Need to vent

Sandi1

Hi, as many of you know, my husband has been in and out of the hospital this past month.  his last hospitalization was because his coumadin level was very high, the dr sent him to the ER for plasma and vitamin K.  well now, it has happened again, and my husband absolutely refuses to go to the hospital - so the dr has compromised with him and is giving him Vitamin K and no coumadin.  He explained to me, that this keeps happening because of the mets on his liver.  He also explained some other thing that happens because of the high ammonia level in his liver (i can't remember the name of it), but he said, it will make him sleep alot and be confused, and that they are concerned about mets to the brain.  He does sleep most of the day, he is only awake for about 2 hours a day - and i really have to fight with him to stay awake for that amount of time.  He can't sleep in the bed because he says the pain is too intense, so he sleeps in the chair in our room, which causes his head to fall to the one side and now he has a sore neck.

I really don't know what to do? i feel so alone - everyone says they want to help, but when i ask they are always busy.  I may have to have my sister come from Canada to help me. I don't want to jinx things, but this may be the end - i just can't see him recovering from this, and if he does he certainly won't be the same man i married.  oh i forgot, he is having difficulties eating, the just the smell of food makes him throw up.  He is living on Ensure, applesauce and yogurt.  when he tries to eat meat or anything that solid he ends up throwing it up.

i guess i need help, i'm going to have to do something. I am trying to look after him and go to work full time, but something has to give - i'm just not able to do this anymore.  i'm exhausted all the time, half the time i don't even remember how i got to work - i am so consumed with looking after him that that is all i think about.

well, thanks for letting me vent and listening

Sandi

 

LindaK.

Oh dear

Sandi, I am so sorry you are going through this.  You do need help.  Please ask your husband's doctor (or someone on the staff who knows about other care) if he can go to another facility or even have hospice come in.  Hospice does not always mean the end.  You may not have a choice if you have to go to work.  Can you get FMLA?  I know the cancer center we go to has social workers to help with situations like this.  You may have to call 911 to get him to the hospital to get stabilized.  He may be mad at you and "refuse" to go anywhere, but you have to be realistic if you can't care for him at home.  I'm sure some of the other caregivers on here can give you more advice.  It's so hard to see our loved ones in such bad shape.

Linda

Hopeful0524

Sandi

This is way too much for just you.  You do need help.  There is help out there, like respite, or just a social worker.  Even if it's just a couple of hours in the morning, and then a couple in the evening. 

It can be oberwhelming for you emotionally and physically, so talk to your doctor, they can usually get you some phone numbers for you to call.

 

Good luck to you, and keep on venting.  That's what we are here for.

TS

Lovekitties

Dear Sandi

I am so very sorry to hear that things have gotten to this point for your dear hubby and yourself.  Having been both patient and caregiver to a person with cancer I understand.

First your hubby's status.  It is not jinxing it to discuss with the patient their wishes regarding treatment and end of life care.  Has he ever executed a Living Will or an Advanced Directive?  I know for my sister, when she was hospitalized the social worker asked if she wanted to do one.  She did.  It specified how she wanted to be treated and not treated.

With him not eating solid foods, the ability to control the coumadin levels is near impossible.  My sister was on it as well, and was tested weekly.  We could always tell when she had changed her eating habits one way or the other.

If sleeping in the chair brings him the most comfort, that is ok.  Perhaps one of those collar pillows would help with the neck issue.

I beleive he is at the point in his fight, that you just need to do what it is that brings him the most comfort.  It is not easy to stop pushing and trying everything possible, but there comes a time when that is what is best for him.

Now, about you.  You absolutely need help.  Your hospital and/or his doctors should be able to get you in contact with resources available in your community.  If it is his desire to be at home, then possibly your insurance will cover some in home nursing or comfort care support.  If your insurance does not cover that, there are still other resources such as Hospice.

While in-home Hospice care is not 24/7 help, they can get anything needed to make him comfortable from equipment to meds.  The major concession with Hospice, is that he is no longer receiving treatment for the disease.  From what you have said, it sounds like that is the case already.  You can call them and explain your situation (medical and financial) and they will gladly tell you what they can do to help.  I found them to be incredible assistance for my sister.

There is help out there.  You just have to ask the right people to get you to the right resource.

As the caregiver of a loved one, it is so very difficult to seperate the doing all that can be done to fight the disease and doing only those things which can bring comfort.  Unfortunately, many of us get to that point.  You must see it as an expression of your love and devotion to do what you feel he wants and needs to be comfortable.

Much love and prayers for you both as you travel a very difficult path.

Marie who loves kitties

 

Trubrit

My heart weeps for you, Sandi

This must be the ultimate struggle for both you and your husband.

I know you know there is no 'jinx' in any of this. What happens will happen, regardless of what you say or think. 

I agree that you should look into Hospice care. As Linda said above, it does not always mean 'the end'. In fact, my wonderful friend, Judi, works in Hospice and she sees people walk out and never come back. 

Loving a person so much makes us fear losing them, but watching them suffer is a pain that is almost equal. 

I will pray for your husband, that he will find peace and some semblance of comfort. And I will pray for you, that you too can find peace, and that you will find a way to ease your load. You need to be strong and healthy for your man. The rate you're going, you will be sick and of no help beofre you know it. 

I pray that you can take a moment of your time and meditate, or just listen to soothing music, so that you can bring peace and energy into your life. 

I wish I could physically lift your burden. Everyone here does. But know, we are with you in spirit. 

SUE

UncleBuddy

Aw, Sandi....

I am so sorry that you are going through all of this. I don't understand why the doctors don't switch blood thinners. My brother was having the same issues. He also has mets to the liver and lungs. They tried to put him on Lovenox shots which has no blood testing. My brother couldn't do it on his own so they ended up putting him on Xarelto. He doesn't have to do weekly blood tests and he has done well on it so far. It does have drawback, but you can speak with his doctor to see if it's an option. Coumadin isn't for everyone.

 

You need to start taking care of yourself and getting people in there to help you. I got very sick because I was trying to do everything myself for my brother. If you don't take care of yourself you are of no use to your husband. Do you have any family or friends nearby who can give you a break? Can you take a leave from work? My brother's doctor's office has a nurse manager and she looks into getting any extra help that is needed. I am in the process of moving my brother and dad closer to me and their doctors. It will make it easier for them to get services to help them out.

 

Good luck.

 

Lin

 

PS I forgot to tell you, my brother's coumadin levels were so crazy, they were off the chart. They didn't register on the machine at the hospital.. He ended up having clots in the lungs because of it, which had to be removed surgically. We almost lost my brother. He had left that hospital still on coumadin and ended up being hospitalzied again. The local hospital said there was no way they could leave him on coumadin because it wasn't working. They had him on Lovenox in the hospital and tried teaching him how to inject himself, but he's slow and couldn't do it. That's why he ended up on Xarelto which is working fine for him. So please look into other blood thinner options for him!!!