Thursday, April 21, 2011

Caregiving Journal 1

Since I have little time to email, get on Facebook, talk to people in person or on the phone, I have decided I will try communicating through my blog.  At least I will be able to keep writing and those who read this will know what's going on.

What is going on is "caregiving".  My poor little Mom, 89 years old, currently is at Northwoods Lodge, a nursing facility North of Silverdale.  Mom would call it a "nursing home", but it's a lot more than that.  She was in the hospital for 9 days, from April 4th to April12th.  She was bleeding from a place I'm not going to mention here, but a hint is that she had two colonoscopies while she was there.  I think most people who know me are aware that she had lost 40 pounds since last Spring.  She was down to 86 pounds at the last doctor's appointment.  Nobody could figure out why she was losing so much weight so fast and why she had such a poor appetite.  Her heart was also beating super fast, her pulse was 130.  One doctor mused that it was like jogging all day long.  The lack of nutrition, lack of hydration and weakness, ended up with her in the emergency room and then in a bed on the third floor of Harrison Hospital in Bremerton.

Her time there was dismaying to her--her short term memory loss didn't allow her to remember why she was there or when she would get to "go home".  My brother and I visited every day, watching while she had to drink "a gallon of Puget Sound" to prep for the first colonoscopy.  She wasn't able to drink it all, but the doctor did the test anyway.  Of course, it failed.  So she had to be on liquids and a new prep for another full day.  A good test was taken and only one polyp found, apparently a benign one.  For 9 days nutrition and hydration was dripping into her veins.  She had a catheter the entire time.  The days blurred for me, as I called Floor Three West every morning to find out how she was and watched her go in and out of sleep while I visited her for a couple of hours each day.  I did crosswords and Sudoku to pass the time, and wished that I could knit, so that I could really accomplish something during all those hours.  Mom's attitude was good--she likes almost everyone she meets, including all the aides and nurses, who change every day.  She even found a "good looking" man, Dr. Seyhal, a Pakistani doctor who checked her over several times.  She said he looked like a fellow out of Ali Baba and the Forty Thieves.

The day finally came, April 11th, that she was cleared for discharge.  There was just one thing she had to do before she could be released:  empty her bladder by herself.  All day long we waited.  I  called and called again.  Finally I went to the hospital.  I had all of her clothes ready--I had the shoes and coat she hadn't worn in 8 days.  She was dreaming aloud about her bed, the kitty and my brother, Stanley waiting for her at home.  But each time I checked the nurse said, "Not yet."  Finally, late in the afternoon, the decision was made to keep her overnight with hopes of success the next day.  That night I made one of the hardest decisions I've ever had to make.  If her bladder was still uncooperative on the 12th I would have to ask that she be moved to a rehabilitation facility (nursing home to Mom).  The nurse on duty in the afternoon of the 12th looked deeply into my eyes, which were filling with tears, and said, "You are doing the right thing.  They will take good care of her."  But I still had to tell Mom.

I sat on the side of her bed, leaned in very close so that she could hear me and said, "Mom, your bladder isn't working properly yet.  Stanley and I can't help you with this at home.  We've decided you will need to be transferred to a nursing facility."  Her mouth flew open and her body tensed underneath my hands and her reply was, "What the hell?!"  I continued to tell her why we had made the decision, but she didn't want to talk anymore.  She closed her eyes.  I talked to the social worker and asked for a bed at Northwoods Lodge, not really believing we could get her in, since it is the premier place in the Bremerton/Silverdale area.  Then I got in my car and drove home, tears streaming down my face.  I felt so horrible, so sad, my stomach was knotted, there was an apple-sized lump in my throat. I got home at about 5:00.  My husband was waiting with hugs and sympathy.  He knew how hard the decision was.  He knew Mom would be afraid of ghastly smells, ugly surroundings, all the images she harbored of "nursing homes", from countless horror stories she'd heard.  Her biggest fear as she got older and older was that she "would be put in an old folk's home".

It was only 20 minutes after I got home that the hospital called to tell me that a bed had been secured at Northwoods and that Mom would be transported there shortly.  I had never been to Northwoods, but they had that great reputation, so I was hopeful and as happy as I could be under the circumstances.  By the time we got up there, only a 20 minutes drive from our home, she was in her own pajamas, had been given some dinner and was in her bed. She has a roommate, Clara, who had arrived just before Mom, to recuperate and get physical therapy after a hip replacement.

Mom has now been at NWs for 9 days.  They didn't get orders from her doctor to take her catheter out until Monday, April 18th, and didn't take it out until Tuesday of this week.  Every day she gets physical and occupational therapy.  This week a speech therapist was added, because despite the really good food they serve there, she is eating less than 20% of it.  She is now having trouble swallowing, apparently a result of the "face neuralgia" diagnosed a year ago.  And she still has to relearn how to feel the signals from her bladder. The good news is that she is now 91 pounds and she is philosophical about being there.  It's not smelly, it's carpeted, decorated with cottage-type decor, flower wreaths, wooden ducks, lots of big windows, a room for visiting with a fireplace that is always lit, coffee and cookies for visitors.

My brother has learned the route to drive to NWs and so I don't have to pick him up anymore and I can begin to resume my life, but it is a "new normal".  We had both been going up everyday, but it occurred to me yesterday, while we were in the dining room watching Mom eat 4 or 5 bites of her lunch and talking about how the staff there probably work 5-day weeks and get time off, that my brother and I probably need time off, too.  We are going to split the days of the week, allowing ourselves time to regroup.  I need time for my husband and myself.  I need a haircut, I need to work in my garden, I need to exercise and meditate and calm my body and mind so that I can sleep at night.  It helps me to have read the "Playing God" chapter in Passages for Caregiving (Gail Sheehy) last night.  I have had it in my mind that I must be there every day, that I must pay close attention to what the aides are doing to make sure that they don't hurt my mother in some way.  Underneath it all is my desire to control the entire situation.  I am a first child.  I am the responsible one.  I always think I can do it, I can make it work.  If something goes wrong it will be my fault for not being vigilant enough.  On a conscious level I know that's not true, but down deep inside I still cling to the belief that I can save her.

Today is the first time Mom will be out in the world since she was moved to NWs.  She will be transported to the Doctor's Clinic to see her doctor.  I will visit her first and then follow the van and be with her during her appointment.

I know my love and devotion makes a difference.  Mom has never said, "I love you" more than she has since being in this unhealthy, weak state.  And I have said it more than ever, too.  I love my little Mama. But I have to get out of the way a little bit, let the experts do their jobs.  I don't need to micro-manage her care.  Her time is running out and I have to accept it, let my love flow to her, hope for some level of healing and quality for what will be her final years.

1 comment:

Wendy McComb said...

I'm sending you good thoughts and good kharma.

Wendy