I need some advice. My mother is 87 years old...has some dementia at times...has had quad-drouple bypass....stents...and a pace maker. Up until Feb 20th...she could do everything for herself...eat anything she wanted....didn't have any problems at all. (She lives with me). My sister exposed her to the flu...two days later I had to put her in the hospital....this was Feb 20th. While in the hospital...she developed C Diff. She has been on antibiotics since...couldn't get over it until this last week. During this time...she lost her appetite...nothing tasted good to her anymore. She has lost about 15 to 20 lbs in the past 2 1/2 months. She can't walk or even stand up any more...she is so weak. If she eats 2 spoons of food a day the last couple of weeks...that's a lot. She is literally starving to death. I feel if I can get some nutrition into her...she will overcome this. I've tried ensure...boost...she won't drink them. I have made arrangements to have a peg tube inserted this coming Monday. Am I doing the right thing? I feel it is the only chance she has. She says she doesn't want to die....I've begged her to eat and her reply is that she is eating...but she's not. Has anyone else experienced this with their parent?
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.
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.
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.
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!
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.
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.
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.
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!!!!
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.
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
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.
I think too often today people only associate feeding tubes with living wills or directives and therefore think the issue of feeding tubes is an "end of life" decision...or if put in place, a useless "prolonging of life". Before feeding tubes got linked with the living will/directive world, they were developed and used as a treatment. Tubes can and are often recommended and used today not to extend ones life longer than need be, but to possibly help the person get over a mallady that the patient may very well not have control over. (such as dementia related issues) If given nourishment via a tube they may build their strength and progress to a normal life, quite possibly help them recover from the medical issue and return to what their life was previously.
Since so many people can not separate feeding tubes from living wills & end-of-life directives lets look at the premise at which those documents begin. 'You have been told by a medical professional that there is no hope for recovery/cure from an injury or illness'. IMO...if a doctor or doctors have said there's no hope, and/or if the patient has poor quality of living (a chore/struggle to live each day), and/or the patient says they want to go...then I don't think a feeding tube should be put in place. That would be prolonging life. But, if those things are not part of the circumstances, I don't think a feeding tube should be eliminated from consideration. Especially if recommended as treatment to help someone recover from an illness or injury.
Angelscare, who raised this topic and asked the initial question about feeding tubes...has not stated that her mother wants to die. Nor has she said that her mother is at death's door due to any illness. Her mother's biggest issue is lack of nourishment, which can be fatal if it goes on too long. While I was concerned about the risk of the actual procedure...I'm sure she and the doctors discussed it and must not have been overly concerned about her making it thru the procedure, or I think Angelscare would have mentioned that concern. She didn't. And as Angelscare's latest post explains, her mother's feeding tube was inserted this past Monday. The mother got through the procedure fine and is handling it fine...matter of act...sounds as though the mother is doing great: "...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!!!)." Now that the mother is eating she will hopefully build-up her strength and be able to stand and sit again and lead a routine and normal life...continue living happily it sounds...for who knows how long. The mother didn't know why her appetite waned. Sometimes she thought she had eaten...when actually she had not. Symptoms of dementia. Now with this help from her daughter and receiving nourishment, let nature takes its course. And let Angelscare have some peace of mind.
Good for you Angelscare!. I KNOW you did the right thing. You gave your mother a chance, instead of letting her wither away. You provided help and guidance for your mother when, due to her dementia, needed someone to take the lead and help her. I wish you and your mother many happy and fulfilling days ahead!
FYI...my mother, with early dementia and no catastrophic, life threatening illnesses, died two years ago. She, as with your mother, started eating less and less and then practically nothing. The food didn't taste good...she wasn't hungry...or she thought she had already eaten. This went on for several weeks. During her final two weeks, when she might have eaten a couple teaspoons of food a day,,she lost 20 pounds. Two days before she died, she was talking to me about having a big family dinner for Easter. Asking If I would help. She wasn't planning on dying. She was planning events with her grandchildren. Looking forward to spring's arrival. She didn't want to die. She had always been a strong woman. As long as I had been her daughter, rarely had I seen her ill, even with a cold or a headache. Nothing would keep her down. A fighter, who had gotten physically weak from a lack of nourishment, but her mind was still quite sharp. The last 24 hours of her life started as restless, then turned painful as her organs started shutting down. For comfort, Morphine was given, which knocked her out. And then...everything stopped.
Her death certificate said she died of "complications associated with dementia". She starved to death!!! That sounds so cold and heartless...evidently too crude to put on the death certificate...but it's reality. Three months later I found out that a feeding tube had been recommended by doctors but, unbeknownst to me, it had been denied by two members of my family who are emphatically opposed to the use of feeding tubes...period. I truly believe my mother did not have to die when she did. It was much more important for these selfish people to have their beliefs and misunderstandings honored than to help my mother with something she couldn't do for herself. If the roles were reversed...she would've moved mountains to help them in their time of need.
Feeding tubes are not the answer in some cases.Feeding tubes can be of assistance in some cases. IMO they are an option that should be weighed and considered for the circumstances...and not blindly and stubbornly eliminated from consideration.
I know that you're strapped for cash. But the best way to guaranty that you have permanent control over mom is ..Guardianship via the court. Your mom's doctor will need to fill out a certificate about your mom's dementia and is no longer able to care for herself. You need to hire a lawyer and go thru the court. By doing this, your siblings cannot change guardianship. Just a thought since I've seen over and over on this site how one sibling was able to get a New POA over the hardworking, caring sibling/caregiver. It would be worth it to get the guardianship if you can.
Sometimes no longer eating is a person's only control over their own existence and since every creature on this planet literally eats to live and lives to eat...it is a consideration that often this is a clue they are ready to go.
Then there is the flip side as we see here...Angelcare's mom might very well be able to get the PEG properly removed (ie by a doctor and not a confused mind's directive to an obedient aging hand) and go on for many years eating on her own.
PEG tubes aren't meant to be long-term solutions but they can easily turn into that. And then you have to petition the courts (perhaps) to remove it because it has become 'life support.'
It is a case-by-case decision and unique just as everything else that is 'individual' is. That's why living wills are so important. Eliminating indecision, worry, and hopefully guilt and regret.
Good luck Angelscare...both with your mom's care and your relationship (and hers) with your sisters.
Check with your state laws and then check with a physician.