a social worker for 37 years.So here it is - This same enabling ,I believe, is keeping you frm accepting outside help.
Hospice or whatever is in your home town has the professional resources that John and you need. They also come in with a different perspective because they are outsiders. Even though John doesn't want this- he truly is not the one who should be in charge at this point. The level of care that is evolving will put him back in the hospital and not in the beloved comfort of home.You can not continue to do it all.Geting the help he needs is your strength not your weakness.

caring about you and John

Paula

Paula, I have been thinking just what you are saying for the last week. Today just about decided it for me.Yesterday afternoon, we got our family Doc to round up some IV fluids for us and my DIL [RN] hooked him up, then taught me how to change the bags and remove the cath at the end . The liquids perked him up and he felt better for about 5 hrs., then he had 2 small seizures early this am. I could only hold him until they quit and we spent about 30 min. on the floor before I could get him back in bed. I was on my way to call 911 and again, he begged me not to. To quote him "I do not want to die in a hospital". So I think that I will see about having a Home Health nurse come here so that he can stay at home. In his mind, the hospital represents, tubes, constant probing, noise, etc., etc. and I think he is past that stage. He has known for a while that his cancer is not curable, and he knows that his condition is worsening. The selfish part of me wants him to continue to fight, but I know that is not fair to him. I called his sister in Minnesota today and suggested that she might want to come down and spend some time with him- she's arriving Monday. We'll take it one day at a time from there. Thank you for being in my corner! Amy

Amy, what a heartwrenching day it must have been. Andy and I are sending good strong vibes your way, hoping for the best for both of you.

Andrea

Amy- I'm always in your corner. Is John in pain? Why the seizures?. Thank goodness for you daughter in law. I think about you and John every day.
Your reality is the future that all of us on this web site are hoping will not happen.
The love that you and John have- the stories that you share of your dailey life- Your ability to reach out and tell what you are feeling, your great sense of humor- and your pain- the helplessness to fix this-
I tear up as I write this. baby steps and know that I care.

Paula and Andrea, I am going to keep posting in my journal, where someone can choose to read or not read. I don't have a problem with getting imput there, so lets switch over. Amy

On second thought, I do think the title of this thread "Outside Home Care" is an important one for many caregivers, and maybe should be listed as a Major topic to post under. I have amassed a tremendous amount of knowledge over the past 2 yrs. and realize, still, how little I do know about caring for someone with cancer at home. It might even be a good Chapter addition to the OCF hand bookbook.

Perhaps in this portion we might also make a list of things to look for/ask for when setting up home health care.
You will have most of what you need already in place by the time you need to call someone in, and some of these seem like no-brainers...but some of the things that immediately come to mind are...

Designated space (on a convenient level close to a bathroom and food preparation area) for the patient's bed with enough space around it for an IV pole and a small overbed table.

extra supply of linens specific to the patient and caregiver.

Portable commode

urinal

book case for medicines and light reading material

bedside chair which is comfortable to rest in.
Because the patient will need to get out of bed, and the caregiver will need to sink into it occasionally.

Small icebucket to keep meds and feedings fresh and save a few steps to and from the kitchen. (You don't think this is important, wear a pedometer for a few days!)

Sufficient lighting in this room/space for someone to start and maintain IV access, hang the correct meds, read fine print, etc.

Chime in here folks, I am running out of ideas...

Andrea

I used a plastic under the bed storage container to keep medical supplies etc in. It freed up table/bookshelf space and the area didn't look so cluttered.
My thoughts and prayers are with you Amy.
Linda

Well, the above falls squarely under the heading of "What I wish I had known then"!![realizing that you can't fully know ahead what you will be dealing with] Here are some things to add to the above if the person you are caring for is failing
1. If patient and caregiver are married and have individual credit cards, stocks, bank accounts, etc. those issues need to be addressed ASAP. It has taken me 3 days to get a simple Power of Attorney recorded at the Courthouse.
2. I did not know until last week [dumb me] that only one Doc can be in charge of narcotic perscriptions- John's primary Doc is in LR-3 hrs. away, Chemo Doc is 1 hr. away and family Doc, who has been out of this loop, is here. So we have to pick one to deal with from here on out.Altho we both have "Living Wills"
I need to deal with talking to John about a "Do not Resuscitate" order in the event his systems start to shut down.I don't want to do this, but---
I need to be sure his son understands the agreements we have reached. I need to know the protocal if John gets to die at home-who do I call ? Altho these are gruesome things to contemplate, we all need to prepare for them.
I know that while I am usually good at spur of the moment crisis solving- if I have to confront this- I won't be very good, and the only way I know how to deal with it is to plan for the eventuality as best I can. My Dad always told me to "Get my ducks in a row" so you can handle the situation. Amy

Amy,
There are many ways to go about the DNR issue. One is to get a form from your doctor (doesn't matter which one) and fill it out, have him sign it, you and John both sign it, and then make a copy for his hospital records, and frame the original, and hang it where anyone coming in the door (like visiting nurses or EMT personnel) can see it. That way, if for some reason you are out and someone needs to know about this issue, it will be covered.
The other thing is, there are varying degrees of DNR, one of which includes a DNI component. For instance, if the problem is just a breathing issue, would you want John to be intubated? If it is a cardiac issue, would you want CPR to be done?
What about feeding and IV hydration? These are questions you will be asked, and it is better to have "thunk" (I never get that right anyway, thinked, thought....) them over beforehand when the question hits you.
The kindest thing my parents ever did for my sister and I was to get these issues dealt with while we were all still able to talk them through.
Having said all this, I sincerely hope that it will be a long time before you actually have to use any of these pieces of paper, but it is good to have the writing of them behind you.

Andrea