caring for mom

Mamac610

My mom is 84 i am not sure what stage she is in because i am not sure where to go to find this out. Her doctor does not listen so i went to the nurse practitioner. She had a CT and it shows damage to the brain in the areas of the strokes and some calcification at the base of the brain. the nurse practitioner did say it was dementia, but did not care for the idea of taking her to a neurologist. she started her on acicept about 5 weeks ago. not much of a change.
she has had many small strokes and a couple of large. should i take her to a
neurologist anyway? I am getting no help or guidance from her Doctor.

harshedbuzz

@Mamac610

Hi and welcome. I am sorry for your reason to be here, but glad you found this place.

I am sorry you feel unsupported in your care of your mom by her medical team. Sometimes this happens when a longtime family PCP has difficulty with this grim diagnosis and terminal prognosis in a patient with whom they have a relationship.

Two truisms- the first is that a competent PCP can order the bloodwork and imaging to rule out other conditions that might be treatable and offer the same prescriptions a world class memory center can with the same dismal outcome. That doesn't mean you shouldn't pursue a second opinion with a memory center or neurologist who sees patients with dementia as a large part of their practice, it's just that they may not have more to offer.

My dad was seen in a well-regarded memory center. They did a terrific job diagnosing him; he had mixed dementia and one was an uncommon kind. But they had little to offer in the way of help or guidance. I got that here and in our IRL support group.

The second is that, as a family member who knows mom best and who observes her on a daily basis, you are going to have a better sense of where she is in terms of severity than a doctor. This might help you get a sense of where things stand.

FAST Scale and 7 Stages of Dementia (elderguru.com)

HB

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Effiesdau1213

Thanks for sharing. I read somewhere that dementia is different for each person. I love your comment may you continue to find kindness during this journey. My mom has been declining more in the past year. My heart aches and I cry so hard sometimes because I feel like she is slipping away from me. I know what is happening, and I sometimes ask her "does it hurt?" As an adult you still remember your parents and their strength. My mom is such an incredibly strong person. I have found comfort in reading the pages and words of others who have become a part of this world. I find comfort in the words of strangers and I cry with some of you too as I read your words. I know it may sound bizarre but some of your stories are relatable. Thanks everyone for sharing.

mommyandme (m&m)

I’m very sorry that you’re on this journey. Here’s another link with 3 diff scales used. https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Anonymousjpl123

I’m so sorry you are going through this. I am too! It’s very hard to feel like I’m getting thorough answers to my questions from either the neurologist or the primary care doctors sometimes. Just know that it’s our health care system, not you.

in terms of stages and the neurologist, i agree with what others have said: go if you feel you may get information you don’t gave, but know that the doctors really can’t give definitive answers a lot of the time. Especially about what stage she is in.

I only really accepted the severity of my moms memory issues a year ago. Since then, it has gotten worse quickly and we have ruled out a lot. That said, her treatment has been a process and I had to keep bringing her to doctors, asking questions, and learning from people on this board.

im not sure how strokes impact dementia, but I do know that for me, just continuing to go to doctors appointments even when they don’t seem to do much has been much better, it leaves more of a paper trail for the doctors. But in terms of what stage, I think reading and listening to people here may give you more relevant information. I hope this helps! You are not alone.