It's getting harder to write this blog as my brother gets sicker. We received his diagnosis, chronic leukemia. We haven't sat down yet with a hematologist because we are in transition between the first and the second. The first, frankly, should probably retire. I know that sounds ageist, but I figure I can say that, he is about my age. He couldn't stay focused in a discussion and was quite forgetful. He was disrespectful and kept on telling me I shouldn't expect to understand anything, that as his job and that many other doctors didn't understand hematology. That may all be true, but I wasn't about to trust a complete stranger, who wanted to do a lot of intervention, to make the sole decisions. Furthermore, when he started talking about my brother taking mystery shots, I asked if he could have them done in the nursing home, and the hematologist became quite upset and started muttering about I would be on my own in obtaining the medication. I think this is because he wanted to make money off the office visits.
So I was able to get a referral from one of my husband's good friends who is a doctor at Northwestern Hospital. She seems to be highly regarded, works out of Evanston Northshore, but we couldn't get an appointment until August 2. Meanwhile, I also retained a palliative doctor, another woman, who I really like and seems ready to help manage my brother's care. This is supposed to be the job of his internal medicine doctor, who seems to show up once every 3 months because that's all that Medicaid will pay for. Medicaid will pay for monthly visits from the palliative care doctor. I am waiting for a full consultation with her until after the visit to the second hematologist, and are informed of the various choices in treatment, which makes sense to me.
There is a very big issue about how much to tell my brother. I don't think he has the emotional where with all to deal with cancer. The general consensus so far is to tell him he has a serious blood disease that we are going to try and treat, but to avoid treatments that will cause him discomfort. I am not really sure where this new hematologist is at on this issue, and the palliative care doctor offered to call her and chat about it. I am going to have to just trust both of them, I can't control much.
My brother has good days and bad days. On bad days he can get pretty grumpy. I take him out for dinner with my husband on Wednesdays, and I can tell when it's a bad day because he looks very tired, holds his head in his hand, and picks fights. Sometimes when we walk into the parking lot, he just stops walking and looks distant, and we can't get him to budge. I am beginning to think this is because he is not getting enough oxygen to his brain.
Last weekend we took him to see Wonder Woman and we were all pretty jolly because it was the first time in a long time that he was feeling well enough to take him out beyond dinner. So it was a real surprise when he got out of his movie seat and went into the trance again. He thinks it is his heart (it probably is) and I think it really freaks him out. That episode really scared me, but after resting for 5 minutes, he seemed ok.
He is on a lot of lasex and it is causing him to loose control of his bladder a lot. He needs to have his pants changed every day, and I need to ask the nursing home to change him more often. He also has fat concentrations under one eye that may come from the diuretic (looked that one up on the internet; he is feeling so poked and prodded I don't want to have to take him to an eye surgeon unless we have to).
I have been crying a lot. I am very fearful about what the future is going to look like and how long it is going to take for him to die.
But today was a good day. He was feeling pretty good and even remarked how surprised he was that he wasn't feeling as poorly as before. I will take those good days.
Saturday, July 15, 2017
Friday, May 26, 2017
situation is not good
This week my brother went for a full cat scan and also a bone marrow test. I am not crazy about his hematologist, he seems like a caring person, but also not focused and maybe a person who should have retired already. He was recommended by my brother's nursing home doctor, who I hardly know, and who hardly knows my brother.
There is something very wrong with my brother's blood and his spleen is enlarged. There appears to be possibly something wrong with his lymph glands too. The results from the bone marrow test don't come back until Wednesday supposedly, but I don't believe it. Things are slowed down because of the holiday, but the person who did the test said the doctor would get the results today. Of course, this doctor doesn't work on Fridays. Monday is a holiday and the only day he is working is on Thursday and they are going to have to fit him in, if they can.
I am really concerned about how to communicate whatever illness my brother has to my brother. I'm not sure what his cognitive abilities are in regards to the possibility of having a serious condition that can cause mortality. I am also concerned because he is living in a nursing home and I'm mainly not going to be there if he needs me.
I have already contacted a palliative care service because I am getting a sense that these doctors are going to want to do full intervention no matter what. My main interest is keeping my brother has comfortable as possible, and I am concerned that I am not going to intervene enough. My brother already has advancing congestive heart failure and can hardly walk, he is on his way to a wheelchair.
My husband has wisely counseled me to contact professionals who have experience so the burden of making these decisions, although mine, can be shared with others.
There is something very wrong with my brother's blood and his spleen is enlarged. There appears to be possibly something wrong with his lymph glands too. The results from the bone marrow test don't come back until Wednesday supposedly, but I don't believe it. Things are slowed down because of the holiday, but the person who did the test said the doctor would get the results today. Of course, this doctor doesn't work on Fridays. Monday is a holiday and the only day he is working is on Thursday and they are going to have to fit him in, if they can.
I am really concerned about how to communicate whatever illness my brother has to my brother. I'm not sure what his cognitive abilities are in regards to the possibility of having a serious condition that can cause mortality. I am also concerned because he is living in a nursing home and I'm mainly not going to be there if he needs me.
I have already contacted a palliative care service because I am getting a sense that these doctors are going to want to do full intervention no matter what. My main interest is keeping my brother has comfortable as possible, and I am concerned that I am not going to intervene enough. My brother already has advancing congestive heart failure and can hardly walk, he is on his way to a wheelchair.
My husband has wisely counseled me to contact professionals who have experience so the burden of making these decisions, although mine, can be shared with others.
Sunday, May 7, 2017
being mortal
I titled this posting Being Mortal because I'm reading the book by Atul Gawande. It's terrific.
I'm reading the book because my brother has taken a turn for the worse since New Year's. He started losing weight, and he's now lost about 20-25 lbs. He has lost his appetite. In March, there was a flu epidemic in the nursing home, and he caught the flu. His congestive heart failure started acting up, and then he got pneumonia. He has never recovered, and can now walk about only 10-15 steps without having to sit down. I am afraid, that unless things change, he is on his way to a wheelchair.
It was difficult to get him the proper medical attention in the nursing home. There is a very good new nurse practitioner, but she was dealing with an epidemic in the whole nursing home. The building was on practical lock down for several weeks, they had to stop all activities, and many patients were confined to their room, including my brother.
My brother has a new doctor, too, and the doctor was on vacation for 2 weeks. After calling twice, I got his attention by asking if my brother was ready for hospice. Since my brothers hemoglobin is dropping, the doctor suggested that I make him an appointment with a hematologist, which I have done, the appointment is this coming Thursday. It took a while to have the in house cardiologist see him, he was supposed to come last Wednesday and didn't show up. After several call, he showed up late on Friday, and then called me and told him my brother was fine. I asked him why he thought that and it was because my brother told him he was ok, and that he could stand up from his chair. He did not ask him to walk. At least he ordered a electrocardiogram so we can tell how strong his heart is. I am not impressed with this doctor, but willing to give him a second chance because ha makes house calls into the nursing home, which I think might benefit my brother.
There is concern that my brother has an ulcer or colon cancer, but his stool sample cam back negative for blood and cancer. However, for the first time today, he complained that his stomach hurt. The weight gain is my main cause for concern, if he continues to not eat, he will die fairly soon.
Back to Atul Gawande. After reading just the first part where Dr. Gawande talks about the lack of clarity and planning for death, I am more committed to hospice, although that all depends, of course, on my brother's diagnosis. But I had an epiphany that there is no discussion between the medical staff, patients, and families, about what the purpose of medical care is in a nursing home. What are reasonable goals and objectives? What does it mean when someone is confined to a wheel chair and loses mobility in a nursing home? Basically it means you are sitting in a wheel chair in one place 24/7 except for going to the dining room and sleeping in bed. In this case, should heroic measures be taken to continue life? If my brother ends up having some kind of terminal condition, I am going to need to start thinking about all this. For instance, if he has cancer, do I get him chemotherapy? Does he have the emotional and physical strength for it? It is a horrible responsibility to have to make these kinds of decisions for someone else's life. I am going to seek the advice of experts in palliative care.
Meanwhile, for the first time in about 10 years, when he broke his foot, my husband and I took him for a walk in his wheel chair. We went to Dunkin Donuts and he refused anything to eat, including coffee or a milk shake. But I think the walk really cheered him up and I was very happy that we did it.
I'm reading the book because my brother has taken a turn for the worse since New Year's. He started losing weight, and he's now lost about 20-25 lbs. He has lost his appetite. In March, there was a flu epidemic in the nursing home, and he caught the flu. His congestive heart failure started acting up, and then he got pneumonia. He has never recovered, and can now walk about only 10-15 steps without having to sit down. I am afraid, that unless things change, he is on his way to a wheelchair.
It was difficult to get him the proper medical attention in the nursing home. There is a very good new nurse practitioner, but she was dealing with an epidemic in the whole nursing home. The building was on practical lock down for several weeks, they had to stop all activities, and many patients were confined to their room, including my brother.
My brother has a new doctor, too, and the doctor was on vacation for 2 weeks. After calling twice, I got his attention by asking if my brother was ready for hospice. Since my brothers hemoglobin is dropping, the doctor suggested that I make him an appointment with a hematologist, which I have done, the appointment is this coming Thursday. It took a while to have the in house cardiologist see him, he was supposed to come last Wednesday and didn't show up. After several call, he showed up late on Friday, and then called me and told him my brother was fine. I asked him why he thought that and it was because my brother told him he was ok, and that he could stand up from his chair. He did not ask him to walk. At least he ordered a electrocardiogram so we can tell how strong his heart is. I am not impressed with this doctor, but willing to give him a second chance because ha makes house calls into the nursing home, which I think might benefit my brother.
There is concern that my brother has an ulcer or colon cancer, but his stool sample cam back negative for blood and cancer. However, for the first time today, he complained that his stomach hurt. The weight gain is my main cause for concern, if he continues to not eat, he will die fairly soon.
Back to Atul Gawande. After reading just the first part where Dr. Gawande talks about the lack of clarity and planning for death, I am more committed to hospice, although that all depends, of course, on my brother's diagnosis. But I had an epiphany that there is no discussion between the medical staff, patients, and families, about what the purpose of medical care is in a nursing home. What are reasonable goals and objectives? What does it mean when someone is confined to a wheel chair and loses mobility in a nursing home? Basically it means you are sitting in a wheel chair in one place 24/7 except for going to the dining room and sleeping in bed. In this case, should heroic measures be taken to continue life? If my brother ends up having some kind of terminal condition, I am going to need to start thinking about all this. For instance, if he has cancer, do I get him chemotherapy? Does he have the emotional and physical strength for it? It is a horrible responsibility to have to make these kinds of decisions for someone else's life. I am going to seek the advice of experts in palliative care.
Meanwhile, for the first time in about 10 years, when he broke his foot, my husband and I took him for a walk in his wheel chair. We went to Dunkin Donuts and he refused anything to eat, including coffee or a milk shake. But I think the walk really cheered him up and I was very happy that we did it.
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