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My mother in law is 95 and diagnosed with dementia. She will eat for the caregiver, but if we try to feed her she holds the food in her mouth and refuses to swallow for long periods of time. She also refuses to take pills - we've tried adding them to applesauce or yogurt, crushing them into foods . . . but she'll take them for the caregiver. The problem is the caregiver is only there 6 days a week from 11-7, so we need to feed her breakfast, and the days she is off we need to get her to eat. My husband is convinced she wants us to help her die, but since she eats for the caregiver, I think he's wrong. Anyone have a suggestion?

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My Mom eats ok but doesnt drink alot . Its a battle with deyhdration. She loves her chocolate boost though. So we do boost and ice cream shakes . During the day we do fruit smoothies with some small amound of spinach. Im considering doing vanilla boost to it ..Now we mostly use yogart or ice chips. Try finger foods . Mom eats alot of sandwiches that i cut up for her. Its hard for her to chew somethings. Like she will eat ground beef or turkey but not steak . etc ..
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I think she overstepped, too. And the physical therapist suggested letting Mom feed herself more; she had a great day yesterday because she took charge of her own feeding and it seemed to give her the courage to help herself more (which I was kind of wondering if she had some learned helplessness from the caregiver doing too much for her when we weren't around and her expecting it from us ;)! ) Hoping this will be a huge step forward!
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I think sometimes feeding tubes are the default answer suggested whenever there are eating problems but just because it is a medically simple procedure doesn't mean it is the ethically sound one, unfortunately some medical professionals never seem to look beyond their narrow specialty to see the whole patient.
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Cindi, on what did this new therapist base her advice to get a feeding tube? I think she might have exceeded her authority. In my experience that kind of recommendation should come from a doctor or a speech pathologist, not a therapist.

Definitely ask the doctor if a swallow study is indicated.
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No study done that I know of, and this is a new therapist suddenly pushing the idea. I'm thinking she's looking at the easiest solution, not necessarily the best. Mom's dr is one of the few that still makes house calls; I'm thinking the next time he's in, we'll have a talk about this . . . She rarely chokes, but is bad to just hold food in her mouth for long periods of time . . . I'm going to hold off any decisions until we have a little more input from her dr. and the rest of the family.
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Totally agree with CW; my father had a feeding (PEG) tube over a decade ago from having been intubated during a complex medical breakdown. Eventually with speech exercises and speech therapy, he was able to return to normal eating.

The issue was raised again as he began to decline and eating was impaired. We went through the pureed diet with mushy foods and thickened liquids, and he was able to tolerate it. But there was literally no appeal at all to the mushy food. Eating wasn't a pleasure; it was just contributing to life sustainment.

But as swallowing difficulty progressed, the option was either gamble with the continued dysphagia diet, eat at will and just enjoy eating food instead of mush, with the knowledge that this was in an end of life stage and could accelerate decline (and cause aspiration pneumonia). Or get a tube and accept intubation for the rest of his life.

He chose to eat the dysphagia diet; another feeding tube was just not an option at his age.

Veronica, a nurse who posts regularly here, has had a feeding tube for sometime; she usually responds to threads on feeding issues, and she'll offer a different perspective. But she's also still youngish at around 80.

Cindi, if a speech therapist recommends a feeding tube, then either she's making her own recommendation, or there was a videoscopic swallow study done which would be reflected in your MILs records.

Was there, and what did it show? These studies can determine whether frank aspiration is occurring, and the speech pathologist can recommend specific diets.

I had to hire a home care agency in which a speech therapist overstepped her bounds and recommended either a tube or hospice. She refused to discuss speech exercises, as the better speech therapists always did. (The other therapists from this outfit were bad as well; I fired them after 10 days of putting up with their irresponsible attitudes and arrogance.)

Was MIL getting a dysphagia diet before, when she was eating for the therapists? Was she choking and coughing? Face turning reddish? Pouching food in her mouth as she did when you fed her?

I think the first order of business is to determine the results of the study, get the report and discuss it with a doctor (not a PCP) such as a pulmonary or GI doctor. Our pulmonologist was very knowledgeable, but in going through the rounds of trying to figure out which kind of doctor would be a follow-up doctor, a GI doctor was always suggested.
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cwillie - that's kind of what I'm thinking. Quantity of life vs quality of life . . . I know what my wishes would be, but this is something we'll have to talk with her dr more about ;)
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I don't want to offend you but I feel very strongly about this. Feeding tubes are wonderful for those who need temporary help or for people who are otherwise in reasonably good health and can expect to live many years, force feeding a 95 year old with a terminal illness (and make no mistake, ALZ is a terminal illness) is insanity. I've done a lot of reading on this issue - at most you would be adding months to her life at the expense of what little freedom of choice and quality is remaining.
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And now the speech therapist is recommending a feeding tube. I've read some on this and it seems to be a split decision - some feel it is prolonging the inevitable, others feel it's an expected stage. I've recommended we talk with the dr and see if he thinks it's worth putting her through the procedure and what it might gain as far as quality of life . . . Any input?
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Boost tastes better than Ensure. Baby food my sound tasty but is made without any salt or spices so it may be a little bland. If she needs a soft diet it might be better to feed her any "normal" foods that she used to enjoy - soups, stews, mashed potatoes, polenta, well cooked mac & cheese, puddings, custards...
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Actually, she is still in her own home. The caregiver dresses in jeans and comes for 8 hours a day, we're there the rest. After hearing the responses, I'm going to have the caregiver start trying foods she likes instead of insisting she needs "meat and three" . . . and since there are so many baby foods that look way better than they used to, we thought we might try them in regular bowls. I figure since she weighs maybe 80 lbs now (she's always been tiny tiny), baby food is probably going to hit a lot of her nutritional needs. She's not wild about Ensure, but we might try milkshakes, maybe with a little protein powder added in . . . Thanks again, you've given me a lot of ideas!
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Cindi, whenever a parent moves in your household, out comes the adult/child dynamic. Thus, once again Mom-in-law is the adult, and her son [and you] are the children. Thus in Mom's mind, you are the kids, and what do you know :P

Therefore, if the caregiver is dressed in a uniform type garb, your Mom-in-law will see that caregiver like a nurse, as cwillie had mentioned above. Wonder if dressing like the caregiver does would help?

Does Mom-in-law indicate what foods she likes? I believe once a person had reached 95, if they want ice cream for breakfast you ask that person "one scoop or two". My own Mom was a fussy eater but oh how she loved pie, cake, muffins, cupcakes, ice cream, etc. As we age, we do tend to lose our sense of taste except for sugary foods.
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Thank all of you! You've pretty much confirmed a lot of what I have thought - small meals, food she wants even if it doesn't "fit" the schedule, and that she might just feel she can balk with us because we're family!
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It could be that she takes food from the caregiver in the same way that she would accept treatment from a doctor or nurse, since she knows you she doesn't feel the pressure to be polite or to accept something she really doesn't want. Perhaps she would do better with less structured meals and with many small snacks offered often instead, it is the calorie count over the entire day that matters.

I know that for myself and my mom I feel that insisting on eating is a real moral struggle - it is one of the few things they still have any control over and cajoling, bullying or tricking someone who is nearing the end of life to eat may not really be a kindness.
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My 95 year old mother (stage 6 Alzheimer's) did the same thing when she lived with us. She wouldn't eat more than a couple bites for us too but she eats well at the Memory Care facility--sometimes eating a second plate of food.

They don't bother her too much and she seems to get the food in. When she was here, I watched her closely and when she stopped, I tried to fill in by feeding her.

Maybe that's the answer...let her pick at what she can at the table or her room alone.
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