Caregiving Journal 23

This is not the real wall that Dad's ashes are in or that Mom's will soon be in, 

but it's a good representation.

How long will I continue to call what I'm writing the Caregiving Journal?  I don't know.  As long as I feel I'm still writing about Mom or my brother and the aftermath of Mom's death, I guess.  Or my feelings about her or my feelings about the business part of dying and there always is a business component to it, isn't there?  The funeral home, the death certificates, the cancelled credit cards, the transference of the car ownership, and on and on.

I am sleeping better, but psoriasis has appeared on my elbows.  I use cow juice on it--it's not really cow juice but I can never remember the real name, which is Bag Balm.  I can also use some prescribed stuff I had for my scalp when it was so bad.  Remember the little shower caps I had to wear every night while I used Derma Smooth?  Thank heavens I know how to prevent an infected scalp now.  So my elbows are itching and I'm having some allergies, but then, so is everybody else.

I finished writing Mom's obituary on Saturday, added two pictures to it (Sun said one picture will go in the paper and two will go in the online version) and sent it into the cyber void.  Today the piece I wrote appeared online, but without the pictures I so carefully scanned and attached.  I am mad.  I know the paper will not have a picture either.  And I know what it's like to try to get the Kitsap Sun to fix anything they've botched.  I spent 3 months trying to get my Mom's newspaper mess ironed out.  I wanted to pay for it yearly, they were charging her monthly on her credit card.  I got them to stop doing that, after three calls to three different people at the Sun, but they didn't ever send the invoice for the year.....AND they stopped delivering the paper, too.  Since Mom got sick shortly after that I let it slide.  So now I get to wrangle with them again.  Can't wait.

The cremation will take place this week.  I spent some time with the folks, Bob and David, at Miller Woodlawn on Wednesday.  They were nice, particularly Bob, who talked to me a long time and instantly got my "I'm tired of talking now and want to wind this up" signal--I looked at my watch.  Can you believe my parting gift was a frozen lasagna?  Did I tell you this already?  I still can't get over it!  Lasagna.  My husband and I imagined the scenario.  The Lasagna company is going out of business but they have a whole bunch, thousands, of boxed lasagnas left.  "Who can we sell them to?  Schools?  No, they have their own kitchens.  Hospitals?  Their own kitchens.  Jails?  They eat better than this.  The fed government?  No, they eat chicken.  Welfare system?  No, they offer cheese, but no meat.  Oh wait !  Funeral homes!!!  They have their own freezers--what do people need when somebody dies?  Food! It's a win-win!"  It was funnier when we were thinking about it, but I guess my funny bone has arthritis today.

Next week my brother and my husband and I will attend a private inurnment at the funeral home.  I think it will be hard.  It will be fast.  Sit in chair in the outdoor memorial thingy, have the urn delivered to us, one of us will climb on a step ladder to reach the "niche", put the urn in, mumble some words to ourselves, shake hands and thank the funeral home people and then go home.  Maybe we'll eat the lasagna.  Yesterday I went to the "niche" where my Dad waits for my Mom--his ashes wait, if ashes can be imagined as waiting--and put one of my rhododendron flowers in the tiny metal vase affixed to the marble slab--what the heck do you call these things--up on the wall.  I do this every year.  I think I am the only one in the family who knows where it is.  Mom saw it once, but never visited it.  She didn't like cemeteries at all--"morbid" she said.  But when her ashes are in there, the "niche" will have more visitors.

I think there were lots of other things I wanted to write about, but I didn't seize the brain window of opportunity yesterday and I still have "grieving brain amnesia".  There's no cure for it except time.

Caregiving Journal 22

I have the most wonderful friends.  I have had offers of lunch and walks and my oldest friend brought a huge casserole dish filled with chicken enchiladas, salad, salad dressing, bread, gigantic bright sunflowers and her loving self to see us.  Cards are coming now.  One of them expressed everything I've been thinking in such a sweet way:

You'll never forget your mother's face,
the sound of her voice,
the gentleness of her touch...

You'll never forget the stories she told
the traditions she handed down...

You'll never forget the lessons she taught
the things she stood for...

You'll never forget and  you'll always know
that you honor her every day in how you live
and who you are.

It's true--my mother's voice, especially, will ring in my ears forever, with it's clear soprano tone.  She told us stories, on her bed in the house in Tracyton, that she made up, no books, purely out of her imagination.  She taught me Albert Schweizer's "reverence for all life" (except for slugs, I'm afraid) and she taught me to "get up, get dressed, brush your teeth and you'll feel better".  She taught me to look at clouds and all the different greens in the landscape.  She taught me to be curious, to ask questions, to find the answers.  She taught me that writing was something that our family did and crossword puzzles, too and that books were the best gifts of all, aside from maybe a jewel now and then.  She taught me the love of pretty, colorful clothing.  She taught me to always try to look nice when I stepped out of the house.  She taught me to love movies.  She taught me to love cocoa and cinnamon toast on a Sunday night.  She taught me that life is something to celebrate.  She taught me to wear pretty socks and rings.  She taught me joei de vivre.  She taught me more and more and more than that.

Yesterday, an old friend from work came by, bearing a bowl of pink, purple, white and yellow plants and a card signed by my friends from work.  I retired almost 4 years ago from the ESD but they still went to the effort of remembering me and my mother.  After I thanked Wendy for the plant bowl and the card she led me outside to her truck because she "had something else" for me.  She reached in and pulled out a 5 foot tall lilac bush.  I didn't cry then because it wasn't a crying day, but now the tears are rolling down my face because it is so touching that one or two of them have been reading my blog and they understood the meaning that a lilac bush would have for me.  Every time I look at it I will remember my mother and the fragrant lilacs that were blooming outside her window and the three bouquets that my daughter and I picked that were sitting on her dressers in the days before she left us.  I will also think of my friends at my old work place and how giving they are, even if I don't visit them often enough.

Thank you, friends.

Caregiving Journal 21

Yesterday I saw Mom's purse sitting next to her chair and I cried.  I saw her tiny white tennis shoes with the rhinestones on them and the neon pink laces in her bedroom and I cried.  When I gave the "most recent" picture of her to the funeral home man, I cried.  When they asked me if I would like them to make her look nice, in other words, close her eyes and her mouth, straighten her, comb her hair, I cried.  The day before, I didn't shed a tear.  It will be like this.

The day before, my dearest, oldest friend Kay came to see me.  She brought dinner big enough for 3 days, salad, dressing, bread and she brought her loving, comforting self.  She wanted to hold me while I cried but there were no tears on that day.  I was feeling the freedom of the end of care taking, the sun was shining, my good friend was here.  She held me anyway, for a long time and told me all the ways she loved me--she loved me as much as the moon loves the sky, she loved me as much as a baby loves its Mama, she loved me as much as a car loves its tires, she loved me as much as the sea loves blue and on and on, all the while stroking my cheek.  We talked like in the old days, on the couch, under a blanket or feet tangling together, of our men and our fears and our lies and our truths.  We talked about Mom and Kay told me what she remembered about the first time she met her and what her impressions were and how they changed over the years of knowing her.  I told her what the last hour of Mom's life was like and about the silly/crazy conversations we had before she died.  It was a lovely time with my friend, just like in the old days when we saw each other many times a week and talked and drank tea in her tiny home in Manette with the red flowered curtains and the yellow enamel pitcher on the table always filled with flowers.

Yesterday was not so much fun.  It was the funeral home day and though they took very good care of me and my Dad had made sure that everything would be paid for, it was still very emotional.  I liked both men who served me.  One was a little tentative and nervous.  He was new to Miller-Woodlawn.  The other one, Bob, was sweet and talkative and I learned a great deal about his family and his past in the 90 minutes I was there.  He is the salesman and usually would be helping to select a coffin, but none of that was necessary with me.  The cremation, the urn, the niche, were all paid for years ago.  He took me into the room where "keepsake" items could be bought and I selected something for my brother--a palm-sized silver heart that he can take with him wherever he ends up.  It will be inscribed Mom, like a tattoo, but it will contain about a teaspoon of her ashes.  I will also get a teaspoon of ashes that I will keep or sprinkle;  I'll decide on that sometime later.  I've been trying to think of where Mom would like some of her ashes to be and I haven't come up with anything.  Her favorite place was her chair in the living room.  I'm not even going to keep that chair, let alone put her ashes in it.  If it was my ashes, you could scatter them on just about any beach in the county--I love them all.  Or better, on the beach of Peso Lavadi on Paros in Greece.  Or in Scotland. Or in my garden.  I have so many favorite places.  I have some of my brother's ashes sprinkled around the hydrangea I took from his memorial service.  I wrote a piece about how it blooms with only one flower each year.

There's a scattering ashes story that a friend of mine tells that I can't write about here because it's too personal to her, but I think about it every time I contemplate ashes and what might be done with them.  You will wonder why it always makes me laugh.

After the funeral home I stopped to get my brother a quad latte and me an Americano, and two Dutch Chocolate Brownies from the Red Apple grocery store.  I wanted to check in and to tell him what I'd been doing.  I wanted to find out if he wanted to take part in the inurnment. He does, and he had received a call from the good-looking social worker, Anthony, who was putting housing paperwork in the mail to him.  Things are going forward. I asked Stanley if he believed he would hear from Mom--did he believe in that kind of after life communication and he said he did.  I keep remembering the sweet Dr. Vasquez and what he said about spirits and that he believed they communicated after death.  My mother will be in my dreams and I so look forward to seeing her again.  But what am I going to do with her purse and her shoes?

Caregiving Journal 20

I am taking care of myself now.  My eyes, my nose, my throat are all acting funny.  They are dripping copiously.  It's not just tears, it's mucous.  Yesterday I took an allergy pill, then I drank a large glass of wine at dinner, and  I took a slurp of cough medicine at bedtime.  The cough medicine has decongestant in it and it seemed to work better than anything for stopping the dripping.  This morning I am dry but a little balmy.

I planted marigolds from Costco in my gardens yesterday, creating some beautiful little scenes, using some colorful, square dishes with Mexican designs for plant saucers.  I'd bought these dishes at Kohl's a long time ago and the first time I washed them in the dishwasher they started to chip.  I used them longer than I should have and then finally put them in my green house.  Now they are gracing my garden.

It was a pretty day, sunny and fairly warm.  A good day for doing things to rejuvenate myself.  Digging in the dirt, cleaning up the strawberries, encouraging my tiny potato plants, transferring baby tomato plants into big pots, fertilizing.  I got several calls: from my son, from my best friend, from my daughter in Norfolk.  I made up a word while talking with my son--Shrap--a combination of a word that starts with "sh" and a word that starts with "cr".  I used it in place of all the things that have to be done now, referring to Mom's house, her effects, my brother's situation, the business end of dying.

Two important things got done yesterday--Office of Personnel Management notification and Social Security notification.  I didn't want to do anything more than that.  Today I will call Miller-Woodlawn and make an appointment to take care of the cremation.  I am lucky.  Mom and Dad both had cremation insurance and there is a remains spot already there, with my Dad's ashes installed in 2001.  When we inurned Dad, THEY wanted to know if Mom wanted her name on the plaque too, with the end date not inscribed.  She said NO!  But now the inscription will be put on the stone.  I wonder if they will allow me to take 1/4 of a cup of ashes to keep or spread.  I will insist on it.

On Sunday two men came to take Mom's body to the funeral home.  One was a regular looking fellow, still in the Navy, doing this work to augment his salary.  The other young guy was skinny in his black suit, with longish black hair--pale, gaunt.  He didn't say much, leaving it up to the Navy guy to explain how it all would work.  He sat with his hands folded in his lap, looking funereal.  My brother said his hand was cold when he shook it.  I whispered to Stanley that he looked like a vampire.  It would be the perfect place for a vampire to work, wouldn't it? I don't want to go there right now, but I can imagine a story about him and why he would like to work at a funeral home.

Kay will come to visit me today and to hug me and help me talk about all that has happened.  She was in New York and New Jersey with her fiance, Alan, when we brought Mom home from Northwoods Lodge.  She called me from New York to find out how I was doing, how Mom was doing.  She said Times Square made her want to turn out all the lights.  She is going to bring food and her love.

I am wearing the two rings that were on Mom's finger the past few years, a pink and yellow gold ring with a grape-leaf pattern and a gold band with five small squares of amethyst set into it.  She wore them on her wedding ring finger but they are too small to fit anything but my pinkie.  I have had to wrap pink yard around the bands to hold them on my finger.  After I go through Mom's jewelry, which I am looking forward to, I will take a few pieces and have a pin or necklace or ring made out of them.  The rest of the good stuff or retro stuff, I will show my daughters and daughter-in-law and see if they want it.  There is jewelry decades old, probably not a single piece worth anything except that it was chosen by my dear fashionable Mom and worn with panache.

My brother is doing okay.  He called yesterday to see how I was doing.  He told me he'd walked to the coffee shop just a block away and bought two 20 oz. quad lattes.  That seemed like a nice thing to do for himself, even if I can't imagine drinking that much coffee and that much caffeine.  He seems to be grieving normally but he admitted to one Stanley-esque activity.  I had bought Mom a bottle of liquid Tylenol because she couldn't swallow pills toward the end of her life and I had given her only two doses before she died.  I gave it to my brother to use for headaches or other aches and pains.  Yesterday he admitted to drinking the whole bottle.  I guess he has quite a capacity for abusing his body because it didn't do anything to or for him.  I suppose he thought he would get some kind of buzz from it.  My husband cried out, "Oh great!  That's all we need--a double funeral!"

It's the oddest feeling to have a loved person in your life for as long as you've lived and then in an instant to have them gone.  I remember the feeling when my father died.  Here one minute, gone the next.  I saw men who looked like him, in stores, on the street.  It was the same with my brother--I saw him everywhere.  Will I see Mom?  The day she died, an hour or so later, I was putting some garbage in the can and there was a loudly chirping bird on the very top of a tree, just past the yard fence.  I called my brother out to hear it and asked him, "Is it Mom?"  The bird continued calling for a short time and then flew away.

Caregiving Journal 19

My Mom died at 12:40 pm yesterday, Sunday, May 22.  It wasn't peaceful at first.  She had pneumonia and she was gasping for air, but she died in her own bed, in her own home with her daughter and her son and her granddaughter and her great-grandson there with her.  I had slept with her all night, listening to her ragged breathing, placing my hand on her every few minutes, holding her hand, kissing her and whispering to her that I was there and realizing that she was still breathing strongly.  By the time dawn came I felt that in a little while I could go home, and be with my husband and daughter and Alex for awhile before coming back.  My brother was sleeping on the couch and was finally getting some real rest.  I sat with Mom for 2 more hours, reading pieces she'd written for her writer's group, about "surprises", "dreams", "Autumn".  She continued to seem to be breathing with ease and sleeping deeply.  The fever of the night before had broken.  At 7:00 I decided to go home for awhile.

I had an hour before anyone got up--quiet--thinking time.  I made a big pot of coffee and read an article in a magazine, enjoying the moments of peace.  When the gang got up Alex and I made pancakes and we all made plans for the morning--Carolyn had to take Mom's car back, she had to pack, I wanted to be with Mom until I took Carolyn and Alex to Silverdale to catch the Airporter to fly back to San Diego.  Alex had to memorize a poem for school and after pancakes we found a couple of short poems about nature on the Internet and he started to learn them.  While his Mom was getting ready he played one last game on Grandma's iPad (mine, in case you are confused about Grandmas), Michael packed all the gear into the cars and I was back at Mom's by 12:15.

When I got there she was in distress.  She couldn't make any sound so Stanley, who was still asleep on the couch when I got there, didn't realize anything was wrong.  She was hot, the temperature had spiked, her mouth was open and she was either gasping or trying to say something.  I immediately got the liquid Tylenol and slowly, slowly, so as not to choke her, dripped it into her mouth with a syringe.  Just the day before we had been given the syringe and the stick sponges they use in the hospital when someone is thirsty but they have trouble swallowing.  I soaked one with water and pressed it around Mom's mouth in between the small squirts of Tylenol--hoping she'd be able to swallow.  While I was frantically doing this Carolyn and Alex arrived and Stanley woke up.  Carolyn got on the bed and began talking to Mom, telling her we were there, asking her if she could hear us.  I gave Mom the two "Hospice rescue meds", the morphine and the tranquilizer, stroked her head, held her hand.  Carolyn held her other hand.  Stanley was at the foot of the bed and Alex was next to his Mom.  I was on Mom's left side, Carolyn on her right.  She calmed noticeably.  Her mouth stopped trying to speak or gasp.  But we noticed that her chest wasn't rising and falling as often and we began to see the "apnea", the absence of breathing, followed by a small gasp and the resumption of breath.  Carolyn and I made eye contact and I put my hand on Mom's chest.  I said, "This is what I did all night long--checking Mom's breathing, counting the strong breaths and then the weak ones."  Carolyn asked me if Mom was breathing as strongly as last night.  She wasn't.  It couldn't have been more than 20 minutes from the time I got there and the moment we realized she was leaving us.  I believe she waited for someone and when she knew we were all there, she relaxed and let go.  As her breathing became more and more a whisper her skin turned to alabaster, the wrinkles in her face smoothed, she became ethereal.  I broke down.  Alex said, "Her eyes are still open", hoping, I think, that she was still alive.  At the last breath, when no more breaths followed, we looked at each other and knew.  Stanley sobbed, "Oh, Mama, my best friend."  I stroked her head saying "My poor little Mama, I can't believe you're gone, I can't believe you're gone."  Carolyn cried and cried and took care of me, too.

Alex was the extraordinary one.  As we accepted that Mom has passed from the world (as we know it) we began to do things for her.  I put perfume on her hands and neck.  I combed her hair and put her favorite blue shawl around her shoulders.  I put her rings on my finger.  Alex brought the Easter Bunny that Mom named Pinkie when I gave it to her at Northwoods, another bunny with an "I Love to Read" t-shirt on it and a bunny made of kitchen towels that Mom had won at a baby shower for granddaughter-in-law, Irene, several years ago.  He lined them up along her right side.  He ripped a page out of his drawing notebook that had a rose he'd drawn, drawing it the way Stanley had shown him, colored in in red, and he put it on his great-grandma's chest.  And then he put his notebook under it.  He was going to give her his art notebook.  We wouldn't let him do that though, telling him Mom wouldn't want him to stop drawing.  She was proud of him for that.  Crying...I have to pause for a moment.

We started laughing and telling stories--I wish we'd had wine, but we drank strong coffee that Stanley had made for us instead.  We were glad that Mom had met Anthony, the beautifully handsome Hospice social worker, just 2 days before she died.  We were happy that on Thursday, when Carolyn and Alex arrived, she was talking and laughing and telling jokes and that she told Alex she loved him and that he was a beautiful and talented boy.  I was so thankful that the last caregiver she had on Friday had been the girl who hummed and sang as she went about her duties.  It was a gift.  It was wonderful that all of Mom's flowers were blooming during the last week and that she had three bouquets in her room that Carolyn and I had picked for her.  Her room had been filled with the smell of lilacs and she could see her lilac trees outside her bedroom window.

I am also glad that she had been able to experience the fullness of life at Northwoods, that she had enjoyed and openly appreciated all the people who cared for her there, that she played Bingo and won prizes and that I took her to the Mother's Day Tea and she wore a hat one more time and ate a huge chocolate covered strawberry.  She found men to admire there and to dream about and she told all of them they were "good-looking".  Kay's fiance', Alan, sat on her bed and kissed her.  She ate cream pie and the aides made special cocoa for her.  She felt as if she was being treated like a queen and she deserved to be because she was so loving in return.

I must stop writing--the tears are flowing so hard I can't see the screen.  I have more to say, but it can't be today.  Thank you all for your support.  I will need you again in the weeks to come as the business part of death begins, but for now it's time to rest.

Caregiving Journal 18

I felt like I was in the midst of a marathon yesterday.  The day started at 5:00 a.m., quickly out of the gate in order to have some quiet time in the morning before daughter, grandson and husband got up.  I had some time to gear up for the day, to drink some coffee, eat some yogurt, do some stretching and think.  Everyone else got up at 6:30 and the day had begun.

My daughter and grandson came with me to borrow Mom's car, touched base with Mom and then left my brother and I who were meeting with the Hospice people at 10:00.  We met with Mary and Anthony.  When I first got sight of Anthony standing in the doorway I knew Mom was going to take a shine to him.  His smile was perfectly white and the rest of his face was lovely, too.  And I was right.  Mom was first introduced to Mary and then I pointed out Anthony.  "Oh!" she said, obviously impressed.  Immediately she was off and running about  how good looking he was.  If his skin hadn't been such a deep shade of coffee brown I'm sure we could have seen him blush.  We ushered Anthony out of the room before his head swelled to the size of a casaba melon and began our meeting.

I think my brother and I were amazed and gratified with all that Hospice has to offer.  The representatives they sent yesterday explained eloquently that Hospice is taking care of the patient as well as the caregivers, that they are available to help in any way possible.  I mentioned the phone call I'd gotten from the doctor's office about bringing Mom in for another appointment and Mary said Hospice would take care of any communication between patient and doctor, allowing the patient, Mom, to stay put and not have to go through going to the doctor again.  All of her "levels" are low because she is dying.  No amount of adding this or that drug is going to change it now.  In fact, we eliminated three drugs yesterday, which means the effort to get pills into her, which has been extremely difficult, is over.  She will continue the drug for pneumonia and bladder infection because that will take away discomfort, but the others are not necessary anymore.

On Monday a hospital bed will be delivered.  I am concerned about how this is going to be accomplished--putting that bed in, getting the other one out.  Me, my brother, my husband will be doing the moving and heavy lifting of old furniture.....all of my friends are 67 or still working and Stanley doesn't have friends. and doesn't know his neighbors.  It was awful to realize that there are few strong people we can call on when there is a need.  I know my husband, when I actually tell him about this, is going to say we can do it with physics and a hand truck.  And I know if I can get him to help plan what should be moved and where, that he will do a good job.  I am beginning to feel his stress now, as he has me with him fewer and fewer hours in the day.  He was hoping for an hour of my help with a project yesterday, but I was unable to be here.  He wasn't angry or petulant, but all of this is taking its toll on him, too.  He is being supportive and telling me to do what ever I need to do, but still.....

Hospice was with us for 2 hours as we went over all that needed to be explained and decided.  Then our caregiver arrived, a different person this time.  She went to work giving Mom a bed bath and massaging lotion into her arms and legs and while she did all this she sang.  She is a person who already has lived a full life at only 20.  She is an old soul, having been in foster care for the first 12 years of her life and then adopted into a large family.  When she was on the deck shaking a rug, she was singing.  It was joyous to hear.  Later she was running out of things to do because I'd already washed the dishes and swept the kitchen, so I asked her if she'd clean Mom's fingernails.  Little did I expect that Mom would get her hands and nails soaked and cleaned along with using the file to clean under her nails.  It was a mini-manicure and so soothing for Mom.  And while she did it, she sang.

It is so beautiful to watch the caregivers gracefully going about their duties.  One day a young woman who was caring for Mom expressed an envy of people with artistic talent like my Mom and my brother have, and I stopped her and told her what an incredible talent she has for empathy and compassion.  All of these people we have seen since April 4th, except for one blinding exception, have had that most wonderful of gifts. ( The "blinding exception" is no longer working with us, and we learned how to cope with it anyway.)  I know my Mom is one of the easier patients they have.  She is cooperative, doesn't complain, doesn't demand anything, but I know they have it harder with some and yet they still maintain their optimism and joy in caregiving.  I am feeling so blessed that I found out about all of these "angels" who are there to help.

When my daughter was out in Mom's car, cleaning it, washing it, gassing it up, putting air in the tires, she also went to Shari's and bought a cherry pie for Mom.  The reason?  Because Mom had called out in her sleep the afternoon before:  "Cherry Pie!"  And every time Mom and I had pie at Shari's her choice was always cherry.  When she came back with it we fixed up a tiny bowl of mashed up cherry pie with whipped cream on top so that Mom could have a few bites of one of her favorite tastes.  The taste brought back memories of having lunch at Shari's with her best and oldest friend, Gerry.  She said, "You know, I bet Gerry doesn't know I'm sick.  Maybe you should tell her".  And rather than telling Mom again that Gerry had died two years ago, I told her I'd be sure to tell Gerry she wasn't feeling well.
Later in the day Carolyn put an old circa-Forties picture of my Dad on Mom's dresser next to the bouquets we'd been making of lilacs and pink dogwood.  He was shirtless, his dark hair wavy, his smile cocky as he lounged on a porch step at the age of 23.  The young caregiver was talking about some movie star she admired and Mom pointed out the picture and said, "You see that handsome man there?  That was my husband!"  She was obviously very proud of the hunky man she'd chosen.

Mary from Hospice said to me, "Your Mom has a strong life spark", and that is so true.  We see it every day and I am so happy that I get to see it, that I don't live somewhere far away, that I am right here to be with her.

Caregiving Journal 17

Don't have much time this morning.  Hospice people coming to talk to us at 10.  My daughter and grandson arrived yesterday afternoon and we had a great time visiting Mom.  She was so excited to see her beloved granddaughter, Carolyn, and to see her great-grandson, Alex.  We looked at pictures, we looked at Alex's drawings, we sang songs--had a lovely time.  My daughter cried several times from the surprise of seeing her Grandma so frail, but she didn't do it in front of her.  Mom ate for me twice--a big accomplishment in 2 hours.  She was joking and very funny and I think Carolyn feels better about things now.

Today we will see if Hospice will provide us with a hospital bed so that my brother and I can reposition Mom and get her out of bed easier.  A bed that goes up and down and can be raised at the head and foot would be lovely.  We have learned, from all the T's, how to stack pillows and put others under her side to give her a new position, but it's very difficult, even with such a tiny person.  I think a bed that lowers nearer the floor will make things less scarier for her, too.

Lately, this past week, I can't remember which day it is and which T I'm meeting with.  Is it Tuesday and we meet with the OT or is it Thursday and we meet with the PT?  And I've given my first "no" to a nurse calling to tell me that "the doctor needs to see Lucretia next week".  I said no, I'm not making her get herself to the doctor anymore.  She is too weak and frail.  It's not going to happen.  I was told yesterday by the PT (or the OT???) that Hospice will take care of that kind of thing, too.  They will provide the doctor with the information he or she needs that they would have gotten if the (stubborn and protective) daughter had agreed to bring her in.

It is nice to have my daughter here because we talk about all kinds of things and I can forget a little bit about my Mom and just have fun.  It's also a bit of work to have someone else in the house.  I asked her to come, so it's something that will just be necessary in order to have her here, but I'm not being a hostess and she gets it.  She has made her own and my grandson's food and so on and she'll borrow my Mom's car while she's here, so I don't have to get her anywhere.  All I had to do was pick them up at the Bremerton Ferry yesterday and bring them to Mom's house and then here.  So the dynamic of my life will be different until Sunday.

Maybe it was just the excitement of seeing Carolyn and Alex yesterday, but it seemed like Mom was a little better, but at this point, "better" is a very subjective term.

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.

Caregiving Journal 15

Today I am taking care of myself, taking a day off from care, or at least it feels that way.  There are people I have to call, I'll be going to the medical appliance store, too.  But my husband is taking me to lunch at HiLos, one of my favorite little kitschy restaurants, in Bremerton and I haven't had a call yet from my brother. I will call him to see how things are going today and I may end up going to see Mom depending on what he tells me, but for now the plan is to do my own thing today.

Yesterday my taking care of myself assignment was to go to my book club meeting.  I went to see Mom at 11 and stayed until 1:15.  My brother had no luck giving her the morning pills, so I showed him a trick I learned at Northwoods.  Pills with applesauce or pudding.  I'd brought some pudding to add whipped cream to and to give to Mom and so I put a pill in each spoonful--Mom even sang, "A spoonful of sugar helps the medicine go down", while I fed her each one--it was tasty, smooth and a good way to take her morning pills.  She didn't want to get out of bed, though.  I propped her up to take her pills, which my brother hadn't done--no wonder she refused them--who can eat or take pills lying on their backs?  Not me, not you, not Mom.  Stanley realized he'd been going at it in a funny way and I hope he learned from watching.  After getting Mom situated I did some chores in the house and had a short talk with my brother about "the future", which means after Mom passes.  Housing, where he will live, how it will be accomplished.  The last time we addressed this situation he was in a panic--he imagined there would be hundreds of people who would want to buy his Mom's falling-down house--they'd be banging on the door, bidding against each other.  It was a paranoid vision.  The house is in such bad shape that we will likely nearly have to give it away.  I assured him, though, that I would not put it up for sale until we had found a place for him.

I know that down the road, in "the future", I will have to put a limit on how long he can live in the house before he must be out.  There will be a money limit already--how long can Mom's funds pay for the utilities while we find a place for him to live?  That's why I'm working on it now.  Unfortunately, finding a list of housing is the first and a kind of difficult task.  Apparently there is not just one list.  Secondly, each housing location requires that a potential renter get on their own list and each requires different criteria.  Thirdly, my brother is incapable of starting or following through on doing this, so it will be me, me, me who has to do this, too.  Today I feel strong, directed, decisive.  I had a decent night's sleep.  The book club was fun and we laughed about lots of things, my husband and I watched good TV--The Killing on AMC, a terrific new series and a recording of Blue Bloods (Tom Selleck series).  And I nearly fell asleep on the couch, so I knew I would have success with sleeping.  Only trouble was, I was awake by 3:00 a.m.  Absolutely awake.  My method for dealing with that kind of being awake in the middle of the night is to get up, go down to the guest room bed with my book, read for awhile and then fall back to sleep.  Last night it worked--I read for 30 minutes, fell asleep, didn't wake up until 6.

It's not raining (yet) though the wind is blowing and we'll be leaving in 15 minutes.  So far, so good.  I've gotten two emails today about Chapter 14, as a friend called it, telling me how the readers reacted.  I'd like to get more reactions, but truly, this blog is therapy for me.  Writing has always been therapy for me.  If it helps you, then that's fantastic and incredible.  Know that loving someone is always worth it, no matter how much pain comes with losing them.

Caregiving Journal 14

A friend calls these blog-posted journal entries my "morning pages", which are writings the first thing in the morning suggested by Julia Cameron in The Artist's Way.  But they could also be "mourning pages".

Mom is home, but now that she doesn't have nurses aides to come in and roust her out of bed to brush her teeth and eat her meals, she has decided bed is where she wants to stay.  I suspected this might happen when we were at Northwoods and having PT done.  She would always ask if she could go back to bed now, if she could please lie down now, if lunch was done and could she take a nap now?  Now she is home, her bed is wonderful, she has windows she faces that let in the light, she has her son and her cat and she wants to do exactly what she wants to do.

Caregivers are coming, as of Friday, a home health nurse has already visited and next week the Tees (OT, PT, ST) will begin, so there will be attempts to get her into a routine of moving her legs, getting her up, but for now my brother can't resist her pleas to stay in bed.  I understand.  Michael and I went to the house yesterday to deliver some things, it was a gorgeous rare sunny day, and Mom was in bed.  She was happy being there.  I sat on the bed with her and held her hand while she told me that she had "gone on a drive" last night.  Stanley had followed her, she explained, and when he found her his face showed "pain and worry".  The day before she'd told us of a "fling" she'd had about 2 weeks ago.  She knew it wasn't right, but she needed a little excitement.  She apologized for going and said she wouldn't do it again.  Yesterday, as we were leaving, she called out "I'll behave myself".

I read a book a long time ago called "Dad. A Novel" by William Wharton.  I have never forgotten it because of the lovely explanation of what might go on in the mind of a person with Alzheimer's Disease.  Of course, it is the author's explanation, not a scientific one, but it is such a sweet notion.  The idea is that while Dad is "gone", while he sits and appears to be thinking nothing, he is actually living a fantasy life on a farm, where he is completely happy.  In real life his body is infirm, his memories are gone, he is merely existing, but his fantasy life is rich and beautiful.  My Mom might appear to be delusional or delirious, but she is living somewhere else, she is having flings, she is driving again, she is walking without assistance, she is probably much younger.  She apologizes to us for being going on her "flings", for being foolish, but I am happy she is "going" to these places.  It gives her life a richness we can't provide now.  All we want to do is get some calories into her, encourage her to move around, help her with the most intimate parts of life.

Yesterday, before going to see Mom, my husband and I had a conversation about caregiving.  Is my brother wrong to acquiesce to Mom's wishes, to allow her to stay in bed, to refuse food?  Or is that the kinder way?  I have been running around buying things, food, a new walker, trying to think up solutions for her lack of appetite, making up recipes for food that might tempt her, in a frenzy of movement.  Is that the kinder way?  While my husband was in Home Depot, I sat in the truck with the door open and my face to the sun and reached deep down inside myself, realizing that all my frantic running is not going to stop the inevitable--it may stave it off for a few more days or weeks, but that is all.  I probably can't stop myself from looking for solutions because that's my nature, but I have to slow down and sit on Mom's bed and talk with her and listen to her and hold her hand.  I have to feel my deep love for her and show it to her while we both have time.  We are losing her and though she promises to eat, she won't eat enough and she won't drink enough water and the end will come.  No matter how much I want it, I can't keep it from happening.  And what is the kinder way?

Caregiving Journal 13

Counting down.  One last full day for Mom at Northwoods.  I'm not sure she realizes she is going home tomorrow morning, but my brother and I are very aware of it.  Yesterday I spent several hours shopping for the food and other items we will need to give her good care at home.  I still don't have the bath bench, but found out by accident that the cost of it could be reimbursed by the Caregiver Center in Silverdale, through Kitsap County Aging and Long Term Care Services.  After visiting Mom on Monday, and delivering a piece of Boston Cream Pie to her, I agreed to go to a NAARF meeting with my husband.  NAARF is the National Association of Active and Retired Federal workers--they meet once a month at the West Sound Improvement Club down in Navy Yard City.  Each month they have a speaker.  This time it was Janet Larson from the Caregiver Center.  She happened to mention in her presentation that certain home care appliances could be bought with the $250 fund per caregiver that the center can spend.  I wasn't aware of this at all.  Either I wasn't paying attention to that part of Janet's explanation to me a year ago, or she forgot to mention it.  So that's one big expense we may be able to avoid.  Even though I know a lot more about resources than I did a year ago there are still many things to learn.

After I bought the protein whey, applesauce, apple juice, peanut butter and jam at Costco, and the instant gravy and other instant foods at Safeway, and the laundry basket at Target, I schlepped it all down to my Mom's house.  My brother wasn't there--it was his day to visit Mom and they wanted to give him more catheter training--so I hauled all the stuff into the house.  The first thing I saw when I went into the kitchen was what looked like cat food all over the kitchen counter, along with the expected dirty dishes, utensils and mugs and pieces of cellophane and cardboard from opened packages of food sitting on top of sticky ice cream and jam leavings.  The second thing I saw was cat barf on the floor.  It looked like two-day old vomit, not fresh.  If I'd had my blood pressure monitor with me I could have verified that my BP rose along with my anger.  How the hell can my brother take care of Mom's catheter needs when he can't even notice and clean up cat vomit in the kitchen?  I stomped around, cursing and putting things away, putting garbage where it belonged and noticing that the little bits of brown on the counter and floor weren't cat food, but Cocoa Puffs.  Had he had a breakfast accident?  Had he been using it for confetti to celebrate that his Mom was coming home? Was he doing performance art? How to explain that it was all over the counter and on the floor, too.....

About 10 minutes after I got to Mom's, my brother showed up to the back door with a coffee and a bag of magazines from Barnes and Noble.  It's his first week of the month ritual--magazines and a coffee--when his SSI check comes.  He'd also bought a few groceries, mostly pastries and some milk and TV dinners.  The minute he got in the door I asked him to clean up the cat barf.  He was going to use the Scotchbrite pad I use when I do dishes there and I said, "Please don't use that, it's for dishes.  Use a paper towel."  No common sense.  But he cleaned it up, struggling to get down on his knees, huffing and staggering when he got back up.  I was still mad at him and sullen, but later I asked how his training had been.  "They worked me hard," he said, "and Mom was impatient with me.  The OT wasn't, but Mom kept saying 'hurry up!' "  In an attempt to make amends with me he showed me that he'd bought a special edition magazine about the Royal Wedding, ostensibly for Mom, but my brother loves that stuff, too, as do I.

Before I left I made him a list of 4 things I wanted him to do before I got there today to clean house.
1.  Put your pot away.  (a pipe and a baggy were on the couch)
2.  Empty the dishwasher and fill it again, including the 4 dirty coffee mugs sitting in various places in the living room.
3.  Empty the living room waste basket that was overflowing.
4.  And sweep up the Cocoa Puffs on the kitchen floor.

After this week, a caregiver will be coming and tidying as needed.  I will be at the house 2 or 3 times a week, keeping things picked up.  There will be SP, OT, PT (the Tees, as I call them) going in and out at odd intervals and a nurse, too.  I told Stanley his pot was to be on the lowest level possible.  This means no one should be able to smell it and nobody should ever see it.  All we need is for someone to blow the whistle on him and have him end up in jail.  2 years ago when Mom broke her shoulder and cracked her knee cap, we had Abiding Care serving her for a couple of weeks.  Stanley got nice and comfortable with the young woman who was taking such good care of Mom.  He smoked weed in front of her.  She ended her services immediately.  The manager of Abiding Care called me to tell me what had happened and told me they had decided not to report him.  I don't think I have ever in my life been so angry with anyone as I was with my brother that day.

I know that the catheter emptying will not be the major contribution my brother makes to my Mom's care.  It will be his presence that is most important.  My Mom and Stanley have a symbiotic relationship. She lives for him and he lives because of her.  She has told me hundreds of times how important he is to her, what a good companion.  I witnessed what they have together when he and I were still visiting Mom together, during the hospital stay and the first weeks at Northwoods.  She would light up when he came into the room.  She laughed at his odd behavior, his strange riffs on hospital or nursing home routines.  She was making a joke one day when he was there and he said, "Oh, Mom, you're so cute".  It was said with deep and genuine love.  I know his love has lots to do with his own security, but it's still love.  Who among us doesn't have one or two of our own selfish reasons for loving someone and wanting to keep them with us?

One of the things that has happened to me in these weeks since April 4th, is that I have discovered a deeper love for my mother.  The time at Northwoods has been good for me.  I know that Mom is well cared for and that she is safe.  When I go up to see her I often don't have anything to do except be with her in the most fundamental sense.  I can listen to what she has to say, ask her important questions, like what she believes comes after death, talk to her about her lost friends and family, hold her hand, stroke her head.  The surroundings are quiet and pleasant, there is no work for me to do.  When she is back home I will be noticing the Cocoa Puffs on the floor, the dirty towels that need to be washed, my brother's messes.  I would like to be able to let go of all that, to concentrate only on Mom and her well-being in these last months of her life.

Caregiving Journal 12

"

I hope I can remember the details of the day of the Mother's Day Tea at Northwoods. Lodge.  I have pictures to remember the tea itself so that the details of that part are helped by the images.  I had managed to change Mom's clothes so that she could feel festive.  I took her 6 of her hats to choose from, but she wasn't very interested in choosing so I chose for her.  I chose a little black homburg with a leopard print band.  She looked very nice, but I don't think she cared much about that.  I got her into a wheelchair and wheeled her to the Fireside Room, placing her by the fireplace so that she could see everything.  The tables were decked with lovely edibles, most of which the patients couldn't eat--maybe some could, those without swallowing problems--but I had to be selective about what I chose for Mom.  She ate an entire chocolate covered strawberry--the strawberry was the size of a lemon, probably irradiated to get that size, but when you're 89, would you care?  The food was not as interesting to any of us as was the 3-year old little girl, in her Easter dress and hat, who was dancing to the music.  The music was being played softly by a woman I'd seen before who comes to Northwoods to entertain the troops--the troops being the people who are residing there fighting hard to get stronger, to recover from something that has happened to them.

If it had not been for the charming tot dancing, the tea would have been nice, but a little depressing.  Most people were wheeled in, only a few were ambulatory.  All mothers, including me, were given an orchid corsage, a lovely touch.  The food was beautifully prepared but most of those accompanying the guests of honor spent more of our time being solicitous to our parents than actually eating any of the pretty offerings.  I did eat a nice little quiche cup and a tiny chocolate something.  Mom only lasted 15 minutes before she asked to be taken back to her bed.  I think she wouldn't have lasted that long if not for the little girl swirling in the middle of the room with a fat strawberry in her chubby hand.  I'm so glad that one of the attendees had thought to bring her child, the patient's grandchild.  I think it's good for older people to look at the promise of youth--it's joyful for me, anyway, and my Mom seemed to enjoy it, too.

Mom exclaimed, as I wheeled her into her room, "Oh, my bed, my bed!"  It is her sanctuary, her beloved place.  I laid her down, still in her finery, removed her hat, left her corsage on and she exhaled that sigh of pleasure and relief that I've heard so many times lately, as she settled into her pillow.

Mom was not actually sleepy, so she talked to me, but it was mostly pronouncements.

"I want it to be known, that the paper, that paper we read, is important."  I asked her if she meant the newspaper and she affirmed that yes, that's what she meant and she closed her eyes.

After awhile she said, "I'm glad there is a large space for announcements".  It seemed as though she was still thinking about newspapers, or maybe this referred to a church service bulletin.  She closed her eyes again.

After a long silence she said, "I'm waiting for someone to discuss the issues of time and space".  That got my attention.  "Time and space?" I asked.  "As in the universe?"

"Yes, the Universe.  If we don't take care of it, it's going to be destroyed."

"Destroyed?  What do you mean?"

"It will go kaputt!" she said with emphasis.  At this point I wanted a little more clarification.  "Are we talking about the Universe or the Earth, Mom?"

"Both!"  She seemed pretty darn certain, as if she was experiencing some kind of link with a "higher authority" who was telling her to tell me.  Who knows what was occurring in her brain--a twilight sleep, a dream, whatever it was, she seemed to need to tell me.

Taking advantage of her state, I decided to ask her a question that I'd been thinking about in connection with the certainty that she is getting close to the end of her life.  I asked her about Heaven.  I know my Mom doesn't believe in a Heaven or a Hell, but that she does believe, very strongly, in God.  I don't happen to believe in a god of any kind, but I am fascinated by other's beliefs.  So I posed this question:

"Mom, I know you don't believe in heaven, so what do you think happens after a person dies?"

She said she didn't know, and of course, nobody knows.  As Betty White put it very well the other day, it's a Secret that is not revealed until we die.  She said only those who have died "know the secret".  But Mom decided she'd talk about heaven a little more.

"If there was a heaven, your Dad wouldn't have gone there," she said, "and neither would your brother, Dan".

"Really?"  I said, "and what about you?  If there was a heaven, would you go there?"

"Yes!  I'd go there because I've been a good person!"  "And humble, too," I joked.

So, no profound statements about what comes after death, but a conversation about time and space.  I look forward to more exchanges like that.  Only 3 more days until we pack Mom up and take her to her home of 53 years, where she has her very own bed, her beloved son and Diana, the Cat.

Mom seemed a little sad that day and I asked her what I could do to make her a little happier.  She said there wasn't anything I could do, though she appreciated that I wanted to try.  I asked her then, what would make her happier and she responded wistfully, "If Dad was here."

Caregiving Journal 11

It is Saturday.  I haven't written in a couple of days, not because I haven't wanted to, but because I've forgotten.  That's one of the problems I'm having right now--forgetting things.  My husband keeps saying, "You have a lot on your mind" and he is so right.  I especially have a lot on my mind today because yesterday I got a call from Northwoods that Mom's release date is May 12th, next Thursday!  That's good news, but sends me into a flurry of activity and list making.  There is so much to do before she sets foot in the door.

1.  Get my brother to help me clean the house.
2.  Buy large quantity items like applesauce and whey protein at Costco.
3.  Grocery shop for Mom, keeping in mind what the nutritionist and the speech therapist said about what Mom can and should eat, instant mashed potatoes, gravy packets, instant breakfast, eggs, lots of butter, cream, oatmeal, cream of wheat, canned beans, string beans, beets, cream soups.
4.  Bring a suitcase to Northwoods for Mom's clothes and flower vases and cards.
5.  Call Comfort Keepers to get them started again.
6.  Find out when the PT, SP, OT and home health nurse will be visiting each week.
7.  Solve the problem of where we can hang the catheter bag on the side of the bed--a  big safety pin was suggested by Cheryl Creelman.
8.  Make sure there are sterile wipes that my brother can easily access for catheter emptying.
9.  Get a clock/calendar device so my brother doesn't have to call me up at 10:00 pm to find out what day it is, like he did last night.
10.  Reprogram Mom's automatic pill dispenser (my husband will do this for me).
11.  Buy a bath bench from Amazon (best price) unless one appears at Goodwill.  There actually was one at Goodwill on Thursday, but there wasn't a back on it and Mom needs to be able to lean back.  Anyone have one in their basement?
12.  I know there's probably more, but that's all I can think of at this point.
13.  Unfortunately, that's all I could think of while trying to sleep last night and I finally had to get up and start making lists.  I'll crash and burn later.

Today will be a fun day at Northwoods, because they are putting on a Mother's Day Tea.  I went to Mom's house and invaded her hat collection, bringing home 6 of her cute hats 3 straw hats, a red beret, a black knit hat with black fur border, a felt derby with a leopard pattern band.  I cleaned them of dust with compressed air (I don't think she's worn them in a long time) and they look as good as new.  She will get to decide which one to wear to the tea.  I also picked out a nice, colorful jacket for her to wear so that she feels dressed up.  She asked me yesterday, at Dr. Yee's office, if she would need to put on stockings.  I told her the dress code was casual nursing facility attire--red skid-proof stocks will be the footwear of the day.  Apparently one of the aides or nurses is a gourmet baker and she will be providing the tea sweets.  I will be wearing a hat, too, and will dress up a little more than I have been doing.  I'll wear earrings and a bracelet or two.  I hope Mom will be having one of her alert days.

Dr. Yee gave Mom a clean bill of health yesterday at her 8:00 a.m. appointment.  He is a gastro doctor, the one who performed her two colonoscopies in the hospital.  He cautioned her to keep drinking the metamucil and to eat as much as she could.  Mom was tired, they'd waken her up, but she perked up when she saw the beautiful photos on the wall, taken by various relatives of Doctors Yee and Sharma.  It seems to have become de rigueur at physicians offices to put original photos on the wall.  Dr. Houck (heart) had photos he'd taken of mountains he'd climbed.  At Drs Clinic there are original water colors on the walls, probably done by an employee.  Are doctors and other medical personnel highly creative?
My dentist makes jewelry.  My best friend, a therapist, paints and makes collage art and has exhibited it. She also sings and writes songs.

Thursday was Training Day for me and Stanley.  We spent 3 hours at Northwoods learning how to bed transfer, aid stair climbing, aid standing up and sitting down, empty a catheter, toilet transfer, take walks with a wobbly Mom.  The catheter training was the tricky part.  My brother, even though he used to paint and sculpt and still puts together Harley Davidson motorcycle models, seems to have poor small motor skills.  His hands shake, probably because of all the medication he has to take, and he was nervous, too.  He had a hard time of it.  He is also not familiar with medical devices or child rearing.  Child rearing is an excellent background for care giving. Those of us who've done that have had to put pants and shirts on bodies hundreds, maybe thousands of times.  We've cleaned poopy diapers, we've cleaned up countless messes, we might have dealt with bandages or had to help with shots.  Even if we've never had to empty or change a catheter, we've got strong stomachs and aren't really nervous about stuff like this.  It's just the stuff that has to be done. Period.

Are we ready for Mom to come home?  Our emotions are ready.  We know she will be happy there. My brother confided that she's told him countless times that she "wants to pass at home" and he wants to help her attain that wish.  It won't be as easy at home, there won't be aids around the clock and my brother will probably continue to sleep on the couch in order to hear her when she calls out for him at night.  He will be the one most responsible for her food intake and her catheter.  He will have help from me and others who are coming, paid help or prescribed help.  I will undoubtedly get calls from him on the days I'm not there or at night.  He will panic sometimes. I will spend a good deal of time at Mom's, helping with the cooking, checking on Mom, checking on my brother, assessing. It's what I do right now and it will be worth it in the end.

I made a mother's day card for mom today with a picture of Mom on a couch and my other brother, Dan, and me beside her.  She had fallen in our well the day before.  The Bremerton Sun had taken the picture for the newspaper article they wrote about her.  She had spent hours in the well, hanging onto the pipe, her back braced against the well walls, her feet in the water.  The minister, who lived just a few blocks away was the one who found her there.  The volunteer fire department pulled her out.  She was 33 years old and beautiful in the photo and even though she was lying on the couch, she looked healthy and strong.  I wrote to her in the card that even as she had inspired us then, with her bravery and élan, she has continued to inspire us now.  She has been courageous, graceful and calm all through this ordeal, cooperative, even cheerful, and that's made our job all the easier.  Even when she could not stand up on her own, she tried and didn't complain.  Her reaction to this hard time will live with me always and hopefully, I'll be able to draw on those memories when I am in my 80s and things aren't going so well.

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.

Caregiving Journal 9

Here is a picture my husband took yesterday of me and my Mom at Northwoods.  She is very frail but she was unusually awake yesterday when we went to see her--no delusions, no napping in the middle of a conversation, seeming perfectly happy to be where she was.  I helped her to the bathroom at one point and she needed only minimal help getting off of her bed and she walked quickly, holding my arm, to her bathroom.  I think going home is in the cards.  Tuesday my brother and I will meet with the "care team" and find out what they are thinking and what kind of progress they are seeing.  I have seen progress daily, except for her eating.  Friday, though, she was reported to have eaten a hearty breakfast, so if she gets what she likes, she will eat.  It was either scrambled eggs made with butter and cream, or oatmeal laced with butter, protein powder, brown sugar and topped with cream.  Who cares about cholesterol at this point, calories are what we are pushing.

Mom hasn't seem a single highlight of the Royal Wedding, she said yesterday.  I assured her that her People magazine will have a lavish spread, with lots of pictures.  She had a new flower arrangement, but didn't know who had brought it.  Too bad, for patients with memory problems, that there isn't a guest book so that we and the patient can see who has visited.  If Mom ends up back in a place like Northwoods eventually, I will put something like that on the counter with a place for messages that can be read later to jog her memory.

Today we have a doctor's appointment, early.  I will leave at 8:15 to meet Mom at the urologist's office of Ted Johnsrud in Silverdale.  She is looking forward to her van ride.  There might be a good-looking driver and she says it will be "exciting".  That's the Mom I like to see.  The doctor is an old friend of mine from Unitarian Fellowship days.  He is a sensitive and gentle man. He plays the harmonica and idolizes Toots Theilman.  I think he was the doctor my Dad saw for his prostate problems years ago, so Mom may have met him.  She will like him, I'm sure.  He will be an important link to her future health, pronouncing her bladder fit--or not.

The doctor Mom sees on Friday this week will also be important.  Dr. Yee is the gastroenterologist who did her TWO colonoscopies while she was in the hospital.  I have never met him.  I have only seen his chicken scratches, slightly readable, on Mom's chart.  He works with Dr. Sharma who helped me discover Metamucil a long time ago when I was having frequent heartburn.  I hope Dr. Yee is easier to understand than Dr. Sharma was.  Dr. Sharma was a crackerjack of a doctor, I liked him, but oh dear, I had trouble with his Indian/English that flew out of his mouth like bats out of a cave at dusk. I even asked one of the people in his office how hard it was to transcribe his recorded notes.  She told me one person quit because she couldn't decipher them.

This week will give us many answers, if not more questions.  We are on day 20 at Northwoods.  That means only 10 more days before we have to start paying the daily co-pay.  I hate to have to think about money while my mom is recovering, but it's a big fact of life.  And it must be, that if I am concerned about money, then I must not be quite as worried about Mom.

Yesterday was a good day.  The sun was shining for the first and last time in days.  We visited Mom, she displayed energy, we went to downtown Bremerton to look at the Harborside condominiums just for kicks, I got a Starbucks (half-caff) coffee and after dinner, while watching 60 Minutes, we all got the word that Osama Bid Laden was killed.  Truly a memorable day.  It's ironic.  My Dad died 10 days before 9/11/01 and 10 years later Mom is lying in a nursing home bed while Osama Bid Laden, the architect of that horrible day of death, is found.  Full circle.