Saturday, April 30, 2011

Caregiving Journal 8

It's Saturday, my brother's day to visit Mom.  I slept well last night after watching a DVD of Winnebago Man (documentary about an angry man who was/is a sensation on YouTube) and then the last hour of The Glass Slipper (Leslie Caron and Michael Wilding on TMC--1955).

More and more I am able to see life beyond Mom's stay at Northwoods.  I am beginning to trust that she will go home.  However, I keep hearing stories of people who have gone home only to come back in a year or two.  That might be in the cards, too.  It seems that Tom, the raconteur at Mom's table in the dining room, was on his third "visit" to Northwoods.  He was well known and well-loved by the staff.  Yesterday morning he went home--I missed him at the lunch table and so did Mom.

My visit yesterday wasn't as uplifting as the one on Wednesday.  I got there later than usual.  I had been transfixed by the Royal Wedding from 7:00 a.m. to 10:30.  I knew Mom didn't have BBC America on her television and suspected she hadn't seen the wedding so I began to sketch and color some of the wildest of the hats the invitees were wearing.  They were glorious hats, deep electric blue, pink, black, champagne and all colors of the Spring rainbow.  My favorite for weirdness was one that looked like a canoe, somehow affixed to the front of the woman's head.  It was the electric blue one, with black flowers on the crown (which was nowhere near the crown of her head) and a brim that came all the way to the middle of her nose!  Oh, wait.  Then there was the hat I named The Medussa Hat.  It was sort of flesh colored with a ring of fabric that stood straight up in the front, rising from the woman's forehead, another piece that sat on her hair and the best, most awful part, snake-like curlicues of fabric branching off on both sides.  It was atrocious!  I wondered how much it cost and why the woman had thought it was attractive. She was sitting right behind Queen Elizabeth, so she was obviously a royal.  Well, the British royal family has never been known for their fashion sense.

On the way to Northwoods I stopped at the Silverdale Caregiver's Center, a well-kept secret located in the building that used to be the Lutheran church, behind the Sheriff's office.  I went there when my mother's caregiving began to get very stressful for me last year.  The support and counseling I got were so helpful to me that I decided to ask them to help me with finding housing possibilities for my brother.  When our Mom dies, in 6 months, or 1 year, or 5 years, he will have to find someplace to live and he will need housing for a low-income person.  I walked away with lists and forms and a suggestion that my brother complete a form that will allow him to access the services they have through this office.

I didn't get to Northwoods until 12:30.  Mom was in the dining room, at her regular table, waiting for her lunch.  As I walked in she declared, "It's my daughter!"  But that was the last declaration she made, other than that she wasn't hungry at all.  I learned from the speech therapist aide that she'd eaten 75% of her breakfast (yes, they pay close attention and write it down in her chart), a great accomplishment for her.  But now, her pap looked even more unappetizing than usual.  She ate her pudding, she drank a little lemonade and some of her chocolate health shake (Ensure in a tiny milk carton).

The aide called on another young lady to take over. She'd had good luck in encouraging Mom to eat.  She is a sweet, rosy-cheeked, dark-haired young person named Levita.  She and Mom had compared their names, Levita and Lucretia, both unusual.  She was the girl who asked me one day if Mom was always happy.  I think Levita is a happy person, too.  She asked Mom to be a "team" with her and to set a goal of a certain amount of food to be eaten.  She made a pile of about a half cup of mashed potatoes and ground meat and gravy, pointing it out as the "goal".  She actually fed Mom, coaxing her, softening her against the stubborn refusal to eat any more.  I don't think Mom ate all of her goal pile, but she ate more than she had intended to.

I showed Mom the sketches I'd made of the hats from the wedding.  She gave a cursory glance, but was too tired to take much notice.  She wanted to go back to her room and nap.  While Levita was working on the food goal I was talking to Ted's wife.  Ted, 87, didn't have a stroke as I'd assumed.  He had choked and collapsed.  Apparently he had choked again at the hospital.  I met his wife last weekend.  She is probably 20 years younger than her husband and right now very distraught, eating too much of the wrong food, crying, angry.  I gave her a pamphlet and a card for the Caregiver's Center.  I hope she goes to see them.  She is facing a difficult future.  I know they can help her if she asks them to.

Finally, even Levita had given up on getting any additional calories into my tiny Mom and I was allowed to wheel her back to her room for a nap.  It is sweet to put her to bed.  The relief is palpable.  Her sigh of pleasure as she lies down, her eyes quickly closing, her smile of relaxation, the sound of contentment when I pull the blanket up to cover her cold hands.  All reminders of how wonderful it is to feel the release of surrender to rest.  How lovely it must feel to someone who has lived so long.

Thursday, April 28, 2011

Caregiving Journal 7

The first thing my Mom said when I entered her room at Northwoods yesterday was, "I have a job!"  I cocked my head like a crow and I'm sure my face looked surprised, if not skeptical.  "Really?"  I said.  "Yes!  I'm a little scared though, because I've never done very well at jobs".  Don't know where that came from, but Mom was pumped up about it.  And, looking at the whiteboard on the  closet I could see that she was going to have a male physical therapist at noon.  The day was getting even better.

Mom was more awake and talkative than I've seen her in a long time.  I'm trying to remember when I last saw her so enthused--it has to have been months ago.  She was even more enthused by Kent, the PT for the day.  She quickly agreed to walk without her walker, which she did very well, with Kent holding the "stability belt"strapped around her tiny waist.  She got winded by the time she'd walked the long hallway and then back to the gym, but it's a huge step forward.  Kent put her through her paces.  She climbed stairs and played catch with me and, after a rest, walked all the way to the dining room without the walker.  Mom loves men, as anyone who reads this blog knows, and she converses with them better than she does with women.  Kent was a good converser and they talked about where she lives, and Scotland, where both Kent and Mom have traveled,  and golf, too.  Now Mom has another man-friend.  She's never going to want to leave Northwoods.

Lunch was fun, too.  Tom, the 65-year old bearded man, has perfectly normal speech and brain activity.  It's just his arms and legs that aren't working properly.  He is full of funny stories and smart observations.  His eyes sparkle and his cheeks are pink with health.  He has an excellent appetite, so he gets "regular" food, as opposed to Mom's chopped up variety.  Mom looked at his meal and then looked at hers and pronounced hers as PAP!  She looked at his cake and her dessert, applesauce, and asked, "He's got cake.  Why don't I have cake?"  She accentuated this question by sticking out her lower lip!  Jean (speech therapist assistant) got permission from Mom's speech therapist and Mom got cake, too.  But after two bites she declared it "not as good as it looks".  Appetite is still a problem, but something is better with her.

Lunch and all that PT wore Mom out and I took her back to her beloved bed, helped her get into it, gave her her call button and her bunny, Pinkie, and brought her blanket up to her neck.  She snuggled in and closed her eyes.  Nobody would bother her now until the occupational therapist would come in to work with her at 4:15.  I said my goodbyes and told her I loved her and that I'd see her soon.  She kept her eyes closed but smiled sweetly, calling, "Bye-bye, honey".

What's extra good about my brother and I splitting days to be with Mom is that I get to carry the vision of Mom walking with Kent, talking enthusiastically, demanding cake, being more alert.  I can carry it all day today, even though she may not be as ebullient today when my brother goes to see her.  Stanley will report to me this evening about his time with Mom, but I can keep my time with her in my heart and be thankful that I got to experience one of the really great days.

Wednesday, April 27, 2011

Caregiving Journal 6

Yesterday, Tuesday, April 26, was the first day since April 4th that I haven't visited my mother.  My brother and I are splitting the days of the week and he went to visit her yesterday.  Did I stay home and rest up, read all day, exercise, do yoga, meditate, send emails, nap?  No.  I did something far more rejuvenating.  I went to our monthly alumni luncheon.  I wasn't particularly hungry, so I just had a grilled cheese sandwich and coleslaw, but I wanted a beer.  We were at Hale's in Silverdale, and they have Gary Parker's Irish Death beer on tap.  It's a heavenly beer--dark, smooth, pretty high alcohol content.  Half way through the 11 oz. glass I felt pretty mellow and even hungry.

Bruce Johnson and his beautiful, song-writing wife, Ellen, were there so I was able to ask Ellen if the next writer's retreat had been scheduled yet and when I might see a notice in my email.  We talked about last year, my first time at the retreat, and I told her that the retreat had spawned a writer's group here in Kitsap--three of us from the retreat, plus two others.  She hasn't been writing much so I challenged her to write a song about gas prices.  Immediately she sang, "Up, up, up...."  That's a good start.  Marty McLaren was there at a table with Fred Just and his pretty wife, who are working daily on the Seabeck Cemetary.  He is writing a book about it, she is leading tours through the cemetery and trimming, clipping and cleaning.  "It's good exercise", she said and of course, a wonderful project since Seabeck's plot is the second oldest in the State.

Trude (Jr.) Gillman has a beautiful new hat that he said is made of rabbit hide from Australia.  I think he was pulling my leg when he said he had to brush it counter-clockwise.  Sharon Briggs Conway and her husband, Harold,  and I were eating at the same table.  They live out on Seabeck-Holly road.  Sharon has retired from making a living at being a baker and her husband makes extra money cutting down Alder trees, for free, carting them away, cutting them up and selling them for campfire wood.  Enterprising.

Terry Baughman Tenney brought her tall, very pretty daughter and her grandson with her.  Terry's daughter looks like her, has the same hairline, the same wide smile and her grandson was very friendly, considering we probably looked super old to him--a restaurant full of grandmas and grandpas.  He told me Terry was a good grandma.  I've never doubted that.

It was so nice to talk about things other than caregiving, although that subject did come up.  Many people told me they were following this blog and that is gratifying.  I told Marty I do it for lots of reasons:
 1.  It's therapy for me to write it all out, get if off my chest and brain, explain it to myself.
 2.  I can tell many friends and relatives at once what is going on and don't have to repeat the story over and over.
 3.  It's another way of asking for support, which I have never been good at.  I always feel "I can do it by myself".
 4.  Sometimes, often actually, people have suggestions to offer, learned from their own experiences with  a spouse or parent.
  5.  It is training me to ask for help and advice rather than relying solely on myself.
  6.  It is a way of taking care of myself, as well as my mother.

I didn't take any pictures at the lunch.  It was enough just to be there, converse and laugh.  I got hugs, sympathy, words of support and talk of the future.  It took me away from my caregiver role for awhile.  It's good to talk about Ralph's Scout cabin, Jim's garage, Gary's beer, Marty's housing community, Junior Gillman's new hat, Sharon's pea planting, the small and good things that make up a life.

Tuesday, April 26, 2011

Caregiving Journal 5

Yesterday was a busy day for Mom.  She had physical therapy, occupational therapy, lunch with her table buddies Ted (87, tall, dignified stroke victim) and Tom (65, white haired and bearded with rosy cheeks and a sharp wit, with a disease like MS or Parkinsons) and then, just as she was about to be set free to take a nap, an ultrasound tech came in to take a look at her swollen ankle and foot.  This was all between 11:00 and 1:30.  They are keeping her busy and she is making progress at getting around with a walker.  But she still doesn't want to eat much and prefers to be in her bed, nodding off, but easily wakened if someone says her name.

I talked to Mom's Care Manager, Kathy, yesterday about the sleeping.  She said, "Your Mom is 89.  Things are starting to shut down".  I knew this, intellectually, but having her say it confirmed my  intuition.  That's why I go almost every day.  Every day could be the last day.  Or she could go on like this for many months or even years, like my husband's Greek Uncle Manoles, who lived to be 93, and spent his last 2  years sleeping 23 hours out of each day. Mom is not unhappy.  She smiles when Stanley and I are with her together, over what we are saying or joking about.  She enjoys being taken care of and tells the aides how sweet they are and of course, she notices the handsome young men.  I wouldn't be surprised if her last words on this earth will be, "He is so good looking".

Remember, if you are ever in a situation like this, that every patient in any kind of medical facility needs an advocate.  Doctors, nurses, aides are overworked, just like the rest of the world.  Unless you follow closely what is supposed to be done, it might fall through the cracks.  I had accompanied Mom to her doctor's appointment last week, as I have been doing for a couple of years now.  Her doctor prescribed an ultrasound of her leg and lab tests, but Northwoods was supposed to do them.  So yesterday I checked with the care manager about those things and a few others.  The lab tests had been done and she showed me the results, but the ultrasound was in question.  She had no record of results, but the nurses station desk person said it had been done.  "Get me the results then, please," Kathy said.  An hour and a half later an ultrasound tech came in to Mom's room with a portable machine.  She had driven all the way from Puyallup.  I suspect the test had not been scheduled until I asked about it.

When Mom was in a nursing home for 6 days, 2  years ago, this kind of thing made me very angry, but now I understand the system.  Even a high quality facility like Northwoods needs a nudge in the right direction now and then.  Bremerton Rehabilitation center, next to Claremont East, is a run-down, badly managed place.  I was right to be frustrated. I'd had no choice when Mom was moved at midnight on that stormy night, they had the only open bed in the area.  She had not been admitted to the hospital so Medicare wasn't going to cover it and we didn't have the necessary equipment at home to take care of her.  At first they wanted us to pony up $8000 up front, but I knew the new manager from a jury duty stint we did together, so she cut me a deal.  I paid for 2 weeks rather than 2 months and when I got Mom out in 6 days we got a refund.  This time around I knew the Medicare rule about spending 3 days in the hospital before Medicare would pay for a nursing facility and she exceeded that by 6 days.  I also know now that there is an Ombudsman I can call if I have frustrations with a nursing agency.  I have already worked with the Caregiver Support Center in Silverdale and I know they have answers for many questions, phone numbers and pamphlets and lists.  They even have free counseling available when things become too overwhelming.  I knew none of this the first time around.

The memory that I will take away from yesterday is Mom saying goodbye to her table mates when she was leaving to go back to her room after lunch:  "Bye buddies.  It's been nice having lunch with you."  And Tom said, "We'll see you at dinner".  I do want to be able to get Mom back into her house, with her son and her cat and her familiar bed.  I think she wants that more than anything.  But it gives me pleasure to see how she is interacting with the other patients.  It was the first time I had heard her talk to the fellows she has been dining with every day for a week.

Today I will go to an alumni lunch.  I won't visit Mom today, but my brother will.  He won't stay as long as I do.  He gets uncomfortable in such places.  Mom will enjoy his visit and he will get his cookie (or two) from the "visitor's coffee room.  I will try not to think I MUST be there today.  I know she is being taken care of and they are keeping her busy.  One of the aides asked me the other day if my Mom was "always this happy".  The answer was and is, yes.

Sunday, April 24, 2011

Caregiving Journal 4

She goes up, she goes down.  Yesterday was down a little.  After my Aunt Billie's memorial we went to see Mom at Northwoods.  She was in her new private room, but she wasn't liking it that much.  A big room with just her in it was kind of lonely.  She perked up when we arrived, my brother and I, but was sad to hear where we'd been.  We'd brought her the program and I had made a list of all of her old church friends that asked about her and sent their love.  She was happy that people were thinking of her, but sad about Billie and sad she hadn't been able to be there.  Minutes later she decided she was glad she hadn't had to go.

We found the Turner Classic Movies channel and Gunga Din, with Cary Grant and Douglas Fairbanks, Jr. She talked to us, or rather we talked to her and she responded, while the movie played.  About 10 minutes after we got there she asked to go to the bathroom.  We found her "magic button" and she pushed it to signal an aide.  The aide came in and got Mom up to her walker and she charged to the bathroom--literally--she can walk fast and always has walked faster than me.  After she was done in there I saw the aide walking out of the room with a specimen container that had yellow liquid in it.  "Did she pee?" I called.  "Yes, she did!" was the reply.  It was a time for celebration rather than mourning.  It's amazing that a jar full of pee can be so exciting.  I don't know if it was the very first time but it was the first we knew about it since she'd gone to the hospital on April 4th.

We watch Mom like hawks if we are there for a meal, to see what she chooses, for future reference, and how much she eats.  That night for dinner she was having the Ground Meat of the Day again, with gravy, those pumped up potatoes, also with gravy, chopped up green beans, too.  This time there was a bowl of cream soup and that's what she concentrated on, eating 3/4 of the bowl.  I think it's the most I've seen her eat in a long time.  So, if and when she goes home, cream soups will be a staple.  Friday the OT told me that they found out Mom liked butter, so they put it on her eggs and they were adding cream to her cocoa along with some Ensure.  They are adding calories in creative ways.  They probably put cream in her soup, too.  No wonder she liked it.

After dinner it was back to her room to sit up for 15 minutes before being allowed to lie down again on the bed she has come to love.  Gunga Din was still on, Cary and Doug, Jr. swashbuckling, socking, getting lashed by pseudo East Indians in heavy dark make-up but giving it away with blue eyes. Finally, Romeo came in (Romeo!!!) to help Mom into bed.  A deep sigh of relief and a comment about Romeo being cute.  We left her to her nap then, in her big room, with her stuffed bunny, Pinkie, and Gunga Din.

Saturday, April 23, 2011

Caregiving Journal3

Yesterday was better.  I got to Northwoods about 11:00 and on the way in spied an adorable stuffed bunny with a light green bow around one ear and a light green, chenille dress with pink flowers embroidered on it.  I bought it and took it in to Mom.  She loved it on sight.  I wasn't sure she would take to a stuffed animal but she petted and hugged it.  It will have to be a substitute for her cat, Diana, for awhile.

Mom was awake when I came in and she hasn't been quite this awake in weeks, so that was better.  She has lost her roommate, Clara.  Clara's hip replacement convalescence was done and I was so sad I missed saying goodbye to her.  She had been a good source of information about how Mom had slept.  Clara told us that she often called for my brother during the night.  Mom told me immediately that she had taken a walk with a different physical therapist that morning--a man.  She said they had a good conversation and it was nice to talk to a man.  She described him as tall and dark haired--good looking, of course.  I saw on the "therapist list" for the day that his name was Jeff.  I asked around and identified him as one of the therapists I'd seen in the gym, the one who looked like Tom Selleck looks now, though not quite as handsome as Tom.  He has short dark hair and a mustache.  No matter where Mom is she finds handsome men to pique her interest.

My brother came about 45 minutes after I got there and we both accompanied Mom to lunch.  I was able to talk to the speech therapist and to the occupational therapist who are working hard to make Mom's food palatable to her and easier to swallow.  The lunch was Ground Meat of the Day in Gravy (looked better than it sounded), Fortified Mashed Potatoes (huh?), cut up string beans and Lemon Merengue Pie.  Before Mom saw the pie, she dug in to her gravied ground chicken and mashed potatoes.  But when she spotted the pie, that's all she wanted.  I asked the OT why elderly people (and I mean people 20 years older than me) like sweets so much.  She explained that the taste buds for "sweet" are the last to go, especially in people with dementia.  Why dementia has anything to do with taste buds, I don't know.  I might have to Google it.

I had lunch with an alumni friend after visiting Mom and it was an enjoyable, refreshing break from all the medical issues.  I thought I might dump all my stresses on my friend, but I didn't, only a few of them. We talked about lots of things and that's what was so nice about it.  My spirits were already better, but talking with a friend is a good way to feel normal again.

And the day was beautiful, too.  Sunny and warm.  It felt so good to feel the sun on my face and to get to open the windows of my car because the car was so warm and the air was so fresh.  I went to Target and got a birthday card for my son and got accosted by two make-up sales people.  I think the Mary Kay woman was probably not supposed to be giving out samples from her purse in a Target Store, but she hooked me by complimenting my on my "cute earrings".  She gave me a plastic Easter egg with a chocolate egg in it, her address and a sample of blush.  When she asked for my contact information I refused her and ran like the Easter Bunny.  Not 5 minutes later another, heavily made-up woman (it must take her a half hour to get it all off and an hour to put it all back on) approached me asking if I was looking for a particular make-up (because I'd made the mistake of stopping at the aisle) and then she proceeded to lay on the compliments as heavy as her make-up, about my "great glasses".  Aha!!! Another one!  I fled!  It's a wonder I got out of there without encountering someone else who "just loved my pink shirt".  Does Target know how irritating this is?  If this happens in Target again I will complain, because it will make me not want to shop there again.

Later, at home, I picked up two messages about Mom changing rooms.  Northwoods needed a two-bed room for two men coming in and could they move Mom to a private room?  I called back and said it was okay with me, except that her roommate had helped her numerous times to find her call button, so they needed to make sure it was where she could see it.  They told me when they couldn't reach me they asked Mom if a private room was okay.  She said yes.  I'd bet that when she heard of "two men coming in" she was thrilled, wondering if either or both of them might be good-looking.

Friday, April 22, 2011

Caregiving Journal 2

Yesterday when I arrived at Northwoods Mom had just been returned to her room after lunch in the dining room.  She was lying on her bed, looking very tired.  I asked about her lunch.  She said it was "delicious" but that she hadn't eaten all of it, that they always gave her too much.  I didn't check with the speech pathologist, who has now included Mom at a table of patients with eating difficulty, but I would bet that she ate no more than a few bites of whatever the delicious food was.  Mom nodded off soon after I arrived.  Since her roommate, Clara, was gone to a doctor's appointment, it was quiet, except for the noise in the hallway.  I was going to go with Mom to her doctor's appointment at 2:15, so I had brought a magazine to read and that's what I did while Mom slept.  I knew she was going to need sleep if she was going to have the stamina required to go see the doctor.  I watched her face as she dropped into REM sleep, twitching, grimacing, making tiny noises and then relaxing again.  I remembered watching my babies sleep, wondering what their dreams were.  It was the same feeling.

At 2:05 the day's aide came in to get Mom ready for her ride in the Northwood's van.  She woke up pretty quickly and was helped up and into a wheelchair.  I helped Mom adjust her wig (she wanted her wig on if she was going out into public) and helped her put on a sweater.  The van driver came on the dot of 2:15 and I grabbed my purse and we were off, Mom to the van, me to my car to meet them at the clinic.  The traffic in Silverdale was heavy--must have been because Easter is this weekend.

The van driver delivered Mom to the second floor of the clinic, handed her paperwork to the receptionist, and parked Mom in the waiting room.  Mom leaned against her right hand, looking exhausted.  The last time I was in a waiting room with her was her last appointment with the heart rhythm specialist, several weeks before she went to the hospital.  I realized she had been much more alert then.  That's when the doctor had said he couldn't really do anything for her, her heart was regular, though fast, and there didn't appear to be any other problems with her heart.  He said, "Your weight loss and fast heart beat are symptoms of some underlying problem we haven't found yet.  Now we have to wait until the problem manifests itself."  My theory, as uninformed as it is, is that her face neuralgia (numbness in her chin) is at the bottom of all of it--the problem that was dismissed nearly a year ago by a neurologist as a "pinched nerve".

Mom had her meeting with her doctor, pretty much an overview of what had been going on with her since her admission to the hospital.  The doctor checked her swelling feet which looked like pink sausages and decided she wanted an ultrasound to make sure there was no blood clot.  The doctor had her concerned face on, and she probably was concerned, she has known Mom a long time, but I wish she had been more concerned last year.  To be fair, Mom has always downplayed any problems she's had and, indeed, often forgot she had any problems at all.

The nurse came in to announce that she had made an appointment over at Salmon Center for the ultrasound and that we could go over there right now.  She read the look on my face correctly because she amended that with, "Oh, you can't do that?"  It wasn't that I couldn't do it, it was that I didn't want Mom to have to go to another appointment.  She is 89, she weighs 91 pounds, she hasn't walked more than 100 feet without a walker in weeks.  I couldn't make her endure it.  I told her Mom had arrived in a Northwood's van and she understood then.  Northwoods had to make the appointment and arrange for van service.  She gave us our freedom then.

We didn't have to wait for the van--a different driver was there delivering someone else to his doctor.  When Mom got a look at him she perked up, because he was a very handsome fellow, black curly hair, sultry eyes, beautiful skin.  I had seen him around Northwoods but Mom hadn't and she zeroed in on him, smiling with delight.  I left her to her fantasies and her ride back to Northwoods with her easy-on-the-eyes van driver.  I arrived at the same time they did and followed them into Mom's room.  When he asked me if I thought Mom would like to be put into her bed, I nodded yes.  I knew that she would be very happy to have a fellow as fine looking as this one help her.  When he had gotten her into bed she piped, "Thanks, Goodlookin'!"  Even through his caramel-colored skin we could see the blush.

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.