It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-08-2012, 08:38 AM   #31
Senior Veteran
(male)
 
Join Date: Aug 2007
Location: Brandon, Mississippi, USA
Posts: 544
kenbob71 HB Userkenbob71 HB Userkenbob71 HB Userkenbob71 HB Userkenbob71 HB User
Re: Feeding tube???

Sorry that it's come to that point. May just be best to leave him alone and let him deal with it as best you can. I think his brain knows it, just not his heart. And there's prob not a lot you can do to reason with that. You can't convince someone of anything they don't WANT to hear. take care. K

 
Old 05-08-2012, 08:47 AM   #32
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Feeding tube???

Quote:
Originally Posted by kenbob71 View Post
Sorry that it's come to that point. May just be best to leave him alone and let him deal with it as best you can. I think his brain knows it, just not his heart. And there's prob not a lot you can do to reason with that. You can't convince someone of anything they don't WANT to hear. take care. K
My FIL's living will was done in IL. IL state has this law:
"Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death. "

Would it?
The thing is the living will and health care proxy is totally not for this situation....

Nina

 
Sponsors Lightbulb
   
Old 05-08-2012, 09:30 AM   #33
Member
(female)
 
Join Date: Aug 2010
Location: Washington DC area
Posts: 79
KrenM HB UserKrenM HB UserKrenM HB UserKrenM HB User
Re: Feeding tube???

Quote:
Originally Posted by ninamarc View Post
My FIL's living will was done in IL. IL state has this law:
"Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death. "

Would it?
The thing is the living will and health care proxy is totally not for this situation....

Nina
Nina, doesn't your FIL live in VT now? Laws vary from state to state, so the law in IL doesn't necessarily apply if he lives elsewhere.

I think the law means regular food and water, not food by mechanical means; i.e. a feeding tube, but I'm not sure.

Ken is right, sweetie. I think you need to let this go for now. It is a personal decision that your husband has to make, and I know you want to support him no matter what he decides.

Best wishes,
Kren

 
Old 05-08-2012, 09:53 AM   #34
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Feeding tube???

For the record, I wouldn't say "the tubes don't work"; they can and do work. My mother sailed through the surgery, had her first meal, no problem, has been getting virtually all her nutrition (except for "pleasure" food: sweets) for weeks now, and is doing fine with it other than peristent diarrhea, which was pre-existing and SEEMS to be clearing up. I've read that diarrhea is seldom the direct result of tube feeding, although softer stools will be the norm afterward; formulas can always be adjusted if it's a problem, and some even use watered-down baby food instead. Another thing: we keep using the term "at that stage," but WHICH stage? Are we so say that when those signals fail to reach the brain, there is no capacity or justification for continued existence? Also, we all repeat that "AD is a terminal disease." Well, again, we all have the "terminal disease" called life; something will kill each of us eventually. Even "The 36-Hour Day," the AD bible, states that the IMMEDIATE cause of death will be something else (preventable or not), with the secondary cause being the AD. Short of shutting down respiration -- the brain stem itself would have to be affected, and even people in comas continue to breathe -- it isn't *really* the direct cause of death. So it's not all cut-and-dried. I'm learning the tube feeding procedure (it's not that hard), and Mom is maintaining her weight. Is she happy to be alive? Turns out NOT. Yesterday she cried and asked, "Why am I still here?" It's almost as if her soul knows she missed the bus or the train or the boat. Depsite her saying she wanted to live, she is NOT enjoying her life and is in fact suffering to some degree. I want to get her home from the SNF (rehab) and see if she's more comfortable and happier at home. If not, then I will definitely be doing some soul-searching. Now that this step has been taken, it will be much harder to "untake" it. Nonetheless, how do you know if they've stopped eating/drinking FOR GOOD because their bodies are dying OR if they've just lost their appetites because of illness (she had already been hospitalized for six weeks and DOES experience "hospital delirium") or even depression? It's not as cut-and-dried as we might like to think. Although I will now say it was probably the wrong decision in our particular case (she was ready; we interfered), I think we do have to look at each situation on a case-by-case basis and, if we must err, err on the side of life. Once it's gone, it's gone for good (at least in THIS world; hopefully, there's a better one waiting)...

Last edited by all4mom; 05-08-2012 at 09:58 AM.

 
Old 05-08-2012, 12:49 PM   #35
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Feeding tube???

Quote:
Originally Posted by KrenM View Post
Nina, doesn't your FIL live in VT now? Laws vary from state to state, so the law in IL doesn't necessarily apply if he lives elsewhere.

I think the law means regular food and water, not food by mechanical means; i.e. a feeding tube, but I'm not sure.

Ken is right, sweetie. I think you need to let this go for now. It is a personal decision that your husband has to make, and I know you want to support him no matter what he decides.

Best wishes,
Kren
The water and food are referred as artificial feed. Living will only deals with such matter as prolonged treatments.
My FIL signed it in IL so we should do what IL state says.

I do know I am supporting my husband but we need to understand what is going on first so I am checking out all the facts. I am not pushing him or anything. Now the fact is clear after a few weeks' search, it is still unclear but I now know what is going on in their minds.
So it is up to my husband.

The other thing is if indeed we need to give him some tubes or IVs, he will have to go to the hospital and if he stays longer and still has tubes, he will have to move out of his current home. The home for memory impaired does not do IV therapy and more. They do oxygen, catheter and medications.
If he really wants to do that, we have to go back to the same mode again: get another skilled care NH and/or hire 24/7 personal caregiver again since we cannot be there all the time.

Now I am more relaxed since this may not happen and I know more about what my FIL wants. I am not surprised since my own parents don't even want to talk about this kind of thing. It is the old world.

Nina

Last edited by ninamarc; 05-08-2012 at 12:51 PM.

 
Old 05-09-2012, 09:00 AM   #36
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Feeding tube???

If he has to go back to a hospital and stays at least three days, Medicare will pay 100% of at least 20 days in a SNF and then the large percentage of it for another 80; with supplemental insurance, it's up to 100 days at no charge. My mother, I'm happy to report, is actually doing BETTER today and for the first time requested her breakfast...

And ate her FIRST solid food in forever... With a PEG tube, you can still eat and drink.

"Never say die," I always say!

 
Old 05-09-2012, 03:45 PM   #37
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Feeding tube???

Nina:

I thought of you last night. We went to a presentation offered by our local Alzhimers Association on end-of-life issues relating to Alzheimers' care. It ended up being a presentation by a hospice organization, talking about their services (covered by Medicare) etc. The speaker addressed feeding tubes at length. He said that it's a family decision, and that the patient's living will may have addressed it. However, he also explained that a feeding tube is not considered by hospice guidelines to be "palliative care" required for the comfort of the patient. He said that by the time a dying patient is unable or unwilling to eat anymore, there are typically other bodily shut-downs such as intestinal processes, heart stress, etc. that make it harder for the patient to process foods. Not eating is actually part of an overall bodily shut-down that reflects a reality that the patient's body no longer needs calories to sustain life. He said that various studies have shown that patients do not feel hunger pains at this stage, and that hospice will offer moisture other ways if the patient is unable to drink fluids. He said that in hospice experience, feeding tubes for terminal patents can create more problems and do not add to the comfort of a patient's final days or weeks -which is hospice's overall goal. He mentioned that the religions that work with their hospice also view the feeding tube as an artificial means of prolonging life, and that their religious advisors can provide counseling on the decision to insert a tube or not as part of overall hospice care.

Of course, this is an extremely personal decision and there are countless factors that can go into the decision. I just wanted to share the information that this speaker provided.

My take-away from the session was NOT that feeding tubes are always bad. The answer obviously isn't going to be the same for every patient.

My conclusion from the presentation was that by the time a feeding tube might be needed, the family (1) probably has reviewed any living will and patient wishes, as you've been doing; and (2) hospice and/or the family doctor will be able to provide very patient-specific advice regarding the risks and benefits to be achieved from the feeding tube as part of the patient's care plan. It's probably a good idea to discuss various scenarios, as you and your husband are doing, so that you know in your own minds the different scenarios where a tube might be acceptable or might be rejected.

I asked when hospice is called for an advanced Alzheimer's patient. This has been weighing on me since DH lost the ability to walk and stopped recognizing us. As usual, there was no clear "one size-fits-all" answer: Every patient is different. The nursing home staff will probably see a major drop-off or a failure of bodily functioning. Ask the doctor.

Last edited by Beginning; 05-09-2012 at 03:47 PM.

 
The Following User Says Thank You to Beginning For This Useful Post:
ninamarc (05-09-2012)
Old 05-10-2012, 09:03 AM   #38
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Feeding tube???

Again... The question is, "Who is terminal?" My mother does not have cancer, COPD, emphysema or any condition that will "kill" her other than life itself. She doesn't even have AD, per se, but rather some brain damage that is vascular in nature. As you can see, although she stopped eating and drinking at one point, she didn't "die naturally" a few days later, but is still going strong -- she's actually never been in better PHYSICAL health since all this began two months ago -- weeks after the PEG placement... So I would say only that one must be very careful not to hurry along those who can survive that period. From what I've read, the bioethicists are still debating whether food/water are "heroic artificial life support" or just good essential nursing care. Just because one can't bathe oneself after awhile, does that mean one should remain filthy? Hundreds of thousands of younger peopler with MS, ALS, paralysis from accidents, etc. are surviving on not only TPN or other "tube feedings," but also on ventilators. Hospice is for the END OF LIFE. When that actually IS a question frightening in its awesome responsibility to answer accurately...

Last edited by all4mom; 05-10-2012 at 09:04 AM.

 
The Following User Says Thank You to all4mom For This Useful Post:
ninamarc (05-10-2012)
Old 05-10-2012, 03:19 PM   #39
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Feeding tube???

Nina:

After listening to the hospice speaker, I spent some time on the internet doing research on feeding tubes for advanced dementia patients. I probably read some of the articles that you found as well. In particular, I ran across the study of feeding tube usage for 186,000 residents in all 15,135 licensed nursing homes in the country, that was published in December, 2010 in The Journal of the American Medical Association. You may find that study by searching for its lead author, Dr. Susan L. Mitchell of the Research and Training Institute of Hebrew Rehabilitation for Aged in Boston. The study concluded that there was "growing empirical data and expert opinion indicating that feeding tube use has no demonstrable health benefits in this population and may be associated with increased risks and discomfort."

I agree with all4Mom that this is an extremely personal decision, and the family will have to weigh factors such as any living will or other patient directive, expected quality of life, and whether the patient is truly terminal. The answer for advanced dementia patients may be different than for other patients, per the studies. My husband gave us clear directions and had a living will which directed us not to use a feeding tube. Like your husband, though, I had been worrying about whether I had the strength to decline a feeding tube when the time came to make a decision. After reading these articles and listening to the hospice speaker, I'm going to be more comfortable with following my husband's directives.

I still have my original question...how will we know when DH is ready for hospice? I'll probably try to track down the nursing home doctor over the summer to try to get an answer to that question.

Last edited by Beginning; 05-10-2012 at 03:22 PM.

 
Old 05-10-2012, 06:37 PM   #40
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,160
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Feeding tube???

A Hospice consult can answer the question... are they ready for Hospice. They do have criteria they use. I wanted later with Dad because I didn't know any better. I had the idea that Hospice was for the last few weeks of life. They were on board for about 6 weeks with Dad. I had Mom evaluated early and she was accepted a year ago today. She is reevaluated every 6 months. To be honest, she gets better care and is doing better with Hospice care than she did before!

I do consider Alzheimer's (and other related dementia) a specialty disease. It is the only disease in the top 6 causes of death that is untreatable and always terminal. It eats away at the brain systematically. When one function fails it is followed by another and another. There is no way to restart any failed function. By the time an Alzheimer's patients stops eating... the other associated body functions are also failing. No, it is not one of those other treatable diseases. Mom understood this disease before she got it. Her mother had it. She allowed the doctors t go to extremes to "safe" grandmother and then watch her waste away in bed for a year before she died. It was her option to set the standards which I follow for her and having been here for both grandmother and Mom... and my Dad... my decision is the same. We each have our reasons for our decisions.... and there is no right or wrong...

Love, deb

 
Old 05-10-2012, 07:22 PM   #41
Member
(female)
 
Join Date: Aug 2010
Location: Washington DC area
Posts: 79
KrenM HB UserKrenM HB UserKrenM HB UserKrenM HB User
Re: Feeding tube???

Quote:
Originally Posted by Beginning View Post
I still have my original question...how will we know when DH is ready for hospice? I'll probably try to track down the nursing home doctor over the summer to try to get an answer to that question.
Yes, every patient is different, but usually the doctor will request an evaluation for hospice care when some sort of physical problem arises: significant weight loss (which is sometimes called "failure to thrive"); the patient refuses to eat or drink; some type of organ system failure; or a life-threatening illness (pneumonia, sepsis, etc.). Until Deb told me, I had no idea that a patient could go on hospice care and then off of it if their condition improved. I thought the patient had to be very near death (within 4-6 weeks). Boy, was I wrong! Things have changed so much over the years....

My Mom was just approved for hospice care on Monday (this week). She developed an abscess at the incision site of her second hip surgery (performed end of October last year), and the physician's assistant at the NH wanted her transported to the hospital for treatment. I said no.

Mom is 89 and has vascular dementia. In the past 27 months, she has endured 2 hip fractures, 2 hip surgeries, "broken heart syndrome" (basically a heart attack brought on by stress hormones flooding the bloodstream as opposed to cardiovascular disease), hospital psychosis, congestive heart failure (when the hospital supposedly "forgot" to tell the NH she needed heart medications), a broken toe, 2 arterial bleeds due to a variocele on her ankle, a "false alarm" trip to the ER due to a lab screw-up (where I left her for 5 minutes in the care of a nurse, only to return to find the nurse picking Mom up off the floor), blood transfusions and anxiety attacks. She hyperventilates when you try to take her out of her comfort zone, and with all that she's been through, who can blame her?

So I said enough already, and asked for her doctor to please request a hospice evaluation. She was approved without question. When I read that last paragraph I wrote, I wonder why I was surprised!

Sorry to go on so--just wanted to share my story. Mom is doing better now. The abscess started draining on its own, she's receiving antibiotics, and we avoided another trip to the hospital and the resultant cognitive decline. She told me again today to make sure to put gas in her car, because she might want to drive somewhere.

 
Old 05-11-2012, 01:25 AM   #42
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Feeding tube???

Kren:

Wow. My sympathies. It sounds as if all of you have been riding a horrible roller coaster of crisis after crisis. You start to wonder if medical care is helping or hurting! You were very wise to bring up hospice with her doctor. Hopefully, hospice will help to give you all some peace, supplement the nursing care and ease her passing.

My own questions are premature. DH (around 68) has stopped walking and can't feed himself. He eats soft but not necessarily pureed food. He will occasionally still scoot his geri-chair along the wall with the help of hand rails. He still babbles gibberish, sometimes with a real word mixed in. He sleeps more, but it's hard to tell whether that's because of meds or his condition. Sometimes he looks at people and "talks" to them, and sometimes he doesn't seem to realize that other people are near him at all.

A patient who was in the NH a year before DH now sleeps all of the time, so I see that as being our possible next step.

 
Old 05-11-2012, 08:04 AM   #43
Member
(female)
 
Join Date: Aug 2010
Location: Washington DC area
Posts: 79
KrenM HB UserKrenM HB UserKrenM HB UserKrenM HB User
Re: Feeding tube???

Dear Beginning,

Yes, DH sleeping all of the time sounds like it might be the next step. I'm so sorry that you and your family are going through this.

I just wanted to add that you don't need a specific reason to request a hospice evaluation--you can ask the NH doctor at any time. Hospice will come and evaluate DH and they will tell you if he's not ready yet.

There are several patients at Mom's nursing home that have been on and off hospice care for years--one sweet lady has been given the nickname "Hospice Hannah" because she's been on and off so many times the staff has lost count Being on hospice care these days doesn't necessarily mean death is imminent--it's more about providing comfort care for those who can't be cured by standard medical treatments.

My Mom always did have a flair for the dramatic, and I never expected her to "go gently into that good night." It's just not her style. But I know I am very lucky in a strange way, because most people don't get such a clear signal that it's time for hospice. Mom's situation made it a no-brainer for me.

Best wishes to you and yours on the rest of your journey.

Love, Kren

 
Old 05-11-2012, 10:35 AM   #44
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Feeding tube???

About hospice: here in the states, the doctor will tell you if you want to have hospice when the patient may die in 6 months. But if the patient is not dying and may take 1 year or 2, the family has to apply for hospice. The doctor usually does not ask for it.
The family can ask the hospice co. to check if the patient is qualified for hospice given Alzheimer's. This way, every 6 months, the case will be reviewed. Hospice will continue.
Where my FIL is, they do not ask for hospice now since my FIL is not dying. However, like what Deb did, we could ask the hospice co. to make evaluation but my husband is not interested in. That is, the NH does not ask us for hospice now although we know we could given Alzheimer's.

Regards,
Nina

Last edited by ninamarc; 05-11-2012 at 10:37 AM.

 
Old 05-11-2012, 10:59 AM   #45
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,160
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Feeding tube???

Beginning, Mom is actually ambulatory and feeds herself sweets. The rest you have to feed her. She has slowed down and naps a bit more in the afternoons. She has occasionally falls as well. She has lost over 30 pounds and is down to 100 pounds but now stabilized for the time being. And she has been on Hospice for a year already.

I made the decision to request a Hospice consult basically to keep her out of the ER if she fell. Facility policy, if they fall they are sent to the ER to be checked out. 99.9% of the time they are ok. It is a legal safety net for the facility so nothing is missed.... and if it is then it is not their fault. With Hospice they will call the Hospice nurse for an evaluation. Then Hospice defers the decision whether to go to the ER to ME!! At that point I have a good evaluation by the Hospice nurse to guide my choices. Once I have taken Mom to the ER but 8 times I have not! It also allows Mom to continue to ambulate even though she is a fall risk. Mom doesn't sit well and I can't pin her down. So with Hospice I have fixed it so she can go go go. I know the risk and will take the chance to give her the freedom she still wants.

Oh, and Hospice is monitoring the fall causes. Did she trip on something, lose her balance, pushed, or fall while sitting or standing. This is a guideline to her abilities and what we need to do next. Right now all her falls are caused by pushes, tripping, and transferring. So they cleared out her paths of wheel chair leg rest, watch her in the courtyard to be sure she stays on the smooth paths, and help her up and down. Her balance is still amazing! That wouldn't happen without Hospice excellent awareness. Not to mention they keep track of her bowl movements. Constipation causes her to be unsteady. It is so nice to have somebody that is really on top of what is going on other than me!

Hospice is no longer just for the last weeks or days of life but now includes palliative care for terminal illness... and dementia is one.

Love, deb

 
The Following User Says Thank You to Gabriel For This Useful Post:
Beginning (05-12-2012)
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Aricept
Aspirin
Ativan
Morphine
Namenda
  Reminyl
Risperdal Seroquel
Xanax
Zoloft







All times are GMT -7. The time now is 08:59 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!