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LittlePrincess Asked November 2016

My grandma had left side stroke and refuses to eat and drink water all the time. What should we do?

My grandma had left side stroke, now she cant speek or understand. She refuses to eat and drink water all the time. We're desperate. Help!!! My grandma had left side stroke, now she cant speek or understand. She refuses to eat and drink water all the time. We're desperate, we try to explain her, to please her, try with sweets, but everything is without succes. She holds out all the time and its very dangerous. How else can we help? Doctor is against tube and has no idea what should we do. It passed 3 months since stroke and there is no progress. Please help, thank you!

LittlePrincess Dec 2016
Thank you for information. When I asked the nurses they told me that I must let her to die. They told me that for 3months. There are days when she ate normally and there are these when she dont want anything.

Crystal95437 Dec 2016
Dear Little Princess,
If your grandma cannot speak, and is rejecting food and drink, there really is nothing to be done. If she has trouble swallowing, VERY common to stroke patients, then giving her liquids can cause her to choke., and by choke I mean, and then die. If you do give her liquids,, thicken them., ask the nurses that are caring for her now what to buy., There's powder to thicken thin liquids.,, Then just hang on dear, we can't always fix whats wrong. The hospice nurses should be able to give you good direction on what to expect, and where to go for support. Good luck.

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BarbBrooklyn Dec 2016
There is a drug called Remeron; it's an anti depressant that sometimes increases appetite. there's another drug that doesn't come to mind. google "meds that increase appetite". there is, of course, medical marijuana to consider.

LP, you say you have experience? With persons who are on Hospice who are refusing food? Just make sure that your attempts to feed Grandma are safe. You don't want her to aspirate.

LittlePrincess Dec 2016
Thank you for advice but I have expirience. Im asking for some techniques or some drugs to increase ter apetite.

pamstegma Dec 2016
Little Princess, If you force in food or water, you will actually cause her to drown in the liquids. Nurses and Doctors know that; you have to trust them. Watching someone drown, because they cannot swallow, would be totally traumatizing.

LittlePrincess Dec 2016
If someone has some techniques or ideas how to feed and give water to person who refuse it, please help! Thank you!

LittlePrincess Nov 2016
Care is terrible, they wrote off her at the begining. Anyway we dont have permission for ng tube and that is only matter. I give her very usefull food like meat and cheese. Most progress is in exercises. But she eats so little. If you hear about some techniques or something else that would be helpful for us, please write me. And thank you for time and effort.

Veronica91 Nov 2016
LP you can only ask about bowels, staff should be monitoring bowels but i don't know the standard of care where you are.
Yes the TPN does have risks so parental tube into the small intestine is a better long term choice. In the US an ng tube can be only used with a Dr's order. however most hospices have a list of standing orders that the Dr signs on admission which allows the nurses to do certain things without consulting the DR. It usually involves things like using a urinary catheter, starting oxygen and placing ng tubes. NG tubes in my experience are rarely placed.
Recovery from a stroke especially one as severe as Gmas takes many months if not years and intensive therapy to recover at least some function. it is more usual for the patient to have another final severe stroke which will be life ending.
It is of course possible that the Dr did write off Gma from the beginning or more likely she used her professional expertise to decide if further treatment would be appropriate.
Progress can start at any time and usually is very slow and tiny steps. Squeezing your hand smiling and eating a little are all good signs but that may be all the progress she ever makes. There is no way anyone can predict the outcome. If you are a believer praying and just being there for her are the only options you are doing everything else. burden her body with extra nutrients can do more harm then good.

LittlePrincess Nov 2016
Im scared that TPN is riscyb and that is burden for heart? Have you idea how I get permission for ng tube without doctor? She had tube after stroke for 15days before she started to eat. I dont think the doctor is doing the best for her, I only think she wrote off her at the begining so she thinks that it isnt necessary to try anything because it wouldnt be better.
How can I be sure about bowels?
When could we expect possible progress?
Thank you!

Veronica91 Nov 2016
LP Ten Should have said TPN my computer has a mind of it's own.

Veronica91 Nov 2016
Little princess. Ten is Total parental nutrition. A big IiV tube is placed in a vein in the chest and a feeding solution is given through that. If the Dr is refusing a feeding tube without Gma's permission he won't do that. I don't know the current rules about how long an ng tube can stay in but it can be easily changed a nurse can do that under Drs orders. There is little danger with that except that the patient can vomit and inhale that, There really are no other ways to feed except following all the suggestion you have been given. i know you are hoping for a miracle and although I do believe in theme guided by what Gma does. if she spits it out it means she does not want it. On the days she will eat normally and take food give her as much as she will take. You have authority to make decisions for her but if the Dr won't comply it means he is doing what he feels best for your loved one. Any chance you can get another dr who will do what you want. at sometime the body just stops being able to process food and even if she swallows something it will just sit in the stomach and she will become uncomfortable. Make sure she is opening her bowels every day or two as that is something that can stop people from wanting to eat.

LittlePrincess Nov 2016
You dont be sorry. Except that, we have so many wonderful days.

LittlePrincess Nov 2016
No, it isnt that because there are days when she eats and takes drugs normally.

BarbBrooklyn Nov 2016
I think if she's spitting, she's telling you in the only way she can that she doesn't want to be fed.

I'm so sorry that you, and she, are going through this right now. I hope things improve.

LittlePrincess Nov 2016
Sometimes, but often she spits. She has infusions. You think were I come frome?

BarbBrooklyn Nov 2016
Can you use a medication syringe to give her small amounts of Ensure by mouth?

Where are you located?

LittlePrincess Nov 2016
Veronica91 thank you for concrete answers.explain me more what is TPN? It isnt a peg in belly?I abjure the peg in belly because I know how big are complications. I have two more questions for you. Can ng tube stay in her longer than 10days without complication? And how can I get permission? Im law officer and no matter that Im her tutor by law, without permission of doctor I cant do anything of this. And doctor refuse all the options without conversation.
About communication, I try all of that and try to learn her simple orders, but without success. We practise squeezing hand for million times and nothing :) But two days ago she blink me by her own and smile :)
I think for her quality, I only wont to try everything that is in my power and if there wouldnt any progress for a time, I will adieu. But I thing that tube is temporal solution to bring her energy.
Do you know some techniques of feeding?
Thank you very much!

Veronica91 Nov 2016
The proceeding posted it self so this is a continuation.
There is still the danger of reflux, pneumonia and vomiting. some of the formulas cute a lot of nausea and a pump need to be used so this restricts independent walking which in Gmas case would not matter. While feeding the patient needs to remain at a 30 degree angle to prevent reflux. These feedings usually take many hours but are easy to manage at home. Hospice will usually allow these to continue as they are paid by Medicare which by the way only approves about 25% of orders for tube feeding.
As long as you can encourage Gma to eat at least small amounts that is the best source but may mean a relative has to be there for every meal.
As for not receiving replied to your specific answers to your original question this was because people on the site experienced caregivers and health care professionals try not to give advice that they feel is not in the best interests of the patient rather point the caregiver to resources where than get help.
I forgot to add that food can allways be administered by enema as it is to prisoners who are on a hunger strike which i am sure you would not want for your loved one. i hope this make clear the alternatives for someone who can not or chooses not to eat.
You also mentioned that Gma can not communicate.If you ask her a question can she indicate yes or no by blinking an eye or squeezing your hand. if she does not seem to hear can you write simple questions in the same way. maybe even write out possible answers if she can still point with her good hand. As with any tube there is always the danger of pulling them out painful or not.
Think first and foremost what is best for Gm's quality of life not what the family would like to happen.

Veronica91 Nov 2016
Little Princes, things seem to have improved for Gma for the time being.
As you feel no one has answered your original question I feel it is appropriate for me to add more.
First of all Gma may be continuing to have small strokes and refusing to eat may be part of that progression which is why she refused food for a time.
Food in liquid form and be put in her mouth if nessesary by force, she may swallow it or spit it out or simply let it sit in her mouth. You said the Dr would not agree to tube feeding but that is a possible solution. There is TPN (Total Parental Nutrition which is an IV type of feeding where a large IV tube is placed into a large veiin the chest. This is a minor procedure and can be done at the bedside but not continued for too long because of the danger of infection. After that it is changed to tube feeding either via a nasal tube which can be placed by a nurse and is a simple but not very pleasant procedure. Long term it is uncomfortable for the nose but can satisfy all nutritional needs. The food can stay in her stomach and not be processed if her body is shutting down. The nurses will check for residue before each feed and reduce the amount they give. She can vomit this with the danger of aspiration into her lungs leading to pneumonia. After that a permanent tube can be placed in the gut via an incision in the belly. This is a simple procedure but will be done with sedation in a proceedure room under X-ray check. An Interventional Radiologist will do this.
This type of feeding can continue indefinitely but the tube needs to be changed about every three months in the hospital. The downside to this is again infection, the tube easily clogs and the patient can get painful cramps and diarrhea

zythrr Nov 2016
LittlePrincess

You rock.

LittlePrincess Nov 2016
I dont need fake gladness

BarbBrooklyn Nov 2016
I'm so glad that your grandmother is starting to eat more! That's wonderful news, LP. Be well.

LittlePrincess Nov 2016
I please other people on this topic to give me some concrete answers about feeding and giving water or anything that could help her, accept that I need to take it that she is dying. I already heared that so many times for those 3months. Thank you!

LittlePrincess Nov 2016
@BarbBrooklyn Im sorry that you dont believe in mirracles, youre and similar to you surely very poor soules and I havent what else to say. Thank you for "smart and helpful" answers and if that answers are helpful to you, you use it. But that werent answers on my question. In these few days, grandma is starting to eat more and more. So I dont have that kind of help of people like you. In this world, there would always be hundred people like you and one exception who approves that everything is possible. To people like you, I havent what to say. All the best!

BarbBrooklyn Nov 2016
LP; are you in charge of grandma's care, by any chance? If you are, you really REALLY need to sit down with the Hospice nurse and Social worker. Get them to explain to you if you should be trying to get Grandma to eat. From what you describe, getting her to eat would not just be counterproductive, it would be torture.

As the body enters the "active dying" phase, it can't process food any longer. If you don't understand, or don't believe what we're all trying to tell you--which is NOT to try to force food into Grandma--please get the Hospice nurse to explain it better than we can.

And the phrase is "if you can't say something NICE...." CWillie and Veronica are VERY smart and telling you very smart things. For whatever reason, you're not able or ready to take it in.

I'm very sorry that your Grandmother is in such sad shape. Right now, this is out of human hands. Sit with grandma, pray with her and sing with her. She may recover some of her skills, or not. But RIGHT NOW, feeding her is not the right thing to do.

LittlePrincess Nov 2016
@cwillie With you and similar to you, fit the best saying "If you have nothing smart to say, better not to say anything." All the best! :)

LittlePrincess Nov 2016
Thank you for advice. Once again, my question was how can I give her more food or water, I know very well what is happened but I surely dont give up feeding her. Thanks but you stray from subject :)

cwillie Nov 2016
As a person gets closer to the end their bodily functions begin to shut down, she is not hungry because her body can not process the food any more. It is one of life's mercies that the desire to east diminishes at this time because eating when the digestion has slowed and the kidneys and organs are slowing down can cause painful side effects. It is hard to see our loved ones pushing away the food we give them because food is so tied up with the idea of loving, caring and nurturing, we know that we must eat to live and to stop is to admit that life is coming to an end. I'm sorry you didn't get the answers you were hoping for, but it seems to me your grandmother is preparing to let go of this life and the best way to help her is to accept that and concentrate on making her final days comfortable.

LittlePrincess Nov 2016
@Veronica91 My question was how can I help her about food and water, not how can I prepared for her end :) Thank you anyway :)

LittlePrincess Nov 2016
Im prepared for everything but also I want to try all to feed her more and to progress. Yes, she has DNR :) She is at hospice but they say that we should take her in the old home soon. You dont have some other way for feeding?

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