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?
If mom eats when fed, I think that it is cruel to withhold food and just not feed her.
Have you had a hospice evaluation yet? If not, you may want to do that so you can get their opinion on how to proceed down this difficult path.
I'm sorry you are facing such a tough situation; my heart hurts for you. All the best to you.
We've been doing this for four years. Another thing I would add is that drinks have to be kept cool or she won't be able to swallow. The staff is letting food sit and deteriorate into a condition that can't be handled by your mom. Food dries up breaks apart, which can't be held together in the mouth. Drinks warm up and the throat muscles will not move to allow her to swallow. I have a neighbor who has Parkinson's without a sign of mental decline. She uses the same techniques.
The problem is that the medical staff doesn't have the time since staffing is kept to a minimum. I would also be very wary of non-medical opinions such as she refuses to eat or has forgotten to eat. It may very simply be that she is refusing food or liquid because they served it to her in a condition that is difficult to hold in her mouth and wait for the swallow. In a word, she is afraid that they will give it to her in a form that cause her to choke. When you work with her, always ask her if the food was okay for her to eat, whether it's too dried out or too thin to hold together, and whether a drink is too warm. You may have to go back to the kitchen and bring back something else in better condition to be eaten.
all of what you say is true: understaffed, dried out pureed food, long feeding time etc.
question between sibs is does she want to stop eating, is she really hungry or just can’t stand to eat that food anymore or does it take too long. Mom will never tell us the truth. She doesn’t want to be a burden. We can afford to hire someone to feed her but is that what she would want, is the burning question here. I guess I’m the only hold out among my sibs right now on that. I think we should. That’s why I’m going early to see for myself.
Do you know of an organization that would send a volunteer if you or your brother are not available to be there?
This is so sad. My mom has Parkinson’s disease too. I can empathize with you. Hugs!
thanks for all the input from everyone here.
Getting someone in from a Hospice organization may be the easiest way to have this conversation with mom and the rest of the family. This is not their first rodeo, like it is for the rest of us
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.
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 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.
Such a difficult situation, hugs to both of you.
Let us know how it works out.
No feeding tube is for when she can’t/won’t eat anymore.
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.
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.
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.
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.
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.
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.
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.