My Dad refuses to follow doctors orders and wants me to take care of him at home. Any advice?

Lili, he does have dementia if he won't follow any MD orders. Don't kid yourself. Taking him out of the NH would be a BIG mistake. You can't do the work of three shifts of nurses. Many have died trying.

lilili, this isn't a very popular opinion, but I agree with your Dad. Let him eat what he wants to. It may make him cough. He may aspirate food into his lungs. This might even result in his death. But that risk should be his choice. Is the risk really worse than being skin and bones and frail in a nursing home bed?

For me, this is not hypothetical. My husband (Lewy Body Dementia, related swallowing difficulties) was advised to avoid all breads and go on a soft diet, after having a doctor-ordered swallowing test. We made a valient and diligent effort at this. I thickened all his liquids (including wine and beer!). I served only soft or pureed foods. And he got more and more depressed. Finally he said to me, very apologetic, "I just can't do this any more. I'm not going to eat this way for the rest of my life. I am so sorry, but I just can't do it." I conveyed this to both his geriatrician and his neurologist who ordered the test. The geriatrician said, "Well, I would have opposed even having the test. In this situation, with a terminal condition, he should be eating whatever gives him pleasure." The neurologist said, "Oh I'm so sorry I didn't make it clear. I just wanted to know if there were any mechanical things he could do to improve his swallowing, Like tipping his had down or up, etc. I certainly don't want to see him on a diet that makes him unhappy! Let him eat what he wants!"

And that is what he did.

Your father is frail. Probably the nursing home is really the best place for him, with lots of visits from family. What I would do is lobby to get the doctor's order changed. Visit with the doctor directly. Explain the situation and beg to have the food restrictions lifted. I would go so fare as to change doctors if necessary, but let's hope it is not. Offer to sign a waiver at the nursing home acknowledging the risks of eating a normal diet and absolving them of responsibility on that issue.

I always included something naturally soft in my husband's meal -- mashed potato, pudding, over-cooked hotdish -- so he would have something to eat if the regular food was particularly difficult for him that meal. But he went back to having soft shell tacos and pancakes and sandwiches. And his depression lifted.

Be sure that you explain the risks to your father. Or have the doctor or a nurse or a speech pathologist explain them to him. But I would certainly let him chose his own risks. If you have to take him home to do that, I wish you much success. But I really think fighting to allow him to have the menu he wants and stay were he is assured of appropriate care is the better route.

My husband found that certain foods were just too difficult to swallow, and he gave those up. But at least it was his decision.

The speech pathologist who recommended the diet had a standard response to my announcement, "It is, of course, up to each patient to make their own decisions," but her look and tone conveyed "Lady, you are nuts and/or a terrible wife." I respected my husband's decisions.

I predict a wide range of responses to your difficult situation. Think them all over carefully, and decide what works for you and your father.

The fact that your Dad is on a soft food diet means there is a medical problem, thus he wouldn't be able to eat and drink what he wants even if he did move back home.

If he does move back home, will you be able to hire caregivers to be there on a 24-hour basis since he is so very frail and unable to live on his own. Is he paying for the nursing home out of his own funds or is he using Medicaid? If he is using Medicaid, they won't pay for 24 hour care if he moves home, that means you will need to fill in the missing hours.