I feel like mom is starving to death. I've made arrangements for a tube to be inserted. Am I doing the right thing?

Dear Angelscare; First let me say how sorry I am to hear of all you are going through right now. Seeing our loved ones with any kind of illness over a length of time is very difficult.
First of all, I want to say that if your mom has any degree of desire to live, then your choosing to help her maintain whatever quality of life is a good thing. Her weakness and inability of walking or standing is not a total debilitating situation when she is able to move her arms, hands, organs still functioning, and communicating with you. It may not be the quality of life we deem she should have, but it is still a place that is temporarily satisfying to her. She voiced her wanting to still be here and so she should since all of the other functions are still in operation.(kidneys, liver, etc.) I thinkd when we do everything we know we can do for out loved ones, we won't look back and 2nd guess so much if they're not with us too much longer. Only our Lord knows exactly when, and in the mean time He has no problem with us doing our part as long as we're helping them the best we can.
I know this, for I just saw my husband go to be with the Lord on May 7th, this yr. and have experienced many different feelings, and asked myself a few of those questions. I know I did all that I could. No doubt about it. When he started to drink less and less and only eating a few teaspoons a day, and was suffering so much in his body and mind, I knew by his acknowledgement and our many talks of Jesus and heaven that he was okay in leaving. I miss him soooooo much, and it is one of the hardest places I've ever been in. I know how much he was hurting, and if it had not been for Hospice, I could not have gotten through this. When they still have some quality of life, you need to do all that you can for them. We believe in healing, and stood on it since the beginning, until I saw him start really suffering. I had to ask the Lord to give me a peace, to accept that my husband was going to receive the ultimate healing, and it was very hard at first to do this. But I finally did, and I am glad that I did because he was able to go much easier. His love and all that he was to so many will be missed for a very long time, but I know after my mom going to be with the Lord Jesus last yr. that I will be able to move forward as he would want me to do. So to you and to many of you, take care of them as long as you can, and then when it's time, and you will know when, let them go. Ask the Lord to give you a peace, and He'll do the rest. God Bless. My husband was 75 yrs. old. His name was Bill. We were married for 18 wonderful yrs.

Angel. I am happy to hear your mom
is doing better. Sometimes we need
To"prime the pump" to help
Them get over the hump.

As for the supplemental, contact another
Company. Unlike part d (meds) you
Can change at any time, so it's just
A matter of company change. Contact
your states insurance office, or a local
Senior center, they might have the
Info.
The part d is more particular, talk to
Medicare, your state insurance commoner
Office might be able to give guidance.
I am unsure if medicare does anything
On liquid nutrition.
Look around on the net to see if you
Can find cheaper than local.
Abbott nutrition does sell direct.
As for the depends the cheapest we
Have found in "pull up" style, is sans.
We use large, and pay less than $31
For a box of 72....AND THAT PRICE
INCLUDES SHIPPING .

as for the sister, I don't really know what
To say, ESP after the comment when
you asked for help.


Take care and my God bless to

Re sister: Do start documenting date/time desription of incident so that, as another poster suggested, supervised visits can be put in place. If i recall, sister called your mom. For the time being could you remove the phone and or silence the ring having the calls go automatically to vm. Through my internet carrier I have phone service. If I were to unplug my phone people can still leave msg via the providers messenging service (at no extra charge). (A manual answering machine lets the recipients hear the caller speaking). You can make it temporary and/or change the number entirely.

I'm glad it worked out for you and she is responding to the nutrition positively. I would have asked if there was an advanced medical directive? And I would've abided by that as my compass especially if my mom had dementia. My mom does have dementia and has AMD so I know what her wishes will be should that happen to us.

Enjoy your mom and try to make peace with sibs. If you don't want to that is okay to as you have to take care of you and your emotional health. If it will always be a toxic relationship, then cut sis loose and put yourself first.

my father who has alzheimers is refusing to eat and drink. My mom and I are on the verge of a nervous break down. We are at our wits end. I heard there is a medication the doctor could prescribe to increase the appetite. I am going to call the doctor tomorrow and find out. If he continues this I know what the outcome will be.

Angelscare, thanks so much for letting us in on how it all went!

With that sister of yours - just an idea - see if the hospital SW could set up a family meeting where he or she could "referee" and work out some ground rules for communication, a schedule for supervised visits or calls, and then you would even have something in writing if needed to back you up if they go on the attack later about not having contact. It might deflate the big balloon or "oh poor me poor mom the mean sister is not letting us contact her and she mist be hiding something terrible" and get the other sisters back on board in some reasonable way. I don't think you are wrong at all - but this might be your chance to get something sorted out and maybe even get input on how to get a little financial help if that's possible.

Glad the surgeries went so well!!!!

I know what you are experiencing. My mother-in-law had made this decision not to have a feeding tube inserted if she could no longer eat on her own when she made out her Living Will. Two years later she was diagnosed with Dementia and admitted to an Assisted Living Facility when we could take care of her no longer. She developed an inability to swallow--it's like she had forgotten how. The medical team and the family decided it was time to take away the food, because sh e had started to have choking episodes as well. Yes it was very hard to watch, because as you say, we felt she was being starved. And basically, I guess you could say yes, she was ! The doctor told us it was harder on us, than on her. The body has a way of easing into a kind sort of peace when this happens. I struggled with this, because when I'm really hungry, I can't imagine being deprived of food. But she didn't appear to be suffering, and she passed away 5 days later with my husband and I there. And we were at peace as well, knowing we had acted on her wishes. May God bless you, my dear, and show you the path you are to follow.

I am so pleased to hear the positive outcome thus far with the peg tube. I am the always rule out type person because as someone mentioned above, many are quick to jump in and assume the issue/problem is a result of dementia/alzheimer's. Our LO's who are elderly sometimes need the boost (a medical intevention) to get them going after an illness. They just don't bounce back and from what i hear C-diff is hard. I will say prayers and keep my fingers crossed for successful ongoing recovery!!! Great news.

Angelscare - you are an amazing woman! And a wise one too...making the decision for the peg and to see what the results are, one day at a time, truly a confirmation that you did the right thing. Now about your siblings...I can relate almost indentical to your situation - and you are right to alienate yourself and your Mom from them for now. They are toxic and that is not good for either you or your Mom. You try to get Hospice in there or someone to help you. If she has no financial means, then Medicaid; were any of her husbands veterans? Then there is definitely help from them too. Thank you and God bless you for sharing your soul with us. Know you are loved and prayed for. It's not easy, but you know the truth, take it all "one day at a time".

My mom and my SIL's father had the stomach tube. Mom was 100% on it from the beginning. SIL's father ate from both the stomach tube and mouth. Eventually, he only got food from the tube. Mom's tube has popped out several times. I tried several times to stuff it back in. It would pop out again. Finally had to take her on the ambulance to the ER since her clinic said that none of their physicians know how to reinsert the tube. ER doctor lectured me that I can do it myself...only after he inserted it without showing me. So, he Explains to me how to insert the tube back in, etc...I kept nodding but in my head, "No way! I couldn't even get the tube near the hole to push it back in. Nope!" It was totally gross for me when I tried to push it back in.

But, you will need to learn how to insert it back in. Remember, there's a balloon inside her stomach. When the peg comes out, you will need to inflate the balloon. I never did it - I just took mom to the ER and have them do it.

I didn't respond when I first saw your thread. I was torn about this. Your mom expressed wanting live, yet what it's dementia speaking and not her true self. Then I think of mom on the stomach tube for about 8-10 years. Mom was a vegetable state for years - no movements at all, no comprehension in her eyes, etc... The tube extended her life but ...what kind of life did she have to be bedridden as a "vegetable". Very difficult situation.

Angelscare, thanks for sharing the update about your mom. It's good to hear that your mother is responding well after the tube insertion and that she's continuing to eat by mouth, also. In my experience, that's a good sign.

If you are paying out of pocket for so much of her supplies, you might consider looking into washable/reusable "feeding tube pads" or "button buddies" to go in place of gauze around her g-tube site. That was a long-term cost (and ecological) savings we found during the time my mother was PEG-fed, and every nurse who saw them was amazed that nobody had come up with the idea earlier.

Good luck to you and your mom.

Thank you to all who responded to my question. I went ahead and had the peg tube inserted on Monday...May 20th. It was going to be an out-patient procedure....but before they did it...her heart Dr. had her pacemaker checked. Just prior to her getting sick....she had been scheduled for a check up...he wanted to change the battery by the end of March...but he choose to put that off until she got over the C Diff. Turns out...the pacemaker needed to be changed. I agreed to let them keep her overnight and so she had the peg tube procedure done at 8:30 am and the pacemaker procedure done at 6:00 pm. I took her home at 10:00 am the next morning. I didn't tell her she was getting the peg tube prior....but the next day at home I explained it to her.....she was fine with my decision. I know it's only been a couple of days....but there is a big difference in her already. Before I took her to the hospital...she was barely responding to anything.....already she is totally alert...laughing....talking on the phone....and even asking for food....(she ate an orange....a pancake....and some M&M's and a cookie throughout the day!!!). The feeding tube is easy to use...(I am doing it myself...not by machine)....and she watches and totally accepts it. Right now...I feel I made the right decision...only time will tell.

I want to explain about my sister....some responces seemed to think that I'm blaming her for my Mom getting sick....I'm not. First of all...there are three sisters involved....the one I spoke about is the youngest...ten years younger then me (I am the oldest)....and she has always been my Mom's favorite....and believe me...this has never been a problem for me. When my Mom's last husband died (she has out lived 4 husbands!!!)...she sold her home and went to live with that sister....who was then her POA and Healthcare Surrogate....and my sister spent all her money. After the money was gone....she had no use for my Mom. One morning...3 years ago...she came to me crying about how badly she was being treated...I took her into my home. Prior to this...I hadn't seen or spoken to my Mom for 6 years....because my sister would not allow my Mom to....she controls everyone's life around her. My Mom changed her POA...etc to my name. I never put any restrictions on who my mom could see or talk to...everyone was welcome at my home. It took 1 1/2 years before that sister came to see her....my other sisters were there all the time....Mom even spent nights at their homes. For Mom's birthday this year...in January....I gave her a big surprise party....the "controling" sister wasn't talking to one of my other sisters at that time....and said she would walk out of the party if that sister came...so my other sister stayed away because she knew how upset my Mom would be if her favorite daughter left. First time I had to 911 my Mom....I called all my sisters to come to the ER....I didn't know if Mom was going to make it....again my sister would not allow my other sister to come....so again...she stayed away so my mother wouldn't be upset. The last two weeks...twice that she was supposed to come visit my Mom...she didn't show up....my Mom was so upset. The previous two times that she did come...she kept telling my Mom it was time for her to die. She also just recently found out her own sugar level was up...so she takes medication like a million other people do...but she's telling my Mom that she's very sick and may die before her....and if she does...she'll wait in heaven for her to get there. I had to give my Mom medicine for anxiety after she left because she was so upset. I had had enough...and told her to stay away. All of a sudden...she makes up with my other sister....and convinces both of them not to visit my Mom unless I allow her too (this was the day before Mother's Day)....so none of my sisters showed up for Mother's Day. I feel I have enough stress dealing with what I'm going through with my Mom...I don't need anymore....so right now...I don't want any of them in my home. Somehow my sister found out that my Mom was in the hospital Monday night....I was at the nurse's station...walked back into my Mom's room....and she was on the phone....my sister had called her...telling her I wouldn't allow her to visit her anymore. She doesn't care about how much she upsets my Mom....telling her this after she just went through two procedures. I hung up the phone...she kept calling back...this was 10:00 pm. My Mom told the nurse her kids were aggravating her...so I unplugged the phone.

I had asked her and my other sisters for some financial help with my Mom when she got sick...none of them would give me a penny. I told them that she may end up in a nursing home if they didn't help....I couldn't do it all myself...24/7....this one in particular...who had spent all of my Mom's money...said she didn't care if she ended up on the street...she wasn't giving a penny....so I do it all myself. Medicare only pays 80%....I have to pay the rest...Mom doesn't have any insurance...she used to....but I guess the payments weren't made and it got cancelled prior to coming to live with me. I pay for her meds....depends....chucks...everything she needs...she does get SS...but that doesn't cover hardly anything.

Right now....I'm worrying about my Mom....and I think it's better if I keep them away until she recoups....and I don't need the added stress of dealing with them. I may be wrong....but that's what I'm doing.

Again...thanks to all who replied....I will update if there are any changes.

an ng tube is really likely to get pulled out and it is uncomfortable while it is inserted.

Have you tried giving her Carnation Instant Breakfast? My parents both drink it and like it. Great nutrition and even kids enjoy it, it's even better with some chocolate ice cream blended into it. It is available at the grocery store and much cheaper than Ensure.

The problem with illness and starvation is that the bodies signals get scrambled -- she may not feel hungry, but her body is starving. It sounds like your mother was doing fine until this illness. It sounds like her body has been hit by a lot of really bad stuff all at once & if maybe if she can get through this she could be OK for years. By your post she doesn't have anything terminal (pace makers can be in for a decade or more - my 97 year old neighbor had hers REPLACED when she was about 90-91). Those of us dealing with AZ-type dementia tend to jump to the conclusion that ALL dementia is permanent irreversible brain damage, forgetting that some "dementia" is transient from health issues.
Hopefully you have a Doc that is cued into probiotics (yogurt, etc), since the importance of internal flora & fauna can be literally life & death w/antibiotics (in the recent yucky-but-kinda-cool department online - woman almost died of starvation after heavy antibiotic dosage, in desperation Docs introduced bacteria from her husband's ..er..GI track.. into her intestines & she recovered). Yogurt & acidopholis sound like better options!

Angelscare, it is a personal decision that you will have to live with. I too feel your struggle. We had a tube inserted for my mom because she wasn't eating (even though she said she was). Sadly she was also a victim of medical malpractice/negligence that caused her decline. she never made it out of the hospital. We endured 5 months of trying to get her better but the hospital was every step against us. They wanted her to die so we couldn't sue them. her appetite went down because they kept giving her meds that caused her hallucinations, thinking that she was eating all day. the tube worked for maybe a month or so, but her body stopped processing food. She never ate by mouth and couldn't speak anymore. I too was hopeful the tube would help, but in the end, it kept leaking and she was dying. She would have drowned if we kept it up. My mom also said she wanted to live but she was stuck in the hospital, so we were fighting an uphill battle. If your mom is at home, you may have better success because she's around familiar surroundings and not dealing with the crappy drugs being shoved down her throat. But I would ask her, as was suggested. See what her thoughts are and if she understands the consequences of feeding tube vs. none. Sometimes in their minds old people think they want to live but just don't have the energy to fight anymore. But i wouldn't give up her on until she gives up on herself. Fight for her as long as you can. That part you won't regret.

Purplesushi - you can usually eat whatever you are able to with a PEG tube in place. Don't feel bad - I hae actually heard people say they would not want a feeding tube because they could not talk with one or would have to stay in bed. There are a lot of emotions and myths around feeding tubes, and that's even worse with trach tubes or ventilators. Tube feeding most often makes sense when swallowing or appetite is so severely and specifically affected that a person can't or won't eat; but usually it does not make sense or help if a person would have to be restrained to keep the tube in place and the loss of eating is just part of a total decline in all abilities. In cases where the GI tract does not work, particularly if it will be temporary, hyperalimentation or IV feeding is not out of the question.

Being unable to swallow does not always mean being ready to die - sometimes it does, but in this case probably not at all. There were acute illnesses that she could very well recover from. Age is just a number - so much depends on so many other factors besides that number. My mom passed on at 79 and I'm thankful she did not lose her ability to eat and swallow until the very last day...she would have hated not eating by mouth and she had already said and put in writing she did not want a feeding tube....would I have talked her into it if she could have had any quality of life for a little longer with one? No way to know and moot point because her heart disease and strokes had become untreatable and we could not have gotten much more quantity of life no matter what we had done...So, there is just no one-size-fits-all answer to this question or a magic formula to use, other than to say that someone who inisists everybody should get a tube or nobody should get a tube is probably wrong :-)

And a person could refuse tube feedings if they did not want them any more, though I think you are right, it would harder to stop at least emotionally than to have never started. I hope this helps. This is a tough topic.

I think you made the choice that you felt best for your mom. When our LO's are very ill, it is important albeit it, difficult to immediately make a decision that best follows their desires. Sometimes, its a battle between your understanding of the medical situation, the genuiness of those caring for your loved one, versus your heart. I was the immediate caretaker for my brother who passed in October 2012. He was only 55, but suffered from a terminal liver condition. He seemingly was doing well, then took a turn for the worse after a grueling 30 day hospitalization, The doctors determined there was little if anything they could do but "keep him comfortable". We ended up with him in hospice where he lingered for less than a month. It was painful watching him die, without nutrition. He had a living will, and I did my best to follow what I thought he wanted. He wanted to live, but he wanted to live under his rules, despite the gravity and reality of his situation and what the doctors said, thus I did the best I could in providing him the best care available for a dying veteran.The Veteran's Hospital was courteous and kind enough to allow us to have him placed in a local hospice as opposed to one that was miles away at a military facility. I miss my brother every day of my life. It is hard to know what is the right thing to do. I suggest incorporating what you know your loved one wants if you "really" know them and lacing it with lots of communication with God and common sense. In the end, I am at peace because I did my best to follow my brother's wishes, despite how much I wish there had been a miracle that would have allowed him to live.

Sorry to say this has to be your decision. There will be many that say yes to the feeding tube and many that say no. You have to do what you believe your mother wants and not what is best for you.

I realize many might disagree with me, but I believe it is about what kind of dignity your mom would want in her last days. My dad was brain dead and still living on his own, but I know that my didn't want to live that way. So we let his body starve under a doctor's care. They made him comfortable and we let him pass because that is what he would have wanted, not what we want.

I realize it hurts and the pain of losing a parent is tough, but what does your mom want? You have to be honest with yourself and remember this is about your mom, her needs, and her wants.

My heart and prayers go out to you because this is one tough decision, but like others have said love your mom and remember to do what is best for her.

Before having the PEG tube placed, find out what it takes legally to have it removed should your mother become unresponsive. You may want to ask about possibly just feeding her through a nasogastric tube while you contemplate the other.

Our bodies have an amazing ability to tell us what we need and don't. As an individual is approaching death the appetite diminishes and so will the desire to drink. Honor her body. The exposure to flu normally wouldn't results in the individual being symptomatic of the flu within two days. Sounds like your mom has had 87 years of being loved. Don't let your fear and anger toward your sister destroy the last bit of time you have with your mom. We are approaching the end with my mother who is 81. She lives with us and we are doing hospice at this time. I have worked in a CCU for 11 years and have seen PEG tubes missused numerous times. They are appropriate in very few cases and normally never the elderly. My prayers and heart to you

Eyerish...so very sorry to hear about your Dad. My sympathies.

I'm so sorry that you are in such a difficult position. Talking to people and reading what folks have to say here will give you all kinds of perspective with which to make the best decision for your mom.

Personally, I would not have a PEG tube inserted into my dad were he in the same situation (he died a little over a week ago). But I have a solid reason why other than I wouldn't agree with the decision.

A month or so before my dad died I had to make some tough choices being his POA and medical POA. My dad had some dementia but he wasn't too far gone. I asked him some simple questions about his health, like "Dad, we'd like to have your defibrillator deactived so if your heart stops, it won't shock you. Do you want us to do this?" He said no. Okay. So I said, "Dad, if you go into cardiac arrest do you want the Dr. to shock your heart with those paddles?" He said yes. It was at this point where I realized that he was unable to make his own healthcare decisions. My dad would NEVER want to be brought back to life in such a way because years ago he put it in writing! But I went on, "Dad, if the Dr. shocks your heart back into rhythm and you stop breathing, do you want a tube inserted down your throat, hooked up to a machine to help you breathe?" He said yes. He was not capable of making these decisions anymore. I'd heard him AND my mom talk for years about what they did not want, no way was I going to let my dad's answers stand. He had paperwork stating the exact opposite!

I guess my point is that you know what your mom would really want and you'll be able to separate what you want for her and what she would want. You have to take her mental state into consideration. If she has dementia this is something that has to be seriously considered when the decision is made. I don't know your mom, I don't know how much time she has left, but if it were my dad I would not have a PEG tube inserted. But he was very sick when he stopped eating and that may not be the case with your mom.

Regardless of your mom's age or general health or her mental state (dementia) no one should be forced to eat. You're trying different nutrition shakes, I'm sure you've tried her favorite foods and all that stuff. If your mom wants a PEG tube inserted into her stomach and she's able to make her own decisions and this is something she chooses I say go ahead and do it. But it is looked at as an 'extraordinary measure'. But only you and your mom and your family can make that choice. I'm sure you'll do what's best for her.

Angelscare - you are in a tough spot; lots of good advice both for and against; the ultimate decision will be made with you, your Mom and your sister. As for food, we gave my Mom red jello made with applesauce - she liked the slight sweetness, the texture and it was good for her - she literally lived on that while dying from uterine cancer - she was at home the entire time. It was a precious time to be with her and watch her enjoy a few bites of applesauce jello. She was almost 86 when she passed. Please know you and your family are in our prayers and hope all will work out for the best for your Mom.

ChristinaW has the "right" answer - if there is a "right" answer - this is a question for a geriatric doctor - I mean, our opinions help but, well, there are so many it makes my own head spin...Angels, this is a VERY personal decision you make (& i may have to face it too w/my own mom)& really no one else should be involved in it but you, your family, & mom's doctors...

Yes, and you are doing the right thing with the tube. That long on antibiotics ruin her stomach flora and she needs acidophilus (good bacteria) to combat what the antibiotics destroyed. It is in liquid or pill form, but get the kind you have to refrigerate. Have you every tasted Boost or Ensure? It tastes like chalk. Skim milk will give her the most calcium and sweeten it with honey if that is more tasty, while the honey combats bacteria. Keep encouraging soups and if she can chew, eat avocados which are the most perfect food, mashed up broccoli, etc. I have a NutriBullet blender which makes vegetables and fruit into a liquid. That way she will have great nutrition and she can drink it off and on. Just keep encouraging. Mashed potatoes, squash, etc. Keep trying to get her to walk too. Best wishes.

How heartbreaking is this? And I mean for you. I know it is so hard to see someone we love struggle so. If she agrees with you, then I would do the tube. But I know my grandmother stopped eating, and she had made it clear that she wanted no extraordinary measures taken. So she passed on. My 80 year old Mom has Alzheimer's. but both she and my Dad (deceased) have always said they don't want extraordinary measures either. It is going to be hard (she made me the Health & Financial POA), but I will do what she wants, even though I know it break my heart.

My mom made this decision on her own. We had the peg tube inserted the day before Thanksgiving. It is not an easy thing to live with. Mom can not swallow anything. Not even a drop of water as her throat has shut down. She enjoys watching her great grandchildren growing up. She is very strong. She takes 3 isosource a day thru her peg. She feeds herself most of the time. Mom has endured and still is enduring a lot of pain, but this was her decision. Like your Mom she has several different health problems. If your Mom has the will to live she can live a full life on a peg tube. BUT it is far from an easy life. I wish you good luck. If you have any problems, please let me know. I may be able to give you some tips thru experience. What ever decision you have made, know that it is the right one for Mom and you and don't give up. The end of life can be harsh, don't ever let it get you down. There is always a way if there is a will.

You did right.
She wants to live, that is the key.
Despite her medical history, she can
Enjoy life.

"if they don't give up neither do we".

Did anyone mention a ng feeding
Tube using a kangaroo pump ?

While not as pretty, do not require surgery.

I wish you luck.

Input never hurts, but wouldn't it be best to consult a geriatric specialist for something so serious as this?! Discussing attitudes and behaviors here is one thing, but medical advice is imperative.
I withdraw my first post because I don't have the right answer. Good Luck:) xo