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 Food Supplements (like Ensure, Boost) and Extending Life 
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Food Supplements (like Ensure, Boost) and Extending Life
The food cart at my LO's ALF has many glasses of a milkshake supplement, probably Ensure or Boost. I have known one lady in her 90's who lived for years soley on these supplements. When a LO is declining with weight loss and advanced dementia, I'm interested in people's opinions on the ethics of offering these supplements. Would you push your LOs to drink them or offer them as a choice? Should we ask the CG's not to offer them or put orders in place to not offer them, since the CGs follow their own ethics? Would you ask your LO if they wanted to drink these supplements, explaining to them that it would extend their lives? Would you give them the supplement as a comfort measure? I'm told that they are delicious. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Oct 21, 2011 11:48 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Annie, I think that I would let Coy eat as long as he is able to and wants to. That would include anything he wants -- soup, milkshakes, supplements. In a hospice situation I would not force him to eat, but I would not withhold food. (I think. Who knows until we are faced with it?) No feeding tube, but anything by mouth.

Right now he is losing weight and has a small appetite. There are no other end-stage conditions. I would like to see him regain some of the loss. I am offering Boost as a supplement to (not a substitute for) his small meals. If his appetite comes back I'll drop the Boost. I think real food is better.

I don't think that Ensure, etc. extends life any more than the equivalent in food calories and nutrients would. It is just easy to swallow and concentrated.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Oct 21, 2011 1:51 pm
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Joined: Tue Oct 04, 2011 8:44 am
Posts: 6
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
It is difficult to say what one would do in a given circumstance. Having said that, as a retired nurse, my personal feeling would be that I was withholding sustenance, which would conflict with my teachings . However, I also feel it is a question of also prolonging suffering. Which puts it back to each case is different. My LO is also a diabetic and when his blood sugar takes a drastic dip I give him Glucerna, which equals 1/2 of a diabetic meal. By letting his blood sugar drop too low would not be either ethically or medically the thing to do.

It is never an easy decision, and still one that must be tailored to the individual need and circumstance.

Good luck in whichever decision you reach.

Mary


Fri Oct 21, 2011 5:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
The ALF insisted my dad have Ensure for about the last 6 mo. of his life. I think it helped prolong his suffering but it is hard to say. He'd lost over 135 lb. by the time he died, and we don't know exactly what caused his death, but my guess is it may have given him an extra few weeks. Who knows? If it were up to me I would have let nature take its course and hope that his suffering ended much sooner than it did. Poor man was like a skeleton in excruciating pain. It would have been much more humane to have let him go when he stopped eating on his own.

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 21, 2011 7:04 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Annie, I'd say Frank is in the final stage, I offer anything I think he'll eat and always offer the instant breakfast at all meals. There are meals when he won't eat or drink anything other times he does ok. I assume there will come the time when he will refuse all food and drink but until then I think the suppliments also help to keep their skin healthy. I do everything I can to keep him from getting sores and a good diet, at any stage, might help. Good Luck.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Oct 21, 2011 7:35 pm
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Joined: Mon Nov 01, 2010 2:50 pm
Posts: 15
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
How do you he is in the final stages, what is he like, sorry if this is an odd question...just that I have come to believe my mom is near the end and I just am not sure...she seems so frail and just wants to sleep all the time. My Dad insists on getting her up to watch tv, I don't believe she really understands what she's watching, she barely comments on any of it. I think she can't understand what's going on. She doesn't want to eat meat so much anymore. She really does not drink enough at all.


Fri Oct 21, 2011 9:35 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Tara,

There is a video from a hospice nurse on youtube called " Gone From My Sight". The presentation talks about the months, weeks, days, and hours before death from the perspective of a nurse who has seen it many times. It is long - 1.5 hours - but it is worth the time. I'm attempting to post the link here: http://www.youtube.com/watch?v=PPx-qpos57g. If this doesn't work, go to youtube and search on the name of the video. I can't take credit for this; someone posted the link recently. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Oct 21, 2011 10:40 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Tara, If the question was for me, I'm only guessing Frank is in the final stage because he no longer talks or communicates in any way. He can't walk or stand, as if his legs don't belong to him. He is incontinent with urine and because he just stares when I ask if he has to have a BM, I don't know so with many transfers to the commode, with no luck, he ends up having a BM while he's in bed. Eating is hit or miss, he'll refuse a couple meals in a row and then eat the next. He only get in his recliner if I have the CNA help me in the morning, BUT that's only if I know someone will be coming by within a few hours to help me get him back to bed so I can get him dry. The one negative is he is very healthy, phsically, so if this is the final stage, it might be for months or years. It's a real crap shoot.

Annie, I sent for the booklet, " Gone from my sight" and also watched the video, which was so much more informative. I've pulled it out several times but we also have Hospice, extra eyes to watch what's going on.

Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Oct 22, 2011 7:49 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 726
Location: LA
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Gerry, Mr B's vital signs were good and he ate right up until the pneumonia then he was gone within a week. He was strong. I have video of him replying a small Whip-o-will whistle to our doggie yapping with each one answering the other during his last month. Back and forth for about five minutes. Such a treasure. "We know not when..."

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Sat Oct 22, 2011 1:09 pm
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Until my husband got the pneumonia, his vital signs were all good. He had lost lots of weight over the course of the illness, and was just becoming indifferent to food, so was losing even more. Before that, he wanted to eat although he needed help in doing so. I would encourage him to eat, but never asked that he do so if he didn't want to. He slept his final week due to morphine, but did at least once wake up and drink some milkshake. The weight loss had debilitated him in spite of the good vital signs.

With nutrition as with sleeping, I think we apply our normalcy bias--our LOs aren't normal, won't ever be, so the rules don't apply. If you think about the purpose of nutrition, it is to maintain and repair our bodies. When the body starts to shut down, it doesn't need further nutrition. Is fighting it all that much different than a feeding tube?

That was/is my take and I acted on it with my husband and would want the same for myself. Had he not contracted the pneumonia for an easy out, I don't know how awful it might have played out.


Sat Oct 22, 2011 1:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Gail, I think you've made some excellent points.
Hospice guidelines tell us that people greatly cut down on nutritional intake and then may stop it altogether as they approach the end. The body does not need, and in fact, it is hard for the body to process foods and meds, thus hospice is not for forcing these things on people in the final stage. To me, trying to get someone to eat or drink when they are no longer interested would be, philosophically, like putting in a feeding tube, a very invasive procedure I would never have consented to for my dad. His mind and body were shutting down. What WOULD be the point of prolonging an agonizing "life"?
A friend whose 63 year old dad died a few weeks ago (had been dx'd with LBD several years ago after having pretty severe cognitive symptoms since his early 50's) had been physically very healthy until about a week or so before he died. My friend's mom was wrestling with the nutritional supplement question for a while. Although the man was physically healthy, he spent his final 4 months in and out of the hospital because he was so violently out of his mind, they could not keep him in any of the dementia facilities. He had to be sedated and kept in the hospital to keep him from injuring himself and others. I know that my friend and her mom were NOT supportive of nutritional supplements when he became uninterested in food, even though he was only 63 and physically healthy. My friend told me her dad would never have wanted to have anything to prolong his life, such as it was. Suddenly his physical health deteriorated, he was moved to a hospice facility, and died a few days later.

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Oct 22, 2011 3:52 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
I offer Frank food and drink and find it so difficult to figure out if he just isn't getting the message to "open" or would rather not eat. It use to take him a long time to process what was said so I'm not sure if that is the problem at this point. The last two days I've had to scoop the food out of his mouth at breakfast and lunch, supper he ate a small portion, but ate without a problem. This is the hardest part of this disease. As our LO's constantly have "new Normals" I constantly have "new ???". I'm OK if this is his way of shuting down, but don't want to assume he no longer wants any food. Today, life stinks!!!

Gerry :cry:

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Oct 22, 2011 7:06 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Food Supplements (like Ensure, Boost) and Extending Life
Annie's question mentions supplemental shakes available on the food cart in ALF. I would guess (although I'm not certain) that these are not specially intended for people in the end stage of their lives.

Once the body begins shutting down, I think we are faced with a different reality and have to make decisions in that context. I certainly wouldn't force food or any nurishment in that situation. But I would probably give food if it were requested. I sat in the hospital room and fed my father ice cream with a little wooden spoon from a dixie cup the day before he died, and reminisced about the time he took me to the state fair and bought me ice cream for breakfast. His body did not need that ice cream, but I think it did us both a lot of good on another level.

I'm with Gail. I think that forcing food is much like using a feeding tube, and the same factors that go into that decision apply to forcing food supplements. That is a very personal decision, but often it is one that the loved one has provided some guidance on, if there is a healthcare directive.

But supplements on the ALF's food cart, or in my refrigerator, don't evoke the same reaction in me. The first 3 ingredients in the Boost I'm giving Coy now are water, corn syrup, and sugar. I'm not pretending this is a wonder health food. It is just a pleasant and temporary way to get a lot of calories in while he is recovering from being sick and has a diminished appetite. I don't know how much longer he will live, but he is not in the final stage. I'd like him to not lose so much weight that it will make it harder on him for whatever time he has left.

One night I went out for a carry-out sandwich for myself and I asked Coy what he wanted. Nothing. I bought him a deluxe milk shake and stirred an instant breakfast packet into it. He ate the whole thing. Not as nutritous as my swordfish sandwhich with lettuce and tomato, but at least it was some calories to keep him going.

I think the question of using supplements might have different answers depending on whether the body is shutting down. And in either case, it is a highly personal decision to which there are no wrong answers.

Gerry, my heart goes out to you. Frank can no longer give you clear answers and it is not certain whether his body is shutting down, yet you have to make multiple decisions per day about feeding him. Hugs to you, dear lady!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Oct 22, 2011 7:26 pm
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