The medical staff want to run tests on his throat. The tests are FEEST, Videostroboscopy, and modified barium swallow. I have looked them up, found lots of info BUT there doesn't appear info on what actual changes they can make. He has difficulty following directions and with a tube in is his throat expecting him to make different sounds, eating barium coated food all would be stressful for him, etc. Does anyone know about any of these tests and found them helpful? Aspiration pneumonia seems to be just a part of the progression of the disease. If these tests actually are helpful please let me know.
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.
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.
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.
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.
That decision was made four years ago, so far so good. No aspiration pneumonia yet. Just another perspective.
I just hate the thought of putting him through these tests, i wouldnt want to go through them its so difficult making these decisions.
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.
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.
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