choking

This morning was bad.  It was pouring but it stopped right when I was supposed to pick up my brother for breakfast.  He wasn't downstairs as I had asked and when I got up stairs to pick him up I asked how he felt.  He responded "fine" which is a code word for "not good".  He couldn't make it from the elevator to the car and sat down.  By then it had started raining again.  I asked him if I should just bring in breakfast because of the rain and he look very relieved and say yes.

I brought him back an egg sandwich on a English muffin and a cup of coffee. He started choking on the coffee.  He is so thin I could see his esophagus contracting and he couldn't stop.  He was choking on liquid and I didn't think giving him the Heinrich maneuver would help.  I called for help, it took a long time for someone to show up and by then he had stopped choking.  

His energy level then improved, which was weird.  He had a few bights of the sandwich and started choking again, this time for not as long.  I suggested that he should stop eating and we should go upstairs and he agreed.  I asked him was he choking a lot and said yes and then agreed to my suggestion that he start eating soft food.  I suggested to him that our palliative care doctor was recommending that if he got sick enough that he would need to go to the hospital that he not go, that the nursing home could treat him and make him comfortable.  I also mentioned that there a lot of germs in hospitals.  He agreed.  Then he said ruefully that he might not make it to his 70th birthday.

A nursing assistant came to get him and I had to completely lift him up from his chair because he didn't have the strength to stand.   After I got him seated in his usual sitting chair I went to talk to the nurse.

I asked him to be put on soft food until he could get a swallowing test.  This is a major decision because at this nursing home, once they put someone on soft food they don't take a person off.  I also said I wanted him to use his walker until he absolutely couldn't do it anymore.  I asked that they call me if he went into a wheelchair or became bedridden.  

My next step is to call our palliative care doctor.  I am so, so sad.

Leukemia

It's been a while since I last wrote and much has happened.  My brother now has leukemia

It was first noticeable when he started losing a lot of weight, almost two years ago.  He had a bout in the hospital from pneumonia, and just never really got his health back.  He lost about 30 lbs, and was diagnosed with leukemia in the summer of 2017.

But medication has helped. His red blood cells and hemoglobin are low and he is getting shots that were seeming to help.  His white blood cells started going up and he is taking medication that seems to help that as well.  His spirits were good and he was still engaged in the world, my husband and I could talk to him about politics and current events.

In the last few months however, things look like they are getting worse.  My guess is that he weighs under 100 lbs, and frankly, he looks like a concentration camp victim, like a skeleton.  He still manages to use a walker, but barely.  He can no longer walk from the elevator to the car waiting outside without resting when we take him out.  He has developed ulcers on his legs and feet, which I think causes him some pain.

In the last two weeks he has lost that zest for life and seems rather drawn in, only only emerges a few times as we spend time with him. 

The staff wanted instructions on whether he should be sent to hospital if an emergency develops. After intensive discussion with our palliative (not hospice) doctor, we are recommending to him that he not go to the hospital because he will get deconditioned and they are not going to be able to cure him.  The idea is to give him oral antibiotics and latex at the nursing home if he should need medical attention. 

This was a very hard decision, and I still need to run it by him.  I am not looking forward to that.  This is so hard a decision to make for yourself, let alone for another person, who you love. 

it's getting hard to write

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.

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.

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.

how to survive in a nursing home

I took my brother out tonight to Dunkin Donuts.  It was not our usual routing.  I took him out by myself, and an evening earlier in the week because my husband and I are busy tmorrow night.  My husband had a work event tonite, so he didn't come.

This time, I ate at home first.  I was really hungry, and preferred to eat something healthier than I could get a Panera, which is where we usually go Wednesday nights.   WE both had coffees (I was super tired and afraid of falling asleep as I drove back to my house) and to my surprise, my brother ordered a donut.  He wouldn't pick it out, he made me do it.

He started talking about the different nursing homes he had stayed in and started sayiing how much better the previous homes had been.  I asked him why he thought that way, and said I thought he would have been dead by now if he has stayed at them, that they had all almost killed him several times through neglect.  He said the other nursing homes had been better about showers (which may be true), but I said I was surprised he said t hat because at least they shaved him at his present home.

Lately he has been voicing more discontent.  I think he is suffering from not having people to talk to.  As he puts it, all the patients at the nursing home are senile and can't converse decently.  I want to remind the reader that my brother's intelligence is uneven, he can be quite articulate about certain things and then can be tongue tied and stopped in his tracks when he wants to speak, especially about emotions and any kind of interaction.  It is very difficulty to keep up any kind of conversation with him.

But he said something that really caught my attention.  He said that the way to survive a nursing home is to not care.  That's what he said "not care". I knew immediately what he meant and it made me feel badly for him.

I am fortunate that he, up to now, has not gotten irritable about being placed in a nursing home.  In fact, when I drop him off, he usually says something jovial to the receptionist, like, as he said tonight,"oh well, back to reality".

hearing aid and other maladies

A couple of weeks ago, I was woken up by the nursing home at 4:20, to let me know that my brother had a head cold, had thrown up, and that his temperature had been over 103, but had gone back down after receiving aspirin.  I asked what his blood pressue was and it was 101 over something.  Anything under 100 is cause for alarm and we start thinking of sending him to the emergency room.  However, he seemed better and I reminded the staff to give him a lot of fluids so he wouldn't get dehydrated and go into bad afib.

Of course, I couldn't sleep, and got up and went to work.  After work, I went to the nursing home and found him curled up in a fetal position in his bed, sleeping.  They raise one half of his bed so he doesn't choke on his vomit, and rather than sleeping that way, he chooses to curl up.

I immediately asked his nurse to take his vitals.  I woke him up and he asked me to stay with him.  His blood pressure was under 100, and the nurse came in to get him to drink, some water, which he had refused earlier.  He turned off the light, and asked me to say with him, which I did, sitting in the dark for the next hour.  His breathing seemed labored, so I asked a CNT to take his vitals again and his blood pressure had gone up to a more normal level, so I left.

I called the next morning and asked that the nurse practitioner see him.  She herself was home with the stomach flu but got a colleague to see him. I went back that night to see him, and although he was very congested, he felt a lot better, and I was very relieved.

A couple of days later, my husband and I took him out for dinner and his cough was very, very bad.  The next morning I called the nurse practicioner again and asker her to listen to his lungs, that I was worried he was developing pneumonia.  She orderd him antibiotics, and since then he seems to slowly be on the mend.  However, he hasn't been moving around a lot and seems very weak, and his balance is off.  I know I need to get over there and get him moving to rebuild up his strength, but I haven't done a very good job of doing that.  The weather has been wet and I am reluctant to keep him outside for very long, just to get him in and out of the car so we can go out to eat.  He has been stuck inside for at least two weeks because of his cold.

Meanwhile his hearing aid has gone on the fritz twice in the last two weeks.  The first time was because it needed a cleaning.  The second time was today, and the issue was the nurse who put in the battery didn't check to see if all the adhesive from the orange tape that comes with the battery had been scraped off.  Cleaning the hearing aid and watching that the battery is accurately inserted are simple tasks, and it infuriates me that I can't get the nursing home to deliver on it.  My brother becomes very isolated, and very crabby, when he can't hear.  It makes me feel this is just one more reason why I can't leave town for more that a week and a half at a time.