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university64 Asked January 2015

If your parent can't swallow anymore, how does one keep them nourish and alive?

I'm the one taking care of my 97 yr old mom who now is failing her swallowing test at the hospital that i reported earlier as of 6 days ago she was eating great, and taking drinks in until the pneumonia hit they (hosp) fought hard to get it under control, but they think mom isn't passing their swallow test which the next one were going to be there for it because we were able to give her some nourishment and she took it without choking. the doc said tube feedings of any kinds isn't the way to go. so starve them is the only way. shes alert, talks in her own way shes been dx for 8 yrs and is a fighter so what do i do. don't like the starving method not ok with me, watching her want drinks and food and not giving it to her while she starve.

Luddy10 Feb 2017
My mom was just admitted to hospital. She's 94 and fractured her spine from a fall. She cannot eat or drink at this point. Don't know if we will persue with feeding tube. Very sad.

partsmom Feb 2017
Both my dad and my husband stopped eating; dad was getting diarrhea and then refused food for several weeks. My husband was having swallowing difficulties; what he tried to eat came back up and I would find his pillow soaked in the morning. They offered a feeding tube, which I hoped would help, but he pulled it out the first night. What happens is that some of what they try to eat goes into the lungs, and sets up aspiration pneumonia. When the digestive system stops absorbing food, you could try vein feeding, but that is usually done in cases where there is a reasonable hope of recovery. Both them them had late-stage cancer, and passed peacefully within a week or two of not eating.

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pamstegma Feb 2017
Momcare, observing a patient means sitting with them. A good trained professional is looking for oxygen saturation, hydration, signs of liver or kidney failure. If they see signs of muscle contraction, they will suggest pain relief. If they see delirium, they have meds for that too.
I was glad to have those meds for my daughter. Think it over.

cwillie Feb 2017
Momcare, hospice is all about easing the final months toward a certain death. It isn't about the money, it is about having the tools in place if the need arises. The hope is that we all slip away quietly in our sleep, the reality is that most of us do not and both patient and caregiver can use a little support through both medication and on call nursing.
If you don't feel your mom is dying then why would you enroll with hospice?

Momcare32 Feb 2017
Disappointed with most of the medical community. From the hospital that said my 84 year old mom all of a sudden had COPD -no not close to hospice, only her PCM has been on top of things. I have cared for my mother 6 years at home with the assist of private paid care and at ALFs - which mom had frequent UTIs and hospitaled for poor care, those were the nice expensive places. Mom is now back home and not swallowing, so I contacted hospice. I am mixed on this $170 per visit billed to Medicare and they could not do anything except maybe sit with her. They offered all the things they could also bill to Medicare (free of charge is the term but it's our tax $$) at about 4-5 times the cost. What really bothered me is that she cannot swallow yet they wanted to get her a " just in case" preset group of drugs. Morphine, suppositories etc why? This seems like it's all about the money. I just wanted support and found I get more online than hospice for profit.

Rosebush May 2015
Fetich ka: Our thoughts and prayers are with you and your family. You are so right about hospice.

Detuchka May 2015
Thank you. He had many of the classis signs of approaching death; do look for them. Hospice was good to us. Don't put your loved one on too late! Use me as a resource pls. Funeral tomorrow evening and burial at Quantico National Cemetery Monday (my wedding anniversary). We lost my MIL two months ago, too. God bless, and Christ is Risen!

blannie May 2015
Detuchka I'm so sorry for your loss. I hope I can go out as peacefully as your dad did when it's my time. Hugs...

jeannegibbs May 2015
Detuchka, please accept my condolences on your Dad's death. I am so glad he died peacefully.

Even if this outcome was expected and was the best thing under the circumstances, it is still a huge loss to you and his entire family. Be kind to yourself.

vstefans May 2015
Tube feeds make sense when the dysphagia is due to something that specifically causes swallowing trouble, like a brain stem stroke or ALS, but not so much when it is part of a larger picture of progressive dementia. The NEJM published a study indicating that the downsides of a feeding tube under those circumstances - the surgery itself ("PEG" tube, you really really don't want a chronic NGT in place) , the need for restraints if any, the aggravation of reflux - on average meant that you did just as well medically and life span wise to hand feed whatever amounts possible of the best-tolerated food consistencies instead.

One thing I did not see mentioned here is the Frazier protocol, which allows for plain water to be given between meals after really good oral hygiene as long as it does not cause distress to do so.

golden23 May 2015
detuchka - sorry about your loss. Your dad is a peace now. Sounds like he was when he went. What a blessing, but still a shock for you I expect. ((((((hugs)))))

Detuchka May 2015
Dad stopped swallowing yesterday morning. He asked for toast, bacon and eggs, but tried to eat some egg and toast with heavy wet jelly. He coughed up and coughed up all day, told me he doesnt know what is the matter because he cannot get food down. He went to bed about 830 pm, my husband helping, then when I arrived at 110 pm, after my class, I checked the room b/c the light was on. I found him sitting up in a stare, legs on the floor, still holding the the oxygen for his nose. I asked me husbant to confirm the death. He died peacefully.

peace416 Jan 2015
When my mother was in Hospice ( where she passed) a nutritionist explained that even if she actually ate anything, the food would not be metabolized - has no place to go as the bodily functions are breaking down. Therefore, your mom is no longer getting any nutrition or calories.

pamstegma Jan 2015
University, the weight loss is predictable when the organs are no longer able to properly process nutrients. When she gets down to 80, please please call Hospice. You may also see muscle contractions/stiffness, the knees draw up, the arms cramp in and that is not very comfortable. She will sleep more and more. Just keep her comfortable.

terryjack1 Jan 2015
Definitely speak to the social worker and/or the physician. You don't say the cause of the swallowing problems but I'm going to assume it won't improve. As above, there are thickening agents on the market that may make it easier for her to swallow. She's 97, what does she want, is she able to communicate her wishes? It may be that it's time to look at end of life options. You must look at quality of life which makes life worth living. Sometimes a patient will not improve with a feeding tube, and many refuse the tube and by this time the patient will not feel hunger as you and I. Keeping her comfortable and allowing her to pass peacefully may be the only option and it's the last thing you can do for her. This last act is unselfish and giving and so important. Everyone has different thoughts and opinions on end of life care, it's a personal choice. The natural order of life is that our parents pass on and we are left behind to carry on. While losing someone is difficult, it a normal part of life. Seek out counsel of the social worker, doctor or your minister. I'm sure you will do what is best for your mom.

Rosebush Jan 2015
Just wanted to share one more thing. My mother in law was verbal enough to make the decision to say no more hospital trips. My mom was not. Fortunately a brain bleed took that option off the table for us. Suggestion: talk to your mom and make sure you know what her future wishes are in case she becomes non verbal. Best wishes to you and your family.

university64 Jan 2015
even though my mom is eating here and we think shes taking it all in, were totally surprised when we found out her first wt in a long time 89 pounds all dead wt but 89. she did make it to 95 at one time i think it was water but since we have no proper way to wt her we have to wait until she visits the hospital again

IloveMom Jan 2015
lindaz, thank you for your comment. My mom isn't there yet, but losing a lot of weight. Knowing the steps clearer will help me when that day comes. I greatly appreciate this honesty and what to eexpect. Thank you agian.

university64 Jan 2015
mom isn't at the point that she doesn't want to eat and if she was then all we would do is continue offering it to her. that"s what the docs say about dementia and altimeter patients they will decide on when they want to and not. my problem was the docs were giving mom that choice decided by them not her

Rosebush Jan 2015
If your mom is near the end of her life forcing her to eat will do more harm then good in my opinion. Someone once told me that sometimes the elderly only eat to please the caregiver. With my mom I tried all her favorites and she said no. I chose to honor her wishes. Good luck with your mom I know it is not easy.

university64 Jan 2015
first th only financial advantage with hospice was they paid for her briefs, wipes, and gloves. she takes 2 pills and one is over the counter so we don't save much by hospice cover it. as for comfortable, i was told by nurses that by staving her isn't painful nor giving her fluids. their elderly body adjust to it if necessary. we know the meds for pain which she doesn't have ends her life quicker i know this from all those years in the medical field.

pamstegma Jan 2015
I agree with Lindaz, don't force her. The digestive system is shutting down. You said she already had pneumonia, which is from liquids going down the wrong pipe. If you tube feed, there is more risk, more discomfort, sores in the nasal cavity, gagging on the tube or worst of all, if you enter the trachea when you place the tube, the patient's lungs fill up and they drown.
I'd like to give you a miracle, I wanted to give my daughter a miracle. Hard as it is to accept, you put your own grief aside and you make their final days as comfortable as possible. You give her to God and let Him do the rest.

Rosebush Jan 2015
University: I am so happy that your mom is home and eating again, best news ever . We also were able to keep my mom at home. To me, it does sound like you love your mom and have everything under control. You know your mom better then anyone. If I could just share a few things from my experience . Make sure mom is sitting up straight or head raised on bed while feeding. This is where we had a few issues. Feeding mom while sitting upright with her legs elevated and not on the floor. I would also hope you give hospuce another shot when your mom is closer to the end . Having the comfort pack of MEDS in hand was a true blessing. Knowing that I didn't have to call someone, run to pharmacy and my mom not getting the relief asap was wonderful. The choice to when and even if to use the Meds is your decision alone . Take this time with your mom, you will treasure the memories forever.
On another note, I didn't understand why you had to pay $800 per month out of pocket on hospice. I paid nothing, it was all coveted by medicare. I am going back to read your post again. Doing it on my phone stinks

university64 Jan 2015
she is a tough Montanan for sure. for 8 yrs i and my girls (p/t) full time have gone thru all the fazes of altimeter, and dementia for the elderly. she gets grate care, she has two roho cushions for her skin (butt). she eats 2 xs per day, we keep her busy doing things, she has wipes, diapers, w/c the roho cushions, gloves, skin care and was at one time showers, 3 x s per wk now bath baths. she eats what she wants and gets high energy drinks if she has a bad day. shes up from 10am-1pm or abit longer if tolerated. then up again at 3pm-9::30pm if again tolerated. she only see's the doc if necessary. she also is in contacted with my girls very few out siders no one with colds can see her and she will be 98 in may. i tell u folks people always talk about how tough the disease is, the toughness is when they are in nursing homes and the family gets to see them a few minutes, they die from that. shes been living with me for 8 yrs there are always me there and the girls there. i and others have worked in the medical field. we have seen hospice work and charge. they get 5,000+ per month, for us 3 baths per wk and a nurse to check on my mother. their belief is once u are with them they (pt) is dieing no doctors, no hospitals comfort is correct no fluids, no food. they can control pain if they the patient has a disease that warrants it. costs out of pocket for us about 800 per month

golden23 Jan 2015
Hi University - Thanks for the quick update. I am glad she is home and able to eat. I have no experience with hospice either, but from what I have read here over the past few years, they can administer pain and probably other medication if/when needed, they can counsel family as to what to expect of the dying process and how to deal with it, and more. Maybe your mother is not quite at that stage. I would not want to see a person want food and not be able to give it to them either. Again, my understanding, is that near the end people actually don't want to eat and it is not wise to force it on them, Your mum is obviously not there. Hospice are there to help at the end, and I guess if anyone feels they don't need that help and they can cope with whatever comes, then there is no use. Not everyone is comfortable dealing with a dying loved one on their own. Please let us know how your mum is doing. She sounds like a strong and spunky lady, and I think you take after her.

university64 Jan 2015
she's home and after a day or so she is back to eating human food again. we do make sure she is aware of what she is doing and its fine. as for a tube heard alot of negatives about it. as for hospice other then charging medicare over 5,000 for their services peer month i see no use or need for them.

golden23 Jan 2015
I think your question may have misled some of us. I have no experience with this, but one or two have said that despite failing the swallow test their loved one was able to eat if the food was properly prepared and survived for sometime afterwards. My understanding is that if a person cannot swallow that a tube is an alternative, but that studies have shown that, in fact, a tube only helps in certain circumstances and can bring its own problems. Lindaz said they were able to keep her mum alive for a while by dripping food through a syringe. I liked the advice that Jeanne was given let her husband eat what he could and/or wanted to. Please let us know how things are, ((((hugs))))

jeannegibbs Jan 2015
university64, what has happened in the last 4 days? Is she home now? Have you made a decision about hospice? Bring us up to date, please. We care.

university64 Jan 2015
guys listen she was eating fine before the hospital. the aspiration came when she was vomiting large amounts of thick mucus. thats where the problem ws not the swallowing. the hospital was the one that was worrying about it not anyone else

partsmom Jan 2015
One issue with swallowing difficulties is that it can lead to aspiration pneumonia, as the food that doesn't go down can go into the lungs. If the problem is a blockage in the throat somewhere, and the patient is still hungry and otherwise comfortable, they can be fed into a vein. There are a number of possibilities going on here.

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