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My brother questioned his Primary Care doc who just blew it off basically. Said procedure to stretch esophagus risky but he successfully had a pacemaker replaced this year. Should he have an eval with a specialist?
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.
This isn't a problem with esophagus, but a normal thing that happens at the end of life with the swallow reflex; it also is worsened with many dementias. Dysphagia is quite common. Even without dementia. Look up "dysphagia and aging" and you will see this. He needs a swallow evaluation. He may NOT be eating a lot anymore and you may be looking at choices of hospice or feeding tube. I agree that he is way too elderly and fragile for the stretching procedures which don't work well in any case.
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.
If it were me, a feeding tube would NOT be on the table (so to speak) at 93. I'm "only" 87, but if I had a single brain cell remaining, I'd opt for Palliative Care or Hospice. My healthcare directive spells that out as does a personal letter that I've updated periodically for many years (probably should be every 6 months now!). I probably wouldn't need a swallow test. If I'm no longer able to swallow normally (more or less), I'm done. Comfort care only!
My mother developed dysphasia over some time as a consequence of a horrific hemorrhagic stroke. For a while she had a puréed diet mostly supplemented by a feeding tube directly into her stomach. A swallow study, called a video fluoroscopy, was done using live X-rays while having her swallow various degrees of thickness liquids. It proved that absolutely nothing was safe for her to swallow. Everything was being at least somewhat aspirated into her lungs. It was heartbreaking to realize after so many losses she’d never experience the simple joy of tasting food again. She was only tube fed the remainder of her life. Get the swallow study done, it will let you know where to go next. I’m sorry you and dad are on this path
Dysphagia in the elderly isn't necessarily due to aging per se. It can be caused, for example, by narrowing of the esophagus due to acid reflux or other reasons. My husband had scoping with esophageal stretching several times when he was in his 80s and it really helped. The scope and stretching only required very mild sedation/anesthesia, and there was no pain or problems afterward. It's not considered a risky procedure unless there are other complicating medical conditions. My husband had had a swallow study first to rule out other problems, e.g., with his swallowing reflex. I will say that his dysphagia wasn't severe in that he wasn't choking or aspirating; rather, because of the esophageal stricture he could only eat small amounts at a time because the food was just building up in his esophagus after being swallowed and it was not moving down as fast or smoothly as it should. (He did have Parkinson's which also impaired his overall gastric motility.) Before ruling out the stretching, I would think there should be a swallow study to see if stretching could be beneficial.
On second thought, if father's Alzheimer's is pretty far along he might not be able to cooperate well enough to do the definitive swallowing study that involves imaging.
I have a bit of a different viewpoint. Were your father‘s wishes ever discussed before his Alzheimer’s diagnosis? Do you think he would want a feeding tube to prolong his life or an invasive procedure to stretch his esophagus? I believe these are important questions to ask, and it’s perfectly valid to not seek further testing if it’s in someone’s best interest or you know what they would want. Hard decisions for sure and I wish you the best.
If I was 93 with Alzheimer's and dysphagia, I'd want hospice to be called in immediately because nothing but death would set me free from the horrors of life at that point. When my mother was 93 and living with dementia, I prayed daily for God to take her and for her to have peace.
Honestly, it sounds like it's time to bring hospice on board and let your father live out his days as comfortable as possible. 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.
I do wish that doctors would explain the reasons for why treatments are done or not done. Without any information, it can feel like our concerns are "blown off".
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.
So true, doctors use us as guinea pigs for treatment and results without ever considering if the treatment is in our best interest or just to prolong the experiment.
We all need to make our wishes known and have an advocate when dealing with the machine of medicine.
IMO a PCP/GP no a little about everything and alot about nothing.
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.
Going through this with my mom. She will be 90 in July. She has had pneumonia on and off since Dec. She had two hospitalizations in Jan and feb, was sent to a rehab for 3 weeks and is now back in the hospital. The rehab ordered the swallow test and it showed she has "silent aspiration" they did an endoscope yesterday took some biopsies. We will be discussing hospice with someone this afternoon. (She refused a feeding tube.) We are bringing her home. She has vascular dementia, but understands most of what is being said. She said she does not want to do this anymore, but then implies she wants to do PT and try to get back to where she was before she went to the hospital. Hospice does not offer PT. She now needs assistance going to the bathroom, transferring to her chair and with bathing. She wants me to make the decision.
Having a feeding tube (peg tube) placed in my mom’s stomach saved her health. She has bad dysphagia (difficulty swallowing) and was malnourished. Using the peg tube ensures proper nutrition. It had been a lifesaver for us and my mom is so much healthier. I’m shocked no one on your care team recommended it. See a gastroenterologist for sure.
Yes, a PEG will surely prolong life. 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.
My daughter is an RN and does not recommend feeding tubes to sustain a life of an elderly person, especially suffering from Dementia. She had a patient who I think had a sever stroke that left her bedbound. The family had a feeding tube inserted to sustain her life. Poor woman could do nothing but move her eyes. And once the tube is inserted it won't be removed because that would starve the person if they do not have the ability to swallow. Only Hospice gets the tube removed.
Horror!! That expresses my thoughts (speaking for myself only) when it comes to sustaining "life" (existence) in the very elderly (which includes me at 87) via tubes and other such devices when our bodies have shut down or will do so soon--if allowed to. IMO, there is a huge difference between placing a temporary tube in a basically healthy 50 Y/O who has a recoverable medical condition vs. an 80+ Y/O who is very ill, weak, perhaps in pain, debilitated, possibly with dementia, and highly unlikely to recover any kind of functional life.
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.
Yes, Yes Yes! IF you feel he is still ABLE to cooperate look for the best Speech Language Pathologist (SLP) with a lot of experience ins swallowing. All SLPs receive training in swallowing, but not all are experienced. I have known a couple of 100 year olds I felt could still cooperate with anything!
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:
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.)
I am 74 and had the procedure of stretching my esophagus and inserting botox in the esophagus muscles, it was not even an issue ,and I have had no trouble or weight loss sense. I wad ok with the 23 lbs I did loose :) I would suggest the issue of having to sedate him though with his memory issues.
Some people stop eating as a part of the end of life process. 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.
Two things not addressed here. 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.
See a specialist /get a 2nd opinion 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
Ask about medications that increase appetite. Also ask if placing a PEG tube (feeding tube that is surgically inserted through abdomen into stomach) and tube feedings are an option.
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
My opinion, no to the feeding tube. Also, my 95 year old mother has it written in her health directive.
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..
Unfortunately, you will need to accept that he’s end-of-life. Give him as much food or drink as he can tolerate. It is very difficult to watch our LO waste away but it is part of the last days. My mom is 90 years old and in the same situation. Once upon a time, she was a healthy plump mom of 150 pounds. Today with dysphasia, she is 70 pounds, just a tiny, frail lady. It is hard to watch and impossible to understand what I can do to make her better. I’m accepting it and praying that her suffering ends soon. My heart goes out to you as you face these difficult times.
he’s 93 with dementia. Would his younger, healthier self want to live this way? I’m guessing not. Who would, right? There’s no quality of life so at best you’re prolonging his suffering by using whatever extraordinary means a specialist would employ to keep him alive. Call in hospice. Let him go to whatever is next. It’s really hard with dementia. It’s also hard to imagine life without our parent - but his body and brain are nearing the end. Let him have peace.
I'd have no problem living that way at his age. If you know he wouldn't, call some hospices and interview them. Otherwise, always err on the side of life.
Lots of reasons Dad could be losing weight. If overall health is stable, then maybe he no longer has normal absorption. Increasing what he eats or supplementing won't do much. Love him and make him as happy and comfortable as possible.
As dementia patients decline weight loss is typical. 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.
The fact that they replaced the pacemaker for a 92 year old with dementia/alz is really sickening. What are you and your brother trying to accomplish with taking dad for procedure after procedure? Your father is dying. Allow him to do so gracefully and without taking him to specialist after specialist and stretching his esophagus.
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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.