Nutrition and feeding Parkinson’s; What are other opinions on this from people who had to make such a decision?

I would go myself and see what the situation is.

If mom eats when fed, I think that it is cruel to withhold food and just not feed her.

I work as a front desk receptionist in a Memory Care community which houses dementia residents, Alzheimer's and Parkinson's sufferers as well. We have a woman who's in the advanced stages of the disease, and 3 of her children alternate coming in to help feed her lunch & dinner every day, as she's forgotten how to eat. Like your mom, she will eat if fed, but not otherwise. If you're unable to go in to the SNF physically to help your mom eat every day, you can consider hiring someone for that express purpose. I think with Ensure or Boost, again, she'd have to be helped and/or encouraged to drink it, right? Unless she's okay drinking on her own.........and then you can certainly bring in a case or two of those products.

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.

Have the occupational therapists done an assessment to see if adaptive utensils might help? Utensils with built up rubberized handles made a huge difference in my mom being to feed herself.

There is a part of the brain called the motor cortex that controls voluntary movement. If it is impaired by dementia, it can affect the ability to move utensils with her hand to her mouth to feed herself, to swallow solids and liquids, and the ability to speak as well as other actions. If you bring the food to her mouth, she will chew and wait for the glands to salivate and for the throat muscles to allow her swallow the food. You may have to use a food processor to prepare the food to be smooth and soft enough for her to chew and swallow. A clear thickener might also be needed to allow her to drink fluids by holding them in her mouth while she waits to swallow. The aides may screw it up by allowing food to dry up which will make them fall apart in her mouth and make them difficult to hold in place.

I forgot to add. If she is still having trouble swallowing solid food, you can give her a small amount of some lemon Italian ice. The lemon causes the saliva and the sweet taste will induce the swallowing.

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.

I think that getting a Hospice evaluation is a good idea at this point; Hospice can often solve problems that the rest of us can't figure out!

When my mom was in a nursing home for rehab I met a lovely volunteer who fed a woman who could not feed herself. God bless that wonderful woman because the nursing home was understaffed and the resident did not have any family nearby.

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!

They are saying that liquids are a aspiration choking hazard now so they don’t do ensure or boost or anything like that with Parkinson’s patients if they are having problems swallowing. They will do a soft serve ice cream with the patients I’ve seen. They are not offering it to my mother though so not sure why not. Will arrive today in time for lunch to see what’s going on. I do believe it’s just taking her too long to eat now, the food is puréed and dries out fast and they don’t have the staff to sit there and feed her one on one so she sits there for hours. We can afford to hire someone to feed her IF THATS WHAT SHE WANTS? That is the question the sibs are hung up on now. Does she want to eat anymore and will she be honest with us!

thanks for all the input from everyone here.

Oatmeal, I'm so glad that you are going to be "boots on the ground".

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

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.

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.

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.

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.”

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

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.

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.

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.

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

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.

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.

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.

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.

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.

You could try canned liquid meals.

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.

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.

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.

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.

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

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.