Caregiving Journal 16

Yesterday was.....hard to describe, hard to live.....emotional in nearly every way possible.  Frustration, tears, laughter, more tears, despair, fear, gratefulness, deep love.

Hospice is coming.  When I asked the doctor for Hospice it didn't hit me what I was saying or what it will say to Mom to have them helping her.  Only last night did I realize that asking Hospice to come is saying, "You aren't going to get better and we are here to help you accept that and to ease your way."  I've known that Mom wasn't going to get better but she hasn't said it yet.  Even yesterday, after a tough day, she said to me, "I'm going to get better, I promise".  In her heart she must know that she is failing, but she won't admit it to us.  Maybe she doesn't want us to be sad or worry.  She asked me while she was in the hospital if I worried about her and I told her I did and that my brother did, too.  She replied, "I don't worry".  She never has been a worrier.  If there was any time to worry, it would be now, but she isn't worried.  She is afraid of falling and under that fear there might be a fear of something else, but she hasn't said.  I think today I will ask her if there is anything she is afraid of.

Yesterday morning Mom's oxygen levels were low, according to the home health nurse.  She called Mom's doctor.  The office said, bring her in at 3:30.  I got a call at 2:30.  I'd been home for 1 hour, after spending all morning with Mom and the nurse and my brother.  The worry was pneumonia.  I didn't want to take my Mom to the doctor, but this is the reality of modern medicine.  I longed for the days when the doctor would come to you, carrying his bag, leaning over you in the bed with his stethoscope in his ears, touching your body to feel what might be wrong, asking questions, considering answers, writing out a prescription.  Yes, doctors didn't know as much as they do now, but the personal touch was medicine, the doctor who knew you was comforting and sometimes that was better than pills.

It was difficult to get Mom to my car.  She is so weak, she can walk with the walker but she is afraid she will fall and panics a little.  The stairs from house to sidewalk were frightening for her but we got her down them.  The seat in my car was high (I have a small SUV now) and I had to nearly lift her, but the strength of adrenaline kicked in for me and as my brother looked on helplessly, I got her in, along with her catheter bag, which has become a part of her body now.  I would suppose my brother could have carried her, she is so light, but he is so unsteady on his feet that he would have zigged when he should have zagged and ended up falling with her in his arms, so it was better this way.

At least at the doctor's office there was a wheelchair available.  My brother happened to pick one that was like a bad shopping cart.  One brake didn't work and the "flippers", as I call them, those things you put your feet on, squeaked like a pig in distress every time we had to get them out of the way. We didn't have to wait long, the young nurse of the substitute doctor, Dr. Vasquez, (Dr. Fabio Vasquez) was gentle with Mom, checking her oxygen and her blood pressure.  We joked with her about the doctor's name and how much teasing he's probably had over it.  She said he didn't have the romance novel hair, but that he did have the lovely Latin accent.

It turned out that Dr. Vasquez was a sensitive man.  Mom noticed his eyebrows going up and down as he looked at Mom's chart and I described the litany of the last several weeks.  She said, "The doctor looks perplexed."  I replied that it could merely be that Latins have expressive eyebrows and we all laughed.  If there was a man that Mom should have found good looking, it was him, but he did not meet her tall, dark and handsome criteria--to me he was beautiful inside, his eyes conveying deep concern. He listened to Mom's heart and breathing, his eyes telling me that what he was hearing wasn't good.  But he didn't convey any of this worry to Mom.  He sent us down for blood tests and a chest x-ray.  The blood test was easy, a little squeak from Mom when the needle went it.  And then the ordeal of getting the chest x-ray.  Have you ever wondered what it would be like to stand in front of the x-ray panels, hold your breath for a beat and then have to do it again, when you can barely sit upright in a wheelchair, when it is nearly impossible to get your pajama top off and put on a smock, when your daughter and the tech want you to stand and your legs will barely hold you, when you are deathly afraid of falling?  But Mom did it, twice.  I vowed at that moment, never to put her through going to the doctor again.  She had reached her limit and I had reached the point that I would be able to be strong in my refusal to bring her in again.  No, my brain screamed.  No, my heart begged.  Never again.

Back upstairs to see what the doctor found on the x-ray.  There was pneumonia.  He would prescribe an antibiotic, but it would likely cause diarrhea.  Quietly he said to me, "Anything we give your Mom now will cause something else to happen, she is so frail".  He asked for the drugstore, took notes on his medical computer and then I asked to see him in private.  He took me far away from the examination room, to the far side of the nurse's station, away from any ears.  He knew what I was going to ask.  My question might not have been exactly what he had anticipated.  It was, "Is Mom a candidate for Hospice care now?"  Not quite the same as asking if she was dying,  because I knew already that she was.  He looked at me with his soulful eyes and said, "Yes.  I will leave a note to get it started tomorrow.  I would start it now, myself, but I am new here and do not know exactly what the procedure is."  And then he talked to me about Mom's spirit, all our spirits.  He spoke about what he believed:  "I believe our spirit inhabits a body, here on earth, and that when the body stops working, the spirit leaves and comes back in another body.  This is what is happening to your mother.  Her body can no longer house her spirit.  Her spirit will leave soon.  And I believe there is communication between the spirits that leave and those who are still here.  I have seen it over and over.  Make sure you say your goodbyes and tell her how much you love her."  By this time I was in tears and I put my hand on his and thanked him for his words and for answering so truthfully.  I think there was some kind of cosmic reason that this doctor was the one who saw Mom yesterday, even though I don't believe in cosmic stuff, or fate or any of that.  He was the right person at the right time.

I had to pull myself together to get Mom back home, into her bed, with her soft blankets pulled up around her neck.  I took my brother into the kitchen and told him what the doctor had said and about Hospice coming.  I cried again but he didn't, to my surprise.  Earlier in the day I had yelled at him in frustration for not being stronger about giving Mom her medications, about seeing to it that she ate.  I told him to "step up".  But now, only a few hours later, all that was behind me.  Acceptance is what Hospice is about, is what life is about.  As a dear friend always reminds me, his philosophy is: fix it if you can, walk away from it, or accept it.  There's no fixing now, there's certainly no walking away, there is only acceptance.  As I prepared to go home, I went in to say goodbye to Mom and beside her was Diana, the Cat.  She has been sleeping right next to Mom, next to her head, every night.  She knows, too.  She is my brother's cat, but right now her place is beside Mom.