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

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.

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.

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.

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.

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.

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

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

Great big warm hug!

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.