How can we get my mom to eat?

September 20, 2013 3:20 PM

My mom had a stomach tube placed before radiation for throat cancer, because she had previously lost 20 pounds (she's 4'10", so that's a lot to lose) after surgery for the same cancer. She's now a month out of radiation, eating very very little (like 2 bites a meal) and getting most calories from feed tube. She had relatively mild dementia before all this; it's now progressed to pretty severe short term memory loss, though she is still on pain meds (vicodan) which could be skewing things. She is in skilled nursing but medicare will no longer cover and the recommendation is for a long term nursing home placement.

The hard part is, because of the dementia, she doesn't get what's going on at all. She knows she's in a nursing home and hates it, but doesn't recall whether she has eaten, how much she has eaten, how much or often she's getting fed thru the tube, or even that a big part of (possibly) going home is that she needs to eat. When we decreased the tube feeds to try to stimulate appetite, she lost three pounds in a week, dropping to 84.5. She's stubborn and pissed off and really scared and wants nothing to do with her daughter telling her to eat. She does slightly better for caretakers and nurses but not much better. She is getting Remeral to stimulate appetite and is still complaining regularly of pain in her throat from the radiation, hence the pain meds. She is working with speech therapists on swallowing function and eating in her facility.

Has anyone dealt with this kind of situation, and do you have any suggestions about how we might get her eating again and out of the stomach tube feeding loop? Are there doctors or specialists in this area (elder medicine? I'm not even sure) that may help? or will this just take time and patience?

posted by Cocodrillo to Health & Fitness (18 answers total)

I'm not sure I understand why you want her to eat instead of getting nutrition through a tube? Perhaps you can tell us more about that.
If her dementia is progressive it would not be unusual for her stop eating, its one way our bodies prepare for a peacefol death. I'm sorry you are going through this difficult situation. There are geriatric care physicians who you could talk with. For throat pain have they tried viscous lidocaine? Its a thick liquid that coats the throat.
posted by SyraCarol at 3:43 PM on September 20, 2013 [4 favorites]

If she's only having a few bites of any food, you have to aim for super high-calorie foods to maximize the energy she gets from those bites. Stuff with lots of fat and protein, like peanut butter, or full-fat pudding, might be good. That said, if she's having pain and difficulty with swallowing, it seems unlikely that she's going to be able to get enough nutrition orally. If she doesn't enjoy eating, is there a reason that getting off the feeding tube is really important?

I am sad to bring this up, but if she "doesn't know what's going on at all," is "pissed off and really scared," hates being in a nursing home, and is in pain that they're having trouble controlling... Perhaps it's time to focus more on making her comfortable instead of just trying to prolong her life. For me at least, quality is more important than quantity of days towards the end. I'm sorry that you and she are having to deal with this difficult situation.
posted by vytae at 3:57 PM on September 20, 2013 [4 favorites]

Could you articulate your goals here a little more fully?

For example, if she has progressive dementia, the long term nursing home placement, if it is a placement equipped for dementia patients, is actually a good thing unless you have a family, carer, financial and insurance plan to deal with her care needs at home.

Is that not the situation and you want her to be able to go home?

But yeah: a geriatric care physician will be able to give you both a reasonable assessment of her potential outcomes and advise you.
posted by DarlingBri at 4:01 PM on September 20, 2013

Response by poster: Thanks all. She is getting the lidocaine swish and swallow and it helps some. I'd like her to eat because that seems to be the best way for her to get home at least for a while, which she really wants to do and which would be impossible with tube feeds happening every 3-4 hours. But the dementia is a factor there also, as people are saying.
posted by Cocodrillo at 4:05 PM on September 20, 2013

I think you need to talk to a social worker; ask at the nursing facility of they can help you access one. I say this because the last time I dealt with a similar situation, it was almost impossible to get a patient from home into a long term nursing facility but comparatively easy (ha) to go from a nursing facility to a long term care home. That's because patients who cannot go home are prioritised.

So basically, you need to understand the system at work here and you need to be cautious not to cut your nose off to spite your face here; you really don't want to be in a position where everyone moved heaven and Earth to get her home and she's there for two months and then desperately needs long term care but has lost her transfer eligibility.

I'm sorry, it just plain sucks.
posted by DarlingBri at 4:14 PM on September 20, 2013 [5 favorites]

Are you sure there's no way for her to go home if she's still using the feeding tube? Obviously there are tons of individual medical (and non-medical) factors that vary from person to person that would affect if it's feasible, but there's definitely such a thing as tube feeding ("enteral nutrition") from home in some cases, either with home health care or a family caregiver can learn to do it. Some resources here: http://www.nutritioncare.org/Information_for_Patients/Information_for_Patients
posted by EmilyClimbs at 4:25 PM on September 20, 2013

Home tube feeding is absolutely an option. A social worker would be a good resource to start with, they are usually the ones who are best at coordinating home care needs. Beyond that, strangers on AskMeFi are not qualified to advise how to feed your mother -- we're not even very good at diet questions for healthy human beings, let alone someone with such specific and uncommon issues. Best of luck.
posted by telegraph at 4:36 PM on September 20, 2013

While not a direct answer to your question, I know someone who had oral cancer and the radiation treatment somehow ruined his ability to swallow. His only source of nutrition is via feeding tube and he has lived this way for about ten years. I guess my point is that you might want to check with doctors and therapists to see if this is a realistic goal, if you haven't already.
posted by tamitang at 4:45 PM on September 20, 2013

I know several people who are tube-fed at home, adults and children, and am a caregiver to a tube-fed person myself. Tube feeding keeping your mother in the hospital is a red herring.

Ask her team what exactly are the criteria for discharge, and push back on tube feeding being the issue. It sounds to me like it's not the tube feeding per se, but the fact that she can't remember when, whether, or what she's eaten and that will be a problem at home regardless of whether it's orally or by tube.

I'm sorry for your struggles - eating issues are very difficult. From my experience, time is just about the only solution, and some people simply do not graduate from a tube.
posted by peanut_mcgillicuty at 5:25 PM on September 20, 2013 [1 favorite]

In consideration of how to encourage her appetite, it may be helpful to give her more of her daily tube feed overnight, so her stomach is emptier for daytime 'meals'. I agree with other comments that tube feeds, whether they are 'once in a while' or even continous (or even on a pump in backpack) really shouldn't be the deciding factor about whether your mom can come home. I would really suggest having a look over at www.oley.org which has a fantastic amount of information about managing home tube feeds and the feeding tubes. Best of luck with your situation.
posted by Northbysomewhatcrazy at 6:13 PM on September 20, 2013

What about changing the pain meds? Narcotic pain meds commonly cause constipation, which could be yet another reason she is not eating. She may be backed up.


You could be trained to administer the feeding tube. I am involved with an organization that helps kids with many physical disabilities where they may need a feeding tube. Parents are trained as to what to do to help their children.
posted by Jewel98 at 6:32 PM on September 20, 2013

My Mom had esophageal cancer, and the radiation ruined her sense of taste and damaged her salivary glands. What helped was very frequent small offerings of comfort food - half a piece of cinnamon toast, a tiny bowl of mac-n-cheese, a scoop of mashed potatoes with gravy. Familiar foods with pleasing texture. When I stayed with her, I spent a lot of time cooking, bringing her food every hour or hour and a half. I also made tea, and would bring her small cups of tea with milk and sugar to keep her mouth moist. or hot chocolate.
posted by theora55 at 7:35 PM on September 20, 2013 [2 favorites]

I just wanted to comment regarding the dementia aspect - I have worked in home care and asking to go home was pretty common, even when the person was living in the house where they'd been for decades. I know you want to give your mom what she wants, and I say this, too, as someone who has seen both parents develop dementia, but please don't make a decision based on her statements if the dementia is severe.

I know how difficult this stuff is, and I'm very sorry you're going through it.
posted by camyram at 8:30 PM on September 20, 2013 [5 favorites]

I highly recommend a palliative care specialist as your best bet, even better than a geriatrician, although a geriatrician would be all right too if you can get one. The palliative care specialist will be able to help advise you not only on the feeding issue but also on other end of life care issues such as pain management.

I would also point out that if you are your mother's healthcare decisionmaker and you believe that she does not want to be fed by tube feeds and that she just wants to go home, you have every right to end the tube feeds and take her home and let her eat whatever she is able to eat without the tube feeds, for however long that lasts.

Remember that her healthcare team is likely to keep making recommendations to prolong her life in any way possible until you tell them otherwise, regardless of what that means for her happiness and her quality of life.
posted by treehorn+bunny at 9:47 PM on September 20, 2013 [5 favorites]

Can you chat to the speech therapist? If they're a specialist they may have a better idea how much of the difficulty eating enough is due to pain, how much is due to a poor swallow due to the effects of the radiation/surgery, how much might be to do with the dementia affecting her swallow (which is very common) and how much is to do with confusion and general loss of appetite. They may also be able to give you a more realistic idea of the capacity for improvement.

We can and do train people to manage their own feeding tubes at home, but that can only happen if the person is cognitively able to manage their own feeds (and it sounds like your mum isn't) or they are living with someone who can sort it out for them.

I'm sure I read some research recently about ice cream as a nutritional supplement for people with head and neck cancer - it's good because it's easy to eat for most people and the cold dulls the pain. Of course it's also very high calorie.

From what you say I'm not entirely sure where she is living at the moment. If you can, sometimes in dementia eating is better if you very clearly signal that it's mealtime - setting a table, eating with other people, making sure she can smell the meal before you serve it and generally signalling that now is eating time. I've had patients who were able to eat much more once they were able to be involved in cooking and serving the meal.

Things like this can change. There are lots of sensible and caring comments above about quality of life and only you and your mum can judge how much they would apply. But your mum has just been through a horrific experience that would distress and traumatise anyone, and she's doing it without the thinking skills to apply the rationalisation and coping skills that she might have done at other points in her life. Things may improve once she's settled in a less medical environment, even if that's not home. I work with lots of people (not with throat cancer) who end up going home or into a care home with a feeding tube, and many of them get removed within 6 months.

Good luck.
posted by kadia_a at 1:09 AM on September 21, 2013 [2 favorites]

I've been through similar situations personally, with two relatives. For both, what worked was cooking food they remembered from childhood - some of it food they wouldn't touch before the dementia set in. They had it in very small portions many times a day, and most of it was soft or liquid. However, this was extremely time consuming, not only the cooking, but also the research; I had to figure out what would have been on the table in the twenties, and then next time round, in the forties. Other familiy-members took care of other problems - which made it possible. Do you have the time, or can you afford the help to do this?
A nursing-home for demented people near my home uses old-time food as a form of therapy. The elderly sit in purpose-built kitchens and enjoy watching, and tasting and smelling the cooking process. This serves more than one purpose - they eat more, and can avoid the tubes, but they are also more calm, less angry and scared, and thus need less medication.
posted by mumimor at 5:12 AM on September 21, 2013 [2 favorites]

I know someone who went through a time of severely reduced appetite/ability to swallow, and one of the things that always worked for him was (small portions of) a nutrition drink like Boost or Ensure mixed into a thick slurry with ice cream - basically a milkshake. I'll also second what people said above about small portions of plain foods from childhood being good, and not to worry about monotony - for the person I know, having the same thing over and over was not a problem, and any effort to "spice things up" or change things around were met with "don't change it, I like it, it's working for me".
posted by LobsterMitten at 8:08 AM on September 21, 2013

Does she complain about pain despite her current meds? Do you think she doesn't eat because of nausea / lack of appetite or because of throat pain? Pain medication affects everyone differently, but often times it can actually stimulate appetite somewhat if nausea is appropriately controlled.

Again, everyone has different tolerances to these medications but vicoden is on the weak end of the spectrum when it comes to pain meds, especially long term and for something like cancer. I received stonger pain medication when I had my wisdom teeth extracted and had no prior drug tolerance.
posted by WhitenoisE at 10:06 AM on September 21, 2013