Caregiving Journal 10

The roller coaster ride continues, but it's going up right now.  Monday, the day of the urology appointment for Mom, was a low point, after riding on the high of the great visit the day before, when Mom was so bright and cheerful.  After examining Mom and the records that Northwoods sent,  Dr. Johnsrud looked directly into my eyes and said, "Your mother is going to have to wear a catheter for the rest of her life.  She is not able to expel all her water and we can't keep her from having bladder infections without keeping her bladder emptying.  There are more invasive things that could be done but I'd do them on someone much younger, not to your mother. This is what I would want for my loved one."  Another gut kick.  I'm not sure Mom understood right then, but Tuesday when we came for the meeting with her care team, she was wearing the catheter again.

The night of the urology appointment I'd had to call my brother and tell him the bad news.  I could feel his emotion over the phone--the dead silence--the thought processes beginning.  Will we be able to take care of her at home with a catheter and bag hanging from her?  We will have to empty it daily.  What will that be like?  Can we keep it from hurting her?  Will she ask us to take it out?  In my brother's mind there were awful images of spilling it and having to clean it up--he told me later he was terrified at the news I gave him.

Tuesday morning when I picked him up he was still in the midst of anxiety.  He cried twice on the way to Northwoods, anticipating what they might tell us, and still immersed in the frightening thoughts about how he was going to handle taking care of our fragile mother with a catheter attached to her.  I told him we could try it--that if it didn't work, we could look at other options.  We had a choice.  The night before I was in exactly the same frame of mind he was in right now.  But I'd had a chance to click on my rational mind and to think it through.  We could try.

Mom was in good spirits when we got to her room, resting again, after having a couple of therapists working with her already that morning.  Soon an aide came to get her up to go to the meeting.  I didn't realize she was going to be asked to attend and so that was a pleasant surprise.  There were six of us. Mom, Stanley, the care manager R.N., the speech therapist (Johnny Creelman's cousin, Cheryl), and the head of physical therapy and me.  The three medical women went through the notes on Mom, telling us about her progress physically, which has been good as far as her walking, ability to climb stairs, her strength.  Eating was the problem area.  The speech therapist said that at first they had thought her weak swallowing was the main issue but they came to realize that the larger problem was her appetite.  They would try a different appetite stimulant, but warned that appetite is going to be the paramount challenge when she goes home.  Stanley and I, who have been battling this food war with Mom for more than a year were not surprised.  I'd been at Northwoods at lunch with Mom many times in the past weeks and watched her tiny intake--she will put a glaze of gravy on her fork and daintily put in in her mouth.  The only food I've seen her eat with full fork or spoons and gusto is lemon merengue pie.  Even then it's been only 3 or 4 forks full.

Then we talked about the catheter.  That's when the subject of training came up.  I had been trained to take Mom for walks and had been watching carefully as aides had moved Mom up out of and back into her bed.  I'd watched as the Speech therapists coaxed her to eat, the goal piles, the "fortified" cocoa, the applesauce replacing the pie.  But my brother had missed a lot of that and neither one of has had been trained to work with a catheter.  We both were onboard immediately for that and today (Thursday) we will have 2 to 3 hours of training.

The last topic of conversation was going home.  This is what we've wanted to know since the beginning--how strong and stable does Mom have to be before she can be safe to go home?  The consensus was that her eating problem had hit a plateau, that her physical prowess was about at it's peak from what could be expected of her, that her dexterity is good.  "How soon then?" I asked.  "We think within a week", they answered.  "But we will be prescribing PT, OT, Speech professionals and a home health nurse to come in a couple of times a week, to keep progress going.  This will be covered by Medicare for as long as the therapists see that she is meeting the requirements for it."  I could feel my brother relaxing, just a little bit.  With all that, Comfort Keepers three times a week, me there two or three times a week, he will have plenty of help, more than he realized.  Mom was jazzed, too.  She likes people and she has seen precious few of them in her last couple of years, with all her friends either too old to come to see her or gone now.  I'll be taking her to Dr. Johnsrud's office once a month to have the catheter changed and they will be watching closely for any problems, too.  Our Comfort Keepers care giver will, too, and the home health nurse will help us with any difficulties we encounter.

A week.  A week to make sure the house is clean and ready.  A week to start getting the whey supplement, the instant cocoa, oatmeal, instant breakfast, frozen strawberries, peaches and other fruit for smoothies and any other of the ingredients our training today will suggest.  A week to mentally prepare for the newest normal.  How long and successful this phase will be is the $64,000 question.  One of the times my brother cried on Tuesday was when he said, "Mom wants to pass at home--she's told me that so many times and I want her to be able to--I don't want to mess that up."  I am more realistic, but I would like that, too.  So in a week, we will try.