Mom (diagnosed in 2004) is still living with my brothers rotating months (if anyone remembers me). Her condition right now is: she walks slower fearing she will fall and is off balance; she still eats very good and we still take her out to eat every week and she eats everything on her plate - I have to just cut her food (like pancakes, eggs, etc) but she eats okay with the fork; she is very quiet (that is why my brothers cannot see spending 10,000 a month in a nursing home just to have her sit around quietly not causing a problem); she has bathroom issues (doesn't understand wiping, where to throw the paper) - sometimes will go in the bathroom and come right out without going. Doesn't know me but knows a maryann (me) is her daughter - has trouble expressing herself and cannot talk good at all. Will answer you if you ask her a question, knows how many fingers, toes, she has. She can laugh, says she is fine, okay, has no pain.
I am still taking her to her doctor twice a month (worry if she cannot walk how will i get her there?)
She is on aricept and namenda (should I take her off of them now?) Doctor will say keep her on.
Regarding feeding tubes in end stage - anyone here have their parent on a feeding tube and how much longer can they live with this tube? Being a devout Catholic, I am taught that food and water are rights for everyone and I plan to follow that. What is your experience with feeding tubes? How much longer can she live? I don't want her to die from starvation or dehydration. Would nursing home put one in if I insist?
Please advise, and I don't mean to offend anyone, just want to hear from experience.
When my Mom stopped processing food, we asked about a feeding tube. Her doctor said it would not help at all, since it wasn't so much that she was hardly eating, it was was that her body did not know how to make use of the food, and the same with her pills.
In the many months between this diagnosis and death, Mom lost nearly half her body weight but did not seem to be suffering or feeling hunger. She did sip water.
I admire your brothers for being willing and able to care for her at home. You are a good, loving family.
You have to understand something about the disease so that you don't carry any guilt about going against any Catholic premise. I too am Catholic.
You will come to a point where Mom will start to not want to eat. She may eat breakfast and then start to take hissy-fit for lunch. She may eat all day and then not eat for a few days after, etc.
When the time comes that she can no longer swallow, you will then have the option of a feeding tube but why do it? As agreed, we were told that its not that the now swallowing is causing her to lose weight and pass faster, its because the body is unable to take nutrients from the food and send it to the muscles, skin, and organs that need it to survive.
At that point of feeding tube decisions, I hope you would defer from doing so. it doesn't make the uality of life any better for the patient. It drags on the inevitable and deny's God's destiny.
Denying a feeding tube is not indicative of being a good or bad Catholic. Honor thy Mother and Father is important. Being a responsible adult and making the difficult decisons when the time comes will make you good and wonderful children who God will reward. So ease your conscious.
In answer to your question of how long can they last on a feeding tube? It could be months or years. My cousin's husband lived 2 years on a feeding tube but it was just a blob of a body with tube sticking out of it, it wasn't her husband at all, he died a number of months before this - in her eyes.
Having that tube just prolonged the agony of watching him just lay there.
Martha and Diane are right. It is not that they don't eat, it is the fact that their bodies can not process what they eat therefore there is no reason to force feed. If someone is in a coma and their body is still processing the food they are given then a feeding tube will keep them alive. If they have dementia and the brain's ability to tell the digestive system to work has failed, then it is not beneficial to put them on a feeding tube. The inability to swallow is an indication that the digestive system is just not working properly since it is part of the digestive system.
I would never put Mom or Dad on a feeding tube. They have requested this themselves. Mom understands ALZ because her Mom and several other sisters and siblings have had the disease. For her, quality of life is much more important than quantity of life. She wants to die, when it is her time, without artificial interferance. As she says, if there is a chance that I will get better then there is a reason for the procedure. If it is just delaying what will be, then there is no need for the procedure. I will follow her words and I do not see a religious conflict here. Withholding food from someone that has a chance of living is wrong. When the body stops processing the food, then it is time to let go.
Marypar...I remember your posts also...and agree that what your brothers (and I'm sure, your SIL's are doing is very comendable!)
Having very recently gone thru the death process with my own Mom...I'm very familiar with the guilt that comes along with this "starving process".
Mom quit eating/drinking 7 or 8 days before actually passing away...and I knew I had to "get it O.K. in my head" that this was NOT a horrible experience for her. PLEASE do some research on this...I did, and it made this whole process easier for me to accept. She is NOT starving...the body is simply doing a very natural thing to shut down. Hard to watch? You betcha! With some understanding in my pocket, though, my heart was not so heavy.
Wish I could get away with sneaking some sites here...but I don't want to get banned! There's so much info out there for you that will help in this matter................sending positive vibes to you........Pam
None of us is insensitive to what you have to deal with and the questions you ask. We're here for you and know that its difficult to be noble.
While you may want the feeding tube to have your mother for as long as you can. The dying process is difficult to watch. As with another poster, it took about 2 - 3 weeks for my mother's body to actually shut down and for her to pass
As we pray and hope for you, we truly feel the feeding tube when the time comes is not going to make and do anything positive for Mom. We're sorry about this but its her brain that is failing her body not the other way around.
our prayers are with you.
P.s. My sister still cries periodically saying she can't believe that she starved mommy but I keep telling her she didn't, it was her brain that cheated her body.
In fact, while going through this, she went and spoke to our priest about it and stuff. he knew how difficult my mother's life had become.
I watched my Mother whom I cared for at home slowly lose her appetite. The physician's assistant shared with me her loss of appetite was part of the progression of her disease. My Mother thankfully had a Living Will which forbid the rehab center from inserting a feeding tube. My Mother was 85 and was ready to go to heaven as she was so tired of having a body that no longer worked well.
When she had to live in the rehab/nursing center for only a month and a half, the nurses were frustrated that she had no appetite. She told me she didn't feel well. Her heart rate was slowing down, and the last several days of her life she slept. The day before she passed away she didn't even want to acknowledge me.
Please don't have a feeding tube installed. It only prolongs the state in God's plan. I know here in Pa once a feeding tube is inserted it can't be removed-and that is so unfair to the patient. Let God call her home in His time.