husband convinced all food expired so won't eat

BKay

Hello, feeling so alone and discouraged today as my husband (early onset Alzheimer's, stage 5-6) is refusing to eat anything and he's slipping more and more into his own skewed reality, talking to imaginary adversaries and acting agitated and angry, new behaviors over the past few weeks. Have nowhere to turn so thought I'd write here.

Wondering if any of you has a work-around for refusing to eat?

He says all the food in the house is "expired" or "bad." I know logic won't work, but of course had to try showing him expiration dates and opening brand new packages in front of him. He just says "No! It's expired." I've made him scrambled eggs, pancakes, a grilled tuna sandwich, his favorite cereal - he has refused all of it. Yesterday he ate two eggs, two yogurts and a fruit smoothie all day. Refused ribeye and baked potatoes for dinner and wouldn't even drink his milk. This morning I tried agreeing with him by saying "Okay, I threw out all that expired food, so now everything here is good." He didn't buy it. I think I'm most upset that he has trusted everything I've done or said for the past 6 years of this hell but now that's changing.

The food paranoia started a few weeks ago when he started hiding the bread in the laundry hamper because he thought the label on it meant that it was old. Any food items he sees on the counter go into the laundry hamper now - oranges, cookies, my salad with dressing on it, stir-fried rice -- if I'm not watching, it all gets either dumped in the hamper or hidden in a bathroom cupboard. This started about the same time as talking to his mirror image alternatively as a friend or foe and talking to some imaginary person who apparently is up to no good, as my husband repeatedly says "That's bad. That's really really bad." 

My husband also has stage 4 lung cancer so can't afford to lose much more weight. He's been on many drugs since we found the cancer two years ago, with varying levels of success and side effects including additional cognitive loss. He's been on the latest drug for two months, so that may be a factor but it seems like the increasing break from reality would have happened sooner if the latest drug was the main problem. Last summer's chemo was awful for him and could still be affecting his thinking. So many variables. He doesn't take any other medications. 

He just had his blood checked at the cancer clinic and his white blood cell count was fine so no infection indicated. 

Going to see if I can get him to put on his boots (hates all his footwear now) and go to a drive-through and order something to see if he'll eat something out of the house. 

Thank you for listening. 

Jo C.

Hello BKay; this is actually a dynamic I faced with my own Loved One (LO) and it was a difficult situation.  I noticed in your Profile you mention you both had careers in the "natural resurce field," I have no idea what that may have been, but wonder if it was a lot about "environmental issues."  Those tapes could be a bit skewed and be cycling around and around in his mind in what it is able to do at this point in time.

However, this problem issue really has two parts.  You share that your husband has Stage 4 Lung Cancer and is receiving medications in treatment; those are powerful meds that  may be having the greatest effect on what is happening in addition to already having Alzheimer's Disease which increases vulnerability.  It seems it may now be about the quality of life and not the quantity - do you think it is time to revisit the actual treatment plan with the physicians re the incurable Stage 4 Cancer approach considering what is happening?  Since you are aware of the diagnosis and treatment, you are in all probability very aware of all that encompasses so I will not go into all of that.  The following comes from a Healthline paper and has good input: 

"A diagnsois of stage 4 lung cancer indicates that the cancer has spread to the other lung or more distant parts of the body. It is the final stage of lung cancer.

There is currently no cure, but certain treatments can prolong life. It may be that the side effects of these will eventually outweigh the benefits, and a person may prefer to have palliative care. It is important to talk about every option in detail with the doctor before making a decision.

Having late stage cancer affects a person physically, mentally, and emotionally.  Seeking support from friends, family members, healthcare providers and cancer support groups can help."

In our situation, my LO did not have cancer and was not receiving such harsh meds.  In our instance, the refusal to eat anything was based on delusions that came from dementia alone; it was a monster of a challenge.  All the food was "rotten and no good."  A cup of green tea would be the only thing accepted.  It was exhausting.

Finally; one day, I had a helper my LO was familiar with come to the house to, "visit," actually to help refocus my LO.  As my LO harped on all the rotten food, I said, "You are right; I'm going to get all that food out to the trash and then go to the store and buy all fresh and new."  I used the plastic store shopping bags, emptied a bunch of items from the frig, about six to eight bags worth . .  .  donned my coat and left saying I was going to the trash to dump the stuff and then was going grocery shopping.

The helper stayed; she engaged and refocused my LO.  I stayed outside for 20 or 30 minutes, then briskly walked back into the house, speaking non-stop while briskly walking to the refrigerator . .  I commenced putting the very same groceries back into the frig while saying that I was SO glad to have gone to the grocery store today as they had SO many things on sale and I got some great stuff including fresh fruit and it was much cheaper because of the sale. The helper continued to refocus my LO onto other things.  In our instance, it worked very well and my LO began to eat again. Not big meals, but small ones sometimes with snacks in between as willing.

I have no idea if your husband would respond in  the same way; if he is still too high functioning to be able to accept that approach, it may be time to have him see both his cancer specialist first and then his dementia specialist for medical assistance with his signficant delusions which have begun to destroy his quality of life; in all of this he is suffering not only believing all the false delusions, but actually feeling them.

Truly; I am so sorry this is happening; it is a lot on your plate and you are lovingly doing everything you can to assist and support.  It really is time to step outside the usual and obtain the knowledge, skill and support of the specialists; especially, initially the cancer specialist who needs to be informed of the changes in your husband.  If this were only an Alzheimer's issue without the cancer diagnosis, medication would be the answer for consistent delusions that do not respond to lesser measures; however, that being said, the most effective meds for delusions are very strong and in all probability cannot be prescribed in addition to the powerful cancer meds.

I so wish there would be better input and feel so bad for all that is happening; hopefully the physician specialists will be able to do more to make a difference.  Please do continue to come and talk to us; we are all here in support of one another and we will be thinking of you and we really do care.

J.

BKay

Thanks so much for your thoughts, Jo. It sounds like you faced the same issue! It's encouraging to hear your LO came through it okay after your throw out/shopping activity. Great idea!

I thought the drive-through plan was going to work, because when we got to KFC, he said he wanted a chicken sandwich and some fries. But when we got them and unwrapped the sandwich, he set it on the floor of the truck and wouldn't take a bite. It's all I can do to stay calm and encouraging - trying so hard not to make this a power battle but my anxiety is ever increasing. He ate a few fries and half of one of my chicken strips, at least, which is all he's eaten all day. 

We went grocery shopping and he picked out yogurts and ice cream, etc., but when we got home and I offered him one of the new yogurts right out of the grocery bag, he took it and hid it in the laundry hamper.

I appreciate your pragmatism about the cancer and quality of life. It's a weight I've been trying to balance for months now - how much treatment to accept, whether the benefits outweigh the costs. It's a horrific responsibility to carry for someone else, even a spouse of 34 years. Yes it's horrible to live with moderate to advanced AD, but it's also horrible to die of lung cancer. If it were me, I'd have sought physician-assisted death with dignity while I was still capable of thinking, but my husband never could fully acknowledge his AD let alone make plans for his own future. Up until recently, his cancer was in check and he could enjoy many aspects of his life, such as good food, even with AD. 

Yes, I will for sure check in with our palliative care doc and the oncologist to see what they think. Thank you again for your thoughtful suggestions and just for being there to listen and share your experiences.