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Old 05-02-2012, 08:06 AM   #1
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Feeding tube???

My husband does not understand dementia that much but he feels he would revive his Dad or make him live a little longer by allowing feeding tube in the hospital. Isn't this unrealistic? I am trying to make him see that there is no point since this is the end. It is not like the past when he was treated and needed IVs and etc.
I tried to reason with him but he has this thinking that it is "good" for his Dad. I am not sure if this is more about his missing his own Dad and wants his Dad to be alive.

Perhaps he feels he needs to feed his Dad when his Dad is still "alert". I tell him next year his Dad will be worse. We will see. Once he sees that his Dad is too weak, he may tell them to go for hospice.
He said he wanted to try but he didn't see that this is the end. It is like false hope??

Nina

 
Old 05-02-2012, 11:02 AM   #2
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Re: Feeding tube???

Not knowing any of these people or the preferences they may have expressed during their well times... I agree with you.

It sounds like in this case a feeding tube would simply prolong the inevitable.

But...Does the father have a healthcare directive that expresses his wishes about that sort of thing? If so that would take precedence.

Maybe your husband just needs more time and input to feel that he considered all the options before making such a big decision. Maybe he needs to hear other people say the feeding tube is not a good idea so he can feel confident in his decision.


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Originally Posted by ninamarc View Post
My husband does not understand dementia that much but he feels he would revive his Dad or make him live a little longer by allowing feeding tube in the hospital. Isn't this unrealistic? I am trying to make him see that there is no point since this is the end. It is not like the past when he was treated and needed IVs and etc.
I tried to reason with him but he has this thinking that it is "good" for his Dad. I am not sure if this is more about his missing his own Dad and wants his Dad to be alive.

Perhaps he feels he needs to feed his Dad when his Dad is still "alert". I tell him next year his Dad will be worse. We will see. Once he sees that his Dad is too weak, he may tell them to go for hospice.
He said he wanted to try but he didn't see that this is the end. It is like false hope??

Nina

 
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Old 05-02-2012, 12:45 PM   #3
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Re: Feeding tube???

Quote:
Originally Posted by Suzy0513 View Post
Not knowing any of these people or the preferences they may have expressed during their well times... I agree with you.

It sounds like in this case a feeding tube would simply prolong the inevitable.

But...Does the father have a healthcare directive that expresses his wishes about that sort of thing? If so that would take precedence.

Maybe your husband just needs more time and input to feel that he considered all the options before making such a big decision. Maybe he needs to hear other people say the feeding tube is not a good idea so he can feel confident in his decision.
My FIL has this health proxy about being in coma or vegetable. No, he does not want permanent artificial means when death is imminent.
The thing is this is tricky - it is gray area and he is not "really" dying yet if he is fed. His former home care nurse said he told her long time ago when he was sound that he didn't want any tubing at all.

I found some articles saying feeding tube is not really helping and is NOT good for my FIL. Food IV is also bad for breathing. Once he sees these articles, he will understand more.
I think it helps to understand the process of the tube feeding and etc.

Nina

Last edited by ninamarc; 05-02-2012 at 12:46 PM.

 
Old 05-02-2012, 02:16 PM   #4
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Re: Feeding tube???

Wow, what an aweful burden of a decision for you and your husband, Nina. I see and I do agree where you are coming from. At the same time, I also see your husband clinging to the last vestige of hope. He is his dad, after all. Unfortunately the decision time window is probably very narrow, otherwise I would say give your husband a little room to come to grips with his raw emotions so he can make a clearer-headed decision.

Our middle son is a lot like that. You have to back off to give him space to process the situation on order fpr him to see beyond the pure emotion driven first response.

 
Old 05-02-2012, 04:30 PM   #5
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Re: Feeding tube???

Nina I agree with you. Give your hubby information on the feeding tube process. It is not as simple as one would think and it is not necessarily beneficial for the patient in the long run. It may keep them alive but it does not give them any quality of life.

I do not think the tubes are your husband's problem. He is not ready to accept that this disease is terminal that will take his father from him. Your father has health directives that indicate no tubes. You have his words as well. In my Health care directive it states that "if my condition is terminal and irreversible". It does not mention vegetable (very non medical term that I doubt was used) or coma. Find his Health Care Proxy and find the wording. Terminal and irreversible is what dementia is. There is no hope for improvement and no other outcome. Maybe if he reads the actually Health Care Proxy and knows the prognosis of dementia it may help. BUt as I said... it is probably his denial that is at work here and it will take information and time to change that.

Love, deb

 
Old 05-02-2012, 10:20 PM   #6
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Re: Feeding tube???

Deb,

The proxy is clear and we know it:
The POA statement says no artificial things if he is in coma and etc. (not clear for other conditions.) But POA can decide for him.
The living will says no artificial means when death is imminent. It is what it says exactly.

My husband just agreed that it seems bad for his Dad after he read an article about feeding tube.

Nina

 
Old 05-02-2012, 10:54 PM   #7
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Re: Feeding tube???

Mine uses the words "terminal and irreversible". In addition there is a statement that says... "I desire that my life not be prolonged by life sustaining procedures if I am terminally ill, permanently in a coma, suffer sever dementia, or am in a persistent vegetative state". It also specifically disallows artificial nutrition or hydration. I made sure all the bases were covered in light of my extensive experience with dementia.

One of the problems is the misunderstanding that we are letting our loved ones die... as if there was something we could do to make a difference. In a terminal irreversible illness... we are leaving it up to powers beyond us by not interfering.

With that it is past my bedtime

Love, deb

 
Old 05-03-2012, 06:54 AM   #8
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Re: Feeding tube???

You make an excellent point about being specific in the legal documents to address the dementia situation!!

I am going to call my attorney and have mine amended and recommend that to others as well.



Quote:
Originally Posted by Gabriel View Post
Mine uses the words "terminal and irreversible". In addition there is a statement that says... "I desire that my life not be prolonged by life sustaining procedures if I am terminally ill, permanently in a coma, suffer sever dementia, or am in a persistent vegetative state". It also specifically disallows artificial nutrition or hydration. I made sure all the bases were covered in light of my extensive experience with dementia.

One of the problems is the misunderstanding that we are letting our loved ones die... as if there was something we could do to make a difference. In a terminal irreversible illness... we are leaving it up to powers beyond us by not interfering.

With that it is past my bedtime

Love, deb

 
Old 05-03-2012, 10:53 AM   #9
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Re: Feeding tube???

You are right. I just went back to the living will: it did say that he does not want to be artificially postponed at the moment of his death. He did also mention irreversible and terminal. He did ask for natural death.
I think at this point, my husband has to go back to remove the paperwork and sign another one without tubes!

I guess the thing is my husband has not thought about hospice and "the death" seriously. Not denial, but kind of delayed response.

I really dislike the director of residential care. He is acting political and does not explain the details. I know we are responsible for asking him to wait and etc., but the other directors would add something like "it will be difficult."
This guy is not that helpful in terms of family-NH communication.
Now the NH has changed the family director twice! At least this former family director just got promoted and is still in the home.

Nina

Last edited by ninamarc; 05-03-2012 at 10:54 AM.

 
Old 05-03-2012, 09:57 PM   #10
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Re: Feeding tube???

It does help to read the wishes of the patient. It is easy enough to fix. Please know that hospice is not just for the last few weeks. It is for terminal and irreversible. Mom has been on hospice for almost a year.

Love. Deb

 
Old 05-04-2012, 08:12 AM   #11
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Re: Feeding tube???

This is an excellent point.

In fact, when my Mom was on Hospice (5 months), they said they wished more people realized the point you just making instead of just calling them in the last two weeks.

Another great point from Deb.

Quote:
Originally Posted by Gabriel View Post
It does help to read the wishes of the patient. It is easy enough to fix. Please know that hospice is not just for the last few weeks. It is for terminal and irreversible. Mom has been on hospice for almost a year.

Love. Deb

 
Old 05-04-2012, 01:05 PM   #12
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Re: Feeding tube???

I can definitely speak to this (unfortunately). The "gray areas" were even grayer in my case, as my mother's dementia is not typical AD -- she had some multi-infarct and then a head injury on top of it, so to speak -- and she's at 93 still very much alert and verbal. However, after a long hospitalization for pneumonia and many complications recently, she quit eating and drinking. When asked, she would insist she didn't WANT to die, but for some reason couldn't or wouldn't take more than a few bites or sips and then refused more. This naturally resulted in dehydration, necessitating IV fluid intervention (she has no advance directives and, again, insists that she WANTS to live). We inserted the PEG tube and I have to admit that it's been nothing but misery ever since, and I'm not sure why; it healed well, it works well, but her quality of life has gone to zero. Perhaps the cessation of eating and drinking was the beginning of a sharp decline in general and should have been heeded as such; in many ways I feel the eating/drinking thing was a signal that it was her time to go or her body shutting down. I've heard of this happening before, to others. She was also at the time "seeing visions" of deceased loved one (I truly believe they're actual spirit guides waiting to help her across) and in other ways telling us it was time but, like the husband of the original poster, I believe I must've been in denial or just not ready to let go of my beloved parent. Are we ever "ready" for that? So I thought the tube would restore her to her former self/lifestyle. It seemed like such an easy fix: insert tube, no more nutrition/hydration/medication problems. Although I haven't quite figured out yet why it hasn't worked out, it just hasn't. Ethically speaking, I DO differentiate between basic food and water and something as aggressive as a ventilator for a brain-dead patient. That said, I have to sadly conclude that we probably should have let well enough alone, as it's only resulted in suffering. However, I couldn't bring myself to watch her dehydrate/starve and, had I NOT TRIED, I would never have known this and would probably be forever beating myself for giving up on her too soon. These are the ethical dilemmas that modern medicine presents to us; every decision seems wrong.

Last edited by all4mom; 05-04-2012 at 01:15 PM.

 
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Old 05-04-2012, 06:07 PM   #13
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Re: Feeding tube???

Tube feeding and IV hydration is never going to take the place of eating and drinking. They basically use an Ensure type liquid for nutrition and patients are prone to diahrreah which leads to a worsening of the hydration and more iv's... and on and on we go. It does not bring them back to their vibrant self. It is not the magic bullet that will give Mom or Dad backto us.

Terminal and untreatable.. that does not just describe Alzheimer's but any dementia, many brain injuries, and many other diseases. We also need to decide if the will to live... is to live well or live as comotose. Most, when they say they want to live, want to live well.

Yes there are lots of shades of gray when you are thinking ahead but when the end comes, does anybody want their suffering extended?

Love, deb

 
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Old 05-05-2012, 07:52 AM   #14
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Re: Feeding tube???

The other thing is perhaps that we don't want to think of it as "starve to death". Somehow we may feel that it is cruel to starve them to death when they cannot eat/drink. After some research, I find that the person would not know hunger and the drink from the IV will only make her/him hard to breathe. Feeding tube makes the person suffer with many side effects.
The best thing would be hand feeding at the final moment- wet the lips or tongue and feed whatever is appropriate at the time.
I still remember the case when Terry in FL died. The news reported that her tongue was parched and etc. I don't want to debate over this case here, but I guess hand feeding at the final moment would allow certain quality and the person would not be "too dry".

I know my husband does not want to give up too soon. We will only know what to do at the moment. For now we just know that my FIL wants no artificial tubes at his final moment or even the last 6 months (hospice and etc.) I mean this is an emotional issue and it is really hard to say for sure, no I don't want tubes.
I do know we will have to let him go without any tubes at the end stage. Surprisingly I cried over this last night. Guess I was too much into this!
(After I saw a sad movie about Tucker on TV and in the end it turned me on in the bad mood. I kept thinking it is like execution...)

Hugs,
Nina

Last edited by ninamarc; 05-05-2012 at 08:07 AM.

 
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Old 05-05-2012, 09:01 AM   #15
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Re: Feeding tube???

Dear Nina,

If it's any consolation, I do know that at the end hospice does do things like hand feeding and sips of water. If the person is unable to swallow they swab the mouth with a small sponge on a stick (I think it is called a "toothette" or something like that) to keep the patient from getting too dry.

It's so hard to be the daughter-in-law in all of this--you watch your husband suffer, your FIL suffer and all you can do is be supportive and offer suggestions. I think I would be crying all the time!

Sending you big hugs and best wishes,

Kren

 
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