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??
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.
Quote:
Originally Posted by ninamarc
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??
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.
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.
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.
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.
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.
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
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.
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.
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.
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
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.
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.
The following user gives a hug of support to all4mom: ninamarc (05-05-2012)
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
The Following User Says Thank You to Gabriel For This Useful Post: ninamarc (05-04-2012)
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.
The following user gives a hug of support to ninamarc: KrenM (05-05-2012)
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!
Kern is right. Hospice will do what is necessary. If they can take small droplets of water, thickened liquids, or Ensure then they will use that. They do use the swabs. Comfort care includes all of this. I remember my sister using a straw to put droplets of thickened liquids into Dad's mouth. But the other side we have to remember is that when the body forgets to swallow, the rest of the digestive system is also compromised. Even with a tube, many times, they do not process what is put into the stomach. There is also the problem of aspiration. If a loved one can not effectively swallow there is a greater possibility of the liquids being aspirated into the lungs causing aspiration pneumonia which is very difficult to treat. When they become unable to swallow, then there is much more going on than just the ability to eat. It is only a part of the process involved when a body shuts down.
I also dislike dramatizations or media extravaganzas that lead you to believe that you are "killing" your loved one. Allowing a loved one to die with dignity in natures time is not killing in my book. Personally I want quality of life not quantity of life. For me the decision was not a difficult one. It was made for Dad, has been made for Mom... and has been made for me as well
I agree that we should all have the right to make that decisions for ourselves, but I always believe STRONGLY that we shouldn't keep going along that line of thought and begin making that decision for others -- even if we have the legal right, the persons own wishes/beliefs/values (insofar as we know them) should be respected regardless of our feelings about it. My mother very explicitly expressed that wish, and I KNOW it's in accordance with the principles she's always espoused, so I did what I believe she wanted. Only after the fact did she qualify her statement, saying that she wants to live, then adding... "But not past her time," whatever that means. I'm like, "NOW you tell me, Mom" lol...
I'm afraid I'm very much hung up on an idealized vision of our final goodbye; I want her at home, comfortable, looking like her old self (which, thanks to the feedings, she does again; she was getting very gaunt and hollow-eyed before), and NO REGRETS... I'm sure I won't get what I want in this and hope I can deal with it. Most of all, though, I want it to be the ending SHE wants...
But getting technical for just a moment: I wonder WHY this procedure is so often so successful in younger people (such as those with ALS or other muscular diseases, cancer survivors, etc.) yet not so much in the demented elderly; is the body just giving out?
All... everybody has the right to make their own decisions for sure. Mom watched her mother be "saved" with excessive amounts of IV antibiotics only to remain in a near comatose state for over a year. She had no quality of life. Even without a feeding tube she slid into bedsores and other complications as she withered away slowly. For that reason Mom's wishes are very explicit. They include not only the standard feeding tubes, ivs, and respirators along with the do not resuscitate order but no IV antibiotics is included. I was there for Nannie, I was there for Dad who had the same request, and I will be there for Mom as well. Via their wishes I have used Hospice and their palliative care for both Mom and Dad. So this is not a new idea to me and I made my decision many moons ago. I have the same instructions as my Mom and Dad did. Mine also specifies Dementia as an incident for none of the above.
Feeding tubes and IVs do work better in some cases and are less effective in others. When a dementia patient loses the ability to swallow which is usually the reason they are not eating, they also are losing many more body functions that are also associated with digestion. Every function in our body is dependent on signals from the brain to operate effectively. By the time the swallowing response is compromised, other responses are compromised as well. The ability to absorb what is ingested is compromised. The bodies ability to produce the chemicals needed for digestion is compromised. Liver and kidney function are compromised. Bypassing the swallowing and putting nutrients directly into the stomach doesn't mean they are getting to the cell structures.
In my Dad's case he didn't stop eating and his ability to swallow did not diminish until the last few days. Yet over the last year he lost from 184 down to less than 130 pounds and he was over 6 foot tall. His medications became ineffective as well. It was not his ability to swallow that was the problem but his inability to digest and use what he did eat. This is an example of why feeding tubes do not always do what we expect. Not many flourish on feeding tubes. Some maintain but some continue to decline. Dementia is one of those cases when the chances are good that they will continue to decline.
Neither birth nor death is easy. We have idealized visions of floating in and out of this life on wings of beauty. That is never what happens. Both are difficult and can be cruel. When the pain of birth is over we have a precious baby to celebrate but when the pain of death is over we only have loss. We celebrate birth and we fear death. I find them both a part of life. I was put on this earth for a specified length of time and the end is inevitable.
I find it ironic that we are so wrapped up in modern devices to extend life and the morality of those devices. Are we bound to extend life at all cost? Were our ancestors wrong because they didn't have a ventilator or antibiotics? There was a time when the common flu was deadly. When an elderly parent was unable to eat, there was nothing that could be done. So we as human created something to do and we declared it a matter of morality to do all that we created. I do wonder where the morality attached to using these devices came from? I don't even know if they are more humane. They are an invention of our modern society. So which way truly honors us as humans and maintains our dignity?
That is true - I understand that feeding tube will not help that much for someone with severe dementia who is shutting down gradually. For younger disabled people, it is OK. I got a friend who adopted an disabled child who needs feeding tube all the time and he got infection a lot too. But the child is stable and can live longer life.
Forget about quality of life: medically, feeding tube is not going well with very severe dementia people.
In a way, the artificial tube can be compared with surgery or any other medical steps. Should we stop surgery because it is not "natural"?
Life is complicated and quality of life has different definition for each person; the line is different for everyone.
What I can do is to understand the medical situation. Deb, thanks for the explanation.
Sure, each modern intervention has the same questions attached Nina. For me it is the outcome that is important. If it is a young child with a problem of digestion when a feeding tube will improve the quality of life and allow them to live then the outcome is good. If it is advanced dementia and it is only prolonging the inevitable without many benefits then why do it. Those are just my thoughts after much soul searching and each of us needs to know the pros and cons, the particulars, and come to our own decisions. Healthy discussion is important to making these decision so we know what we want and can explain it adequately for those that will eventually be carrying out our decisions. That is why I have had this discussion many times with my daughter who will eventually have the responsibility of carrying out my wishes
