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My mother is in a nursing home and can no longer feed herself. It takes her an hour to an hour and a half to eat a meal when someone has the time to sit and feed her. She lost 5 lbs this past week. Recently she told my brother she wasn’t hungry and didn’t want to go down to dining room. Not specified if it was a one time request or just that one time. She does eat when fed and will tell you when she’s had enough. They just don’t have staff to devote to feeding one patient. Now he wants to stop feeding her altogether and just let her pass away. She does have a DNR and ‘no feeding tube’ on her medical wishes. She does have some dementia. I want to hire someone to feed her meals. They haven’t even suggested or tried Ensure or Boost yet. I don’t know what she wants but brother says she isn’t capable of making her own decisions anymore. I think refusing to eat altogether would be a decision. She still eats when food is offered. Just takes too long for staff. What are other opinions on this from people who had to make such a decision?

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Just seeing this... I support people who are caregivers, and people who coordinate care for loved ones with a variety of conditions. There are liquid nutrients that are quite superior to ensure or boost that people appear to love and take easily on their own. There is a Nutritional Advocate in Portland Oregon who can give you information on how to get them. She is a Holistic Health Practitioner and Educator, a wealth of information. I have seen her help people prolong health as long as possible and restore health when possible. Her name is Edwina.
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Great big warm hug!
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Updating: so talked to the one nurse here I really love. She says my mom is still eating and opening her eyes and ‘has her marbles’ when awake. She doesn’t think my mom is at the point yet to sign waiver to stop feeding and just make her comfortable with morphine. Getting there but not there yet. But she is fading quite rapidly from a month ago. So playing it by ear.

thanks everyone for your advice. Tough times
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sanhoro12 Nov 2019
If she is still doing normal bodily functions after taking in food and breathing comfortably, she is okay. The weight loss takes its toll on the vital organs. I'm sorry about things appear to be heading, but the urgency of the situation is why I threw so much information at you.
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She may have lost her hunger reflex - this can happen after some surgeries - not everyone has the same level of hunger reflex because when a bunch of people come back home after an outing there is 1 that is 'starving' & others who can wait to eat

If she has no reflex then she will eat when it is at her lips but then she isn't looking for the next bite which is why it takes so long to get a meal into her - check this out to help make any decisions
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Update: now that I’m here it is kind of complicated. She is definitely fading. She will eat if offered food but her mind drifts and then she won’t open her mouth for food unless you get her attention again. Then she will keep eating and will tell you when she has had enough. But watched staff feeding others and the minute the other patients became uncooperative in any way they gave up. Understaffed and busy. So not sure they will persist when she drifts off. So wondering if this is why she lost 5 lbs last week and if me and other family member feeding her will make difference this week. They have started with the boost which they didnt offer last month I was here. I did request ice cream for her. So we will see. I will update on weight at end week Still having conversations with her and watched football and she’s knows what’s going on but she sleeps a lot. Probably weak.
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sanhoro12 Nov 2019
I noticed on the doctor's reports they were putting down refused to eat. They lie and don't care. I talked to an aide recently and she said they will stop feeding if it takes too long. Each aide is accountable for 8 to 12 patients, and they can't feed them all if one or more takes 1 and 1/2 hours. It is a matter of your mom or their jobs.

At the memory care unit I visited, the staff was laying out the dishes in the kitchen for a good 15 minutes while the patients waited. The staff was going through the medications and putting them in cups. The food was already drying out. I went in and brought my own food as did a number of other family members for other patients.

You can buy applesauce. It is already in a form she can eat.

It's pretty unlikely she will like baby food, although it is often suggested by strangers. It is too few calories to make a difference.

Pureeing tuna is very easy and doesn't require an oven. You can blend tuna, bread, and mayo to feed to her.

If she likes Chinese food, I would get some Lo Mein noodles and run it through the food processor with some added water. It has thick noodles that will hold the food together after puree.

In the end, she needs two glasses of nutritional supplement drinks a day. They provide 250 to 350 calories each if given with whole milk. They also provide 16 to 24 ounces of the 36 to 44 ounces of fluid she needs each day. You will not have to feed her as much solid food to meet her calorie requirements.

She may be weak from aspirating food or liquid residue during the night. The use of mouth swabs with lemon to clean her mouth before sleep will help reduce this. You can also massage her back to help loosen mucus in her lungs. It is similar to the percussion massage for babies with pneumonia. I always find that my mom talks more coherently when I do this.
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One thing that does occur to me is that almost any meal, whether your mother is prescribed a modified diet because of her swallowing impairment or not, is going to be pretty unappetising after an hour on the plate.

Smaller and more frequent..? How could that be worked in to the nursing home's routine? Who visits regularly, and could take in appealing, high nutritional value snacks and drinks?

I wish I did find it hard to believe that a nursing home does not have time to assist its residents at mealtimes, but the problem is obvious. Even with a comparatively high staffing ratio there are not the care hours available for residents to receive one-to-one assistance at meal times. Feed three people for one hour each, and lunchtime stretches from noon to three not even taking into account other needs such as bathroom transfers or residents wishing to leave the table. It can't be done. Hospitals rely on ward volunteers to help with mealtimes, but then those volunteers need training too - you can't just let enthusiastic amateurs loose on stroke patients, for example.
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What kind of nursing home is she in? I have never heard of not wanting to feed a patient because it takes too long. I would contact a lawyer who handles elder care. Her insurance company, if that who is paying for her care or Medicaid should be contacted. My husband is on hospice and I take care of him in our home. He was diagnosed with Parkinson's over 12 yrs. ago. He is bedridden and can't feed himself. Sometimes it takes an hour or more to feed him. I do give him boost along with food. Sometimes he refuses to eat but I do try to get the fluids and his meds that are ground up and put into applesauce. I have to change and clean him since he is in depends. He has had trouble with bedsores that I work really hard to prevent and to heal up. He has lost about 20 lbs. this year alone. Just because someone can't feed themselves doesn't mean you with hold nutrition. I am applauded at your brother's thoughts and at the care she is getting in the nursing home. You need to speak up for her care.
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I find it hard to believe that your mother is in a nursing home that won’t spoon-feed residents because it takes too much time! Nursing homes are “equipped to care for persons unable to look after themselves, as the aged or chronically ill” according to one of the definitions that came up when I googled the term “nursing home“. Perhaps your mother is not in the appropriate facility for her needs.

My mother has rather advanced Alzheimer’s disease. She has been in a nursing home for about three years and the aides have been spoon-feeding her for approximately the last two years. They have been giving her puréed food and their version of a nutrition drink. Her weight has remained stable. I feel my mother is in a good place. There is a high ratio of nurses and aides per resident on my mothers floor which is for those needing the highest level of care. It is a private pay facility that doesn’t accept Medicaid, and that may be one of the reasons they are able to provide good care at a good price relatively speaking. There is not a high turnover of nurses and staff. It is close to where I live and work so I visit often after work. Unfortunately in the not too distant future I will need to move my mother to a facility that does accept Medicaid as my mother‘s bank account is becoming depleted. I don’t want to have to move her but I know of another nursing home facility close by that accepts Medicaid and has a very good reputation and that’s where I will submit an application when and if It becomes necessary.

As has been mentioned in this discussion, there is also the issue of quality of life. My mother was a nurse and some of her jobs were in nursing homes. I can remember her saying “If I get like that, shoot me“. And yet she did not draw up any end-of-life directives. I signed a DNR for her in the nursing home and I certainly would not have her tube fed. I do think sometimes that if my mother “in her right mind” were able to see herself now, she might not have wanted to go on for this long.

And traveling this long, sad road witnessing my mother losing her mental and physical function over the last ten years has gotten me to thinking about quality and end-of-life issues. I don’t know what the answer is but I am beginning to think our healthcare system needs to put equal emphasis on the power of individuals to choose when to leave this life as they do on the power to extend life.

I wish you the best working with your siblings to find solutions ~

Cristal 💠

PS. I think it is perhaps unusual for a person like my mother with Alzheimer’s disease or maybe your mother with Parkinson’s to be able to continue to be spoon-fed for as long as my mother has. I have been told that my mother may come to a point where she doesn’t know what to do with food when it is in her mouth, and if she didn’t swallow then it could go into her airway. And perhaps the physical ability dealing with food for a person like your mother with Parkinson’s may be more complicated compared to how it has been for my mother so far. My point is that my knowledge of these things is limited and what works for one doesn’t necessarily work quite the same for another.
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My experience is as long as she wants to eat, offer food that is easily digested. Ensure and Boost is not and has no real nutrition. I found a product called Essentials, which essential fatty acids, calcium, fiber and protein in a water soluble liquid. It comes in one serving size and can easily be given quickly. Two small containers are a meal for an adult. I found one every four hours did more for my friends Mother then anything else. She was declared hospice and given three weeks to live -- she lived 2 years longer. I did hire someone to come in mid day to check on him and make sure he was getting the Essentials. I found it through a friend - if you would like to know more let me know how to contact you.
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You could try some blended foods that will go down well and give her nutrition. My friend has a disabled child who cannot eat by mouth and blends regular foods.
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Oatmeal55,

I've no experience, and not an expert, but that the facility isn't feeding her because it takes too long doesn't seem right: ethical or legal.

I agree with many other posts, she still wants to eat, and should be fed. Isn't it the job of the facility to ensure that it happens? And if they can't, aren't they responsible, with your advocacy, for transferring her to a place that can?

It has been my experience that I've needed to advocate vigorously (not rudely) for both my folks. The aged are really shunted aside in this society.

I wish you and your mom well.
R27
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Jo123456 Nov 2019
Agreed
it is sad that families must pay exorbitant prices for patient care , and then care for the patient themselves, or supervise staff to assure care is given.
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Sadly it sounds like your brother does not want to be bothered. Right now, she needs to be fed! There will surely come a time when she will legitimately refuse to eat, but this is not the time.
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Right now, she's eating when fed by someone. That is majorly important. Please hire someone to feed her. Is she unable to use her arms and hands at all? There are different types of devices available to help her. If she is able to hold a sippy cup at all, she might be able to drink Ensure or a smoothie.

Honor her wishes for a DNR and no feeding tube, WHEN it comes to that point, but it does not sound like she is there. She is probably feeling like nobody wants to be bothered to feed her and that is so very sad. Feeding her is a good job a teenager could help with.
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My husband takes a long time to eat. I found that he really enjoys the Bolthouse Farms and Naked smoothies. Some of the Boldthouse smoothies have 30 grams of protein and about 400 calories. They taste much better than the Ensure/Boost drinks. I give him one or two of those every day. He also likes lots of the toddler and baby foods. He wears full dentures. The baby foods don’t take him as long to eat. I try to use adult words for everything concerning his care. He likes the baby food. It can be put into a bowl so it’s not obviously baby food. He loves ice cream so I let him have as much as he wants. Another thing he enjoys are the sport drinks like Body Armour. A frozen meal he enjoys is the Gramma’s Chicken and Rice Bake. I cook it and run it through the food processor. He can eat that for two meals. Lentil soup and many other soups appeal to him and taste good. Very easy to consume. My husband is home with me, and I have a caregiver for him four hours a day. I try to make sure the CG feeds him a meal during that time to relieve me. For dinner, I pull up a chair to his bed and feed him while we watch TV. I use those straws that are made of some kind of bendable plastic. I found some Contigo drink mugs that don’t allow spills. You can also drill a hole in a few lids that fit the bolthouse and Body Armour drinks and put a straw in those. All these things have taken a lot of the stress out of feeding him and keeping him satisfied. It has helped avoid some of the weight loss.
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sanhoro12 Nov 2019
If you're having difficulty getting up to speed with preparing meals for puree, there are some Stouffer's meals that lend themselves to puree if you add several tablespoons of water,

Lasagna with Meat and Sauce
Tuna Casserole
Grandma's Chicken Rice Bake

There are mashed cauliflower by one of the companies that you microwave and put in the blender with bread to make it hold together.

Broccoli or cauliflower can boiled with butter and salt. They can then be put in a blender with steamed rice to become mashed vegetables.

If she gets stuck with food in her mouth that she has trouble swallowing, you can offer ice cream or lemon ice as a chaser.
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PEG tube. It can take 2 to 3 weeks to die--very slowly--of dehydration. Mom lasted quite a long time and did very well with it. She ultimately died of liver cancer..had nothing to do with Alzheimer's disease. Ironic isn't it.
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You could try canned liquid meals.
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My mom is on hospice and in the final stages of Parkinsons. She too has very arthritic hands so it is not possible to feed herself anymore. Hospice aides and volunteers will not come enough to cover feeding her for every meal. The Parkinsons has affected her swallowing ability so she too is on a puréed diet and thickeners are used for all drinks. When things get too thin she coughs a lot so ice cream needs to be eaten before it gets too soft. My mom has days where she says she does not want to eat a meal and no one tries to force her to eat. Then she will eat the next meal. My mom had told us kids many years ago that she never wanted to live being dependent on others to care for her. And here she is in that situation but the problem is there is no humane way to honor her wishes because feeding someone is not violating her dnr on file.
We have private caregivers that come to her memory care facility and help with feeding some of the time. My father is still alive and he feeds her most of the time. And the staff feeds her some of the time. All of her foods are puréed and they put gravy on them which keep the food moist so dryness is never a problem that I have seen. I would suggest you ask about having them put gravy on foods that can dry out.
Maybe there is a senior in the area that would like to earn a little extra money who would be willing to come feed her? It will most likely be at least 3 different people, one for each meal, that you hire to come in for 2 hour shifts. This would give her companionship as well as help with feeding. i would check to see if the area where your mom lives has the neighborhood app "nextdoor". Then post something in there directed to the local neighbors explaining what you are looking for and you may find local seniors through that. I have had success with this in finding help for my mom.
I can tell you it does not get easier watching the decline of your loved one but you have to just accept how they are and love them unconditionally and know this is not the life they have chosen and feel good that you are doing your best to help them be comfortable and feel loved. Even though my mom can barely talk now due to the Parkinsons she will tell me many times how thankful she is is that I came to see her and she thanks me for everything I do for her. This makes it all worth it to me knowing I am helping out the person who sacrificed so much for me when I was a child.
I wish you the best. Hugs to you and let your heart guide you through this.
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I might also add that the speech therapist on staff can sit with her during a meal and assess the situation and make suggestions. That is part of their training.

Ensure is so sweet and not all that great a source of Protein. I’m currently rehabbing from a hip replacement where protein is required. I got a great protein shake at Costco called Orgain Clean Protein with 20 g. Of protein and not sickly sweet. Premier Protein was another recommendation by the nurse.
i think Sam,s, Walmart and online is another source.
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sanhoro12 Nov 2019
If the swallowing isn't that bad, she may be to drink strawberry Carnation Breakfast Essentials mixed in whole milk with a straw. The whole milk might be a thick enough if her disease hasn't progressed too far.
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It is the job of staff when a resident needs to be fed to feed them.
There should be no reason to hire someone to feed her. If this is not being done by staff then it is time to have a little "sit down" and discuss the situation. This could be reported.
I would think there would be a liability issue if you were to hire someone and your mom choked/aspirated. The person you hire would not be covered by insurance carried by the facility.
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Oatmeal55 Nov 2019
Unfortunately things are not going to improve at the nursing home. They just don’t have the staff. None of them do. No one wants this job and they don’t pay enough. This one is rated # 1 in the county so you can imagine what others are like.
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Oatmeal55 - I completely understand your situation as it sounds identical to mine except that my mother lives with me - she has Parkinson’s, rheumatoid arthritis along with the related dementia and Alzheimer’s.

Honestly, I usually end up feeding her a bit. I try to give her an opportunity to feed herself, and if she can’t due to the tremors and/or forgetfulness, I will step in and feed her. She gets about halfway through though and doesn’t want to eat anymore and I respect that. Patients do seem to know when it’s time to stop eating and though your mom’s precious mind may be impaired, she will let you know when it is time for her to quit eating altogether and at that point, perhaps the best decision would be to respect her decision.

You have received a lot of good advice here and I know that you will make the best decision for your dear mother.

This is a very difficult time in our lives, hang in there, as I tell myself...this will pass soon enough and our dear mother’s’ journeys will be done after a courageous battle with the terrible disease.
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Feed her! She’s not refusing the food, it just takes time. Just like feeding a toddler takes a long time.
No feeding tube is for when she can’t/won’t eat anymore.
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Your mom is eating food when offered. No matter how slow or cumbersome the process is for her, she’s showing desire to eat. A day may come when she’ll no longer want food and will refuse to eat. The two are very different. Thank you for advocating for your mom and her need to be fed
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Oatmeal55 Nov 2019
Thank You!!! This is what my argument has been! Wish sibs would understand. Anyway, on my way there now. Plan is to feed her three meals a day for a week to see if she still loses weight or refuses food. Then re-evaluate. Is it her or is it nursing home staff not taking the time?
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Short answer - do not stop feeding her. It does not sound like she’s at that point yet. You’ll know when. Trust your instincts so that down the road you will have peace with your decision. (I had a different experience which I still cry over.) If she’s accepting food, she wants to eat. I can understand her decision not to go to the dining room: limited time to eat, public setting, little assistance . . . Hire someone for as long as she needs them. Keeping you and your mom in my prayers.
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Oatmeal, wishing you a productive trip. I pray that your mom can be open and honest with you.

Such a difficult situation, hugs to both of you.

Let us know how it works out.
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You need to report this to Adult Protective Services. The nursing home is supposed to have enough staff to give care for the patients. If that means spending hours feeding one person, then that's what should happen. No! You should never have to pay for the services that are already being paid for.
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we very often ask ourselves ‘is this what mom would want’. She would never in a million years want to be in ltc in diapers or wheelchair or away from her family. A hospice assessment and talk with dr might give you some answers
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My Mom also had Parkinson’s and was in a dementia facility. When younger she put in writing that she never wanted to be fed, that she would consider it to be battery if someone fed her if she could not feed herself. As she declined at home I asked her about this and she said she wasn’t sure how she felt about it. I don’t think she was noticing that we were spoon feeding her while talking, reading the paper etc. Once in the facility I let them know her wishes but found out it didn’t work that way there. I would sit with her at meals and caregivers would reach right over me and spoon food into her mouth. So I started feeding her lunch everyday and yes it would take an hour and a half. As long as she opened her mouth for bites she was expressing her desire to eat. Sadly, there definitely comes a time when they will stop eating. Natural process at end of life. I would gently offer foods for comfort like ice cream but not insist. Didn’t guilt her for not being able to eat at that point. I’d say “that’s ok Mom, we’ll try some more later.”
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You said she eats when food is offered and let's them know when she's had enough, then she is making decisions to eat or not eat.

If she let's you know she doesn't want to go to the dinning room that is making a decision.

You should hire someone to feed her.

Maybe you could hire someone for just the lunch meal of the day and have her drink an Ensure for breakfast and dinner along with what ever time she can get Staff help with her breakfast and dinner.

I have a 95 yr old dad and he enjoys drinking his Ensure.

You should deffiently see if she would like it.

My Dad likes chocolate ensure the best.

So, to stop feeding her is absolutely absurd and inhumane.
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You may need to consider that our seniors are often greatly influenced by the attitudes expressed about their weaknesses. One older lady overheard a granddaughter talking about how gross it was to see food falling from her grandmother's fork because of her shaking hands so she stopped eating in the presence of others. This became a big problem when her husband died and she lost his help and encouragement.

My mother's first cousin in NH with Parkinson eventually lost the ability to feed himself and his wife or daughters went at every meal to feed him. He would refuse food before accepting help from the nursing home staff because at some point, a staff member had expressed his/her impatience with the "lost" time spent feeding him.

It's possible your brother has expressed (not necessarily words, signs, body language) his own impatience or maybe just being uncomfortable helping or feeding your mother and she is refusing food when he's around because of it. Your mother may respond to your patience and eat well for you. If so, then it will be really important to find someone with kindness and patience to make your mother feel comfortable accepting help with her meals.
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XenaJada Nov 2019
All of this makes perfect sense and is very sad too.

My grandmother ended up in a NH during the last year of her life. Thankfully it was only 5 miles from my parents. My mother was devoted to her mom and drove there for every meal for over a year to feed her mother.
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I agree with your point of view.

If your mother were not capable of eating or did not want food, it would be different. But all that stops her is that she needs prompting and support; then she eats normally-for-her. I don't see this as being any different from a person who needs help because her hands are in plaster or she can't see her plate, for example: there is no extraordinary or heroic intervention required, here, no artificial prolonging of life past the point where it has any quality.

So it is, as you say, purely a matter of one person's taking the time to be with her. Is hiring an assistant at meal times your decision?

Encourage, support, assist, but don't force. Your mother's appetite may go and she may lose all interest in eating, but as long as she enjoys as much as she wants that's good; and food should be offered in any case.
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Oatmeal55 Nov 2019
I’m pretty sure at this point I would be outvoted on hiring someone. I always lose the vote when it comes to my moms care. I even wanted to move her close to me but was outvoted before I could even present the info on the nursing homes. I do not have the POA.
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