DH just told me he has stage 4 kidney disease

[hamchan]

He has known for a month and didn't tell me. He is strongly considering refusing further treatment because he is rapidly losing his quality of life and doesn't want to spend what is left of it getting medical care all the time. I just don't even know how to feel right now.

[bjl584]

I'm sorry to hear that.

Did you have a question or were you just venting?

[Mesem]

ouch, that really sucks.

[dawnwes]

I am very sorry.

Do you have children at home?

Are you worried about finances at all?

I too am wondering if you are just speaking what is on your heart and mind (which is perfectly fine) or if you are asking a question.

[JoeP]

Do you and your husband have anyone close you can talk with for support? Can your doctors recommend a service to help you both navigate the decision processes?

[hamchan]

No questions really. Just an update. My DD is here for three more weeks. I had to tell her something because I was crying for hours last night. It's not a very big apartment. I only told her that he is much sicker than what they originally thought and we don't really know what is going to happen. She is upset. She loves her step dad. Financially, I don't even know. I just don't know. I found a service in Seattle that provides free end of life counseling.

[disneysteve]

He is strongly considering refusing further treatment because he is rapidly losing his quality of life and doesn't want to spend what is left of it getting medical care all the time.

I found a service in Seattle that provides free end of life counseling.

Before he makes a decision to refuse treatment, make sure that he and you understand what that treatment consists of and what he could expect from it. With end stage kidney disease, the treatment is likely dialysis. While going to dialysis 3 times each week is time-consuming, many patients find that it actually greatly improves quality of life because they feel much better. At the times when they aren't getting their treatments, their able to be more active and do more with family and friends. I have one patient who is self-employed and works full time in a physical job except for the hours he spends getting dialysis. If not for the treatment, however, he would have died a long time ago.

So don't be too quick to refuse treatment based on quality of life issues. Treatment might preserve or even improve quality of life.

[bjl584]

Before he makes a decision to refuse treatment, make sure that he and you understand what that treatment consists of and what he could expect from it. With end stage kidney disease, the treatment is likely dialysis. While going to dialysis 3 times each week is time-consuming, many patients find that it actually greatly improves quality of life because they feel much better. At the times when they aren't getting their treatments, their able to be more active and do more with family and friends. I have one patient who is self-employed and works full time in a physical job except for the hours he spends getting dialysis. If not for the treatment, however, he would have died a long time ago.

So don't be too quick to refuse treatment based on quality of life issues. Treatment might preserve or even improve quality of life.

I second this. My Grandfather was on dialysis the last 7 years of his life. He would have died 7 years earlier if not for the treatments. Unfortunately he was too old to be placed on the transplant list.

[hamchan]

It won't restore his vision or help with the constant severe infections which cause him extreme pain and rob him of his mobility. He says he is just tired of spending so much time getting medical treatment and knowing that it won't make a significant difference anyway. He is tired of waiting for more systems to fail. He says he wants to take control of what is left of his life. That said he has not completely ruled out continuing treatment yet. If that is what he decided to do I would not blame him. I hate watching him suffer.

[tulog]

Others have already responded to the medical side, but there are financial items to consider:

- Make sure he has a validly executed will or trust, including advanced health care directives, etc.

- Power of attorney.

- Remove property from any safe deposit boxes he has.

[shaggy]

I'm sorry to hear this news, hamchan. I respect whatever decision your husband chooses to make regarding his future medical care.

[Blessed]

I'm sorry to hear your news. Hugs

[Petunia 100]

I'm so sorry to read this, Hamchan.

[MaryB26]

(((HUGS))) So sorry to hear that this is happening to your husband.
Please start getting things in order like his will, power of attorney, MEDICAL power of attorney, funeral planning, etc.

I know this is difficult to think about right now but you need to think about putting things in your name only like the bills, lease, car, etc. (only if you choose to do so). It will make things easier later down the line. Check with your bank and make sure your account is set up so that when the time comes the bank account will not be "frozen" if it is in his name only.

[hamchan]

I am on the lease and we have a joint account with a credit union. Will there be any issues if both of our names are on there? The utilities are in his name so I guess we should switch those over. We don't have a car.

The counseling service I found for him can help with things like advance directives, and anything else like that we will need. I suppose I should get the contact info for his life insurance. He was planning to increase the amount on it this fall, since he has it through work and that is when changes can be made. What if he stops working though? Will he be able to keep the policy and pay premiums on his own? I am also worried about health insurance because he carries the coverage through his work, and at this time I cannot get it through work.

I think I may have talked him into going on dialysis at least long enough to qualify for Medicare, which he will need to have once he stops working. I am hoping he will just want to stay on it. At least for a little while. He doesn't think he will live that long even if he does everything he's supposed to, and honestly he's probably correct. He's declining extremely quickly. The bone is now infected in his foot despite all the antibiotics they have been pumping into him. The doctors have no idea why he is being taken down so quickly since he manages his weight and blood sugar excellently.

I asked him what is on his bucket list and he said, "I don't have a bucket list." I said, "Why not?" and he said, "because bucket lists are stupid." Gotta love him.