DH and I have had a lot of discussions about various medical tests that we won’t have for him, or treatments that we won’t do. I think most caregivers wrestle with trying to make those medical decisions, weighing need against the stress and/or discomfort that tests or treatment would cause our spouses.
DH’s medical decisions are complicated by the fact that he has a pancreatic tumor (not cancerous yet, but can become cancerous) that causes almost constant nausea. He also has cell changes in his bladder, and this causes pain and bleeding—and can also become cancerous. Both of these things are supposed to be checked every six months, with him being put to sleep and having scopes and sometimes biopsies. So far we aren’t doing that, because the twilight sleep medication that they use on most people does not work on DH. He has to be fully anesthetized for each test, and that is not recommended for people who have dementia. In addition to that, these tests are not exactly a picnic for someone who is able to understand everything that is happening to them, let alone someone with dementia.
I would just say, “Okay, we just won’t do any more tests”, except that these things can continue to cause more and more problems. At some point DH won’t be able to tell me when he needs more nausea medication or something for pain. And I really fear him being agitated in a nursing home and being put on psych meds when what is happening is that he is in pain or has nausea—and those things aren’t being treated. Imagine being in severe pain and not being able to tell anybody! That would be physical and mental torture. And these conditions will persist long after DH is able to communicate additional symptoms.
We have agreed that if either of these becomes cancerous, we will not do anything like major surgery or chemo. But if that happens without having the regular tests to confirm it, we won’t know that we need to treat the increasing pain and other symptoms that it would cause. And we couldn’t call hospice when we needed to, because we wouldn’t have a diagnosis to justify it.
I am so afraid of what the future holds with these two added complications. Mostly I fear DH having worse pain and/or nausea and not having it managed well. For several years into our dementia journey, I kept telling myself that at least DH was not suffering physical pain. Now I can’t tell myself that. He is in pain every day, and the nausea is even worse.
Our PCP doesn’t feel up to following such a complicated set of conditions, and each specialist that we see is nearly an hour’s drive away from where we live. Some days DH isn’t up to the drive, let alone any sort of examination. I want to provide good care for DH, but I don’t know how. I know that we’re not all doctors here, but if anybody has any advice, I’d sure like to hear it. What would you do? Sometimes I think I’m so close to this that I just can’t see clearly.
I went through this with my sister when her husband was in his last months. He had bone on bone so was in pain. But she was afraid to give him vicodan for fear of him becoming addicted. My argument - who care. He is 85 years old and in pain and does not have long to live. Who cares if he becomes addicted! The hospice nurse told her to give him one at bedtime so he could sleep better and try Tylenol during the day. She also didn't like giving him vicodan cause it made him constipated. Easy solution: Kiwi would cause a BM.
My suggestion: keep giving him what he normally took when he could tell you - both for the nausea and pain. At this point if he becomes addicted, who cares? Keep the routine of medications unless you see reason to increase or decrease. At some point, his brain may not be sending messages that he is nauseated or in pain, thus it will not be necessary.
Jan...medical decisions can be very tough...and there is not an easy answer..do you treat or not treat? do you sacrifice one area for another?? My dw has breast cancer...decision...forget about it...unless pain occurs. My dw also has trouble swallowing, breathing, her stomach burns all the time....decision?? still considering options. I will be buying a dart board soon to help me with the decisions...I find that flipping a coin is becoming to hard to do, since it always lands on one side or the other...I need a third choice, such as landing on its rim....so a dartboard will work better......(two out of three?? )) I am so exhausted that I want to hire a professional decision maker.....
JanK you don't mention the age of your husband. Is it possible that if the cause of his pain and nausea can be found it can be treated in a non-invasive way to make him more comfortable.
jan and phranque. I agree the decisions are tough. I was talking to my daughter this evening and I told her I was planning to put DNR on her dad's chart if he has a hospital event and if he got cancer no treatments. I think it is harder for children to accept these decisions than us as the caregivers because no one else, but another caregiver, really knows how much care is involved.
jan you mentioned you and your dh discusses the issue of cancer treatments, etc. I could not do that with my dh. He would fret about it and dwell on it and overall I would be better making the decision myself with my kids. He has signed the paper giving me that right in the event he is unable to decide for himself and he no longer is able.
JanK--I see 3 possibilities here for you. 1-- Do as Charlotte suggested and keep him on the meds to control the nausea and pain, adjusting when you deem necessaary--you can tell after while because you'll know the "signs". 2-- Consult both specialists and tell them your concerns about the testing, anesthesia,and future diagnosis changes. Ask them to suggest ideas to handle/coordinate this. If appeal for help falls on deaf ears, tell them what your 3rd choice is--do nothing but palliative care.