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Old 12-14-2009, 11:54 AM   #1
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Mother in law, late stage dementia; tube feeding

Hi Everyone!
I thank the Lord for this opportunity to have a place to express myself regarding this matter. The doctor has told us that my mother in law is in the advanced stage of dementia. She cannot swallow or chew food. A feeding tube has been inserted. This came about after a trip to the hospital about 3 wks ago to treat a UTI and sepsis. One of my husband's sisters is the legal guardian. The doc asked us to think about how long we want to keep the tube in, her quality of life, etc. If the tube is removed, the staff thinks she could live for about a week. Our mom, cannot speak, just whisper yes barely. She has gained weight and looks good, even stayed up for 4 hrs one day this weekend. So the sister who is the legal guardian says ok, let's leave the tube in Mom is recovering, but we are like, how does one recover from a terminal disease? When we went to the last Care plan meeting, this same sister said she is not ready to bury her mom. She cannot communicate if she is in pain other than yelling and if you look at her eyes. There is no standing order for pain meds because they will lower her respiration. My husband and another brother think the tube should be removed. Anyone with any experience with this?

 
Old 12-14-2009, 12:24 PM   #2
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Re: Mother in law, late stage dementia; tube feeding

Oh my dear, you've come to the right place

My mother's instructions were no feeding tube. She had dementia. While she had it for 15 years and last 4 were bad, the last few months were pure hell

My cousin's husband also was diagnosed with it but it was found in the mid- to late stage. He only lasted 2 years. My cousin was offered a feeding tube for him and she refused. (quality of life)

Your sister in law is in pain herself. Its hard to know that whatever decision she makes is one that would end her mother's life or prolong the agony so go easy on her even though it will cause you all to shake your heads and be a little angry.

My sister went through the same thing. She spoke to our priest on 4 different occasions. His reply was she needed to search her heart and know if she was going to go against Mom's living will/medical directive.

Did your Mother-in-law have one? a medical directive that is? If so, then no matter what this daughter decides, that would dicatate.

The feeding tube will keep the body alive as long as it continues to accept the nutrients but this too will stop at some point. No matter what, this lady is destined to die.

You can request pain reliever by calling in hospice. In fact, hospice can help this daughter make the difficult decision. The feeding tube isn't helping the mother-in-law, its helping the daughter put off what is the most critical decision she'll ever made and no mater what decision it is, she'll be haunted by it.

In some states, once a tube is put in, it would take a court order to have it taken out but I guess it won't apply if this daughter has a document that instructs her to act as mom's advocate. But I would chose to see the document. My Mom's clearly said -- at the point where I am incapable to caring for myself, I want nothing done to prolong life or delay death.

That made our decision easy for removing the IV and not allowing insertion of a feeding tube. it took the body that was once my mother --4 weeks to shut down but my sister and I was able to do it since we knew my mother was gone so very long ago.

My prayers are with you. PS I also don't advocate being there while it is actually happening. Some people can, some people can't. We couldn't. It was a blessing when it happened in the middle of the night and we got a phone call that they found her gone while on their rounds.

CaringSister54

 
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Old 12-14-2009, 02:29 PM   #3
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Re: Mother in law, late stage dementia; tube feeding

Hello and Welcome,

First let me tell you that no one is ready to bury their Mother. I understand how your sister feels.

I can only give you advice by telling you what happened to our family and our Grandma and our Mom. Gram was 97, with advanced Alz. and could no longer swallow or speak, see or understand sounds. Most importantly she could not tell us if she was in pain. No communication at all. She only cried and called for her Mother. We called in Hospice and kept her at home. She was loved and cared for and given pain medication until she passed away a few days later. We chose no feeding tubes or life support. She had stated many times she did not want this to happen to her. We carried out her wishes.

Our Mother was given the same care by her children. Mom had her wishes written and witnessed years before. All of her children knew that she did not want a feeding tube. When Mom's dementia was advanced, she could no longer swallow, we brought her here and called Hospice for her. She was loved and cared for very much. I was not ready to let go of my Mom either but it wasn't about me it was about my Mother's wishes and her quality of life, which by this time was nothing. Mom passed here with her family around her exactly as she had requested.

I wish you luck with your sister. My Mom knew that her other daughters could not follow her written instructions so she gave them to me. ("Thanks Mom") This is a very hard thing to do when you love them but it was simply Mom's time and I had to let her go. She was suffering and I loved her so very much.

Maybe if your sister is given some more time she will listen to your wishes. Its much easier when the tube is never put in at all. I'm not sure about the laws here but I would think if the entire family and the Drs. agree it can be removed. Very hard thing to do...........

My best to you,
Chris

 
Old 12-14-2009, 02:37 PM   #4
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Re: Mother in law, late stage dementia; tube feeding

I am so sorry your MIL is in that awful conditon. It also happened to my Mom, who died just 2 years ago later this month.

Fortunately for her, my Mom had already signed a "do not resuscitate order" many years before she got Dementia. So we knew it was not her will to be kept alive with a feeding tube. When her body stopped processing food and she began to lose weight, the hospice nurses did not force or tube feed her, but allowed nature to take its course. She died peacefully. I have signed that order myself and both my daughter and my doctor have copies of it. Under no circumstances would I want an irritating tube in my throat unless it was going to make me WELL again, which it won't in a case like this.

Let her go. She has suffered enough.

Best wishes and prayers,

Martha

 
Old 12-14-2009, 02:42 PM   #5
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Re: Mother in law, late stage dementia; tube feeding

My dear MIL was in the mid-stages of Alzheimers when she suffered a massive stroke in March of 2007. They didn't think she'd make it through the night, but when she did and then began to improve (SLIGHTLY) the medical team suggested an NG tube and then a G-tube was placed before she was discharged to rehab, which turned into a permanent NH placement because she had no further recovery. She spoke a tiny bit in the beginning, but none at all now, and we used to be able to tell that she recognized us, but not now because I know the Alzheimers is also progressing underneath the devastating aftermath of the stroke. Before the stroke she could walk, talk and feed herself, if you were there to prompt her ... I was taking care of her personal needs and dressing her and I could tell the Aricept was no longer working and the decline was moving along more quickly, but she was no where needing a feeding tube due to the AD, so my husband consented. She has a DNR, but it did not address the feeding tube specifically, just no to a vent/excessive CPR ... we had agreed we would never go with a feeding tube if the AD had progressed to the point where she could not longer chew or swallow, but I understood my husband's anguish that if he said no to the feeding tube, what if she COULD have made more of a recovery and had a better quality of life. But she didn't, and now it just breaks my heart to see her because she never would have wanted this. And now my dear husband will ultimately have to decide it's time to tell them to stop using the feeding tube, but he's not there yet. He knows I will support his decision and our pastor has counseled him to do what he feels is best for his mother. So I think if you're just dealing with the AD, I would never want a feeding tube for myself or a loved one. It just delays the inevitable, and since they can't tell us if they're in pain, it might be caused them pain, fear, anxiety ... when they can't chew or swallow, that's typically when Hospice can come in and help the family with the final stages of this horrible disease.
God Bless you and your family ... I hope you find some peace for your loved one and yourselves.
Shell

 
Old 12-14-2009, 02:59 PM   #6
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Re: Mother in law, late stage dementia; tube feeding

As the others here, my mum stopped wanting to eat, began to sleep virtually all day and eventually slipped away in her sleep. ALZ is a terrible disease and I personally would not have wanted to prolong my mums lack of quality of life and I know that she would have hated it as she was a strong, independent lady well ahead of her time. However much they are loved there comes a time when, for their sake, you have to let go. Mum's remembrance rose is in full beautiful bloom.in my garden....she is still here.
Ce

 
Old 12-14-2009, 04:25 PM   #7
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Re: Mother in law, late stage dementia; tube feeding

Well, guess I will pipe in - everyone has an opinion, and I am certainly one of them...

NG (feeding) tubes are an option, of course. Liquid nutrition will keep the body functioning for a bit, and in the meantime, the patient will still just lay there, unable to communicate or swallow their own spit, and (Lord, I HOPE this is not true) be aware that there is a tube down their throat.

When daddy stopped eating, I let him stop eating. That meant that I WATCHED my beloved daddy die right here in front of me. I have nightmares now, and am seeing a psychiatrist to deal with it all. BUT. I knew that that is how HE wanted it, no tubes. It took him 5 long horrible days to die with no liquid or nutrition. I can only hope that this was how he wanted it.

But I do know this: I do not want a tube. My advance directives are in the lock box, my daughter has a copy, and I sing it long and strong - NO TUBES.

It did not appear that he was in any distress at all (oh geez. That would have sent me off the edge), just so you know. We had hospice, and he was medicated against pain, and he was here with us, for what that was worth.

I wish you all the blessings in the world, friend. And when Caring said she does not recommend you "be there" when the end comes - she knows of what she speaks. Think it over. The end will come, for each and every one of us. Sooner for some, later for others, but the end will come. And the only advice I can give is to love your mother-in-law as much as you would love your husband or yourself. Do for them as you would want done for you.

And until then - here's a lovely pink towel to wring. Pack it around with you like a "wubby" - you will need some comfort. Come back here often, too. We're always here to help, listen or pray with you.

...lil' deb

 
Old 12-14-2009, 04:32 PM   #8
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Re: Mother in law, late stage dementia; tube feeding

awww shucks deb your words make me cry. You went through so much with daddy being at home. Its a shame even with a husband and child at home, it was still all on you!

But I'm also a little upset -- I want a wubbly! I need a wubbly.

I'm having a depressing time right now. Not decorating, no tree, nothing. I am just going through the motions. I think the reason is that my kids are both _- Gosh to think about it -- they're both

GRADUATING

just like DGabriel's daughter! only hers choice to 'walk' you know cap gown the whole bit my two chose not too. I think the reason is

Their daddy is not here. I'm happy and crying at the same time over the same thing.

Graduating with a degree in education -- another for history -- and a certification in special ed! Daughter is graduating with a Associated degree in education!

But my father, their pop-pop (my buddy) My Mom (ah hem) and my husband (oh Gosh) as well as my fil -- their paw-paw are all watching from heaven.

Oh well Deb. Like I said, I need a wubbly and I need it NOW

Caring

 
Old 12-14-2009, 04:45 PM   #9
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Re: Mother in law, late stage dementia; tube feeding

Here it is Diane, all pink and fuzzy. In your imagination wrap it around you good and tight, and rock yourself back and forth, and pretend it's your lost loved ones who are holding you. Soon you will get up and forge on, as you always do, and continue to be there for others. I congratulate you on your children's achievements whether they go to the ceremonies or not.

Love,

martha

 
Old 12-14-2009, 06:02 PM   #10
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Re: Mother in law, late stage dementia; tube feeding

And, Diane, I am sending my towel to you tonight...I had an almost kinda decent day with my mom, so I can spare my towel tonight for you.
(but I will probably need it back tomorrow)

My dad died a long time ago, one week before CHristmas ..how poopy is that...but I celebrate him and when I put up my tree, the last thing I do when decorating it is throw a handful of tinsel at the tree. My mom was adament about tinsel being hung strand by strand..my dad would wait til she wasn't looking and he would fling some. I would laugh everytime.

I still don't have mine up yet. I almost talked myself into not doing it this year but if not, it would be the first time my kids' special ornaments wouldn't be hung since they were born. So we'll get the tree this week sometime.

Martha, I know your mom also left us near Christmas, right?

Love, Meg

 
Old 12-14-2009, 06:37 PM   #11
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Re: Mother in law, late stage dementia; tube feeding

Thanks so much everyone for your replies. This whole issue is so frustrating. I love my sister in law and do not judge her for trying to hang on to her mother. She went to the hospital this weekend and mom was having a good day. She had been up for 4 hrs that day and my sister in laws email said, Mom's improving! She even took a picture. Yes she looked better since the hospital visit a few weeks ago. Her cheeks were rosy and fat. The nurses reported that she is back to yelling again. That's her way of communicating...communicating what, we are not sure of but she yells a lot and it isn't pleasant at all. A number of the siblings are gathering at our house for Christmas. This will be a first. There will be some discussion about what to do and I'm a bit nervous about that. I don't intend to play a big role: it is their mom. I just want to keep everyone on a "loving level" during the discussion if you know what I mean. I want to be supportive of all of them no matter how they feel however I think they need facts. The doctor says she is in the late stage and we need to think about what the quality of life with the feeding tube and how long we want to keep her on it. We don't have to go to court. There is a "do not resusitate order"; no more hospital visits but nothing in stone about a feeding tube. I feel so frustrated!

 
Old 12-14-2009, 06:38 PM   #12
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Re: Mother in law, late stage dementia; tube feeding

By the way, my mother in law is in a Veterans Nursing Home Facility...she has been for the past 9 years.

 
Old 12-14-2009, 06:43 PM   #13
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Re: Mother in law, late stage dementia; tube feeding

Thank you so much. You message means a lot to me right now.

 
Old 12-14-2009, 08:42 PM   #14
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Re: Mother in law, late stage dementia; tube feeding

CARING!!!

I am sending you 3 wubbies - right now! One is pink. It will make you calm and happy. One is dark blue. That one you can wring, slap stuff with and generally have a tantrum on.

The last one is red and green. Hon, I cannot believe that you have no decorations - no tree - nothing up. I so could not do it either, so my dh did it while I was at work.

But I get it, Caring. The kids' dad, your sweet husband, is not there to kiss you under the mistletoe, to tease the kids, to help with the tree that is never quite straight. I totally get it, my sister-friend. I wish I was closer so I could give you a hug, deliver the red and green towel and have a glass (or 4) of wine with you!

You know what realization hit me this morning? Christmas is one day. Just a day. Like today. The rest of it - the shopping, cooking, baking, cleaning (ugh), all that stuff is stuff we choose to do, for some weird reason. So tomorrow is December 15, yes? So what? It's December 15! Is that any different than August 8? Or July 21? Or February 20? No it's not.

So for those of us grieving this "holiday season" (No, Jesus was not born on December 25 - it was far too cold in Bethlehem at that time - He was probably born in August or September in order for the star to be at that position), let's just be easy on ourselves, ok?

Hold on to your wubbies (I have more if anyone needs one), smile at the Salvation Army bell ringer when you drop a few coins in the pot, and know that in 2 weeks, it will be just another day like this one, and we can take a breath without breaking into tears every 5 minutes.

Yes, our sofa will have one less person on it. One less stocking (daddy's was with the rest of them - I can't bear to throw it away, so I am keeping it), one less plate at the table for dinner.

And I don't know about you, Caring, but I am getting a little tired of being "strong". Damn tired of it, frankly. I think I may go get MY dark blue towel and have a fit of my own.

((((((hugs to you, Caring!))))))

...lil' deb

 
Old 12-14-2009, 11:25 PM   #15
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Re: Mother in law, late stage dementia; tube feeding

I'm home and here is my two cents worth.... I already have directives from Mom and Dad that are specific to feeding tubes and they have opted to have none. We are to do nothing that will prolong their life. Mom was very aware of what would come if she ever developed ALZ because she had to make such choices for her Mother. She and Dad were both crystal clear!!!... NO TUBES! So I will follow their directive. I also agree with their decision so it will be no choice to be made at the time. This is why it should be done before it is needed. It takes the second guessing out of what should be done.

Now, Diane. Yes, my daughter technically graduated in July. At first she said she was not going back and "walk" but a week before the day came she declared that she had "forgotten" but she was going to walk. In 4 days we had it all together and she was ready with all her cords, cap and gown, and announcements. It was a very bitter sweet day for both of us. It was my Mom that encouraged and supported my daughter when her first attempt at college ended in failure. It was Mom that was always there for her. Five years ago when she decided to go back to college Mom was her number one supporter. We both had a tearful moment Saturday because Mom could not be there to see the fruit of her support and encouragement... but it was important to me and my daughter that we be there and she knew as did I that mom was there in spirit. Yes, it is difficult to go forward in life when we are missing those that have gone before us but we don't need to stand still. We need to keep moving forward. Our loved ones would not want us to wither under the weight of their loss. They would want us to celebrate our life and in so doing celebrate theirs as well. So Jenn and I chose to celebrate not only her graduation but the support and encouragement that Mom gave her when she was able.

I'm not one that tends to stand still. Yes, both of my parents have dementia and I could become angry, bitter, sad, or remorseful... but I refuse to waste what time they have left being consumed by negative feelings. I want to enjoy what time I have left with my parents.... and I will. Whether it be by celebrating my daughter's accomplishments, standing in for my parents at a visitation, or being silly with them at a Christmas party. As I told Mom's sister today... I will miss Mom and Dad when they are gone, actually I am missing them NOW, but I am going to make the very best out of what I have been given.

So yes we missed Mom and Dad this weekend. Yes, I spent a few hours with a friend that has terminal cancer and we laughed and joked through three high school annuals. Yes, I spent time with Mom's best friend that just lost her son and we reminisced with tears and laughter but mostly celebrated his life. It was a good weekend. For all the negative... there is always positive to be gained!

Love, deb

 
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