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My father had a severe cardiac episode six months ago and was in the hospital & rehab for 2 1/2 months. When he was in rehab and subsequently released he wouldn't eat. He was declining and very weak. He was put on Lexipro (an antidepressant) since he was depressed but also because weight gain is a side effect of the Rx. It didn't help and he continued to decline. The dr. suggested a feeding tube, surgically implanted into his stomach. While we were opposed to the concept, it was the only way to keep him alive and get him strong...that took place about 4 months ago. He was also put on another anti depressant, which was suppose to give him a voracious appetite, but it apparently hasn't worked. He was in rehab again for 2 months and returned home in October. Occasionally, he will eat a good meal, but this is rare. He seems to get belligerent when we encourage him to eat. We've explained why its important and where he has been. We've given him a variety of foods - things that he loves. We always ask what he wants and if he doesn't know, we try to make good choices for him.


On a positive note, he has become much stronger, coherent and his condition has improved considerably, outside the eating issue.


We really want him to get off the feeding tube, but if he doesn't gain more weight back and maintain it, we're afraid that he will decline again. Any info/suggestions would be appreciated.

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This is a difficult situation. You're doing everything right, but things still aren't working. If it's possible to get your dad another appointment with a psychologist or another type of health-care professional who might be able to get him to talk and to whom he's willing to listen (physician, nurse, nutritionist), maybe you could try that.
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FGRINSTIX Dec 2019
Thank you, Rosered6.
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Your father may be done living at this point, and that is something to take into consideration. If he doesn't want to eat, he is not going to eat, feeding tube or not. Dementia is a terrible disease, and one that I would not want to be burdened down with, never mind having my life extended for ANY reason whatsoever!!

I will never forget having the DNR conversation with my father many years ago. I insisted he should be given CPR in the event his heart stopped; he insisted otherwise. The doctor took me aside and gently explained to me how violent CPR actually IS, and at an advanced age, it's not really a good idea. From that moment on, I realized that taking any extreme or heroic life-saving measures for either of my parents was not really in THEIR best interest.

Best of luck making the right decisions for your father.
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What I'm seeing is the side effects not only of the cardiac event and rehab, but of the limited ability to eat.   

Before the surgeon inserted a (PEG?) tube, was your father ever diagnosed with dysphagia, a swallowing disorder?   From your description of his reaction and interaction with eating, I suspect that might be involved.    If it's not, I can understand why having a PEG tube wouldn't improve your father's situation.  

Was a speech therapist or pathologist ever involved?   And if so, was a swallow study done, to determine if your father was in fact aspirating his food?   If so, and if he's dysphagic, talk to one of your father's doctors and ask for home care with a speech therapist.     The good ones will determine a level of food that's tolerable, which you can prepare or buy (although they're very expensive meals).   

He/she can also provide your father with exercises to improve his swallowing function.   

Since you haven't mentioned dysphagia in conjunction with the swallowing tube, I have the feeling it may not have been factored into his D/X and assessment.  

Eating should be pleasurable, but eating unattractive mush doesn't innately stimulate anyone - it's just plain ugly.   We had to work a lot to make food palatable, but it was worth it in the long run.
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FGRINSTIX Dec 2019
Thank you for Your are response. Yes we had extensive tests with speech pathologists and swallowing and no problems were identified. He seems to like to eat occasionly but very rarely. I did notice over the last couple of years his eating habits changing long before the cardiac episode. We're bewildered as to what to do. I don't know whether to keep the feeding to in or remove it and let nature take its course.
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There was a gent at my mother's nursing home who decided he had had enough of life. Staff dutifully brought him to the dining room for all his meals, asked him about his choices and and placed food in front of him that they thought might be tempting, but he got belligerent if they tried any further encouragement - I personally wondered why they persisted on forcing him to come out for meals when he had made himself abundantly clear. Aside from his heart troubles your father is 86 and has dementia, which in most forms is itself a terminal disease. He has been through the rehab but is not improving, in fact it sounds as though his quality of life is decreasing, but with a feeding tube he has lost his ability to assert himself in the same way as this man could. I found this Teepa Snow video quite moving, you may too:

https://www.youtube.com/watch?v=mNJxq4J5kYY
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FGRINSTIX Dec 2019
Thank you For your response. Actually he seems to be improving. Hes much stronger and coherent and is beginning to re engage with life. Hes just belligerent about eating and only wants to eat a very small amount. He doesn't like the feeding tube but complies with the feeding because he seems to acknowledge the importance of receiving nutrition although he doesn't want to eat. I'm totally perplexed!
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Depression is common after a heart attack. A wonderful active family friend had a heart attack about 6 years ago. No dementia, out of the blue. He fell into a deep depression. He also hated the side effects of the medication he needs to continue taking to stay alive.

Finally his wife was able to call a friend who is a cardiologist, but not his doctor over to the house. He talked with the husband about the side effects of the medication, what woudl happen if he stopped taking it, lowered the dose etc. Between them, they decided to lower the dose of the medication. My friend knows by doing so he will have a shorter life. He also knows that his quality of life vastly improved and the depression lifted over time.

Does Dad have a religious figure (pastor, priest, rabbi, etc) who can come talk to him? Has Dad discussed what he wants? Is he ready to die, or does he want to live on? How does he want to live or die?

Does Dad have an Advance Directive?
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FGRINSTIX Dec 2019
Thank you For your response. He has expressed a strong desire to continue living. To get back into life. He says he feels great although hes hardly eating. He did put on weight since we got the feeding tube and has gotten so much stronger. He unfortunately he doesn't have someone to talk to on that level. We had a psychologist talk to him when he was at rehab which seemed to help but those sessions Ceased when he was released. I was diligent to follow through with everything the psychologist suggested but things still haven't changed. Sigh...
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