soulfulgirl29 Asked October 2015
My sister in in Florida believes that my Mother (89) should be having her brain tested. I disagree! Advice?
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She has had her levels of electrolytes tested along with UtI testing. I Believe my mother should be comfortable and not put through these test. I hear they are very stressful. My mother no longer has conversation with me, Its killing me to watch her falling so fast. She sits and picks at her shirt for hours. She fell two days ago, she is ok, but every week, she falls further. I feel so alone.All my sister does is demand and ask her list of questions from in the distance 2000 miles away of course. She has no CLUE. SO I do not want my mother to be tested and be uncomfortable. If Doctors knew, I would not be sitting around all of these people who sadly share this awful disease.
I needed to vent.
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I'm not sure what "brain tests" you're referring to, but from your description, it does sound as if your mother could benefit from more than blood work tests.
Was she taken to the ER when she fell? What methods have you taken to prevent further falls? Are you getting any in-home help for her or are you caring for her full time?
I can't help wondering from the tenor of your post if your mother is really getting the evaluations that might help her, and/or if you're open to suggestions or more in the mode of seeking support against your sister's attempted intervention.
Sorry; it's not my intent to be critical in such an emotional situation, but I can't help thinking some information isn't being shared.
How often does your sister visit? It could also be that she doesn't realize how much your mother has deteriorated and/or doesn't understand what the prognosis is for dementia diseases.
Sorry if I seemed harsh in my first post; I know these dementia related diseases are challenging and bring so much sadness to the family.
It is so damned easy for distant relatives to armchair quarterback. To what end does one test an 89-year-old for dementia? Not like there's a cure, for heaven's sake. Your mom is slowing down...her body and mind is changing...because she's 89 years old.
I'd no more put my mom through "brain tests" than I would have her get a mammogram.
Your sister needs a reality check.
But primum non nocere, as they say in medical circles. What kind of tests has your sister in mind? - MRI? EEG? Cognitive function questionnaires? For all of these, and probably most others, the key question to ask her is what benefit she hopes they might bring to your mother. Because unless something is going to help, in some positive way, why do it?
Just to share one example: my mother, who already had a diagnosis of vascular dementia, went on to have a severe stroke. It was obvious that she had had, from her symptoms; but to confirm she was then given an MRI scan of her brain. Which showed a large clot, as predicted. And then? And then what? And then nothing, or nothing medically anyway. She got a bit better. She managed to come home. She died four and a half months after the stroke.
I didn't disagree with the decision to scan, by the way. It was in its small way helpful to have the confirmation. But if anyone were to ask me what the point of doing it was, I admit I'd be stumped. There wasn't any point. It made no difference to treatment or outcome.
Making sure that your mother is well cared for and comfortable and reassured is what matters at this point in her life. Minute investigations of her brain function, though… to what end?
It's a pity that your sister is too far away to help in any meaningful way, but her demands to have this that and the other tested are maybe her substitute for helping - her way of showing she cares. Very irksome for you, unhelpful to your mother, but all the same.
So what I'd suggest is explaining as sympathetically as you can manage that intrusive investigations would do more harm than good, and that everything possible is being done to keep your mother comfortable. And if sister goes on creating, sic your mother's doctor onto her and let her/him do the explaining while you save your energy for something more productive, like keeping your mother company or holding tight to your sanity.
And vent away. Back seat drivers are extremely annoying, just when we're in no mood to be patient.
My sister has only seen my mother, 6 hours in Five years. The administrator explained to me that these kind of test are very stressful. My mother is 89 and she does not communicate any longer. I do believe putting her through this is fair to her. She deserves to be comfortable. She has care 24/7 and the staff is great.
It required several hours of fasting and IV contrast dye.
She was in the MRI tube for over 40 minutes because she kept moving and then started thrashing around, cursing the Dr, and demanding to end the test.
They came and got me from the waiting area and told me to remove any metal and be with her to calm and reassure her so they could finish the test. I took off my watch and jewelry. I crawled partway in the tube and kept repeating, "Don't move, it's almost over." I forgot that my bra contains metal and it was jabbing into me.
The test results showed significant frontal lobe atrophy indicative of Alzheimers.
No further testing if I have anything to say about it. Though thinking about it another way, part of the screening for med research requires some sort of brain scan. The majority of the research is for people in early to middle stages. Late stage is not the timemto be participating in research. And what may be learned later would be quite limited it seems.
My mother has dementia.
My husband was in his mid-seventies when he abruptly showed signs of dementia. He got in to a research study where he had all kinds of tests every year. The results were valuable for research, and that was consistent with my husband's values. Knowing what kind of dementia he had (Lewy Body) and seeing an expert in the dementia was extremely helpful in maximizing the quality of his life for the ten years he lived with in.
My mother began showing symptoms of memory loss and confusion in her mid eighties. With a lot of support she was able to live on her own until her early 90s. It is clear that she has some kind of dementia. That is in her medical records. She has never had extensive tests and we don't know what kind she has. (Not ALZ and not LBD, but what?) In spite of my strong support of testing for my husband, I am not at all advocating for putting her through the tests.
So if your mother were ten years younger, understood that she has dementia, was curious and willing to be tested, (and if there was research value to it as well) I'd probably be siding with your sister.
But your mother is none of those things. She can't communicate? Lordy, how would those tests go?
If testing serves a purpose and is not stressful out of proportion to the tests, go for it. The older that patient and/or the farther along in the disease, the less purpose I see in it.
One answer does not fit all circumstances. If your sister hasn't spent significant time with your mother in the current year, she has the "right" answer, but for an entirely wrong set of circumstances.