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My husband and I are primary caretakers for his 93 year old grandmother. We had her in an assisted living and were not happy with her care. She has dementia and in the past year she has entered late stages, bowel and urine incontinent, very few “good” days. On those good days she says she is tired and ready to go and “no one should have to live this long, everything hurts” she was very clear prior to her onset that if she got like her brother (who also had dementia) she did not want her life prolonged. Other than the dementia, anxiety (probably depression), limited mobility, very poor eyesight she doesn’t have any serious medical conditions. She has started to refuse food and we are torn on how to handle this. If we coax her she will eat, she will follow basically any directive we give her but it’s a bite by bite instruction and she repeats she is not hungry and not interested at least one meal day, sometimes two. On the one hand we feel her body is starting to shut down and this is a normal part of the process and we need to respect it, on the other we want to ensure we are taking the best possible care of her. We also have some outside help a few times a week home health, PT and an LVN all under oversight of an RN. They monitor her weight, we haven’t felt comfortable having this convo with them. I am fearful if we allow her to refuse food she will start to lose weight and they will call APS. Has anyone been in this position? I’m morally and ethically torn...thanks in advance for any experiences or guidance.

They start refusing food when their bodies can no longer process it. Eating can actually cause pain if her body is shutting down. Get her evaluated for hospice if she isn't on it already. It sure sounds like she should be.
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Reply to gladimhere
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Have you considered having her evaluated for Hospice? They might have some helpful input on this. Best wishes.
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Reply to chdottir
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I contacted hospice directly in my state where you can self refer for hospice. The H doc can review records and determine if the person will likely qualify. Failure to thrive in late dementia is one of the qualifiers for hospice care, and they will support your decision. If she were in a care home, the carers usually hand feed and coax. But at home, you can be more in tune with her. Hospice brought up hand feeding to me and asked if we wanted to when it came to that in dementia and I said no. (They are the ones that told me that hired help often has a moral problem with it, and that they could try but it was probably not going to be followed where she was).

I fully support your decision.
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Reply to surprise
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1nephew Feb 12, 2019
I don't understand what you mean about "hand feeding" that Hospice asked you about and you said no. What did you say no to? Thanks.
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My mom lost her appetite and almost all interest in food 6 or 7 years before she died so that alone isn't necessarily a sign of end of life. Having had a brother die of cancer I was/am very aware of the issues around eating at end of life and would have never forced mom to eat, but I did try to provide foods that she could enjoy and I also reminded her that she needed to keep up her strength if she wanted to remain as independent as possible. By the end of her life she was being spoon fed and eating pureed foods and thickened fluids, even then she could have refused to open her mouth or to swallow if she chose.
I think the key is to keep offering and then follow her lead. So - if you are forcing, begging, cajoling with every mouthful then I would respect her choice not to eat, but if she will eat with modifications or smaller portions or just loves ice cream and peanut butter or whatever for every meal then offer that as often as she will take it.
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Reply to cwillie
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It is a common way that people die. They starve themselves to death. It's called the death spiral. They stop eating. They get weaker which means they are even less likely to eat. That's how grandpa died. Once an older person loses weight, it's really hard for them to gain it back.

The thing is. Mom was in the death spiral. She went from 120lbs to 80lbs. Pretty much everyone was thinking that was it. I kept nagging her to eat. Over the course of a few months, she went from 80 to about 110lbs. Ice cream does wonders. Now, she pretty much eats normally again. It's like a hump she got over.
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Reply to needtowashhair
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Thanks everyone. There has been no mention of hospice from the LVN and RN that see her nor her MD. She is doing PT and they are going to start OT. Twice this week she has gotten up and made her own cereal but this is rare, then a nap and she’s totally out of it again. The refusals are happening more frequently. I have been really pushing her to eat but we want to stop. I guess what I am really wondering if others have found outside care givers to be supportive of this choice. To stop pushing her to eat.
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Reply to Gdaugtherinlaw
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Sometimes my mom is not interested in food at the time I serve it, particularly if she tired following PT or Day Care. Yesterday she ate the tater tots but not the grilled cheese sandwich at lunch. I left the plate on her recliner table and after her nap the plate was empty.
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Reply to TNtechie
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As a medical professional, I do not see this as her "body shutting down". Having provided end of life care to many people, when the body shuts down, the person is usually in and out consciousness and cannot/does not swallow the food being fed. What you described sounds more like she needs additional assistance. I would definitely tell the nurse because she/he can make suggestions. You won't get in trouble for asking for help now, but it is neglectful to not feed someone who isn't actively dying or near death. Losing weight can contribute to other issues, such as bed sores, which would cause a lot of pain and suffering.
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Reply to insider
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Continue to coax; but if your GMIL really doesn't want to eat, don't force her.

Offer her a variety of foods that might interest her or stimulate her appetite, and consult her health care professionals about supplements. I'm personally not a fan of things like Ensure and prefer high calorie options like milk shakes, custard, rice pudding and good quality ice cream; but it never hurts to take advice.

Why would you be reluctant to discuss this issue? No practitioner would suggest that you force-feed anyone; and besides, your MIL's appetite and ability to feed herself, and once she can't do that to eat and swallow normally, are an important aspect of her condition. Her team needs to know.
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Reply to Countrymouse
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Good morning, at her age, in my opinion, she can do whatever she wants. My mum passed at 95 and ate very little. As they age their body changes and their need for food is not as it use to be. Try giving her Ensure Plus, lots of fruits. Juices and water. Keeping her hydrated is key...

I commend your husband and you for taking care of the your family. In many families, as soon as a family member becomes, "according to them," a burden, here comes the Nursing Homes. Which is not the solution. It affects me deeply when I hear of people behaving like this with their elderly parents.

If she has no medical problems, why is there a RN on hand? She is not terminally ill and does not need a RN, in my opinion. She just needs all the love you can give. You can direct the Aides on what you need done. If she can walk, have the Aide walk around the home at least three times a day. If she is in bed, have them turn her every three hours to avoid lesions.

When I took care of my mum, at nights, I got up to turn her frequently. At this point she already had lesions on the tail of her spine because of the Incompetent professionals.

Grandma knows what is best for her and her body. If her body is shutting down, she will sleep longer, eat less and wouldn't care very much for food. Do your own research and follow your gut and grandma's wishes. In the end, you have to live with you and the decisions you make now. Hiring more people is NOT the answer. If she is able to go out. Take her out for a bit.

Hospice came in for my mum. I was given a kit which had to be refrigerated. I was told to give my mum a little Morphine under the tongue for her pain. Why? My mum never used drugs and I refuse to do that. The answer was, to keep them calm. No, I want my mum to be as active and vocal as she can be until she is ready to go. Minor aches is normal in the elderly. Later I found out that this drug given in huge dosage hastens death... Heard many horror stories. In the end it is the Caregivers decision.

In my opinion that is.

All the best.
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