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Posted: 3/14/2011 4:44:50 AM EST
[Last Edit: 3/14/2011 4:49:32 AM EST by TomJefferson]
Link Posted: 3/14/2011 4:51:53 AM EST
My prayers are with you and your family.
Link Posted: 3/14/2011 4:54:40 AM EST
VERY tough lessons
Prayers for her strength and yours

Thanks for the painful lessons.

Sad but true
Link Posted: 3/14/2011 5:02:52 AM EST
My ex grandfather went in to hospice and GOT BETTER heaven didnt want the drunk abusive bastard and hell was afraid of him. We had all kinds of issues after he got better cause he was written off in "the system" and they no longer wanted to pay for anything. We were told that " that files been closed" Good luck and god bless
Link Posted: 3/14/2011 5:17:10 AM EST
[Last Edit: 3/15/2011 4:21:21 AM EST by PA22-400]
Thanks TJ

I'll have to read later

ETA
Bummer.....

Thanks again TJ for telling it like it is.


Bless you, your family, and MIL.
Link Posted: 3/14/2011 5:17:22 AM EST
Sorry to hear that.

You are correct in as much as their only goal is to make a person as comfortable as possible in their last days.

The ladies who took care of my mom a few years ago did exactly that.

They never engaged any of us in conversation about whether she would get better or not.

We had nothing but a good experience with them. They were very kind and helpful.

Remember, they're all people. Some are better than others and some just suck.

Good luck. Be strong for your wife.



Link Posted: 3/14/2011 5:18:39 AM EST
Thank you for sharing your experience, I fear I may be visiting the hospice issue soon enough and I value your insight. I will keep your family in my prayers.

-WhyTanFox
Link Posted: 3/14/2011 5:47:40 AM EST
Prayers for your MIL, your wife, and family.
Link Posted: 3/14/2011 5:59:39 AM EST
I had a very positive interaction with the hospice folks in the early '90s.
For the most part, they were a VERY caring bunch: a few cried with us at the end.
And there was no getting better in this situation.

Now some of the in home care crew were a different story, well, at least one of them.
Or maybe her ride. I had 2 chainsaws walk, and there was only the slightest window of opportunity.
And they were there.....


Anyway, TJ I wish the very best for you and yours!
Link Posted: 3/14/2011 6:19:58 AM EST
[Last Edit: 3/14/2011 6:22:22 AM EST by -Apocalypto-]
My father passed a little over 2 years ago of lung cancer. Our experience with Hospice was good. But make no mistake, they made it clear to us. They are not going to heal your loved one in any way. They are just there to make their passing comfortable and hopefully painless.

Link Posted: 3/14/2011 6:24:30 AM EST
TJ I'm sorry to hear that this process has been difficult for you, but from my experience it is not the norm in these sort of cases It would seem from your description that your MIL wasn't a good candidate for hospice as commonly used. I suspect that traditional in home care or even temporary skilled long term care would have been a better choice.

.I've worked in end of life care and have good friends who still do. Each hospice has it's own policies and procedures, the experience can be significantly different in in patient care and varies from location to location. Your statements about pain management and hospice VS non hospice settings don't match my experience in these situation.

And for anyone who feels like their pain management isn't being taken seriously in any situation you should know that effective pain management is considered as important as any other form of medical treatment and you should demand it or fire your Dr.


I hope it all works for the best whatever that turns out to be.
Link Posted: 3/14/2011 6:27:07 AM EST
[Last Edit: 3/14/2011 6:27:52 AM EST by AGW]
Link Posted: 3/14/2011 6:48:29 AM EST
Originally Posted By -Apocalypto-:
My father passed a little over 2 years ago of lung cancer. Our experience with Hospice was good. But make no mistake, they made it clear to us. They are not going to heal your loved one in any way. They are just there to make their passing comfortable and hopefully painless.



My dad passed away last year from leukemia. We engaged a hospice service and they were a god send. He was NOT going to get better. The choice was him lying in a sterile hospital room stuck full of needles, surrounded by strangers and beeping, thumping machinery or being at home, pruning his grape vines one last time, messing around in his garden and sitting in his favorite easy chair surrounded by family.

The choice was a no brainer for us. But as TJ said, it's not always that clear cut.

TJ, sorry for your troubles.
Link Posted: 3/14/2011 7:14:03 AM EST
WOW, what an eye opener. Thanks for posting this TJ and prayers for you and family.
Link Posted: 3/14/2011 7:26:26 AM EST
Originally Posted By TomJefferson:
Their goal is make her comfortable and help her die.


This is what Hospice is for...people who are terminal and want to die in comfort. If a person is trying to get better, they don't meet Hospice criteria and should be somewhere else.

I wish you and your family the best, but I wonder whether you understood what hospice does. If you're trying to get better, you should get out of hospice––for their benefit, and for yours.

Link Posted: 3/14/2011 7:31:28 AM EST
TJ
My best to you and your family. I have had first hand experience with Hospice Care through a couple of family members.
My Mother has been a volunteer for the local Hospice thrift store for over 20 years, and started volunteering because of those family members.
Your advice is well taken, we spend so much time here preparing for tough times, we should give some consideration to end of life issues,as we will all face them.
Based on what you have told us it is clear to me that Hospice rules and policies differ vastly throughout the land.
Hang in there.
Link Posted: 3/14/2011 8:28:54 AM EST
TJ
My good friend (50 yo) is dying of colon cancer. He was sent home and Hospice was called in. I had no idea how it works.
Prayers are with you
Thanks for posting.
Link Posted: 3/14/2011 9:40:10 AM EST
[Last Edit: 3/14/2011 9:42:39 AM EST by TomJefferson]
Link Posted: 3/14/2011 9:41:08 AM EST
Bit near and dear ... My mother is a hospice nurse and has been for ten years.

I think she'd take issue with someone telling her she was "helping people die".

It's about *living*, not dying.

Living your last time with dignity, and comfort. As someone else said - home, with family, and comfortable, not in a hospital room. It's also about making the family a bit more comfortable with things.

My grandmother died in the hospital a bit ago; I visited her once before she died and couldn't do it again. I told my father - well before she passed - that I *couldn't* do it again. We all knew she was in her last days, and medicated into near-coma and full of tubes is not how I chose to remember my grandmother. At home with family around her would have been MUCH easier.

I'm sorry to hear your experience is going so poorly. I'll send good thoughts.
Link Posted: 3/14/2011 9:43:18 AM EST
.

Sorry about your experiences, TJ.

Mine were different and I've gone through it several times. The second time we didn't even call a hospice until about 5 days before death, and we'd known for several months in advance how it was going to end. We just didn't feel we needed them until then. In all cases wad zero problems getting the pain med prescriptions we needed without a DNR, hospice, etc.. from the regular case doctor. Admittedly, the hospice people had their own doctor who wanted to raise dosages - but that wasn't necessary and we didn't allow them to just med to the point of oblivion and then death.

I guess it all comes down to circumstances and what hospice you used.

Link Posted: 3/14/2011 9:53:32 AM EST
[Last Edit: 3/14/2011 9:58:45 AM EST by TomJefferson]
Link Posted: 3/14/2011 10:09:42 AM EST
I appreciate the treatment given this subject by TJ. My mom died from COPD and was cared for by hospice. I truly believe that they saved my Dad's life by helping him through this time. Under the circumstances, I think that was the best possible outcome we could hope for.

At the time I was a little troubled by the use of pain medication that might have ended things an hour or a day earlier than would have happened otherwise, but at the end of the road, there was no possible difference in the outcome. I believe that pain control and the elimination of suffering was the goal, and not some kind of euthanasia, which I am opposed to.

It seems like TJ's MIL got sidetracked into a situation that wasn't right for her, and will hopefully come back from the brink, as so many do.
Link Posted: 3/14/2011 10:22:02 AM EST
been thru the same challenge with my MIL about 5 years ago now. It was a hard decission to go from hospital to hospice but looking back on it, it was the right decission and the nurse that came out was very good in our case. Made those last days much more comfortable at home instead of in a hospital room. Got to spend some quality time with family and get affairs in order. The truth of the matter is, I think hospice is going to grow dramatically as all the baby boomers get to the latter years. When done right with caring nurses, it is a very good option for alot of scenarios.
Link Posted: 3/14/2011 10:22:30 AM EST
[Last Edit: 3/14/2011 10:29:34 AM EST by TomJefferson]
Link Posted: 3/14/2011 10:39:04 AM EST

I just lost my father to kidney cancer four months ago. He was only 63.

He went through months of surgery and "recovery", only to find his cancer had had come back and more aggressive than ever.

For us hospice was wonderful. My dad wanted to die at home and be surrounded by his family. He lasted six weeks after the fatal diagnosis, but his last six weeks were the best they could be under the circumstances. Hospice helped keep him clean, provided a reclining bed and even helped with the final call to the mortuary to arrange for their services.

I suppose a lot has to depend on the people, but we were lucky to get caring folks.

Best wishes TJ to your family.

Link Posted: 3/14/2011 10:39:48 AM EST
[Last Edit: 3/14/2011 10:49:23 AM EST by amos1909]
TJ,

First, I am sorry that you are having a rough time in all of this. I'll keep you and your family in my prayers.

I have a few friends that work with Hospice, They are some of the most empathetic people I know. I mean, really good people, BUT I do not care for what they do!!!!

Back in 1994 at the age of 24, I was diagnosed with terminal leukemia and given 2-3 months to live. The prescription was written for Hospice and they came by to start the process.

I was shocked at how all they wanted to do was to help me die. They told me they were preparing me to die. In my heart I wanted to live and was not willing to accepted that I was dying. I kicked them out of my home and never looked back.

I have heard a lot of good things about Hospice and their people, but I know if I had not kicked them out of my life 17 years ago, I would not be here!!!

I have learned you can do a lot for yourself by going AMA (against Medical Advice)!!!! I have done it more times than I can remember

Keep in there and keep up the fight. Your MIL will look to those around here for support, strength and wisdom. If I were in your shoes I would fight for her even when she is tired of fighting!!!

Death will get me one of these days, BUT I am going to fight for every breath I CAN GET!!!!

You are in my prayers,

Matthew
Link Posted: 3/14/2011 10:58:48 AM EST
Originally Posted By TomJefferson:
Originally Posted By palmetto:
I appreciate the treatment given this subject by TJ. My mom died from COPD and was cared for by hospice. I truly believe that they saved my Dad's life by helping him through this time. Under the circumstances, I think that was the best possible outcome we could hope for.

At the time I was a little troubled by the use of pain medication that might have ended things an hour or a day earlier than would have happened otherwise, but at the end of the road, there was no possible difference in the outcome. I believe that pain control and the elimination of suffering was the goal, and not some kind of euthanasia, which I am opposed to.

It seems like TJ's MIL got sidetracked into a situation that wasn't right for her, and will hopefully come back from the brink, as so many do.


Yes, you have a good understanding.

What sets what is needed for treatment is the condition of the patient but what sets what Medicare will provide is Medicare. They are not the same and Medicare will take care of me is a big mistake these days.

In many cases, you are better off on Hospice even if you want to live, otherwise not being on it can be a faster death sentence.

This is where family involvement becomes so critical. A delicate heart condition is just like COPD as far as needed treatment except throw in the extreme pain plus needing meds to treat the condition. The 02 devices, pain meds, and actually even nitro-glycerin (immediate treatment with no benefit to long term prognosis, Hospice is providing. The long term meds teating the condition, they don't. In all though, this still saving a tremendous amount of money to the system as we're not rushing her to the hospital every time her heart goes or keeping her in assisted living, which would be way more costly.

My father, his was cancer and purely pain management and comfort till the end. This one, its could die tomorrow but a light at the end of the tunnel may not if we can get her strength up enough to risk the surgery. Being 82 though, its not three days on a feeding tube, some PT, and lets rock and roll. Its more complicated.

Tj


BTW, Yes, a couple weeks ago this would have been hard if not impossible for me to discuss. Dealing with 3 to 4 heart attacks a day and the prognosis not a light at the end of the tunnel but merely a sliver of hope, it would have been impossible.



TJ-Sorry to hear of this.

As an aside and for others (on behalf of themselves looking toward the future) there are some good insurance policies that can help with capital preservation as well as expenses associated with end-of-life scenario's. My wife and I have a policy with Genworth that provides for ~600 days of premium medical care at a rate of ~ $4-k/yr which covers hospice or in-home care. That may seem pricey, but not quite so when end-of-life decisions and costs are factored in. This insurance has an other option is that it reduces the risk to family wealth that Medicare may not pay for, so reducing out-of-pocket expenses.



Link Posted: 3/14/2011 11:24:23 AM EST
I can relate for sure. My Dad passed a couple years ago. Lung cancer. Weighed 72 lbs when he went. Home hospice for a month or so, and the last 24hrs was in the hospital. God be with you, and your family, TJ.
Link Posted: 3/14/2011 11:40:00 AM EST
TJ - You and your family are in my prayers.

I've buried my father-in-law, my great aunt, my Mom, and my Dad, during an 18 month stretch from June of 2008 to January 1, 2010. We were able to use hospice for my F.I.L. and my Dad. Without hospice I probably wouldn't be married or sane. Like anything conceived by humanity it has it's flaws though. It's up to the patient and their family to decide how they want to live and die and no one else. Just make damn sure that the final decision is what the patient would want. My cousin could not let go of her Mom or make any substantive decisions on her care other than "I don't want her to die!" when it was quite obvious that my aunt was terminal and suffering immensely just to breathe. It's an awkward subject that people will literally run from but EVERYONE needs to sit down with their relatives and then their estate lawyer and spell out exactly what and how they want to be treated in a the event of a terminal diagnosis or a permanent extremely impaired state. That way there is no wondering and much less fighting within the family about what Mom would have wanted when she's in a coma and the doctors are telling you that there's a 99.9% chance she's never going to wake up. I knew what my Mom's wishes were and it gave me a certain measure of peace with my decision to take her off life support after it was clear that she was brain dead as a result of sudden cardiac arrest.
Link Posted: 3/14/2011 12:01:24 PM EST
[Last Edit: 3/14/2011 12:07:02 PM EST by TomJefferson]
Link Posted: 3/14/2011 12:07:52 PM EST
TJ best wishes and peace to you and your family through what must be a very difficult time.
Link Posted: 3/14/2011 12:53:16 PM EST
[Last Edit: 3/14/2011 1:02:01 PM EST by lumper]
Best wishes for those of you and your loved ones who are dealing with these problems. Hospice's job is to help people die comfortably, at a location of their choosing. If some one is not planning on dying, they should not be on hospice. In my previous occupation, I worked with about 80 to 100 hospice cases a year. It was rare that a family complained about their hospice personal. One way to judge the families results with hospice are to read the obituaries. See how many families ask for donations to charities instead of flowers. In our area this is very common, and various hospice groups are the highest percentage of charities named in obituaries.

As a note: I have never worked for or been paid by a hospice, although I have given advice, training and information to them. If I reach the point where I am terminally ill, I will use their services and die at home.

As another note: This may vary by state, but in PA, hospice is paid a flat fee for three months of service. If a death occurs sooner, they keep the rest, if the death takes longer, they take the loss. In saying this, I would like point out that I do not believe that it is the policy of hospice on an institutional level to "hurry" the death to keep more money, although use of pain medication may cause that to occur as a side result of keeping the patent comfortable.

TJ, I am sorry for your trouble, but it does not sound like your family member should be on hospice at all. Send them packing, and get a home care person instead (background check advised, and valuables locked away anyways).

Edited to add, In my years of working with famlies, I have not had hospice persons accused of theft. I can not say that about nursing home personel, or the home health caretakers. People are different, and perhaps I am lucky, but I stand by this statement anyways.
Link Posted: 3/14/2011 1:24:14 PM EST
My wife is a hospice RN has been doing it for over a year now she likes the job a lot because she feels that she is making the patient comfortable and letting them die with little or no pain in there home. She has had patients that have gotten better she takes care of all her patients like they where her family and had gotten close to one or two of them. There was a time she asked to be a hospice RN for a very young child because no one else would take the child (I think the child was 8 years old.) She know it would have been hard on her being a mother and all but it was because she is a mother she wanted to do it.

Hospice is a good thing if it's that time and the patient want it! Your family is in our Prayers!
Link Posted: 3/14/2011 2:04:12 PM EST
TJ, our prayers are with you and your MIL. not much more I can add to what's been said. Hospice is for folks who are terminally ill when there is no doubt as the the outcome, and hopefully your MIL will live to see her 90th.

Your post has been very informative, and I can tell what it took to write it. Thank you.

Ops
Link Posted: 3/14/2011 2:09:24 PM EST
Thank you as well for sharing something that has to be very difficult to deal with. There are many people here that have your MIL, family, and you in our thoughts and prayers.
Link Posted: 3/14/2011 3:36:05 PM EST
Thoughts and prayers TJ.
Link Posted: 3/14/2011 4:19:30 PM EST

TJ,
Some of the kindest and most dedicated nurses I've known and volunteered with have been hospice nurses. Now, these ladies were from a nonprofit, faith-based hospice, and they tell me things are different in other groups. From what you've written, though, it sounds like they're pushing to put your MIL on hospice care way to soon. It also sounds like that particular hospice group isn't looking out for your MIL's best interests. Maybe there are other options there in your area, at least for when your MIL is at that point and ready?

God bless your family with peace and your MIL with comfort, strength, and a desire to seek surgical care when the time is right.
Red
Link Posted: 3/14/2011 4:22:11 PM EST
Originally Posted By TomJefferson:

Five years ago it was my brother in intensive care as his ex-wife of 30 years wanted him unplugged yet we had no idea what was wrong with him yet. I'm talking they hadn't been married in 30 years but she was right there to make the call. I kid you not. That time the hospital came in the minute he was on a respirator and advised us it was policy they ask if we want him unplugged. I guess the ex wanted his IRA. Anyway, I did have my brother sign control over to me in the hospital before he went unconscious, I had the ex kicked out, and he's doing quite well now. He's taking care of my mom, built a retirement cabin, and is helping his grandchildren grow up.


WOW. Watchful waiting should ALWAYS be part of the standard of care when the causes of disease are unknown. What a mess.
Link Posted: 3/14/2011 4:42:43 PM EST
I have had occasion to use hospice services twice: once for my MIL and the second just recently, my Mom.

In both cases they had exhausted what treatments could do for them. MIL had Alzheimer's and Mom had lung/brain cancer. Hospice did a wonderful job of managing pain and making the end of life experience as easy as possible for the families and the patient.

Both were admitted to a hospice facility so I cannot speak to in-home hospice care. As everyone pretty much has said: the only treatments are for comfort, not for longevity. If your goal is to stretch out life for every possible minute then search for another solution. If a dignified exit to this world is the plan, then there is no better choice than hospice.

Link Posted: 3/14/2011 5:17:02 PM EST
Originally Posted By TomJefferson:
What sets "what is needed for treatment" is the condition of the patient, but what sets "what Medicare will provide" is Medicare. They are not the same and "Medicare will take care of me" is a big mistake these days.


+1

My brother worked for seven years at a medical billing corporation. He managed the coders who assigned ICD-9 and CPT codes to physicians' reports, and saw the rejections when they came in. As he put it, "Two years into the job, I thought I had it figured out: Medicare was legalized money laundering. Five years into the job, I realized: Medicare is theft, plain and simple, full stop."
Link Posted: 3/14/2011 5:19:33 PM EST
Damn, that's a rotten catch 22 to be in.

My prayers for you folks going through this now. I remember when hospice was in with my step father when his cancers were devastating him. They were good folks to him and us.
Link Posted: 3/14/2011 5:21:55 PM EST
Hospice is not supposed to be anything but about end of life.

Once you are in hospice the decisions about whether you live or die have already been made. It is only about how you die.

Link Posted: 3/14/2011 5:36:31 PM EST
Thoughts and prayers to you, TJ, your wife, family and to your MIL.

My MIL lives with us, for the past 7 years. She is turning 90 in less than a week.
So far, so good. My wife has full medical power for decision making,
and already has my MIL's wishes in writing, notarized and lawyered up. We hope never to use them.

My grandfather died here in my home, under the care of my mother and hospice, per his wishes.
We have a lot of positive things to say about hospice, they were a godsend.
My mother was able to give shots, and I will say this, hospice saw that we had more than our fair share of morphine.
I'll leave that to everyone else's imagination.

At the minimum, for terminal patients, hospice allows you to leave the room, run an errand,
get groceries, or simply to collect your thoughts.

Once again, thoughts and prayers to you and yours. It's a tough section of road,
but I would imagine your MIL certainly appreciates having the care and a loving family around at all times.
That, in and of itself, must be a huge comfort.

God bless.
Link Posted: 3/14/2011 5:57:00 PM EST
Hospice was there for my mom in 2005, she was at home when she died from cancer. They were good to her and my dad. I know mom was in a lot of pain and I am thankful the hospice nurses where there to ease her pain.

I am sorry to hear about your MIL and wish your family the very best.

David
Link Posted: 3/14/2011 6:01:41 PM EST
Originally Posted By glenn_r:
Originally Posted By TomJefferson:
Their goal is make her comfortable and help her die.


This is what Hospice is for...people who are terminal and want to die in comfort. If a person is trying to get better, they don't meet Hospice criteria and should be somewhere else.

I wish you and your family the best, but I wonder whether you understood what hospice does. If you're trying to get better, you should get out of hospice––for their benefit, and for yours.



I can find no flaws in this post. Hospice is for people who are not expected to improve. And despite the impression the OP has, pain management is not withheld from those not enrolled in hospice.
Link Posted: 3/14/2011 6:12:51 PM EST
We used Hopsice for my Mom a year and a half ago. The nurses were some of the kindest and most compassionate people I have ever had God's grace to meet. My Mom had stage 4 lung cancer when she was diagnosed and it quickly spread to her liver and bones. Her pain management was very difficult and the nurses were there almost every day, not the once a week or so they had originally told us. When she passed, a couple of the nurses stopped by my Mom's visitation and the managing RN still calls my Dad every couple of months to see how he is doing. I thank God for the nurses whose compassionate care eased my Mother's final weeks on this earth.

That being said, Hospice is only for terminal patients who have come to the voluntary realization that their life is at it's end and they no longer wish to seek treatment for whatever illness has brought them to this point.

Link Posted: 3/14/2011 6:13:53 PM EST
Link Posted: 3/14/2011 6:19:35 PM EST
Sorry, should have posted this first.

TJ, prayers sent for your mother-in-law, your wife, her family and you.
Link Posted: 3/14/2011 6:36:49 PM EST
TJ sorry to hear about your MIL and wish her and your family the best.

Hospice can be a great thing to help patients and their family's through tough times. The problem seem to be that patients get improperly put on the program. I saw a case recently where the patient had been on hospice for over three years. I have heard that it happens fairly often. The doctors/hospitals are enrolling patients that don't qualify for the program.

I would look into the DNR they made her sign. I don't think anyone can force you to sign one. You may need to check with the department of health and hospitals.
Link Posted: 3/14/2011 6:48:31 PM EST
[Last Edit: 3/14/2011 6:52:43 PM EST by discworld717]
Originally Posted By TomJefferson:
Its a morbid topic I know, but it is something I am living first hand right now and if you don't know about it can greatly shorten a loved ones life or have them live in un-necessary pain.

A long story very short, my MIL goes into the hospital with a life threatening heart condition. She's 82. A combination of not liking the odds and fear of surgery, she refuses the surgery. This was immediately seen as a desire to die and she was pressured in a big way to sign a DNR, "Do Not Resuscitate". I'm talking can't get in the ambulance till you sign that to get home. That made her eligible for "Home Hospice".

Right off the bat, you learn they damn sure have a different end game than you do. I'm going to be blunt here, their end game is death. Though you may want your loved one to live as long as they can, that's not their goal nor is it their behavior even. They're use to death so are very blunt about things like "You aren't going to get better" while not giving encouragement of any sort. This is so true. I've had hospice complain because the family member was not dying soon enough. "If they are going to keep living...We may have to drop you." This is a direct quote from the hospice worker about my FIL.

Why use them then? Its pretty simple, they give you a choice. You either use Hospice or do without pain medication above a mild pain pill. They cover things like oxygen and all sorts of make you comfortable stuff, you wouldn't get otherwise. The downside is they do not cover or even advise you on treat your condition things. That means you have to keep a doctor outside Hospice for those issues. If the patient can not be moved other than ambulance, that creates another problem as doctors outside Hospice are setup for patient come to them and Hospice operates out of he hospitals so hospitals have the same goals as Hospice. that's end of life and fast.

Why we have such programs is very apparent. While providing one very valuable service, its saves a fortune in hospital costs by quite frankly allowing patients to die. Now that's not a bad thing if you do indeed have a terminal patient that their condition is untreatable. Its a real problem if your goal is just to get over a short hump or the condition is treatable by other methods than say surgery. Its a flip of the coin whether its the devil or a saint. Hospice is not for recoverable conditions.

Home Hospice is a little different state to state. Old as I am, my family has gone through this twice now. The basic is a nurse a minimum of once a week comes but you also get a social worker. I guess that's to insure they aren't being abused or something.

In my MILs case, its the devil really. When she first got out, she was having around 3 mild heart attacks a day. The big one was looming and her condition very weak. We started fighting the "End Game" from day one as we sought treatment and fought the drug them keep them in bed which causes them to get even weaker. To do this we had to manipulate the system as we got medical power of attorney and legal power of attorney. This leaves the "DNR" on file but negates it at our say so. Big point here, because my MIL had a regular doctor before this all happened, that doctor agreed to handle the treatment.

I can't tell you the pressure we have had to drop the doctor by Hospice and go with the program. I'm talking multiple meetings even bringing their doctor out which I start each meeting the same, "Its against my morals and religious convictions to do anything but progress positively."

Well, its been 4 weeks now and two weeks since my MIL has had a heart attack. Knock on wood. Our goal is get her strength up to where she can revisit the surgery option. Their goal is make her comfortable and help her die. Its been quite the battle and still is.

Anyone can tell you this stuff is never easy. Probably the hardest thing you will have to do in life. What I hope from this post is you understand what's coming and how important it is to know your goals and their goals may not be the same. .
I am so sorry for your struggles. My prayers are with you and your wife.



Tj



Link Posted: 3/14/2011 6:49:16 PM EST
My Grandmother is a good example of why hospice care exists. She suffered from congestive heart failure, and there really were no long term treatment options - she was old, and she was dying, and she and everyone knew it. So they opted for in-home hospice care, which seemed to be going fine except for one thing - her 3 daughters (including my Mom) saw hospice as a way of delaying the inevitable, because they really HADN'T accepted that she was going to leave them. So when she started having trouble breathing again, they called an ambulance. When she wanted a beer, they wouldn't let her have one because it might ... well, something - they never really understood why they acted the way they did. Finally the visiting Hospice nurse and my cousin who was helping out ripped them a new one and pointed out that they were EXTENDING her suffering, because they didn't want to suffer the separation. They finally got a clue, and she died, if not happy, at least comfortable. (The beer was Honey Brown, btw, and my cousin served it up personally).

OP, I hope you and your family make it through your situation. Hospice is NOT for everyone, and I agree with others that have said that it may not be the right solution in your situation. Just remember to put her first - in an objective manner - and you'll find a solution.
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