My husband, now age 91, has started howling and crying out in a kind of scream, like the famous Munch painting. It seems to be connected to his problem swallowing and tends to occur after a meal, sometimes hours after. I have been pureeing his food and thickening his liquids, spoon feeding him for the most part, alternating solids and liquids to help clear his mouth. He seems OK then, but later starts howling. (He's had a barium swallow test, and his doctor now wants him to have a more lengthy upper GI barium swallow procedure, which I have to schedule.)

He has been having recurrent UTI's, is on antibiotics, and of course needs lots of liquids, so I have been pushing drinks. Overall, he is getting weaker and now can hardly stand without help. He will start to scream when he struggles to move but cannot move his legs, or when he is being helped into the wheelchair but feels out of control. At those times, I sense his cry is one of fear and frustration.

However, he is lucid enough and seems to know what he is doing, and so when I ask him why he is crying out, he tells me he doesn't know. Nothing is bothering him, he says.

It is frightening to hear him, and it is upsetting both to me and to the two part-time helpers who have been caring for him for quite some time. Please, if anyone has had this experience, can you explain what is going on? Is this a symptom of something? Are there medications that would help? (He takes namenda and wellbutrin, and has an exelon patch, as well as an antibiotic for the UTI.)

Thanks,
Doris

Doris, I'm not speaking from experience but just wondering, could it possible be acid indigestion or reflux with foo backing up and causing "heart burn"? Maybe you could speak to his doctor about something like PepCid ac or something like that.

Dorthea

Doris,
I'm not sure anyone will know what's going on during those times when your husband doesn't know why he's screaming and reports that nothing is wrong. But since he reports that nothing is wrong, I encourage you and the hired caregivers to learn how to tolerate it. I think your choices are learning to deal with it or giving your husband sedating medication (eg, Seroquel, an atypical antipsychotic) so he doesn't scream.
Robin

Thanks, Dorothea for suggesting heartburn, but I doubt that is the issue. He has never had anything like acid indigestion, doesn't burp, or complain of slight nausea or stomache. Robin thinks we just have to accept it for "what it is." I have tried asking him to talk instead of crying out, i.e. to say "I'm afraid," or "I need help" or whatever he may be feeling, but while he seems to understand me, he isn't able to use words.(That's probably because his speech generally has been greatly diminished due to the dementia and diminished saliva in his mouth. He has started grinding his teeth when he tries to say something.)

I guess I'll have to ask the doctor about prescribing seroquel and see whether he can tolerate it. I know it's not for everyone.

This is such a terrible, heartbreaking disease for all of us.

Doris

I hope seroquel will help for your loved one as much as it did for Mr B.. I don't know what I would have done without it. Remember [I'm sure the doctor will tell you this], "start low and go slow". The screaming may be just a release of his tensions but I'm sure it gets your attention... quick! Always cycles. I hope you find the right path.

Dorthea

Doris,
I'm not sure your demented husband can understand the entreaties and suggestions. They are, of course, quite reasonable to a non-demented person but the demented have their own reality. Frankly, I think the caregiver's sanity is a good justification for administering medication.
Robin

Hi Doris - I'm so sorry for what you are going through. I am wondering this too - do you really want your husband to have to go through the barium swallow testing anymore? If someone were to suggest that about my 88 year old dad, I would ask, "What purpose would that serve? Would he have surgery if that were the only solution to his problem? Would I put him on life-prolonging meds at this point with this disease?" For us, the answer would be no!
I'd try to make my dad's life and mine as comfortable as possible with what time he has left, and not encourage or allow any more testing. What would be the point, is what I ask myself. If sedating him some would get him more comfortable and make his caregiving easier, I guess that would be the lesser of the evils for me.....
I wish you well in dealing with this.

Doris,
You mention that your husband takes antibotics for the UTI I am wondering if perhaps that could be giving him some reflux issues, I know for even myself some bother me, Just a thought !

I'm wondering about reflux also. It's miserable. I take prilosec and what a difference. Its a simple way to start. When I worked in the hospital if a person would c/o of chest pain, the doctors always started told us to first give an antiacid. I really can't see where it would hurt. Might not help either but someplace to start.
Mary

Thanks to all of you for your suggestions, and especially for your support. I spoke to his doctor about the possibility of acid reflux, and she gave me a prescription for zegerid, which is in the form of a suspension. I am going to try it and see if it makes a difference. I am still doubtful because as long as I've known him (35 years), he has used antibiotics but never complained of acid reflux (whereas I also take a daily dose of zantac which helps me a lot).

As it turns out, the neurologist wants us to bring Philip in before he will prescribe the seroquel. He's so weak now that I am going to ask his personal doctor for the prescription instead. She knows what is happening with him. Today he could hardly stand up assisted, and for the first time he told me that he has a pain in his chest. Matters have escalated so rapidly in the past few days that I am quite dizzy trying to sort out and find the right course of action and treatment.

What a roller coaster ride this is turning out to be...

Doris

Doris,
Since you stated in this last post that this is a rapid decline am wondering if a UTI or other infection has been ruled out? Just a thought!

Doris,
Perhaps he has a new UTI with some new germs that the current antibiotic isn't targeted to treat? Or perhaps he's coming down with a cold?
Robin

Thanks again for your suggestions. It's now five days that Philip has been taking the antibiotic for the UTI, and it seems to be a little better. The urine is not as cloudy, and he hasn't mentioned feeling pain when peeing. The urologist wants to see a specimen after he completes this round of medication to do another culture.

On the other hand, despite all our efforts to get fluids into him (he drank 4 glasses of cranberry juice flavored water with his evening meal), he is not putting out much urine, and it is very concentrated. So I'm sure he is still somewhat dehydrated, and that affects his swallowing because he lacks sufficient saliva to move the food from his cheeks, teeth, etc. I've started cleaning his teeth after he eats to help avoid cavities or infections.

Tonight for the first time he is sleeping downstairs on a daybed in the dining room. He is too weak to attempt going upstairs to our bedroom. It was touch and go this morning trying to move him down, and my helper, who is a strong man trained in physical therapy, told me it was too dangerous to do it again. So in addition to the swallowing and UTI issues, enough to account for the screaming, he has to get used to a new bed in a different room. I'm not suffering from dementia, but I think I would scream if I had to deal with all of that. StiIl my heart aches when I hear him....Doris

Doris

You might consider things that have a high water content. (I sent out an email to the local support group about that, probably in November.) Some examples are JellO and quite a few kinds of fruit have high water content.

It sounds as if he is dehydrated and may have to go to the ER for fluids.

Robin,

That is what his urologist suggested, but I am going to try to avoid a trip to the hospital. I must have read the November email you mentioned and kept it in the back of my mind because it just occurred to me to try jello!

He slept well downstairs last night, and both of us are feeling better today.

Doris