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Dad showing decreases in appetite on and off... PEG tube or no PEG tube?
Ali Qureshi
Posted: Saturday, January 7, 2012 10:50 PM
Joined: 12/23/2011
Posts: 7


Hello all,

 

I write this with a very heavy heart. My dear father has shown signs of decreased appetite. 3 days ago his appetite was significantly lower for 2 days. Today he finally had his normal appetite back. Is this common as far as how the progression of decreasing appetite? Is it like all the other symptoms that sneak their ugly little heads into his life and then begin to predominate? Or is it usually something that once it happens theres not much change as far as an increasing appetite? I have also noticed that my father sometimes keep the food in his mouth therefore it seems like he is forgetting how to chew. omgosh this hurts so much jsut thinking about it.  I wrote an email to his neurologist and he replies "you dad is nearing the end of his life, do not try to forcefeed and  I would not recommend a PEG tube as it will artificially keep him alive." After hearing that i broke down. things seem better for the time being because i prayed and prayed and he seems to be eating now. I am wondering if we should use a PEG tube when the time comes or not...I want him alive to see me graduate... It feels like a long shot now and im so down.


Ruby Tuesday
Posted: Saturday, January 7, 2012 11:30 PM
Joined: 12/15/2011
Posts: 28


Ali, my heart hurts for you!  I guess with all the things we need to deal with in regard to this terrible disease, I never really thought about feeding tubes - and choices.

 

Your graduation will probably be bitter-sweet whether your loved one is on this earthly plane, or in a better place.  I am sorry!

 

I have no words of wisdom, but I just wanted you to know that I am praying for the right answers to come to you.

 

P.S.  Congradulations on graduating-that is a great accomplishment that I know your father is proud of!

 

-Ruby


Stephanie Z
Posted: Saturday, January 7, 2012 11:48 PM
Joined: 12/15/2011
Posts: 4219


Hi Ali, I'm so sad for you. Losing someone you love is so difficult. It is understandable that you want him to live long enough to see you graduate. Hopefully that will happen.

People with late stage dementia can stop eating only to start again, but unfortunately, this will probably not last very long. If he is holding food in his mouth it may be because he is losing his swallowing reflex. I'd advise asking the doctor for a speech therapy consult to evaluate his swallowing. The therapist will decide whether or not your father needs to go on a puree diet, or a diet of thickened liquids. Doing this will help to avoid aspiration (choking) and I've known patients who were on this type of diet for quite some time before they stopped eating all together.

By the time this happens you should have a plan for end of life care. Did your father ever express his wishes as far as extreme measures to extend his life? Do you think he would want a feeding tube?

There are positives and negatives to feeding tubes. Families often find it hard to let nature take it's course sometimes and feel that they don't want their LO to "starve to death."  Feeding tubes will help with this but in reality, your father's body is starting to shut down. This is natural. He will not "starve to death." When he stops eating and has no interest in food, he will not experience hunger. When he stops drinking, he should not feel thirst. These things happen because the digestive process is almost nonexistant and the body is gradually turning itself off.

While the use of feeding tubes may keep him alive a little longer, they do nothing to improve his quality of life or reduce his suffering.

The use of feeding tubes also carries some risks. Aspiration can occur and there is a risk of infection. Many people with feeding tubes keep trying to pull them out, so sometimes they need to be put in clothing that prevents them from getting at the tube. Some caregivers resort to wrist restraints. (I don't support that.) It may be necessary to have someone near 24 hours a day to prevent him from pulling on the tube. This can be hard on the family as well as the person with dementia.

Most families decide against using a tube but you have to decide for yourself (this is a very personal family decision).

 

People with AD do not die of the dementia itself, but rather from complications such as pneumonia or a urinary tract infection. This happens because as the body is shutting down, the immune system shuts down as well.

 

I have been with a number of dementia patients when they died. Once they stop drinking fluids, they will slip into a deep sleep or coma. The arms and legs will become cold but the inner core temperature will rise. Breathing will become moist and irregular and the person will quietly slip away. I have never seen anyone suffer in this stage.

 

You can support him during this process and let him know you are there by holding his hand, giving him hand and foot massages, stroking his cheek, talking, praying  and reading to him and playing his favorite music. He may not acknowledge you, but I believe that people in this stage know when their loved ones are near.

Some people on this list have used tubes with LOs, most have not. I'm sure you will get more posts on this topic. Whatever you decide, your decision will be made out of love for your father, so it will never be wrong.

Whatever you decide, you may with to contact Hospice for support for you and comfort measures for him.

My best to you in this trying time

Stephanie

 

 

 


SafeSecureContent
Posted: Saturday, January 7, 2012 11:51 PM
Joined: 12/16/2011
Posts: 43


 

There is book called “Hard Choices for Loving People” that I highly recommend . It will help to guide you as you make some really tough decisions. You can download the full text for free at www.hardchoices.com     

I’ll warn you though , reading it will likely be painful . I'm so sorry you are faced with this.  My very very best to you.  

 


rose_ro
Posted: Sunday, January 8, 2012 12:04 AM
Joined: 12/21/2011
Posts: 2431


I am very sorry to hear of any changes...but always I ask - just be sure there's no UTI.

 

Holding the food in the mouth sounds like my mom when she had a UTI.

 

The Catholic Church, as far as I know, does NOT consider a feeding tube an ''artificial'' means of keeping a person alive.  I would get a 2nd opinion from a doctor if you are so inclined.

 

I would want to know what else was going on with him before assuming he's at death's door.  With my grandmothers, we KNEW they were at the end. 

 

There may be feelings in you telling you to get more answers.  I'd listen to that.

 

A person may not be Catholic, but for the Church to take a stand on something like that, a lot of thought and consideration has gone into it.  I'm not saying anyone should follow this, but it's more complicated than just not wanting to eat (which my mom just went through, and she is so not at the end of her journey, I hope!)

 

On the other hand, wanting someone to be there for a part of your life, can be very real and many people live to see those things.  A family friend had cancer, and he survived to see his daughter's wedding.But whether or not he'll be able to be there, or be ''with it,'' you will always feel his love, I'm sure.

 

I have been ''dying'' with trying to get my mom to want to eat...you have to know what else is going on...with my grandmothers, at the end, they began to sleep a lot (but they were also in their 90's) 

 

I'm not saying you should have a feeding tube for him.  I agree with Stephanie, that often they can cause more problems.

 

I think that at the end of life, you're making things worse if you try to stop the body's ''natural'' process.  It's just how the doctor is defining the tube.

 

AND it's so important to know what is really happening.  How old is he, what is his stage, what things have been done to help him eat, if he wants to in any way?

 

I was surprised at how my mom grabbed the jello, or the fruit...I'm not saying your dad is going to be able to do that, just - rule out other things.

 

Also, and I say this gently, I would not have him put on a feeding tube JUST to have him at your graduation. 

 

 

 

 


eloquentsolution1
Posted: Sunday, January 8, 2012 2:31 AM
Joined: 12/16/2011
Posts: 108


mom has gone back and forth a few times.  loss and gain of appetite, weight, cognitive skill, communication.  just love him and accept what comes.

 

 what would your dad want?


AlphaLeah
Posted: Sunday, January 8, 2012 6:59 AM

First, I am terribly sorry that you are at this point in the journey.

A few points to back up what Stephanie and others have said: there is no research that indicates feeding tubes actually extend life. There is research to indicate that the tubes can introduce infections and cause other complications.

My grandfather was put on a feeding tube once he lost consciousness from his terminal condition (it was the default action of the state in which he lived and the hospital in which he was being treated). When I arrived a the hospital after he had been on the feeding tube for quite a while, I was asked to give permission for "another" blood transfusion. When I inquired as to why he needed a blood transfusion, it was explained to me that he was bleeding out from his intestines. That the burden of trying to digest the food he was being given via the tube while his digestive system was in the process of dying was causing stress on the organs and resulting in his bleeding out.

I spoke to my grandmother (who was also hospitalized at the time - and who was in early stages of dementia - about which I was in denial), and she agreed that he would not want these extreme measures. As a result, we were able to have him transferred to hospice where all of the intrusive measures were removed, he was placed on a morphine drip and allowed to die in peace.

I also second the recommendation for reading Hard Choices for Loving People. 

Again, I'm sorry. I know it's extremely painful for you to be facing this decision.