My husband has dementia, recovering from aspiration pneumonia, UTI, sepsis was hospitalized for a month. Staff want to run tests. Advice?

I just went through this with my husband. He was 911-Ed in early January. In the ER his heart stopped and after 20 minutes of chest compressions, he was brought back. He could not breathe completely on his own and was inctubated for two weeks. He was diagnosed with influenza, pneumonia, sepsis, COPD. A-fib and in the ER had seven bags of antibiotics hanging. He was responsive but just barely. They did a multitude of testing in him in order to treat him as best as possible and quite frankly, to make sure they were doing what they needed to keep him alive. At more than one point, we thought their efforts would not be successful.

I trusted the professionals. When they wanted to do tests on my husband, I trusted them to know what they were doing. When he couldn’t tolerate a test, they stopped. They understood his condition and what he was capable of.

This is an option for you as well. I found the more research I did on his condition and those unpronounceable tests, the more stressed I got. But, having said that, I did speak extensively with his doctors and nurses. They helped put my mind somewhat at ease.

Sending good wishes to you and DH. I understand what you’re going through.

Ask the doctors what information they want from the tests and how your husband's treatment plan will changed based on the test results. Most of the time doctors have good reasons for wanting specific tests; occasionally there may be a little overreach but you won't know unless you talk with them. Years ago the doctors wanted my grandmother to endure a painful test but stated treatment would not be any different regardless of the test results, so we declined that one test. I recommend when in doubt, trust in the doctors judgement.

My mother in law had both these done (after two bouts of pneumonia) and it was determined she was aspirating food into her lungs. From then on her food was pureed and solved the problem. Neither test caused her any discomfort. She was 93 with mild dementia.

See if you can speak to the speech therapist and/or the specific specialist(s) directly involved in what’s happening during his swallowing events and therapy.
You DESERVE an explanation about what will be happening during the evaluation and why the information acquired will help provide your husband with the kind of treatment he needs.

Don’t be intimidated, please. Your role as a loving spouse may be more important than anyone else on his team, and you ARE a part of the rehab team. Ask questions about the explanation if you don’t understand something, and also ask how you can facilitate and support his care at home, as it relates to what the tests reveal.

His condition is obviously frightening, and you are entitled to as much info as you can handle. Take notes, ask for what’s available online so that you can review online what has been presented to you.

If you choose that he not be tested at all he may wind up missing out on alternatives for swallowing/feeding that could keep him safer from symptoms and cause him to be less comfortable and suffer more subsequent events of aspiration PNEU.

This is complex and overwhelming stuff, and he is lucky to have you as his caregiver, ally, and spouse. Be good to yourself, and trust yourself. ALL you can do is your best.

My MIL who suffered from a neurodegenerative illness also had trouble swallowing. A speech pathologist was able to determine that she needed mechanical soft food, swallowing twice after each bite, and nectar-thick liquids. That worked.

When she was re-evaluated by the speech pathologist 1.5 years later, her dysphagia had become more severe and the speech pathologist recommended pureed foods and honey-thick liquids, which also worked.

Eventually, her dysphagia progressed and she choked anyway and aspirated the food. My MIL had already decided that she never wanted a feeding tube of any kind. She understood the risks.

I would first see a speech pathologist before stampeding toward swallowing barium and sticking tubes down his throat.

You should absolutely have an understanding of what benefit the tests will be before you agree to them. Are the results going to change anything in his treatment plan? Also, keep in mind the bigger picture. Is his/your goal to maximize the length of his life or to maximize quality of life? Either is valid, but if quality of life is the goal, then you'll want to understand if and how these test results and possible treatment recommendations fit in with that. If the treatment isn't something you'd pursue anyway, then you don't need the tests.

Uunless it is a Life or Death reason to run any more tests Don't Do It.
When my 95 yr old Father was in the Hospital they wanted to run everything. I had them treat just the symptoms which he only stayed a few nights and had to have a Cathiter which he still has to wear.
So, all I would allow is to hydrate him, give antibiotics.

They all want to run tests because that's how Hospitals make money.

They would ask me to run tests that whatever the outcome wouldn't help my Dad at all.

Or the outcome would have been an operation and I would say isn't he too old for an operation and of course they had to say yes he was too old for an operation then I said then why do the test, ect.

Please Do Not let them do this test.

Your Dad is trusting you to make his decisions for him.

Would you like this test done on you.

Ddon't let the Ladies and Men in White make you think anything they present to you needs to be done.

Aspiration pneumonia is common with dementia's. The throat has a "flap" that will close when food is going to the stomach and not allow it to enter the lungs. With dementia the body sometimes does not recognize thin foods as a food and will not close off the airway allowing foods to enter the lungs. The solution is to thicken thin foods, puree or finely chop larger foods and to monitor eating.
The thickening liquids can go from nectar thick all the way to pudding thick depending on the person. Towards the end everything my husband consumed was pudding thick.
I would not put anyone with dementia through the testing process.

It takes incredible amounts of time to feed someone with Alzheimer's disease -- before I organized a feeding tube for mom it took 1-1/2 hours to feed her *per meal*. Trying to maintain her physiological needs consumed my life for years. The diet was soft, and liquids thickened. Do not ever use meat because they can choke on it. Soy and dairy products fulfilled her protein needs.

If your husband is in a nursing home you need to feed him because they do not have that kind of time to spend on one patient. If feeding is hurried they CAN and will aspirate.

Now mom eventually forgot how to eat and swallow entirely and became dehydrated (thick-it would not be enough to hydrate her) so instead of watching her slowly die of dehydration (even under Hospice it can take 2 to 3 weeks) I got the PEG tube put in and it was just a 10 minute surgery so hospitalization was short, and mom did great. Her needs met she was incredibly comfortable to the end; ironically other natural causes killed mom--it was not her Alzheimer's; in fact mom's health radically improved after the PEG tube was put in. BUT you have to change the dressings DAILY and it takes a lot of care to prevent the PEG from clogging up. Mom never had aspiration pneumonia; in fact to the end her lungs were clear. Aspiration can still occur with feeding tubes if proper interventions are not observed.

Oral care is essential in all cases, tube feed or no tube feed. ***DIRTY TEETH ARE A NUMBER ONE CAUSE OF ASPIRATION PNEUMONIA** due to bacteria accumulating in the mouth and saliva goes in the lungs. You MUST brush their teeth and preferably water pic too or at the very least use periodex swabs to kill mouth bacteria.

While I was still working (at a pharmaceutical company), I handled many calls from physicians, nurses, other researchers. etc. Occasionally there was a request for information that would be very time-consuming to gather and, in some cases, would not appear to be of any practical value to the requester. The leader of our group advised asking "how will you use this information?" and then devote the time and effort to obtain and provide it only if a reasonable answer is given.

I believe caregivers should ask the same question when an expensive, unpleasant or potentially harmful test is recommended for a person for whom the results would appear to be of little or no value.

Ask for them to have somebody do tests for which foods he can eat/drink safely- a swallowing evaluation. Usually this is done by somebody trained as a therapist either through dietary department or physical therapy department. The evaluator will try different thicknesses of food to determine the "best" thicknesses he can swallow safely - less risk of aspiration pneumonia. There are lots of thickeners that can be added to food and fluids to achieve the correct thickness. The evaluator will also determine which types of cues and assistive devices would help him in eating or drinking. Of course, anybody at risk of aspiration should be supervised for all meals and snacks.

My grandfather had bouts of aspiration pneumonia the last few years of his dementia. My grandmother never had a problem with eating or drinking. It depends on which areas of the brain are affected.

My mother developed dysphagia and struggled with food coming backup. At 88, with Alzheimer’s, the muscles in her esophagus didn’t work right consistently. She’d aspirate intermittently regardless of the food or liquid consistency. She sat upright, would cough, swallow, cough, and did ok. She had mod. barium swallow tests and even an endoscopy to see if there were obstructions in her throat. The Dr. opened two constrictures in her esophagus which helped for 3 months, but she eventually succumbed to aspiration pneumonia. She told us she really appreciated eating and drinking things she liked, and her Dr. allowed it b/c the texture didn’t really make any difference. I’m sorry you’re going thru this; it’s so difficult to watch a loved one struggle.

My Father is 92, with Parkinson’s, and he has trouble swallowing. His only doctor is the family physician he has been with for 30 some years, per his choice. His doctor said if he took these tests, he would fail. So it came down to quality of life vs. quantity of life. My Father chose to be able to eat regular food, with modifications like super tender, or in gravy. But there are no liquid thickeners, because he just will not drink at all.

That decision was made four years ago, so far so good. No aspiration pneumonia yet. Just another perspective.

Talk with the staff to tell them your concerns and that he may NOT be able to endure these tests.

As a geriatric social worker, I think you may want to consider what will your decisions be if the tests have a less than desirable outcome. Aspiration pneumonia typically indicates a decline of function of the epiglottis which is a flap of tissue preventing food from entering the lungs. The brain controls the swallowing function sending signals to the epiglottis. Depending on the outcome, changes in diet (solid and liquid consistency) or no food or liquid with recommendation of a feeding tube. Aspiration pneumonia is one of the effects of the disease. If your husband is in a facility, you need to be aware that they will be concerned about liability and will want to follow the recommendations of the physician whatever they may be. Please, please consider quality of life over quantity.