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?
thanks everyone for your advice. Tough times
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
No feeding tube is for when she can’t/won’t eat anymore.
Such a difficult situation, hugs to both of you.
Let us know how it works out.
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.
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.
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.
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.