We are starting to get to know the various hospice workers and have a bit more sense of routine.
The nurse comes Tuesdays to check weight, blood pressure, eating, sleeping, etc.--basically to make sure the meds are still at the right level
The home health aid starts next week. She can do a bath if grandma wants, but since grandma likes Beza better (the private aide who comes Saturdays) we are just going to phase this aide in slowly doing things like foot care and lotion.
The companion volunteer comes Wednesdays to have lunch with Lil and maybe go for a drive
Elaine comes Tuesdays to visit and go for drives and things (she may not be a hair dresser but she does a good job playing one).
The "homemaker" comes Fridays to cook and clean
and the social worker doesn't have a regular schedule.
The only ones we haven't yet met are the end-of-life counselor or the "safe crossings" people to work with the kids, but there is time for that as we go forward.
We still have Thursday nights to figure out, but my evening class doesn't start for two more weeks.
Yesterday, grandma and I went down to the denturist to get her plate adjusted and now she is mostly able to get it out by herself (she had to learn a new way--to pull from the back and sides instead of the front, and it wasn't easy for her.) But at least now it feels good and she can manage it herself--independence is just as important as ever to her.
Still on the list is an appointment to get her eyes checked. She still reads everyday, but not as much as she used to because she is complaining that it is harder to see the print. It is possible that she may have had some TIA events around the time she was in the hospital (like a super tiny, transient stroke) and even when there don't seem to be lasting effects, we are told they can affect vision, so a check is in order. She doesn't like to try to watch TV at all anymore--it's too hard to see the closed captions. It makes me really glad that there are so many more people in her life these days because I worry about her being bored, even when I am here, since I am so often working. We are all really looking forward to Tana and Jason's visit, and we hear rumors that Mike is coming, and I know she will really enjoy that as well.
Anyway, over all, grandma has been in the best spirits this week since she left the hospital. The Metamucil wafers which the nurse recommended seem to be working better than the other things we have tried for the IBS, which goes a long way toward daily comfort and not having to get up at night. Here weight is back up to 95 and seems to be stabilizing there on a 40 ml dose of Furosimide. We've had good company too. Nurmi was here briefly over the weekend after helping Jamison move, and mom and papa came over for dinner after papa spent the day helping Marty and me at the Fall City place and mom took Avi, Oliver, Daniel, Disa, and Diana to Discovery Park. We were all exhausted by the end of the day so we just picked up a Papa Murphy's take-n-bake pizza and a couple of six packs. Grandma gamely eats anything we do, whether it's pizza or corn on the cob or Marty's creative concoctions with veggies and Asian sauces in the wok--in fact, I think those are her favorites--she and Marty both love their onions. Last night it was beets from the CSA box with onions and Gorgonzola. Yum.
I also want to say, in case folks haven't heard, that our hearts are with Elaine and Paul as they deal with the loss of his brother at only 45.
Well, I gotta go to the clinic to see my clients.
The volunteer (Linda) is coming today to take grandma to the Essential Bakery and maybe a drive after that and I should be home around three.
Wednesday, September 16, 2009
Saturday, September 12, 2009
Report from the hospice nurse
Grandma's weight seems to have stabilized around 93 pounds. She does have a relatively low heart rate (probably due to the influence of the Carvidilol) but not so low as to be of concern (e.g. it does not cause light headedness) so Dr. Terharr did not alter her medication.
We have several people scheduled now from Hospice:
The volunteer companion is coming on Wednesday to have lunch with Lil and sit and talk and maybe go for a drive.
The home-maker is coming Friday to do chores like wash the kitchen floor and clean the bathroom, as well as make a lasagna or something to last the week for lunches.
The social worker is trying to set up a time with the home health-care aid to introduce her to Lil and maybe do some foot care and lotion/massage. (Evidently she came last week at a time I didn't know about and wasn't there and grandma turned her away not knowing who she was.)
And of course, Elaine is coming on Tuesdays.
Anyway, there's just a ton of people to coordinate but it will be great when it's all in place.
We are still thinking of hiring someone for Thursday nights next quarter when both Marty and I have class since it will need to be someone who can both have dinner with Lil and put our boys to bed.
We have several people scheduled now from Hospice:
The volunteer companion is coming on Wednesday to have lunch with Lil and sit and talk and maybe go for a drive.
The home-maker is coming Friday to do chores like wash the kitchen floor and clean the bathroom, as well as make a lasagna or something to last the week for lunches.
The social worker is trying to set up a time with the home health-care aid to introduce her to Lil and maybe do some foot care and lotion/massage. (Evidently she came last week at a time I didn't know about and wasn't there and grandma turned her away not knowing who she was.)
And of course, Elaine is coming on Tuesdays.
Anyway, there's just a ton of people to coordinate but it will be great when it's all in place.
We are still thinking of hiring someone for Thursday nights next quarter when both Marty and I have class since it will need to be someone who can both have dinner with Lil and put our boys to bed.
Thursday, September 10, 2009
Using this blog & news about my visits
Thanks for the additional information about how to set it up to receive updates about new posts--saves checking in for them. Ariel, I really appreciate the details you're including in your posts. For now, I think it's wise to keep the blog limited to family. However, my definition of family includes those who have an active interest in how she's doing--which may include some in Finland such as our recent visitors, Tarja & Reijo Lapinniemi and Ilpo Husa & family.
I'll try to find time to post news from my Tuesday afternoon visits also, such as our outing this week to enjoy the sun, sights and scenery through Ballard, Golden Gardens, Green Lake, Gasworks and back through the Arboretum. Lil definitely enjoys getting out and is very quick to be "ready to go" for any outing. This week, she didn't even take time to change out of her comfortable pajama-type pants. :)
I'll be back for another visit next Tuesday afternoon around 1:00-1:30. If the weather's good, we'll go out for a drive.
I'll try to find time to post news from my Tuesday afternoon visits also, such as our outing this week to enjoy the sun, sights and scenery through Ballard, Golden Gardens, Green Lake, Gasworks and back through the Arboretum. Lil definitely enjoys getting out and is very quick to be "ready to go" for any outing. This week, she didn't even take time to change out of her comfortable pajama-type pants. :)
I'll be back for another visit next Tuesday afternoon around 1:00-1:30. If the weather's good, we'll go out for a drive.
Social Worker report
Met with the social worker today. Many good things are going into place--a volunteer to come and have lunch with Lil on Wednesdays and just sit and talk or go for drives (Wednesday I see clients all day); a housecleaner/homemaker to come every Friday (the day I have school) to make a week's worth of lunches (e.g. lasagna or something) as well as do things like bleach the bathroom, mop the kitchen floor, do the laundry, clear the left overs out of the fridge, sweep, and vacuum, etc.; A medical personal care worker to help grandma with foot care, lotion (and massage) for dry skin, mouth care, and whatever else comes up; and a nurse for tracking medical issues (first visit tomorrow and after that as medically indicated), and a counselor who speaks with people about making meaning of life and thinking about and preparing for a good death. We also asked the social worker to start the process of getting us in touch with the "Safe Crossings" counselor for the kids.
The one program we do not qualify for (because Lil is not on Medicaid) is the program that pays family members for doing care, so we won't have the help defraying the expense of Beza or med co-pays, but that's not such a big deal when it is really the only thing grandma is needing to cover out of pocket.
Grandma is still gradually losing weight since her hospital visit. I've reduced the water pill again a couple days ago to 20 ml a day (as the doctor authorized me to do) but I haven't seen the weight loss stop, and she's down to about 92 pounds. The theory I've had since before she went into the hospital is that she actually started losing weight during the very hot weather in July, but that it was masked by increasing fluid retention so that it didn't show up until she got home from the hospital and went on the higher Furrosimide (diuretic) dose.
Anyway, weight and digestion are on the top of the list for the nurse tomorrow. Grandma's appetite has not changed (it's still good) and we are really making sure that she gets three balanced meals a day, as well as things to counteract what seems to be a kind of irritable bowel syndrome (like Metamucil crackers and extra calcium), but it just seems like she is not being able to digest much of what she eats--it just goes right through her. One of the things mom suggested I ask the nurse about tomorrow is a supplement like Ensure or something high calorie and easy to digest, so we'll see what the nurse suggests.
It was good to meet the social worker. Grandma enjoyed telling her some of her history and things about herself she wanted the social worker to know--like that she is independent and clear thinking, and wants very much to stay living in her own home. When the social worker (or anyone) asks if she has any pain or symptoms, she always says no (even though she tells me all about them whenever they happen). I think she simply lives in the moment and anything that isn't bothering her right now just goes out of her head. It's really a pretty adaptive trait.
She is still having frustrations removing her new dental plate and she mentioned to me today that she wants to get her eyes checked to see if she needs a new prescription because it is getting harder to read. I'll be on break next week so it will be a good time to go do those things.
Marty is hoping to get out and do a good day's work on the Fall City place on Sunday which might just be enough, with all the work Stefan put in, to get us finally out of there so we can rent it. That will be such a relief--both to have that albatross gone and to have the income. It's just been so hard to squeeze that work in with everything going on for us.
The boys had a great first day of school (though grandma already says she misses having their noise and busyness around) and both are excited about the coming year. We got email from Tana that she and Jason are arriving on the 26th to visit for a week, which we are really excited about. They'll be renting a car so they can take Lil around while they are here. They have dibs on the living room hide-a-bed, but if other folks end up dropping by, there's still the hide-a-bed in our room, the red couch in the basement, or a mattress on the floor in the boys' room--grandma really likes the company so we don't want to turn anyone away.
Today is a beautiful day and grandma is taking the opportunity to sit outside on the deck in the sun and watch the birds in the garden. She's probably napping too. She usually does in the afternoon.
I've got to get back to work. I'll post again soon. Please comment if you have any questions because other people probably have them too.
The one program we do not qualify for (because Lil is not on Medicaid) is the program that pays family members for doing care, so we won't have the help defraying the expense of Beza or med co-pays, but that's not such a big deal when it is really the only thing grandma is needing to cover out of pocket.
Grandma is still gradually losing weight since her hospital visit. I've reduced the water pill again a couple days ago to 20 ml a day (as the doctor authorized me to do) but I haven't seen the weight loss stop, and she's down to about 92 pounds. The theory I've had since before she went into the hospital is that she actually started losing weight during the very hot weather in July, but that it was masked by increasing fluid retention so that it didn't show up until she got home from the hospital and went on the higher Furrosimide (diuretic) dose.
Anyway, weight and digestion are on the top of the list for the nurse tomorrow. Grandma's appetite has not changed (it's still good) and we are really making sure that she gets three balanced meals a day, as well as things to counteract what seems to be a kind of irritable bowel syndrome (like Metamucil crackers and extra calcium), but it just seems like she is not being able to digest much of what she eats--it just goes right through her. One of the things mom suggested I ask the nurse about tomorrow is a supplement like Ensure or something high calorie and easy to digest, so we'll see what the nurse suggests.
It was good to meet the social worker. Grandma enjoyed telling her some of her history and things about herself she wanted the social worker to know--like that she is independent and clear thinking, and wants very much to stay living in her own home. When the social worker (or anyone) asks if she has any pain or symptoms, she always says no (even though she tells me all about them whenever they happen). I think she simply lives in the moment and anything that isn't bothering her right now just goes out of her head. It's really a pretty adaptive trait.
She is still having frustrations removing her new dental plate and she mentioned to me today that she wants to get her eyes checked to see if she needs a new prescription because it is getting harder to read. I'll be on break next week so it will be a good time to go do those things.
Marty is hoping to get out and do a good day's work on the Fall City place on Sunday which might just be enough, with all the work Stefan put in, to get us finally out of there so we can rent it. That will be such a relief--both to have that albatross gone and to have the income. It's just been so hard to squeeze that work in with everything going on for us.
The boys had a great first day of school (though grandma already says she misses having their noise and busyness around) and both are excited about the coming year. We got email from Tana that she and Jason are arriving on the 26th to visit for a week, which we are really excited about. They'll be renting a car so they can take Lil around while they are here. They have dibs on the living room hide-a-bed, but if other folks end up dropping by, there's still the hide-a-bed in our room, the red couch in the basement, or a mattress on the floor in the boys' room--grandma really likes the company so we don't want to turn anyone away.
Today is a beautiful day and grandma is taking the opportunity to sit outside on the deck in the sun and watch the birds in the garden. She's probably napping too. She usually does in the afternoon.
I've got to get back to work. I'll post again soon. Please comment if you have any questions because other people probably have them too.
Wednesday, September 9, 2009
A note about posting...
Nurmi can correct me if I don't have this quite right, but I believe that if I have added you as an author, you have received an invitation as an email. Once you accept the invitation, I hope that the way to post is obvious (in my interface, it shows up as a link on the main screen every time I view the blog). If I want to come back and edit a post after I have published it, I click on the pencil.
A note on etiquette: Because this is a protected space which you can only view with administrator permission, I have decided that I feel ok about referring to my kids by name, however, just as a courtesy, I am referring to other people's kids by first initial only unless they do otherwise.
Please let me know if you are unclear about how to post or if you have any problems. Thanks
A note on etiquette: Because this is a protected space which you can only view with administrator permission, I have decided that I feel ok about referring to my kids by name, however, just as a courtesy, I am referring to other people's kids by first initial only unless they do otherwise.
Please let me know if you are unclear about how to post or if you have any problems. Thanks
Hopes and dreams for this space...
Hello family,
Thanks for your patience with me and this blog platform as I get things up and running. I haven't been as organized as I could have been about inviting people and there are still more I would like to invite but don't have addresses for yet. Right now, it is pretty much just close family--I'd like feedback about whether people would like to see this circle opened bigger or if we should keep it small and intimate. Please comment or email your responses: ariel.caspe.detzer@gmail.com.
As this blog has taken shape over the last few days, I have been thinking about the direction and purpose I can imagine it might take. As I've considered this, I've made a few changes in the format. First, I've gone ahead and added several more people as authors--this includes Steve and Mike and mom and Anne and all the grandkids, as well as family like Nurmi and Elaine who see Lil frequently. We can have up to 100 authors on this platform, so don't hesitate to recommend others. I've also changed the openness level of the blog so that people will need to be approved by me (or another administrator--so far there's just me--anyone else want to be an administrator? Steve? Mike? Mom? Anne?) in order to access the blog. I did this in order to make this space somewhat more private for family.
My hope is that this can become a blog not just about what Lil is up to, but a place where we, as a family, can begin to share about the experience of having Lil as a mom, grandma, aunt, and so on, remembering with her an amazing life, and supporting her (and each other) towards a good death.
So far, though she knows about this blog, she has not been particularly interested when I offer to share it, (but that may well change as other family members post whom she does not see every day). The best way to contact her directly, of course, is through the email Tana has set up for her at (I'm not at home so I don't have that address handy, but I'll edit this entry to include it as soon as I get it.)
On the other hand, we might, as a family, make a choice to create this as a separate space where people can share the thoughts and feelings that come up around grandma's declining health in a way that does not impact her (that is, we could decide that this is a place she won't see, and that if we want to communicate with her, we'll email her directly.) There may be some feelings that we benefit from sharing with each other that we would feel better not sharing with her. Please give me your feedback as to which way you'd like to see this blog go. At the moment, the default is that Lil is not reading this blog.
My hope for this blog is that I want to invite people to start reflecting on and sharing thoughts and feelings about grandma because so often we only do that kind of really important reflection after someone dies. If we go there now, we can better connect with each other around grandma's life, and we can choose to share those things with her we realize are really important to share. We made a great start at grandma's 100th birthday, but there was so much that wanted saying that there was not time for on that day. Mike, I'm speaking just for myself here, but I wanted to let you know that I would particularly love to know more about some of the stories you were sharing with us on your last visit here about grandma's political doings. I want to make this blog a place where everyone feels free and welcome to share.
The writing we do here now will not only help us rally around grandma as a family, it will help us connect around the other serious illness that is impacting us all to a greater or lesser degree--Daniel's brain tumor. One of the things I value most about our family is that, as far flung as we are, we do not let our family members cope with big things alone. This is a way that, even in Texas and Paris and St. Louis and New Orleans, we can come together with that same kind of support.
The final important reason I encourage you all to post here is that anything we write here can be saved in a permanent way as a lasting legacy. As each of us begin to volunteer reflections, we will inspire and encourage others in the family to add to the story. In this way, we can create a patchwork of memories and reflections and hopes and fears and thankfulness. Most importantly, we can hold those feelings in a shared way, no matter how far apart we may be.
Thanks for your patience with me and this blog platform as I get things up and running. I haven't been as organized as I could have been about inviting people and there are still more I would like to invite but don't have addresses for yet. Right now, it is pretty much just close family--I'd like feedback about whether people would like to see this circle opened bigger or if we should keep it small and intimate. Please comment or email your responses: ariel.caspe.detzer@gmail.com.
As this blog has taken shape over the last few days, I have been thinking about the direction and purpose I can imagine it might take. As I've considered this, I've made a few changes in the format. First, I've gone ahead and added several more people as authors--this includes Steve and Mike and mom and Anne and all the grandkids, as well as family like Nurmi and Elaine who see Lil frequently. We can have up to 100 authors on this platform, so don't hesitate to recommend others. I've also changed the openness level of the blog so that people will need to be approved by me (or another administrator--so far there's just me--anyone else want to be an administrator? Steve? Mike? Mom? Anne?) in order to access the blog. I did this in order to make this space somewhat more private for family.
My hope is that this can become a blog not just about what Lil is up to, but a place where we, as a family, can begin to share about the experience of having Lil as a mom, grandma, aunt, and so on, remembering with her an amazing life, and supporting her (and each other) towards a good death.
So far, though she knows about this blog, she has not been particularly interested when I offer to share it, (but that may well change as other family members post whom she does not see every day). The best way to contact her directly, of course, is through the email Tana has set up for her at (I'm not at home so I don't have that address handy, but I'll edit this entry to include it as soon as I get it.)
On the other hand, we might, as a family, make a choice to create this as a separate space where people can share the thoughts and feelings that come up around grandma's declining health in a way that does not impact her (that is, we could decide that this is a place she won't see, and that if we want to communicate with her, we'll email her directly.) There may be some feelings that we benefit from sharing with each other that we would feel better not sharing with her. Please give me your feedback as to which way you'd like to see this blog go. At the moment, the default is that Lil is not reading this blog.
My hope for this blog is that I want to invite people to start reflecting on and sharing thoughts and feelings about grandma because so often we only do that kind of really important reflection after someone dies. If we go there now, we can better connect with each other around grandma's life, and we can choose to share those things with her we realize are really important to share. We made a great start at grandma's 100th birthday, but there was so much that wanted saying that there was not time for on that day. Mike, I'm speaking just for myself here, but I wanted to let you know that I would particularly love to know more about some of the stories you were sharing with us on your last visit here about grandma's political doings. I want to make this blog a place where everyone feels free and welcome to share.
The writing we do here now will not only help us rally around grandma as a family, it will help us connect around the other serious illness that is impacting us all to a greater or lesser degree--Daniel's brain tumor. One of the things I value most about our family is that, as far flung as we are, we do not let our family members cope with big things alone. This is a way that, even in Texas and Paris and St. Louis and New Orleans, we can come together with that same kind of support.
The final important reason I encourage you all to post here is that anything we write here can be saved in a permanent way as a lasting legacy. As each of us begin to volunteer reflections, we will inspire and encourage others in the family to add to the story. In this way, we can create a patchwork of memories and reflections and hopes and fears and thankfulness. Most importantly, we can hold those feelings in a shared way, no matter how far apart we may be.
Monday, September 7, 2009
Hospice Care
Marty, Lil, and I met with the nurse from Hospice today for about an hour and a half. They have a bunch of wonderful services they can offer. It's really a great model of health care--what health care should be really--wrap around care promoting wellness and emphasizing comfort. We are very glad for the support, although a little cautious because grandma's health is still relatively good so that, although she qualifies at the moment for services, it's not clear she will continue to qualify. Hospice staff reassess every ninety days, so it's quite possible she'll be off the program if she continues in relatively good health. It's kind of ironic actually--the full support services that Hospice offers can actually make enough difference in people's health that they no longer qualify. Ah yes, yet another American health care conundrum.
But for the time being anyway, we'll have more coverage for times when Marty's at work and I'm at school, and more support for better medical care for grandma--sometimes health care workers, sometimes companion care volunteers (since they asked Lil's interests, we suggested that perhaps there might be someone interested in gardening). And its very likely we can find someone interested in going for drives.
It is even permissible for hospice to pay for family members to give care--not that our family needs money on top of free rent (minus a few groceries and meds), but if Lil could have Hospice pay us, we could turn around and use that money to cover the private health care worker who is coming once a week, and whom Lil really likes. (We also want to keep Besa coming in case Hospice is an on again, off again type thing.)
The two services I am most looking forward to are the social worker to help coordinate services and financial decisions, and help us figure out what we can access in the community, even if grandma doesn't continue to qualify for Hospice, and then a program called "Safe Crossings" which funds a grief counselor who comes to the house to work with kids on issues like anticipatory grieving and other feelings which come up around illness and death. It may even be possible to include cousin O. if his family is interested.
It will be interesting to see how this hospice care goes--its really a different paradigm and I hope grandma can stay in the program. Under hospice, if there is any change in symptoms or an incident of concern, you start by calling the Hospice medical team. The Hospice doctors and nurses determine which treatment might be productive, or if not, than what comfort measures are most effective. It doesn't rule out hospital stays, but it does try to do much more care in the home and use them only as a last resort or for things unrelated to terminal illness. Of course grandma can opt out of Hospice at any time and simply choose to go to the hospital. If she makes that decision, she will no longer be in the Hospice program unless she signs up again.
It is a different way to approach care and I want to write about it so family is clear about the preferences Lil is expressing.
Here's an example to illustrate the differences: In the case of Lil's heart incident two weeks ago, the first difference in a Hospice model is that, instead of us noticing that something was up and then starting the process of getting a doctor's appointment during the few times a week Lil's doctor is available (which is the point we were at when she had the heart incident--e.g. still trying to set up an appointment), we would have called the Hospice medical team on the first day of observed symptoms (mental fogginess, increased shortness of breath etc.). The Hospice nurse would have come out that day and begun adjusting meds and care to manage the symptoms working under the supervision of the Hospice doctors. The nurse then comes out every day (or as often as indicated), until symptoms are under control again. If symptoms require, they bring basic minimally invasive medical equipment--oxygen, blood pressure monitoring, kits for testing urine and blood--and do the care in Lil's familiar home environment.
If, even with that kind of preventative care, she had still gone into tachycardia as six that Thursday morning, we would have started by calling Hospice instead of the consulting nurse. What actually happened that day was that I reported Lil's symptoms to the consulting nurse, she, on the theory of better safe than sorry, had me call 911 and in three minutes there were six firemen in big boots in Lil's tiny bedroom and a giant ambulance stretcher crowded into the living room.
My observation of the medics was that they are very sincere and committed, and very well trained for dealing with many kinds of emergencies, but that they don't really know what to do with a 101 year old who doesn't quite fit the profile of a typical emergency. They have certain protocols and certain ways of doing things which are rather lockstep. None of the treatments they administered had really any effect. When grandma came out of the tachycardia and reset to a normal rhythm, she did it spontaneously. Her timing was very good actually--a few more minutes and they would have shocked her heart (there were calling in to get special permission at the time because it's outside their usual parameters of practice). We have no way of knowing if that would have been effective, and in retrospect, we know that heart shocking really isn't part of the advance directive Lil has signed.
At the time, however, I didn't have any way of knowing whether heart-shocking was something she wanted (and neither did she--when the medics are there, you just sort of do what they tell you and hope for the best. In their line of work and way of approaching things, there isn't really such a thing as informed consent--they do get consent if they can, but there's no time for real informing, even at the hospital).
It turns out that, after talking over the specifics with Lil's doctor this last week, heart-shocking is not part of Lil's advance care directive because she doesn't want extreme measures. When it comes to "Life Sustaining Treatment," the directive Lil has signed says she wants comfort measures only and prefers no transfer to the hospital unless determined to be indicated by "medical control" (this means Hospice as long as Lil is in the program)--not EMS. For things like DNR orders ("Do Not Resuscitate"), it's pretty much all or nothing--you can't start interventions to save someone and then stop halfway through after causing damage you can't address--once you start down the road of emergency interventions, EMS is basically ignoring the orders she has signed.
Shocking the heart of a younger person can be an important life saving step, but if you do it on a fragile centenarian and then follow up with CPR, you can break ribs, damage internal organs, cause internal bleeding, and even cause brain damage (from the electricity), all of which take invasive and heavy duty medical measures to address, and all of which Lil has asked to not have. We had a general idea of Lil's DNR wishes before, in theory and more or less (and she had a signed directive in her records), but now we know them in black in white--well actually in black and neon green, on a very clear sheet up on the fridge and soon to be up on the front door as well, so if medics are ever called again--especially if Marty or I is not here, it will be clear to all involved.
Once you call the medics of course (and you don't have a clear POLST--"Physician orders for life-sustaining treatment"--the neon green page), you are pretty much guaranteed a trip to the hospital. Not that this last one wasn't worth it--I think it really helped us to get all the ducks in a row and get serious about asking Lil specifically what she wants so we can set it up. Also, the information from the EKG about the state of grandma's heart was especially good to get. We know now that there is progressive damage from the congestive heart failure, and that it is not the kind of damage that will get better. The normal course of the illness is slow deterioration over many months. She is strong and healthy and doing well, but best medical guess (though the guesses vary somewhat) is that it's even odds this Christmas will be her last.
With good care and support she will likely continue to have the very good quality of life as she has been having up til now. Hospice care will help us anticipate and manage problems before they become distressing, but as long as Lil is in the Hospice program, it is unlikely we will be calling 911 for reasons related to her heart (if she breaks a bone or something like that, different story all together). If her symptoms are heart related (shortness of breath, low blood pressure, irregular rhythm) we will call the 24-hour Hospice number and work with them. They will provide the best care possible in the home unless Lil requests otherwise. They will even be giving us a home kit of the kind of medicines that need to be administered immediately so that Marty and I can do so (working with the Hospice doctor over the phone) rather than getting the EMS folks involved. Hospice will then send our Hospice nurse to the home to follow up and provide care aimed at quality of life and relieving pain and suffering.
Anyway, one of the reasons I started this blog is to help family understand the state of Lil's health, what kind of decisions she is making about her health care, and what our family is doing to support her. I think the more we all know, the better we can support her wishes, and the more prepared we will be as her health changes.
After that long interview, grandma has gone off to take a nap and I'm trying to buckle down and get some school work done as this is the last week of the quarter. Tomorrow is the last day of summer break for the boys and everyone is pretty excited about starting up school for the fall (me included--I'll have at least a little time to rub two thoughts together again...)
Please comment if you have questions or concerns or else contact me or mom and papa directly.
But for the time being anyway, we'll have more coverage for times when Marty's at work and I'm at school, and more support for better medical care for grandma--sometimes health care workers, sometimes companion care volunteers (since they asked Lil's interests, we suggested that perhaps there might be someone interested in gardening). And its very likely we can find someone interested in going for drives.
It is even permissible for hospice to pay for family members to give care--not that our family needs money on top of free rent (minus a few groceries and meds), but if Lil could have Hospice pay us, we could turn around and use that money to cover the private health care worker who is coming once a week, and whom Lil really likes. (We also want to keep Besa coming in case Hospice is an on again, off again type thing.)
The two services I am most looking forward to are the social worker to help coordinate services and financial decisions, and help us figure out what we can access in the community, even if grandma doesn't continue to qualify for Hospice, and then a program called "Safe Crossings" which funds a grief counselor who comes to the house to work with kids on issues like anticipatory grieving and other feelings which come up around illness and death. It may even be possible to include cousin O. if his family is interested.
It will be interesting to see how this hospice care goes--its really a different paradigm and I hope grandma can stay in the program. Under hospice, if there is any change in symptoms or an incident of concern, you start by calling the Hospice medical team. The Hospice doctors and nurses determine which treatment might be productive, or if not, than what comfort measures are most effective. It doesn't rule out hospital stays, but it does try to do much more care in the home and use them only as a last resort or for things unrelated to terminal illness. Of course grandma can opt out of Hospice at any time and simply choose to go to the hospital. If she makes that decision, she will no longer be in the Hospice program unless she signs up again.
It is a different way to approach care and I want to write about it so family is clear about the preferences Lil is expressing.
Here's an example to illustrate the differences: In the case of Lil's heart incident two weeks ago, the first difference in a Hospice model is that, instead of us noticing that something was up and then starting the process of getting a doctor's appointment during the few times a week Lil's doctor is available (which is the point we were at when she had the heart incident--e.g. still trying to set up an appointment), we would have called the Hospice medical team on the first day of observed symptoms (mental fogginess, increased shortness of breath etc.). The Hospice nurse would have come out that day and begun adjusting meds and care to manage the symptoms working under the supervision of the Hospice doctors. The nurse then comes out every day (or as often as indicated), until symptoms are under control again. If symptoms require, they bring basic minimally invasive medical equipment--oxygen, blood pressure monitoring, kits for testing urine and blood--and do the care in Lil's familiar home environment.
If, even with that kind of preventative care, she had still gone into tachycardia as six that Thursday morning, we would have started by calling Hospice instead of the consulting nurse. What actually happened that day was that I reported Lil's symptoms to the consulting nurse, she, on the theory of better safe than sorry, had me call 911 and in three minutes there were six firemen in big boots in Lil's tiny bedroom and a giant ambulance stretcher crowded into the living room.
My observation of the medics was that they are very sincere and committed, and very well trained for dealing with many kinds of emergencies, but that they don't really know what to do with a 101 year old who doesn't quite fit the profile of a typical emergency. They have certain protocols and certain ways of doing things which are rather lockstep. None of the treatments they administered had really any effect. When grandma came out of the tachycardia and reset to a normal rhythm, she did it spontaneously. Her timing was very good actually--a few more minutes and they would have shocked her heart (there were calling in to get special permission at the time because it's outside their usual parameters of practice). We have no way of knowing if that would have been effective, and in retrospect, we know that heart shocking really isn't part of the advance directive Lil has signed.
At the time, however, I didn't have any way of knowing whether heart-shocking was something she wanted (and neither did she--when the medics are there, you just sort of do what they tell you and hope for the best. In their line of work and way of approaching things, there isn't really such a thing as informed consent--they do get consent if they can, but there's no time for real informing, even at the hospital).
It turns out that, after talking over the specifics with Lil's doctor this last week, heart-shocking is not part of Lil's advance care directive because she doesn't want extreme measures. When it comes to "Life Sustaining Treatment," the directive Lil has signed says she wants comfort measures only and prefers no transfer to the hospital unless determined to be indicated by "medical control" (this means Hospice as long as Lil is in the program)--not EMS. For things like DNR orders ("Do Not Resuscitate"), it's pretty much all or nothing--you can't start interventions to save someone and then stop halfway through after causing damage you can't address--once you start down the road of emergency interventions, EMS is basically ignoring the orders she has signed.
Shocking the heart of a younger person can be an important life saving step, but if you do it on a fragile centenarian and then follow up with CPR, you can break ribs, damage internal organs, cause internal bleeding, and even cause brain damage (from the electricity), all of which take invasive and heavy duty medical measures to address, and all of which Lil has asked to not have. We had a general idea of Lil's DNR wishes before, in theory and more or less (and she had a signed directive in her records), but now we know them in black in white--well actually in black and neon green, on a very clear sheet up on the fridge and soon to be up on the front door as well, so if medics are ever called again--especially if Marty or I is not here, it will be clear to all involved.
Once you call the medics of course (and you don't have a clear POLST--"Physician orders for life-sustaining treatment"--the neon green page), you are pretty much guaranteed a trip to the hospital. Not that this last one wasn't worth it--I think it really helped us to get all the ducks in a row and get serious about asking Lil specifically what she wants so we can set it up. Also, the information from the EKG about the state of grandma's heart was especially good to get. We know now that there is progressive damage from the congestive heart failure, and that it is not the kind of damage that will get better. The normal course of the illness is slow deterioration over many months. She is strong and healthy and doing well, but best medical guess (though the guesses vary somewhat) is that it's even odds this Christmas will be her last.
With good care and support she will likely continue to have the very good quality of life as she has been having up til now. Hospice care will help us anticipate and manage problems before they become distressing, but as long as Lil is in the Hospice program, it is unlikely we will be calling 911 for reasons related to her heart (if she breaks a bone or something like that, different story all together). If her symptoms are heart related (shortness of breath, low blood pressure, irregular rhythm) we will call the 24-hour Hospice number and work with them. They will provide the best care possible in the home unless Lil requests otherwise. They will even be giving us a home kit of the kind of medicines that need to be administered immediately so that Marty and I can do so (working with the Hospice doctor over the phone) rather than getting the EMS folks involved. Hospice will then send our Hospice nurse to the home to follow up and provide care aimed at quality of life and relieving pain and suffering.
Anyway, one of the reasons I started this blog is to help family understand the state of Lil's health, what kind of decisions she is making about her health care, and what our family is doing to support her. I think the more we all know, the better we can support her wishes, and the more prepared we will be as her health changes.
After that long interview, grandma has gone off to take a nap and I'm trying to buckle down and get some school work done as this is the last week of the quarter. Tomorrow is the last day of summer break for the boys and everyone is pretty excited about starting up school for the fall (me included--I'll have at least a little time to rub two thoughts together again...)
Please comment if you have questions or concerns or else contact me or mom and papa directly.
Buzzing about...
I managed to take Lil to see Ivar in the hospital two different days last week. It was good medicine for both of them, but especially for Ivar. How can you linger in the hospital when your 101 yo Aunt comes to visit you?! Talk about motivation to get better!!!
When they were both in the same hospital when I was up the last time, they both announced that they wanted to visit the other. That didn't work out. But it's been taken care of.
Lil insisted that we not stay long, though. "It's very nice to have company when you're sick," she informed me in an authoritative tone. "But it's also nice to see them go so you can rest." And so we hit the road each day. Literally, actually. On Thursday we took a drive out and around Alki afterwards and on Friday we tooled around Magnolia. Stopped every once in a while and took in the views. The week before Elaine took Lil for a two and a half hour drive all around Lake Washington! Lil does like those scenic drives. (Hint, hint, to anyone in Seattle...)
Oh, and when we returned to her house last evening to discover a big party going on WITHOUT her she observed. "Harrumph. When the cat's away the mice will play." So the mice made sure she got some of the great food immediately. I especially enjoyed the apple crisp!
Sunday, September 6, 2009
Grandma updates
Hey family and friends...
I don't know how well I'll be able to keep up with this, but since Lil's little sojourn in the hospital, I thought it might be a good thing to have a central place that people can come for news on her doings. I'll do my best to update this as often as I can, and I'll post at least a little if there is important news. While I'm at it, I'll probably mention what our family is up to as well, just to give a taste of what Lil's daily life is like.
Today really feels like fall is starting. Mom and papa Steve came over for dinner and to have a family get together with my mom's younger brother Eric and his daughters before his older daughter takes off for a year in Portugal. Lil has gone with cousin Nurmi to a Husa family gathering in Bainbridge at cousin Darwin's house.
While I have papa here and a rare free afternoon, I grabbed the opportunity to do some garden maintenance. We cut down a dead tree on the side patio, a volunteer alder that had pretty much taken over the sidewalk, a bunch of juniper on the front walk and many stalks of butterfly bush over the left path in the back garden.
Nurmi may go home today or may stay one more day. Mom and papa will go home to Vashon tonight. Marty's folks are also here for the week (staying in a B&B up the road) and are off tonight having a 44th anniversary dinner.
Grandma's meds seem to have been adjusted appropriately (no longer too much Furrosimide) and with the new heart med (Carvidilol) she is feeling more peppy and focused. We are still having Besa from Home Health Care services come in once a week to help Lil bathe and do some other personal care. We just got a call from the Group Health nurse to set up Hospice services, so that will help a lot.
I am writing this blog from the desk in the living room where grandma used to keep her electric typewriter. I just cleared it off this weekend so that I would have a place I can work in the living room so that Lil knows I am right here (instead of in the basement) when I am home.
Marty is done with classes for the quarter (he's got a two week break) and I have one week left (only three papers--shouldn't be too bad...). The boys start school this coming week--both at new schools--so exciting times around here. As always, Jacob is pretty quiet around the house and Avi is pretty loud (I used to worry that Lil would be disturbed by his volume, but really--quite the opposite. After he woke up Nurmi at 6:30 this morning by bouncing on his bed, he is newly dubbed "Tigger.")
Marty is just taking the apple crisp he made today out of the oven. Papa Steve brought over the apples and he and mom cut them up. I think there is hardly anything grandma likes better than apple crisp--she can practically eat a whole one by herself.
Well, it's time for me to go eat. I hope to be back soon.
I don't know how well I'll be able to keep up with this, but since Lil's little sojourn in the hospital, I thought it might be a good thing to have a central place that people can come for news on her doings. I'll do my best to update this as often as I can, and I'll post at least a little if there is important news. While I'm at it, I'll probably mention what our family is up to as well, just to give a taste of what Lil's daily life is like.
Today really feels like fall is starting. Mom and papa Steve came over for dinner and to have a family get together with my mom's younger brother Eric and his daughters before his older daughter takes off for a year in Portugal. Lil has gone with cousin Nurmi to a Husa family gathering in Bainbridge at cousin Darwin's house.
While I have papa here and a rare free afternoon, I grabbed the opportunity to do some garden maintenance. We cut down a dead tree on the side patio, a volunteer alder that had pretty much taken over the sidewalk, a bunch of juniper on the front walk and many stalks of butterfly bush over the left path in the back garden.
Nurmi may go home today or may stay one more day. Mom and papa will go home to Vashon tonight. Marty's folks are also here for the week (staying in a B&B up the road) and are off tonight having a 44th anniversary dinner.
Grandma's meds seem to have been adjusted appropriately (no longer too much Furrosimide) and with the new heart med (Carvidilol) she is feeling more peppy and focused. We are still having Besa from Home Health Care services come in once a week to help Lil bathe and do some other personal care. We just got a call from the Group Health nurse to set up Hospice services, so that will help a lot.
I am writing this blog from the desk in the living room where grandma used to keep her electric typewriter. I just cleared it off this weekend so that I would have a place I can work in the living room so that Lil knows I am right here (instead of in the basement) when I am home.
Marty is done with classes for the quarter (he's got a two week break) and I have one week left (only three papers--shouldn't be too bad...). The boys start school this coming week--both at new schools--so exciting times around here. As always, Jacob is pretty quiet around the house and Avi is pretty loud (I used to worry that Lil would be disturbed by his volume, but really--quite the opposite. After he woke up Nurmi at 6:30 this morning by bouncing on his bed, he is newly dubbed "Tigger.")
Marty is just taking the apple crisp he made today out of the oven. Papa Steve brought over the apples and he and mom cut them up. I think there is hardly anything grandma likes better than apple crisp--she can practically eat a whole one by herself.
Well, it's time for me to go eat. I hope to be back soon.
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