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.