Friday, August 31, 2012

A Brief Follow-up and a Change in Perspective

I don't think I mentioned in my report on Monday's visit that Mom was confused about her morphine schedule. She took her first pill at 9:30 am and was supposed to take another one four hours later. Except that she got confused and took it at 11:30. (Just the kind of trick that Sister Morphine likes to pull!) As the hour got closer to the scheduled dosage time of 1:30, Mom started thinking that it she took another pill, she would be back on schedule. (Sister Morphine again!) It took a good deal of persuasion on my part to convince her that it would be better to wait until 5:30.

When Susan talked to Alice, Marilyn (and John's) longtime caregiver, Alice said that one of the things she didn't like about hospice was the way they pushed the morphine. Alice and I were both concerned about overuse of the morphine, but now I realize that we were concerned because we were thinking about addiction in a long term perspective.

Hospice does away with the long-term, so does it matter how much morphine Mom takes as long as it is palliative?

Hospice took her off of Lipitor. It has some nasty side-effects that make you feel lousy and weak. Long term cholesterol build up is no longer a concern.

If it makes her feel better, do it!

Tuesday, they changed her prescription. Dosage was increased and she now takes one time-release pill every 12 hours, one in the morning and one in the evening. It's off the bedside table and into her daily meds.

And that seems smart.

Wednesday, August 29, 2012

Monday Drop In Visit

Dropped into the aparment after lunch on Monday for a visit.

Atmosphere was relaxed. A woman from church was just leaving having dropped off a dozen decorated 'baby bundt' cakes. Dad was still in the parking garage saying goodbye when I came down the stairs and slipped into the apartment. Mom was lying on her bed when I walked into her room.

She really enjoyed Travis's visit over the weekend. Especially when she learned she didn't have to feel guilty about keeping him from helping Susan get ready for the first day of school.

While we visited, she shared a couple of her blessings. One was a letter from June Bishop (she made a copies to distribute) in which June recalls memories of their friendship back to its beginning in second grade. Many of the anecdotes were new to me. I never know that Mom dyed her hair with hydrogen peroxide. It was an experiment and it turned her hair orange instead of blonde. Grannie took a "dim view," she said.

She also had in her hands a diary that she had started in January, 1946. She read an excerpt."Donnie and I double dated tonight with Vic and MBW. Vic was in a bad mood, but Donnie and I had a great time! Oh, do I love that boy!!!" She said she wrote that every few days for as long as she kept the diary.

Dad said, "You never told me."

"Well, you never said 'I love you' either," Mom shot back. Surprisingly, they both let it drop.

I signed documents to become signatory to their accounts. Mom seemed to struggle a little. I think it was the morphine. Little things seemed to confuse her. But Mom let them drop.

(I'll pause a minute and let those last words sink in...)

Anyway, I hope she lets us read that diary. She's screening it to to make sure it's OK for us to read.

It was a good visit.

Sunday, August 26, 2012

The Visit That Didn't Happen

Susan has been keeping Marilyn up with Mom's condition. Mom's being sick is one thing that Marilyn does remember and she asks Susan about Mom from time to time. After Mom enrolled in hospice, Marilyn expressed interest in paying a visit to Mom and the problem of making the visit happen has been bouncing around. With Travis up for the weekend, (he spent much of Saturday at the apartment and helped host visits from both the Wolfs and the Kings) it was tentatively on the agenda for today.

Logistics was the major hurdle. Marilyn does not walk well at all. Steps are next to impossible for her. Travis had to lift her up and down our front steps last time she was over at Westglen and he is not trained to move her safely. Strapping her into a wheel chair and lifting the chair up the stairs seemed the best way. Then, having conquered the steps, the wheel chair could take her just past the front door, and then she would be on her own with her walker. Access is not easy! There is a level entry way off the parking area, but the halls stay in the middle area of the building, you just can't reach their apartment.

Still, Susan called to find out if Mom was up the visit. She received many signs of discouragement and no hints at all of encouragement. The last time Susan had mentioned the visit to Marilyn she had just looked away and not answered. Today, after talking to Meg, it seemed that the obstacles were just too great.

Susan then called Polly to tell her we weren't going to bring Marilyn over.

Mom said she thought that was best, then told Susan, "to give her an extra hug from me. She was such a good friend..."

Susan hung up the phone, closed her eyes and said. "That was so hard."

We all sat together at the kitchen table and had a good cry.

Saturday, August 25, 2012

What Matt said

Mother told me about Matt's visit and Beverly's gift. I emailed Matt and told him how much his visit meant and he wrote back:
She exudes class.   Not to mention True Grit (Hailey Mills version), which encompasses bravery and courage, acceptance and gratitude, self-responsibility and content in her life choices.   We had a great time and I so much enjoy ourselves.    She saw updated pics of my kids and has always taken an interest in them, very sweet.     With Polly, you get  the kind of discourse possible with so few people, most of whom hail from her dwindling generation.     Keep me updated on her health, please.

Sharah's Return

And, oh yes, Sharah's coming back.

The Gift of Hospice

We went to M & D's last night, Friday.
It occurred to me on Thursday that ground beef patty, rice and broccoli might be a good meal for Mom. (On a tray with a bud vase) She agreed but had some green beans that needed to be cooked. So I fixed that for dinner.
Mom came to the table and took her morphine and ate. I was not as successful as you were, Dave. She did not clean her plate. When Dad suggested that she eat more, she quoted the Blue Handbook from Faith Hospice: do not force the patient to eat. I suggested that getting her to eat more was habit and reminded her of the many times we have had to get her to eat in the past year. She agreed. Must be the morphine.

What I want to tell you about, however, is our conversation before dinner.
Just Mom and me sitting in her room.

She used the words: the "gift of hospice". Hospice, of course, indicates end of life and as the word gets out, people are getting in touch with her to say good-bye:

Matt Malouf came over and spent an hour sitting by the bed, talking to her about his kids. He showed her pictures of all of them. It gave her real joy that he shared that time with her. A gift.

Beverly Brown made some grape leaves for her. Beverly only uses fresh grape leaves now. The jarred ones just aren't good enough. Her vine had quit producing good leaves for the summer so she got some from a friend. The dolmas were small because the leaves were small and Beverly had packed them in several bags of 5-6 grape leaves and a lemon wedge. Perfect for a snack or before dinner or lunch. Another gift.

Mom called Rev Kev at church. He told her that he was available to visit if she wanted, a fairly routine response from a minister to a parishioner. Instead she asked him if he had a minute to talk and told him how much his classes have meant to her. That he has really brought their studies to life and thanked him. A gift given.

Karen Malouf wrote her a letter, and on and on.

Mom said that since death is a given in her situation, people don't feel that they have to skirt around it. They don't have to say "get well soon" since both parties know that that isn't in the cards. They can honestly share their feelings and express their love for her in words and deeds. She seems to be surprised and delighted at the number and variety of people who are in touch.

After dinner, she sat on the sofa and visited. Then I helped her to bed. She said she could do it herself but it sure was nice to have some help.

A good evening. (For Dad, too. He was thrilled that when he got home and he didn't have to think about fixing dinner.)

Friday, August 24, 2012

She's on top of it.

Talked to Mother this morning; she said she was very anxious to tell me something:
She's confused.
That's it. She says she is experiencing mental confusion and she knows it and she wants everyone to know she knows it.
She's on top of her mental confusion, she says.

Her hospice caretaker came to bathe her last night, but said she is not supposed to make Mother's bed unless it is a hospital bed.

She has called the agency to try to get Sharah back.

She has also called an agency that says it takes care of caregivers, which might give them the household help Mom and Dad need. I told her we (I) could easily make these phone calls from SLC for her, if it took too much energy for her to do it. Or if she was feeling confused keeping track of it all.

She declined for now.

Tuesday, August 21, 2012

Sunday Dinner

We went by Sunday evening to fix dinner for Mom and Dad.

We found Dad in the living room with the newspaper, no TV and Mom back in her bedroom with her lists. Which is where she spends most of her time these days. She likes to be on top of the covers, in her nightgown and a silk(?) bed jacket that I think she said Marybelle gave her (hey, I could very easily be wrong about that, please don't get upset if it were a gift from you the reader.) But that way Mom doesn't have to think of herself as bedridden. At least that's what she told me last Monday.

(By the way, nearly everything that has anything to do concerning that apartment is parenthetical.)

Susan and I sat down and had a nice visit with Mom. We talked about Susan's visit to the Arboretum with Debbie and her Aunt Teddy, the upcoming school year, goings on with the Rectors. Easy conversation. Dad came in to join us and didn't get jumped on too severely which is what usually happens when he ventures into her lair.

A few minutes later, Helen popped in. Mom had asked her over to discuss staffing. She told Helen she couldn't discuss it with me because she thought that I didn't have a clue as to what was going on. (See earlier post 'The Return of the Mom.') I don't think much business was discussed but conversation was pleasant.

After a while I disengaged and went in to start dinner prep, then Dad came out to join me. Susan stayed in the bedroom and visited with Mom. Before she left, Helen and I brought Dad up to date about plans for the big weekend. Mom knows about Mary and Glen coming, probably expects Travis, but we agreed not to mention Britt or Anna; Michael or Laura. There was some talk of logistics, but it is very doubtful that Mom will want to leave the apartment even to come to one of our houses. Again, we don't know what her condition will be.

The question for the evening was whether she would come out for dinner, but the aroma of sauteed aromatic vegetables and butter poached chicken breasts got the best of her and she joined us at the dining room table. The recipe was from the first remaining (Show #14) episode of the French Chef from The French Chef Cookbook. Supremes de Volaille a l'Ecossaise with Risotto and Buttered Summer Vegetables. As Julia directed I served a "chilled white Burgundy." Someone gave the book to Susan when we got married and it was the first of Julia's recipes that I attempted back in that summer of 1976. Susan and the boys can attest to the fact that I've made it a few times since. This was one of the more successful attempts. The sauce didn't even begin to break.

I insisted that everyone have a glass of wine and that story was the substance of the toast, which also was one of the more successful toasts I've attempted.

It's been a long time since Mom's plate was quite that clean. She said Monday that she and Dad have rarely slept as soundly.

Monday, August 20, 2012

Monday conversation

A couple of conversations with Mother today, interrupted by work.

This afternoon, she told me that hospice care had prescribed nebulized morphine to ease her respiration. Her caretaker said she may never experience pain, but the morphine obviously would help with that, too.

I read about the use of morphine for breathing problems here:

I didn't really realize that Mother is spending most of her time in bed. I guess the reunion weekend will just be a parade. Anna gets in at noon on Friday, Britt gets in at 5. We get in Thursday and will rent a car.

Friday, August 17, 2012

More Bits and Bites

I needed to take some things to Mom yesterday, Thursday. I knew that Daddy would be at dance class, so I went into the apartment quietly.

Mom was leaning on the archway from the living room into the kitchen with some towels in her hand. "I found these rags with the dishtowels! Can you imagine putting dishtowels and rags together?" They looked like dish towels to me... She was trying to put the towels in the closet by the front door in the rag bag and was having a hard time getting that far. I put the towels in the bag in the closet and helped her get back in bed.

Then she told me about Sharah and the toilet. I asked her if she needed me to clean the toilet and she had "already done it." No wonder she was tired.

I thought that Sharah was provided by the agency recommended by the hospice. Will and I will be going over there tonight. I will see what I can do about "firing" Sharah. Wouldn't a conversation work better if you like everything else about someone?

Thursday, August 16, 2012

Return of the Mom

Right as the initial waves of our wine tasting were breaking in the store I noticed that I had missed a call from Lupton. I was pouring and describing three bottles of wine and welcoming customers to the tasting and it was three hours later that I checked the voice-mail. It was Mom. "Call when you get a chance!" She sounded OK. So I called (about 8:30, haven't returned a call to her at that hour in a while!) Mom answered in a much stronger voice than I've been used to hearing. "Never mind," she said. "We were wondering what you were doing for dinner?"

We hashed that and Susan's schedule for a minute, then she told me that she was going to have to fire the wonderful young woman who has been so great with her in the bath and folding the sheets. Apparently she left a personal mess in the toilet, so .... That was news. So it looks like they're going to be back without any help. Mom's talking about getting someone from hospice to help with showers, but when they tried that, they came at 8:30 in the morning, before she'd even had her toast and you know, you can't have that!

I'm confused. Where did they find Sharah?

And she's worried about how tired Dad is in the evening. He goes to rehab every day and is amazed at how many errands and chores he has to do. I made the mistake of saying that running errands and doing the things she was worried about were the kind one of  the things Senior Helper was supposed to have done but that they had never let them do.

Boy, did I pay for that one! Ten minutes later, it was time to close the store and I said, "Good night!"

Dad's response

Daddy sent this in response to my "Are you okay?" email.

"DEar never did respond to  this letter. I appreciate the concern. It certainly is a legitimate one, but so far I am holding up. Pretty tired at the end of the day though! I will keep all of you advised if Ineed help. I was just interrupted by the arrival of the Kings whohad been ouut shopping and brougth  us sour dough bread from Empire amd some sausage from Kuby's and yesterday Ruth Mason broughta roasted chicken from of all places,Cosco, and it was delicious! . So you see we are will looked after.Can't wait for your visit!!! LOve you -Dad"

To Dave and Helen

The recent posts and conversations inspire me to say this: It is making me a little bit crazy being so far from Mother at this time. I want so much to be doing what Helen is doing, going by every day and helping Mom and Dad in a tangible way. But right now, more than usual, I can't take a couple of weeks and come down there. So thanks to both of you for posting. It really helps me feel connected.
By the way, Mother's mentioned her bookbinding equipment several times...

Day to Day

Mom has called on me to do several errands and odd jobs for her.

Helping her to organize and put away papers. Getting her the right hair conditioner and trail mix, etc.
I have been trying to go every day or at least every other day.

She has become very frank and open about her death. Sometimes I think it is bravado sometimes it is Mom, the realist. I can only hope I will be so real when its my time.

Mark Anschutz told her to write down what she really wants to say to people so she will remember when she sees them. Great advice for Mom, the listmaker. And it seems to be calming her down (a bit).

On Sunday evening she was railing at herself for being so stupid (to smoke). What a dumb thing to start smoking. I pointed out the historical reality: that she didn't know that smoking was bad for her until she had smoked for 20 years and at that point there wasn't much she could do about the addiction. She agreed but regret is high on her list at the moment.

She is also being very frank with me about her alcoholism and that is a first. Does it take death to break down that wall? Apparently so.

Physically she is failing slowly day to day. It is progressively harder for her to talk and breathe. It must be frustrating for her to have to talk so much slower than her brain works.

To end on a happier note. Tonight Mom and Dad finished a rotisserie chicken from Costco that Louise King brought over. (Who knew Costco had great roast chicken?) Mom got Dad to call me to see if I wanted the bones since she wasn't going to use them. (I said no.) So very Mom.

Tuesday, August 14, phone conversation

Long chat with Mother this morning. She is really making preparations, reflecting a lot, remembering a lot...
BB confirmed that he is coming into Dallas the same weekend that Glen and I will be there. We're going to let it be a surprise to Mom.

Polly talk, August 15 and 16

I'm trying to call Mother as often as I can, in the mornings when she's less tired. I talked to her last time about her concern about Sam; I know she's talked to both of you about this too. She read me the letter she wrote. This blew me away: The sentence, "I am an alcoholic."
In all the decades we've been dealing with Mother's alcoholism, I don't think I've ever heard her say those words.
It almost seemed like she wrote the letter to Sam so she could read it to us and say them that way.
And the ripples in my brain pool from hearing her say that are still sloshing around in my head.

This morning when I called, she said she'd had a bad night and had a call in to her hospice nurse.  She was the worst I've ever heard her; I'm sure you two have heard the gasping speech before, but she usually rallies when we are on the phone. Today she had to take a breath between every word. Painful to listen to and excruciating for her. 

She was eager to tell me about a long conversation with Beverly Brown. She and Jim are contemplating moving to assisted living, but I think they mostly talked about the rift in the Malouf family. I think Mother felt good about making the connection.

Her caretaker was there to give her a bath. Her skin has been bothering her, and I told her my rather complicated regimen for moisturizing, so she was going to try that.

Tuesday, August 14, 2012

A Quiet Monday Afternoon

Spent a quiet Monday afternoon with Mom yesterday. Her room is really quite peaceful. I have never spent any time in that room, visits have alwasy been in the living area. But as she said yesterday, "It is really the nicest room in the apartment."

The large north-facing window is filled with the green leaves of a fast-growing "trash" tree. When they moved into the apartment, the top of the tree barely reached the window sill, now it fills the window. Its fresh green leaves filter the light and the result makes for quite a tranquil afternoon.

Her bed of course is filled with lists. She wanted me there to fill out her Willed Body Donation application to UT Southwestern Medical. If they accept her body, they will pick it up, eventually use it, and when they're done they cremate and return some ashes, if desired. Dad gets frustrated easily by questionaires (I saw this when accompanying him to appointments last summer.) And I suspect it was easier for her to discuss the form with me than him. There were a lot of personal questions which Mom discussed very openly. There was a sense of honesty and reflection. Conversation was easy.

I met Sharah, the new helper. Mom had had her bath, one reason she was so relaxed. She said it amazing how she could let go and trust Sharah to hold her. Sharah also is willing to learn to do things Mom's way including making the bed. Mom never did let or even show Mary Gouge how to maker her bed. She knew Mary would never be able to get it right. Susan and I paid the price. In all the years Mary changed our sheets, they always came loose in a couple of days.

Dad was gone while I was there, he had an appointment with Dr. Wiggins. When he came back and they started to discuss dinner and such, Mom began to return to form and it was time for me to go.

Friday, August 10, 2012

Timmerman conversation

Friday, August 10

Talked to Mother today after her conversation with Dr. Timmerman. She said she was slightly confused by what he said and asked me to call him to clarify. I called and talked to Alita (sp?) the nurse practitioner.

Timmerman said if Mother were stronger, he'd suggest waiting a couple of months, doing another scan, then possibly doing a focused radiation of the cancer. (This is what confused Mother; she thought he was suggesting this.)

Alita says she's not strong enough, and won't be. The last cyberknife treatment damaged her lung considerably and there's no way she could withstand another one. (No news.) She says the cancer they treated before was a Stage One non-small cell; they don't know about this one, of course, since they didn't do a biopsy, but it appears to be involving her lymph nodes, in which case it's untreatable at all.

Evidently, her conversation with Timmerman made Mother afraid that she had "jumped the gun" by signing up with hospice, that perhaps there was another treatment option that would not diminish her quality of life.

But not.

Unless she revokes her DNR, no more appointments are necessary with Timmerman, Alita says.

So, no news in a way, but the last shoe dropped.

Wednesday, August 8, 2012

Letter to Mother

Okay, as Helen knows from my phone call and Dave might know from my response to his last post, I freaked a little bit after my last three conversations with Mother: To me, she seemed to be losing it. Lashing out, not thinking well, etc.

Now I understand the bath fixed everything.

Meanwhile, I wrote her a letter, which I'm going to post here, because even though I might have been overreacting, I think there is still some good shit here.

Also, I read over Kubler-Ross's five stages, which helped me gain some perspective.
Anyway, here's the letter:
Dear Mother,

Things seem to have become very frantic lately, with not even enough time for a calm phone conversation. So, since I have some things on my mind, I thought I'd write instead.

You made the most important decision of your life last week. (Actually, I think having children is equally important, but for some reason we never consider that.)

You decided to die.

That's basically what signing the DNR order and agreeing to hospice care means, even though we don't like to say it out loud.

I know you've thought about this a lot and for a long time and I don't doubt for a second that you know what a serious decision this is.

I do wonder, though, if you've taken a deep breath and worked through how you feel about it. We are a family that figures out what they think first, and works at understanding how they feel about what they think, later. We're so smart.

You seem more frazzled and less "together" than I've ever known you to be. UNDERSTANDABLE!!!

You must be scared. And sad. And, being you, extremely uncomfortable with the loss of control that this decision implies. (There's a reason we've always called you General Fullcharge, after all.)

For the first time (since I've known you), you are going to be helpless in many ways. You cannot direct how this is going to go. You're going to have to let other people help you, without your instructing them. Chances are good that some beds will be made without hospital corners and some towels will not be folded in thirds. And I suspect, most lovingly, that this will make you nuts.

I suppose you don't regret things once you're dead. But if you do, I think you'll regret it if you focus on the little things instead of the big ones right now. This is the ultimate carpe diem moment. And you've always told us to carpe diem. Time to do what you say.

Okay, this is big advice from your child who's never faced anything like this. I apologize if I sound the least bit condescending/know-it-all/lecturey. I just hate to hear you sound so frantic.

You do have people who know what they're talking about, unlike me.

Your hospice has counselors: it would be good for you and Daddy to talk to them, together and individually. You have friends: June and Mark Anschutz come to mind. And you have, as we have always said to each other, a most loving and intelligent and remarkable family, standing by to do anything, including deep talk, that could possibly make you more comfortable, more serene, more joyful, even, with the courageous decision you have made.

Finally, and here I'm totally out of my depth, you have your faith. This is what it's about. Let it sustain you. Act out the serenity prayer.

Forgive me if this is all comes across as presumptuous. If I were there, I'd just give you a big hug. That's what all these words really mean. I want you to feel better and calmer, and I want you to rest against the knowledge that you are deeply loved.

I love you.

Wednesday Morning Phone Call

Just talked with Mom. It's the first time this week she hasn't been too busy to talk. Either Hospice has been interviewing them, or they've been interviewing potential services.

Mom seems to be getting exhausted quicker. One thing was that the new oxygen system was set to 3.5 where her old system was set to the maximum 5. Over the last few days she's noticed the difference. While she has been unable to determine why and who said the system was to be set at the lower output, she and Dad decided to change the setting on their own. She said she can tell the difference and is feeling a liitle bit better.

Sharah, their new caregiver/helper who came through Hospice looks like she is going to provide Mom the help she needs. She cleaned out the vegetable drawer and threw out some too old produce and when Mom got off the phone, she was going to help Mom shampoo. Mom feels good about her and seems to like her.

I called yesterday afternoon from Central Market to see if they needed anything. Mom said they had been so busy over the weekend with Hospice stuff that they hadn't been to the store. Dad had a big list and was on his way to do the shopping. Apparently Dad fixed dinner last night, salad, baked potato and lamb chops. Mom said it was delicious!

We discussed communication with the cousins. She's talked to Betsy and Marian, I've been in touch with Sam and Don and Don's been in touch with Didi and Anne. Is there anybody else with whom we need to be in touch?

Of course we didn't discuss her diagnosis or prognosis, or even when the next doctor appointment is. The focus is very definitely on the NOW. One day at a time.


Tuesday, August 7, 2012

... and this from Betsy

David Waddington <> to

Hi Betsy,
I finally got your email address from Mom and wanted to keep you up to date with her health. She has been diagnosed with new cancer in her lung and it's seems to be in an aggressive mode. In her current state of health, options are somewhat limited, so she is going to " focus on quality rather than length of life." Last summer I started a blog which Mary and Helen and I use to keep each and anyone who is interested, up to date on the latest developments. Please feel free to bookmark it if you so desire. Comments are unrestricted if you wish to join in the discussion.
Here's the link:  Don and Polly Medical Log
Her state of mind is good. The last few months have been tough and I think she's relieved to know what's been causing the decline.
Love to all,
Elizabeth Gouvernayre <> to David Waddington <>

Dear David,
Thanks for letting me know and I am so sorry to hear about Aunt Polly's health.  She is such a wonderful person and it hurts me to know she is grappling with such an aggressive enemy.  I will join your blog and "talk" when I can.
Tim and I are leaving for Denver Thursday, 8/9 and coming back 8/19.  I got such a nice letter from Aunt Polly just this week, so I will give her a call tonight.
Thinking of all of you,Love, Betsy

Response From Cousins

I sent links to all the cousins, here is what I heard. Sent an email with link to Betsy today.


Aug 5 (2 days ago)
to me

Thanks for the update, David.  It's so sad to read, but she has had a great life and has been such a great inspiration to so many.  Our thoughts are with all of you.  Love to all.

-----Original Message-----
From: David Waddington <>
To: Susan Waddington <>; Travis Waddington <>; Michael Waddington <>; Don Schanche <>; Marian <>; samosbo <>
Sent: Fri, Aug 3, 2012 10:49 am
Subject: The latest on Polly.
Here's the latest on Mom's cancer. She has not been doing so well lately. I think it's a relief to finally know why. Love to all.
Don and Polly Medical Log. Stardate 2012

 Reply Forward

Don Schanche
Aug 5 (2 days ago)
to Didi, Anne, me

Hey David --
Very sorry to hear of the turn in Aunt Polly's health.
Didi & Anne and I send our love, of course.
We were also thinking of paying a visit. Wanted to know if you think that's OK, and when you think we should plan it.
Yr cuz,

Saturday, August 4, 2012

Hospice and more

I understand that at the appointment on Wednesday, Dr Kirk told Mom that the treatments that are available to her are extremely uncomfortable and have very little chance of success.

Mom has chosen quality of life over aggressive treatment.

Mom called me Friday and asked if I could come and be at the apt while a person from Faith Hospice came. So I did.
Faith Hospice was highly recommended by both Kirkpatrick and St. M. That was good.
The hospice rep was an RN named Grace and she spent over an hour talking to us about the process and what to expect. At the end of the hour Mom signed the documents. Grace spent another hour going through the process of getting Mom admitted. Taking vitals, reviewing prescriptions and so forth.

First, what hospice will do and what Mom has to do to be in hospice care.
1. Mom will stay at home.
2. Mom will no longer pursue aggressive treatment for the cancer. That doesn't mean she wont continue to take the meds she takes, just that she won't have a biopsy, chemo or radiation.
3. If a crisis occurs, the first call will be to hospice not 911.

Hospice will provide:
1. A person who answers the phone at the hospice number 24/7. A doctor is on call 24/7.
2. Because the hospice is associated with Presby they can reach Dr. Kirk and can communicate directly with him regarding Mom's care. They are the "eyes for Dr. K."
3. All meds on their formulary the rest will come from CVS as usual.
4. An RN who will Mom's main caregiver (consistency) will come 1-3 times per week as needed. .When she wants someone to help bathing, etc. they will provide someone.
5. Oxygen. That means they will change out Mom's current oxygen with theirs. BTW This happened today, Saturday. They brought a new condenser, a humidifier, more small tanks and a large tank in case the power goes out.
6. A "comfort kit" in the fridge with some very strong drugs that can be administered as directed by a hospice representative. (Like in the middle of the night, Mom needs something. Dad can administer drugs.)
7. A social worker and a chaplain.
8. If there is a crisis, hospice will send licensed vocational nurses for 12 hour shifts. If the crisis passes, then they will back off. If not, they are there.
9. Faith hospice is not for profit, but their expenses are paid by Medicare.
10. There is no set end to hospice. It can go on for as long as the patient does not pursue aggressive treatment.

Mom is very concerned about housekeeping. Grace was not really able to help with suggestions but Susan came by and suggested that the husband of a couple that works for Marilyn needs work for 2-3 days each week. Not only will he do laundry and beds, etc. he is a professional cook and could do the food prep that will allow Mom to continue to cook meals. By the end of the evening, Mom was really leaning in this direction. I hope she will, he sounds perfect.

The goal of hospice is to allow the patient to live life to its fullest (their words). They "take the patient as a whole". Mom said that she wants to be "As comfortable as possible and as pleasant as possible to myself and others."

They do have volunteers who will come and help go through stuff. Organize photos, etc. In their book, they talk about helping the patient cull their most important, favorite photos and make a CD of them. Mom rejected that out of hand, of course, but I think that it might be a good idea.

Hospice provides 13 months of bereavement counseling after death. That might be a good thing for all of us especially Dad.

Grace and a person who works for the apartment witnessed the DNR and I made copies and distributed. (I have one for you, Mary). They need to be readily available to all.

I think that overall Mom feels a weight off. The rest of us may feel a weight on.
Love to all. xxoo


Email from Mary, Friday Morning


mary brown malouf
10:24 AM (16 hours ago)

to Helen, me
Please bear with me.

I feel like I'm obsessing, but since I'm not there to hear everything that's discussed,I have all these questions. You may have already asked them and don't know the answer, or no one does. But information makes me feel better, so I'm asking, in case you do know.

What type of cancer does Mother have? Is it fast growing?
Cancer is often described in stages; what stage is she?
At what point will she need hospice care?
Does she sign up for a hospice now to use when she needs it?
She has another appointment with Dr. TinMan, right? When is it, what's it for and can one of you go?
Or can one of us go to her next doctor appointment to ask some questions?
Do her St. Michael peeps know about this diagnosis?

Helen: what about just PAX? For the bracelets?


Thursday, August 2, 2012

Thursday conversation with Mother and Daddy

Mother says that Danals is out of town but she spoke with a new priest(ess) at St. Michael who looked into hospices and seconded Kirkpatrick's recommendation of Faith. Mother said I should not let the name put me off. ;-)

They both actually seem more cheerful than they have been. I feel like Mother has been waiting for something definite.

My main concern is to get us down there, and Anna and BB, in the next month or so.

Thanks for keeping me in the loop.

Cancer Battle Officially Re-engaged

I remember sitting in Dr. Timmerman's office last summer when he looked at us and said "with a tumor this size, that there was a 30-40 % chance that there were cancer cells already working that were not yet evident." The normal treatment path would have included chemotherapy to treat these cells, but that Mom's physical condition did not allow for this rigorous course of action. So it was decided to use the Cyberknife to treat the large tumors in her lung. This meeting was described in the blog entry of Thursday, August 4th of last summer.

So today, the cancer is once again active.

In Mom's words as best I could transcribe from a telephone call, "Kirkpatrick (her oncologist) said the latest PET scan showed more cancer in the lymph nodes surrounding the pulmonary artery. It is active. Cancer cells use more glucose so when the radioactive glucose hits active cancer cells, it lights up like the Fourth of July... I told him I was interested in quality of life not length of life... It could be treated with small doses of chemotherapy which would not have drastic side effects and radiation which would take out her energy and strength.... Kirkpatrick will consult with Timmerman, who is on vacation but who should be back in town any day now.....Need a different way of looking at Hospice. Start an early base line with hospice so they will be better able to help in the end stages."

That's the end of my notes. They were getting ready to leave to go meet Helen and Will for enchiladas at El Fenix. I left work early and met them at the restaurant. Mom and Dad had margaritas. Spirits were good and we rehashed our recent vacation time in Santa Fe.

Conversation became more serious back at their apartment after dinner. Mom said at the beginning, "We all knew this was coming and is no surprise..." Service plans and crematorium contract were out on the dining room table. Lists covered the spare bed in her bedroom. She's been planning this event for a while now.

The first topic is DNR orders. She has a form signed by Dr. Russo. It needs to be witnessed by non-family members, then copies will be distributed. They should be easily and readily accessible to emergency personnel; or anyone who might drive her to a hospital. When DNRs are needed, there is rarely time to look in files. Will got information on bracelets, which are not casually obtained.

DNRs are not casual documents. They do not allow resuscitation. Period. No CPR. No paddles. No breathing tubes. If you're young and in good health, you probably don't want one. According to Wiki, there is a move to change the designation to AND. Allow Natural Death.

As Susan and I found out with Marilyn a few weeks ago, the closer one is to the Great Alternative, the more difficult the choice becomes. As Marilyn said, "I want to live." The DNR can be revoked by the patient at any time.  Click here for a copy of the Texas DNR.

Of more immediate concern is domestic help. The Senior Service they have been using fired Mom this week. She wants their services more as domestic help than caregiving. So she has some leads and will begin the search for someone new today. Isabelle is OK every other week for cleaning and Mom does not want ot have to train someone else to clean. She does want someone several times a week to do laundry, change the sheets and chop a few vegetables.

Dr. Kirkpatrick also said it would be a good time to start investigating Hospice so that when the time comes that she needs the palliative care, the relationship would be in place. She was going to talk to Bob Dannals for a recommendation.

I think that's brings things up to date.