Medical Forum / Diseases and Disorders / Cancer / March 2006
Update: it's hospice now
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John Richards - 24 Feb 2006 06:39 GMT Recapping, my wife originally was diagnosed with BC three years ago. It was treated, and we were told there was an 80% chance of no recurrence within five years. Last December she began experiencing visceral pain. CT scans and bone scans confirmed there were massive metastases to the liver and bones.
She was scheduled for her third chemo session today, preceded by a consultation with her oncologist. The oncologist had the latest blood test results. Sad to say, the news was very disheartening. Her bile ducts have closed up, and the cancer was not responding to the chemotherapy (Taxol). The oncologist had no choice but to stop the chemo program. There is no other suitable treatment that has any promise of effectiveness for her advanced cancer condition.
I had begun to see several signs of her condition deteriorating over the past two weeks. Her fatigue had increased, and her ability to walk a few steps (even with assistance) became less and less.
We have been referred to a hospice program which will make her as comfortable as possible in her final days. The oncologist indicated that my wife has less than four months left, and (in my opinion) that was an optimistic estimate.
Sadly,
John Richards
Alayne - 24 Feb 2006 07:48 GMT > Recapping, my wife originally was diagnosed with BC > three years ago. It was treated, and we were told there [quoted text clipped - 26 lines] > > John Richards I am so sorry to learn this John and my heart goes out to you both. I lost my husband to a GBM two + years ago and know some of the journey you are travelling.
Hospice people are wonderful souls and I am sure that they will do all that is possible to make the time remaining as comfortable as possible.
Take care of yourself too now, you'll have an inner strength but also know that we are here for you.
Warm Hugs
Alayne
John Richards - 24 Feb 2006 16:49 GMT Thanks to all of you for the kind responses - too many to respond to individually. I will continue to lurk here, and chime in from time to time.
 Signature John Richards
Tim Jackson - 24 Feb 2006 09:25 GMT > Recapping, my wife originally was diagnosed with BC > three years ago. It was treated, and we were told there [quoted text clipped - 26 lines] > > John Richards Sorry to hear that your wife is reaching the end stages John.
I hope that the hospice can make her last days comfortable. They tend to be very good at this, they are the experts after all.
It does sound as if your oncologist is giving an upper limit rather than most probably life expectancy. When my wife reached this sort of condition she lived a matter of weeks rather than months.
Tim Jackson
lisa - 24 Feb 2006 12:29 GMT My thoughts are with you and your wife as she nears the end of this journey.
A couple of family members have passed their final days at hospices. They are wonderful at making people as comfortable as possible. It's beneficial not only for the patient but for the caregiver as well.
Take care. ...lisa
chris@mcgill.ca - 24 Feb 2006 12:30 GMT >Recapping, my wife originally was diagnosed with BC
>We have been referred to a hospice program which will >make her as comfortable as possible in her final days. [quoted text clipped - 5 lines] > >John Richards I'm so sorry, John.
Marilyn
Eva - 24 Feb 2006 13:03 GMT > ....Her bile ducts have > closed up, and the cancer was not responding to the [quoted text clipped - 4 lines] > ....We have been referred to a hospice program which will > make her as comfortable as possible in her final days. ------------------ I'm sorry you got such bad news, but as others have said, hospice programs specialize in alleviating pain and suffering. I've only heard good things from families of people who've died at a hospice. In fact, my neighbor died of lung cancer a few months ago and her family asked that all donations be sent to Calvary Hospice as they were so thankful for the care she received there. Best wishes, Eva
Lorelei - 25 Feb 2006 16:05 GMT >> ....Her bile ducts have >> closed up, and the cancer was not responding to the [quoted text clipped - 4 lines] >> ....We have been referred to a hospice program which will >> make her as comfortable as possible in her final days. I am so sorry to hear your news. Our brush with hospice was brief but it would never have worked with the Rn and the SW they sent here. I am sure they had other teams that we could have tried. I hope your experience is like I've heard others describe as being so comforting. Lori
J - 25 Feb 2006 17:39 GMT > Our brush with hospice was brief but it would never have worked with the Rn > and the SW they sent here. I am sure they had other teams that we could have > tried. Curt's still carpet laying, when he feels well enough. Martin, another prostate cancer patient, was still posting that he was walking and feeling well, ~one month before he died. His diary's gone now, but as I recall, he wanted no pain meds. If required, I'm sure you'll work it out, with hospice.
J
LT - 24 Feb 2006 13:19 GMT > Recapping, my wife originally was diagnosed with BC > three years ago. It was treated, and we were told there [quoted text clipped - 27 lines] > > John Richards I am so very sorry to hear this. But she was at least fortunate to have such a caring husband - I have been touched by the care and concern shown in your posts.
This recent article addresses the concern of doctors in trying to identify, very early on, breast cancers that have metastasized - in this case, in the brain. Here they suggest getting a brain scan as soon as one is diagnosed with cancer.
http://msnbc.msn.com/id/11474624/
Perhaps they will progress to the stage where routine checks are made of the areas where breast cancers are known to spread.
Lois
allan - 24 Feb 2006 14:25 GMT Hang in there, John - you and yours are in my thoughts today.
allan
Figgertoes - 24 Feb 2006 14:31 GMT "John Richards" <jr70@blackhole.invalid> wrote in news:%SxLf.16097 $NS6.10449@newssvr30.news.prodigy.com: We have been referred to a hospice program which will
> make her as comfortable as possible in her final days. > The oncologist indicated that my wife has less than [quoted text clipped - 4 lines] > > John Richards John,
I remember the day we received that news. We still had good days following that & I hope you & your wife do too. They nay use different pain meds than she used before. These & the rest of the care package may add quality to her days. I'm sure you will treasure te time you have left with her.
Be sure to take care of you, too. You may need a few of those breaks we talked about earlier. Hospice can often make that happen.
Hugs to both of you, Fig
Pat from Apple Valley, CA - 24 Feb 2006 19:42 GMT > Recapping, my wife originally was diagnosed with BC > three years ago. It was treated, and we were told there [quoted text clipped - 26 lines] > > John Richards John, I am so sorry to hear that your Wife is slipping away. Hope she can be comfortable in her last days. I, too am getting close to the last stages. MY chemo stopped working around May of last year. I have had 5 different types, (I am er-neg Pr-neg Hernu Slightly Pos.)but all have quit..and the numbers have been steadily rising to now in the 6000's. Last week was pretty good I felt like getting out. I always feel better out of the house, but this week all I want to do is lay around and watch TV, and what is there to watch Olympics?? and the USA sucks... I feel so sorry for my Husband, he is always asking if I want this to eat or that and I don't want to eat anything. I get cranky and feel sorry about it after. I want to talk about what to do at the end and he doesn't want to talk about it. I need to get my wishes down on paper, but can't bring myself to doing it. My kids think I'll live forever.. I need to start thinking about hospice, but I don't think I want to die here at home. My DH after all will have to continue to live here. I am not in a lot of pain, so maybe the end is not as close as I think, but I would just as soon die of a heart attach at least it would be quick..Can you have hospice care in a hospital????? or nursing home???? I really don't know what it is exactly. I'm sorry, I know this is about you and your wife, but this just brings me closer to where you are...and I feel your pain. I hope you have the best days you can have...Pat from Apple Valley, CA
A. P. Thorsen - 24 Feb 2006 20:27 GMT > I, too am getting close to the last stages. <deletions>
> I feel so sorry for my Husband, <deletions>
> I need to start thinking about hospice, but I don't think I want to > die here at home. My DH after all will have to continue to live here. You know your family best, but I can say that that is not necessarily a problem for everyone. A few years back, my husband died at home of esophageal cancer. I don't feel bad about the place because of that, and in fact am happy (relatively speaking, of course!) that he was at home rather than in a more impersonal setting. So, I feel at peace about the whole thing, on balance. I still live there.
> I am not in a lot of pain, so maybe the end is not as close as I think, > but I would just as soon die of a heart attach at least it would be > quick..Can you have hospice care in a hospital????? or nursing home???? > I really don't know what it is exactly. Many places have some kind of residential hospice (my mother died in this type of setting, where everyone was very kind to her). Or, you in many places you can go to a nursing home & have visiting hospice come to you (my mother-in-law had this kind of care, which worked well for her situation).
It sounds like you may not really feel ready to settle some of these kinds of issues, but when you do, the type of professional I've found most helpful is a medical social worker who knows about local resources. I've found these people as part of hospital staff, and/or accessible via insurance company case managers or the like.
Take care, Pat, and I hope you're able to find solutions that will help you deal with some of these complicated and difficult issues!
Ann T. Remove 'dontsendspam' from address to reply by email
figgertoes - 24 Feb 2006 20:28 GMT > I need to start thinking about hospice, but I don't think I want to die > here at home. My DH after all will have to continue to live here. I > am not in a lot of pain, so maybe the end is not as close as I think, > but I would just as soon die of a heart attach at least it would be > quick..Can you have hospice care in a hospital????? or nursing home???? > I really don't know what it is exactly. Pat,
It is very thoughtful of you to think things through so your DH won't ever need to guess your wishes.
Some hospices have in-patient care, but this is not so common anymore in Denver area, where I live. It depends on your insurance coverage. Here, hospice care can be delivered in nursing homes, but then you've got 2 different coverages involved. Many plans limit nursing home days to 100 or so & don't cover the room/board portion.
I would check with my insurance company first to see what is covered under hospice & what your coverage is for nursing home care. You may carry a separate policy for nursing home, or similar, care.
Then call the hospices in your area covered by your insurance. If the nursing home option appears too expensive, ask what they might suggest instead. Many people feel as you do, so they've probably got some options. In-patient hospice care would be my first choice in this situation.
You can always come back here. Others may have some ideas.
You may feel more at peace once you've explored your options & gotten your ?s answered.
Meanwhile, maybe friends/family could take you out on short excursions - to lunch, to a movie, anything to escape the 4 walls & give you a change of scenery without tireing you too much. Keep it easy; keep it casual. Enjoy your time.
If housekeeping is an issue, maybe you could get a cleaning service in occasionally.
Best, Fig
John Richards - 25 Feb 2006 00:01 GMT > I, too am getting close to the last stages. MY chemo stopped working > around May of last year. I have had 5 different types, (I am er-neg [quoted text clipped - 3 lines] > all I want to do is lay around and watch TV, and what is there to watch > Olympics?? and the USA sucks... I'm surprised that after stopping chemo nine months ago you still feel well enough to participate in this newsgroup. My wife pretty much lost those abilities and interests after only two months past diagnosis, apparently because her cancer is growing much faster than yours.
> I feel so sorry for my Husband, he is always asking if I want this to > eat or that and I don't want to eat anything. I get cranky and feel [quoted text clipped - 3 lines] > I need to start thinking about hospice, but I don't think I want to die > here at home. My DH after all will have to continue to live here. I can think of nothing more loving than to have my wife die comfortably in our home, surrounded by me and the kids.
> am not in a lot of pain, so maybe the end is not as close as I think, > but I would just as soon die of a heart attach at least it would be > quick..Can you have hospice care in a hospital????? or nursing home???? > I really don't know what it is exactly. Your insurance determines the type of hospice. We have Kaiser, which has home hospice.
 Signature John Richards
Pat from Apple Valley, CA - 25 Feb 2006 19:09 GMT >> I, too am getting close to the last stages. MY chemo stopped working >> around May of last year. I have had 5 different types, (I am er-neg [quoted text clipped - 29 lines] > Your insurance determines the type of hospice. We have Kaiser, > which has home hospice. I didn't quit chemo 9 months ago, it Pretty much quit working that long ago. I guess it might have kept it at bay but the numbers still just went up. I had 4 types of chemo in the last 9 months..Taxotere worked the longest got the numbers from 1800 to 700 then the 4 types I've had since then would work maybe once then start up again. the last 2 didn't slow the numbers at all... I also have Kaiser ins. And My Dh has looked up the book on what my policy covers..So we will read it to see what is available.. I have been working on getting my wishes down on paper. I find I really don't care what is done with my things, or who gets what, tho I don't want fights among the kids either. I really don't have alot to divy up.. MY DH and Kids do know I don't want a funeral or memorial, except for just what the family wants to do.. Pat
John Richards - 28 Feb 2006 08:12 GMT > MY DH and Kids do know I don't want a funeral or memorial, except for > just what the family wants to do.. > Pat My wife has similar wishes since she wants to be cremated. As a minimum, is some sort of memorial service expected, and if so, who arranges it? I don't know diddly about these things.
 Signature John Richards
alex - 28 Feb 2006 09:26 GMT Any funeral director, the hospice can recommendable a place. Shop around.
>> MY DH and Kids do know I don't want a funeral or memorial, except for >> just what the family wants to do.. [quoted text clipped - 4 lines] > and if so, who arranges it? > I don't know diddly about these things. Figgertoes - 28 Feb 2006 14:20 GMT >> MY DH and Kids do know I don't want a funeral or memorial, except for >> just what the family wants to do.. [quoted text clipped - 4 lines] > and if so, who arranges it? > I don't know diddly about these things. Our hospice provided 2 lists. Each had prices, contacts & some were checked as having good feedback from former hospice families. One was full-service funeral homes, the other cremation only. If simple cremation is all that's desired, I'd recommend the cremation only places as they are much less expensive. I used one of these. They do not embalm, at least not here. 'Casket' can be papeboard while funeral homes required something more elaborate (???). No black limo, but they picked up my husband's body at hospice (wherever, would do home too) & were great people. I stayed with him the whole time, but apparently many opt to say their goodbyes & leave before the body is removed.
They suggested that any who wanted to could write letters, notes, anything paper, which they would cremate with the body. We did & it was very comforting.
hth, Fig
A. P. Thorsen - 28 Feb 2006 15:25 GMT >> MY DH and Kids do know I don't want a funeral or memorial, except for >> just what the family wants to do.. [quoted text clipped - 4 lines] > and if so, who arranges it? > I don't know diddly about these things. Whether there's a service, and what kind, is totally up to the family (which can, of course, be based on the deceased's wishes).
If you use a funeral home, they'll do a lot for you (but charge you for doing it). For a simple memorial service, you can make your own arrangements (reserve a suitable location, depending on your wishes, etc.). Or, you could have some kind of celebration of the person's life in your own home (space permitting) or a park/beach/etc. Or you could do no formal recognition.
In my opinion, the question of services is more about what the survivors need in order to feel closure, than anything else.
My husband was an atheist, so wanted a secular memorial . . . but wanted me to check with his mother to ensure that it would be OK for her not to have a minister as part of it. He (husband) wanted various friends to speak at the memorial, but didn't specify who -- except that he said I should speak. So, we did this at a funeral home (thought his mother would need some of the formal trappings), had half a dozen friends from different areas of his life speak (including me). After the service, he was cremated.
The memorial service ended up being a good & positive experience. Holding it helped me to close that chapter and go on.
Ann T. Remove 'dontsendspam' from address to reply by email
Alayne - 28 Feb 2006 15:58 GMT >> MY DH and Kids do know I don't want a funeral or memorial, except for >> just what the family wants to do.. [quoted text clipped - 4 lines] > and if so, who arranges it? > I don't know diddly about these things. I picked up a little leaflet at the hospice explaining what legalities were required after losing someone; death certificate/registering etc. which I found very useful. As far as the crematorium went, it was basically as I (or rather my late husband) instructed. He was an aethist so the funeral directors put me in touch with a Humanist Minster. I based the service entirely on what I am sure Tony would have wanted rather than family and tried to keep everything in the vein of life to which he led.
It's tough John but think of it as part of a process, a celebration of the life rather than the passing.
Warm Hugs
Alayne
Pat from Apple Valley, CA - 28 Feb 2006 20:24 GMT >> MY DH and Kids do know I don't want a funeral or memorial, except for >> just what the family wants to do.. [quoted text clipped - 4 lines] > and if so, who arranges it? > I don't know diddly about these things. We have not lived in this location very long so I don't feel the need for a funeral or memorial as no one would travel to come. I would like my kids and Husband to say something over my scattering, if they wish and make it a very personal closing..I know you need lots of Death certificates for different functions. I believe the survivor arranges as much as he can.
>They suggested that any who wanted to could write letters, notes, >anything >paper, which they would cremate with the body. We did & it was very >comforting. This seems nice....I like this suggestion. Would end things nicely... Pat From Apple Valley, CA
bj - 28 Feb 2006 21:39 GMT > I know you need lots of Death certificates for different functions. I know when my father died (not from cancer) we got, I think, 15 certificates -- and I think Mom had to ask for more later. *everybody* seems to want one (various gov't entities; insurance companies; financial institutions; etc. & I didn't handle it so I don't know what all). It may be cheaper (you could ask) to get "more than you think you could possibly need" right off; it's certainly easier than going back later -- the funeral home got the initial batch for her. bj
matt weber - 28 Feb 2006 23:54 GMT >> I know you need lots of Death certificates for different functions. > [quoted text clipped - 6 lines] >got the initial batch for her. >bj Actually I found testimentary letters to be in high demand (thats a document issued by the probate identifying you as the estate's personal representative) document. Generally if you have one of those, they are included to believe somebody is really dead.
Figgertoes - 01 Mar 2006 05:45 GMT >>> I know you need lots of Death certificates for different functions. >> [quoted text clipped - 11 lines] > personal representative) document. Generally if you have one of those, > they are included to believe somebody is really dead. It depends on many factors, but not all estates need to be probated. Assets, even large ones, can pass to heirs outside of the will. Socks simply made me beneficiary on his brokerage accounts, insurance policies & the like. Most 401Ks have that option. Some accounts even allow % distribution to multiple beneficiaries. Socks (finally) put me on his bank acount, a huge help, Before he did, the bank wouldn't give me any info about balances & he had some complex activities - money coming in/going out automatically. I needed to know so I could make sure balances stayed positive. A monthly statement wasn't enough. He wasn't able to handle toward the end.
When ordering those death certificates, remember you might need one for any contract you are breaking due to death - such as cell phone. Some took copies. Even one relatively small insurance policy paid with only a copy. Ditto car title transfer. I have most left over but will keep some at home & some in safe deposit box. You just never know who might require one. Safe deposit box: make sure surviving spouse is on the record.
You might want to check your credit card accounts to see that both spouses are owners, not just authorized users, for the ones you want to keep. Death notification goes to credit bureaus which are monitored by credit card issuers. Socks had a Discover card that was shut down with no notification to me. I was authorized user, but it was not a joint account. Thought about telling them to go get the money from him - then thought again & paid it off :-)
I went through all the mail for a couple of months after diagnosis, just to see if something needed to be changed so I would have access to it without a lot of hassle.
Passwords - be sure you know them for ATM access, computers (many have multiple). If you have DSL & have a power outage, you may need to enter a code to get reconnected. Do you know how to find it? Do you know who provides household services - plumber, lawn mowing company, painters, roofers, carpet cleaners, pet sitters? Do you have maintenance contracts for anything - HVAC? Anything under warranty?
Pay bills online? You'll need login/passwords to access accounts. Receive paperless bills? You need to know the drill. How about ISP providers, domain name registrations? Web pages? Someone needs to know how all of this works.
Things to cancel (no need to continue paying for): car insurance for deceased, coverage such as AAA, health club membership, dues, maybe tithing, cell phone service, subscriptions to unwanted publications, book/music clubs, professional organization membership & other memberships (golf club, country club, travel club).
I hope this doesn't overwhelm. I went through all of this with minimal problems except for computer passwords. There was plenty I didn't know about his computers - one dual boot with Linux. It's so much easier to maintain the status quo than to have to call everyone at once to get changes made.
Fig
bj - 01 Mar 2006 23:40 GMT > When ordering those death certificates, remember you might need one for > any contract you are breaking due to death - such as cell phone. Some [quoted text clipped - 3 lines] > require one. Safe deposit box: make sure surviving spouse is on the > record. It doesn't have to be a spouse, either. I'm listed on a couple of things with my mother, & she has access to my box too.
And you can check local laws on access -- in some places (as long as you have the box key!) a survivor relative can access a box *just* for the purpose of finding/retrieving a will. (I'm a little hazy on the details)
Some places only need to see an original death certificate -- they'll send it back; a copy won't do, but they don't feel the need to keep it -- worth asking them, anyway, if you think you're going to run short. bj
alex - 25 Feb 2006 00:41 GMT > I feel so sorry for my Husband, he is always asking if I want this to eat > or that and I don't want to eat anything. I get cranky and feel sorry [quoted text clipped - 10 lines] > closer to where you are...and I feel your pain. I hope you have the best > days you can have...Pat from Apple Valley, CA John sorry to hear about your wife. Pat have you spoken to your oncologist or staff, they will know what is available. You could still have home hospice with the plan when your time is coming up they move you to another place. Here in my home state residential hospice is in short supply. Alex
Alayne - 25 Feb 2006 10:03 GMT >> Recapping, my wife originally was diagnosed with BC >> three years ago. It was treated, and we were told there [quoted text clipped - 51 lines] > closer to where you are...and I feel your pain. I hope you have the best > days you can have...Pat from Apple Valley, CA Hello Pat,
I'm truly sorry to learn of your situation and send you a Warm Hug. I lost my hubby to a GBM a couple of years ago and found Hospice a wonderful place. They took the extra care of Tony and also encompassed myself and my two daughters.
It's worth finding out about. I know it's tough and not everyone can do it, but it can be very helpful to talk through or at least write down your wishes and tell your family where to find them.
Warm Hugs to you and your family
Alayne
J - 27 Feb 2006 09:39 GMT > I, too am getting close to the last stages. MY chemo stopped working > around May of last year. I have had 5 different types, (I am er-neg [quoted text clipped - 14 lines] > quick..Can you have hospice care in a hospital????? or nursing home???? > I really don't know what it is exactly. Hello Pat, re: wishes/advanced care directives, Fig or I have a source for forms that might be helpful in many ways. It's only $5 (there's also a video), but my thinking was that receiving the form (by mail) might incline your husband to want to enter into discussions, although having read your posts for 4 years, and feeling denial, grief, helplessness myself, I can't imagine what your DH must be feeling at this time. Perhaps he needs easing into it or if he can't cope with it, if you have adult children, one or the other might help with that.
There's a website here http://www.brainhospice.com/HospiceQuestions.html that has lists of pros and cons about hospice or at home. Might assist you and/or DH, while considering the choices.
Futher down, you said you really don't have a lot to divy up. I was disappointed that someone had cleared out everything of my mother's, leaving only clothing. I saved one of her favourite sweaters (when she was cold). It was pink and ulgy (grin), but it had her scent and was a source of comfort, from time to time, over the next few years. Just knowing it was in the closet was a comfort and memory of Mom.
Dad had designated some items for each of us, ahead of time, and sent them to us a year or so before. And when Dad passed away, I kept a war book which contained his pencilled in comments about where he (or other family) participated. Other similar books had disappeared - they were memories of my childhood, that I would liked to keep. My point being that while you may not feel there's much, your kids might value things that you see as everyday things and not of much value, but please do not discount the sentimental value of your possessions. Some clear everything out without thought to that. It's my opinion, that items should be kept, at least for a few weeks. It's hard to make decisions while grieving, but I hope you'll give them a chance to save what's dear to each of them.
J - hoping your time is still a long time away yet.
Pat from Apple Valley, CA - 27 Feb 2006 19:05 GMT >> I, too am getting close to the last stages. MY chemo stopped working >>around May of last year. I have had 5 different types, (I am er-neg [quoted text clipped - 48 lines] > > J - hoping your time is still a long time away yet. Thanks, I will look at the hospice info. I do have a will of sorts written out, about who should get what, however my DH said he was to be the only one to get a copy. He doesn't want the kids coming in and cleaning out my stuff without regard to his wishes. Not that they would do that, in my opinion. I also have a DNR written out, tho not witnessed. I believe he will follow my wishes in that regard. I have been here since 2000, I believe, so have grown to know many of you and appreciate the support offered by each .. Thanks for the info... and hope so, too...Pat from Apple Valley
John Richards - 28 Feb 2006 08:25 GMT > There's a website here http://www.brainhospice.com/HospiceQuestions.html that has > lists of pros and cons about hospice or at home. Might assist you and/or DH, while > considering the choices. I'm hearing that Kaiser's hospice program will not start IVs for basic necessities such as saline solution or sucrose solution. Anyone else heard this? Seems cruel to let a patient who can't swallow die of hydration.
 Signature John Richards
alex - 28 Feb 2006 09:30 GMT This link is geared towards Brain tumor patients, and not all of the material is correct for general hospice patients. Hospices feel it is cruel to start fluids since the body can't handle them and often the patients of a drowning sensation. I don't have time to complete the whole answer. Ask for a hospice consult, they will explain the process to you and what their policies are. The often do IVs but only not to distress the family. IV fluid is not enough to sustain life.
 Signature
>> There's a website here http://www.brainhospice.com/HospiceQuestions.html >> that has [quoted text clipped - 6 lines] > such as saline solution or sucrose solution. Anyone else heard this? > Seems cruel to let a patient who can't swallow die of hydration. J - 02 Mar 2006 10:52 GMT > I'm hearing that Kaiser's hospice program will not start IVs for basic necessities > such as saline solution or sucrose solution. Anyone else heard this? > Seems cruel to let a patient who can't swallow die of hydration. Hello John, To reassure you (an anyone else reading), that comfort can be provided. They did stop my Dad's IV. A doctor explained to us why. A nurse showed us how to hydrate Dad's eyes and mouth.
A list somewhere mentions: spoon a few tiny ice chips into the patients mouth Semifrozen fruit juice - (We've also talked, on newsgroup, about popsicles - and Socks liked his ice cream) Frequent sips of cold water or water sprays Brush the persons teeth, for a fresh mouth feeling The above would be if the patient is semi-alert and able to hold the head up. (and i suppose spit out from brushing, unless just using water). We did not do that for Dad.
Dad wasn't alert, at that time ( the last 5 days or so of his life), so I was using a wet cloth to drip water in his mouth and/or on his tongue. The nurse supplied a dropper for that and explained not to give too much to choke him. I could tell he was thirsty because he literally lapped his tongue for more, but we had to be careful. We swabbed the inside of his mouth with water-soaked cotton swabs We applied lip salve We dabbed the mouth with glycerin swabs to keep it moist And as I mentioned earlier, we were supplied drops for his eyes. A patient can be kept comfortable. I'm sure that hospice will help you along with that because situations vary. Dad did not suffer, he passed peacefully and he wasn't on pain medications - his situation did not call for them.
Let us know how you're doing, or other questions, I'll see you on alt.support.cancer. J
John Richards - 04 Mar 2006 02:13 GMT >> I'm hearing that Kaiser's hospice program will not start IVs for basic necessities >> such as saline solution or sucrose solution. Anyone else heard this? [quoted text clipped - 29 lines] > > Let us know how you're doing, or other questions, I'll see you on alt.support.cancer. The start of my wife's home hospice was delayed, but finally began yesterday morning, after another five-day hospital stay for acute hepatic encephalophy. The latter crisis was brought on by her suddenly being unable to swallow anything, including her Lactulose medicine.
We are doing most of what you mentioned above, except for eye drops. Wasn't told about them, so I'll ask the hospice nurse. My wife does not seem thirsty or hungry although she'll take an occasional chip of ice. In any case, she can't swallow, so even a few drops of water can elicit a coughing/choking reaction. Did you have any problem with a whitish overgrowth on the upper surface of the tongue? Incidentally, we are now administering the Lactulose via rectal enema, every 6 hours. Messy but effective. Hospice approved it as a palliative measure.
 Signature John Richards
Tim Jackson - 04 Mar 2006 08:31 GMT > Did you have any problem with a whitish > overgrowth on the upper surface of the tongue? Sounds like oral thrush. Happens with chemo sometimes, and anywhere where the immune system is compromised.
Tim
Emily - 04 Mar 2006 21:15 GMT jr70@blackhole.invalid said...
> Did you have any problem with a whitish overgrowth on the upper surface of the > tongue? Oral thrush?
J - 05 Mar 2006 10:11 GMT > jr70@blackhole.invalid said... > > Did you have any problem with a whitish overgrowth on the upper surface of the > > tongue? > > > Oral thrush? Just so you know, Em, one person stopped the crossposting replies, on this thread. Alan has since posted a new thread and is no longer cross-posting. I've no idea why. Just letting you (and this newsgroup) know. J
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