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.
Friday, August 10, 2012
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:
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.
mmxxoo
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.
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.
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.
mmxxoo
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.
d.
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.
d.
Tuesday, August 7, 2012
... and this from Betsy
David Waddington <dwwaddington@gmail.com> to egouvernayre@yahoo.com
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,
David
Elizabeth Gouvernayre <egouvernayre@yahoo.com> to David Waddington <dwwaddington@gmail.com>
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.
Dave.
Inboxx
samosbo@aol.com
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 <dwwaddington@gmail.com>
To: Susan Waddington <srectorwaddington@gmail.com>; Travis Waddington <travis.waddington@gmail.com>; Michael Waddington <mwaddington@gmail.com>; Don Schanche <donschanche@yahoo.com>; Marian <marianwo@att.net>; samosbo <samosbo@aol.com>
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
Dave.
Reply Forward
Don Schanche donschanche@yahoo.com
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,
Don
Dave.
Inboxx
samosbo@aol.com
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 <dwwaddington@gmail.com>
To: Susan Waddington <srectorwaddington@gmail.com>; Travis Waddington <travis.waddington@gmail.com>; Michael Waddington <mwaddington@gmail.com>; Don Schanche <donschanche@yahoo.com>; Marian <marianwo@att.net>; samosbo <samosbo@aol.com>
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
Dave.
Reply Forward
Don Schanche donschanche@yahoo.com
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,
Don
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
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
obsessing
Inbox
x
Inbox
|
10:24 AM (16 hours ago)
 | | ||
| ||||
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?
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