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I am not medically knowledgeable, but I do know my brother has , pre cancerous espogus, he is only 48, he has to have his espogus scraped every month or so, for probably a year. I now it's extremely uncomfortable, and painful. He is miserable that week. Can't eat at all. It's really hell for him. I'm not sure if the procedure is anything like what my brother goes through. But I will say if it's any where's near what my brother deals with I would never put a 93 year old though that.
I'm sorry, I know how hard this is, but it may be time to see about hospice.
Time for asking for a gerontologist, a geriatric specialist. A swallow eval is easily done by an OT person. They will then recommend diet.
If this isn't addressed safely your father will be swallowing food into his lungs and getting aspiration pneumonia.
I am sorry. This is one of the progressions in aging that can happen. You may likely have some decision making soon.
Best of luck.
If any of his food or drink goes into his lungs he will develop aspiration pneumonia and it is in most cases fatal.
My late husband who had vascular dementia developed aspiration pneumonia in Nov. 2018 and he came so close to dying with his BP at like 48/26, and would have died if I hadn't asked the doctors to try and save him.
Well they saved him, but he developed sepsis and septic shock and came home completely bedridden, under hospice care, and was never the same, and he died in 2020.
And he had to have thickened drinks and pureed foods for quite a while until he eventually could eat some soft foods as well. His neurologist said that because of my husbands dementia that his brain was forgetting to tell his throat to close when he ate or drank, thus allowing both to go into his lungs.
I can only guess that this is what's going on with your father. I wouldn't continue to let him suffer. There is no happy ending with dementia.
Bring hospice on board sooner than later.
God bless you as you travel this difficult road with your father.
However, I think that it is likely that intervention may not be in your father's best interests. Would intervention increase your father's quality of life, or just the quantity of his life?
There's a lot to be said for comfort and dignity, which is what I want for my mum, as well as for myself in my old age.
We all need to make our wishes known and have an advocate when dealing with the machine of medicine.
Your father needs a swallow test. Food can be aspirated and cause pneumonia.
Your Dad is 93 with Dementia. His brain is dying. Not being able to swallow is the first sign his body is shutting down. The body loses weight because food is no longer being absorbed into the body correctly. I would not go the way of a feeding tube for a 93 year old. You may want to talk to the Doctor about Hospice.
I as a retired RN know that. And that is why it has long been written in stone on my advance directive that I refuse a PEG, NG, TPN or any other "tube feeding" and do not wish to live beyond the point I can feed myself.
For me, the goal is not to live long, but to live with good quality so long as I must live.
At 81 I am more than ready to go. I do not wish any artificial administration of foods or fluids to prolong suffering at life's end.
I would say your option is a good one if this is what you know your loved one WANTS or expressed he/she WOULD WANT in these circumstances. I am glad that you have not had problems with diarrhea, bedsore, infections, and etc which are so common in these cases, as well as having patients pull out tubings which may be stitched in place. That is quite common.
So this is an option. It is one that care teams may suggest, hopefully giving the benefits and limitations, and hopefully encouraging family to face that end of life is a reality, and often the prolongation of life is a crucible of suffering for those we cannot allow to pass.
Hopefully, ALL elders can be strongly encouraged to set forth in writing and verbally what their wishes are in respect to "heroic measures" at or near EOL. Some may want "everything done"; others will opt for minimal intervention and comfort care; still others' wants will be somewhere in the middle. Anyone who questions my wishes can read my posts on this website--they're here in writing as well as in my attorney-prepared healthcare directive and a personal letter.
If he has never had a "Modified Barium Swallow Test" or a "F.E.E.S. Study" these are the best way to find out what the issues are. He may not even need his esophagus stretched (unless a test has shown otherwise).
I have found most doctors do not have a clue what an SLP is able to accomplish if given the chance. My father's NH doctor refused to prescribe a swallow test because he knew my father did not want a feeding tube! (In 2008 before I learned about swallowing or how to advocate better.) Swallow tests can identify the issue and appropriatley treat to try avoid a tube or starving. There are so many issues that can cause swallowing problems because swallowing starts from the time you pick up your spoon and doesn't end until the food hits your stomach... IMHO.
My husband has had swallowing issues since at least 2014 with various therapists using all sorts of techniques. We decided no tube until if/when he had his first case of Aspiration Pneumonia which happened in 2016... with sepsis. He was NPO for a long period of time (due to treatment options never being offered), but also has had long periods where the tube was only used 1x daily for better nourishment along with two modified meals by mouth. We had to stop therapy as a result of the pandemic and had to go NPO again last August after his last case of pneumonia. Our therapist who originally helped him eat again moved during the pandemic and we just now found another very qualified therapist.
After therapy plans using all sorts of gadgets with previous therapists, our current one is using a technique described in these links:
https://www.empoweredvoicerehab.org/mcneill-dysphagia-therapy-program
https://dysphagiacafe.com/2015/11/19/mcneill-dysphagia-therapy-program-10-years-of-research-experience-with-an-exercise-based-dysphagia-rehabilitation-approach/
https://fdi2.com/about
We were advised in 2014 to thicken liquids after his very first swallowing test and have never been advised anything different even after a multitude of tests over the years. This time, after a couple weeks of starting therapy he was having small sips of water without thickener! I was always told no ice cream because it melts down to thin liquid! He has started enjoying small tastes of ice cream! It has been amazing for us. I have always been told "swallowing is the best exercise" but this is the first time I have seen a program based that statement!
I recommend anyone reading this with a LO having swallowing problems look into finding a certified therapist in this plan. Do not wait until you KNOW there is an issue to check it out. Coughing, throat clearing, minor choking, etc. may be a sign of a swallowing issue. I took my husband to the doctor the first time because it seemed he just couldn't get over a cold... which maybe he never even had! Fortunately, our doctor recognized it as a possible swallowing issue instead and referred him for his first test which confirmed it.
I really believe... had this been our first experience, along with better oral care, it may have prevented a lot of issues and may even avoided several hospitalizations. However, like a pulmonologist told me... you can get aspiration pneumonia simply from your saliva so nothing is fool proof to prevent a trip to the ER!
All this to say, a PEG tube in my husband's case was the best decision even with our ups and downs for 10 years. Fortunately, we had a friend who had a tube and with therapy in a nursing home he was able to eat again so I knew it was possible. (Unfortunately, not necessarily in all cases.)
If that is not the issue here, perhaps he is otherwise healthy and plans to live many more years, then I would ask the doctor for a referral to a specialist who could insert a GI feeding tube - directly into the stomach.
That is, if your father is uncomfortable swallowing foods due to a problem with the esophagus, a feeding tube will allow you to get the proper nutrition into his body.
Is he getting a minimum of 2200 calories a day? He might need much more to make up weight loss.
The second is if this is a sudden weight loss, he might have cancer somewhere.
it could be something else they’re missing - test for C
I imagine thick shakes would be hard to swallow
it sounds like something more
be tactful but don’t accept one persons opinion the medical world are full of missed signs that if caught early could have helped
I do not want to sound cruel although the question needs to be asked - for you to consider:
What is your intention / objective?
It sounds to me like you want to 'keep him alive' - which, emotionally, I can understand, although is this the best decision for him / the quality of his life?
Certainly loss of appetite, losing weight is very common as a person ages, declines. Yes, I did my best with my friend (bringing him pizza, eclairs, cheesecake... yet this was for his (almost only) enjoyment.
I do not understand why you are asking us about an eval with a specialist. If you want to schedule it, why don't you just do it? Perhaps you are asking 'us' how far you should/could go to keep him alive which would then mean you would ask a specialist for an evaluation.
Perhaps give us more information.
How you feel?
how your dad is cognitively speaking / Health wise
Gena / Touch Matters
She also had aspiration pneumonia in the fall. She needed to be on thickened liquids and moist food for a couple months. Somehow, her throat muscles became stronger and she could eat and drink normally , except food like meat needed to be cut.
The problem when she was on a thickened diet was she didn't like the thickened liquids, except the prepackaged cranberry juice. I tried to make sure she had foods that she liked. My Mom lost weight, but she's doing great now.
Best wishes. I know it's a struggle..
It is one of the signs that Hospice will take into consideration when recertifying someone for Hospice.
PLEASE do not have a feeding tube done.
As the person declines and they are nearer to end of life the body does not need nor use food the way a healthy person does.
He does not feel hunger the way you and I do.
If you try to push food and he is not using it, digesting it the food will cause problems. It will sit long in the stomach and may end up blocking in the intestines and as it remains there it will not breakdown the way it should and may make him sick. Or he may begin aspirating the food. This can cause Aspiration Pneumonia.
Fluid that is not needed may settle between the layers of skin or may cause problems by causing swelling in the legs and feet.
continue to offer food and water (thickened) but if he refuses do not force it.
Use swabs to moisten the lips, gums and mouth.
At this point I would contact Hospice as he would probably qualify for the service.