while it is true that there is no official diagnosis, she has so many of the symptoms. she has poor short-term memory, repeats things over and over ... it is basically the same story again and again. Her memories of the past are like stories that never happened or part is true linked with something untrue. She accuses people of stealing, is agitated, etc. she has even hallucinaated a couple of times. Docs said she has cognitive impairment, then that she has sundowners ... but never say it is dementia. Feel like I am the only one seeing this and makes me feel guilty too. Of course, I dont want this to be happening, but I cannot help seeing what I see. My sisters say it is "just old age". She is 90.
I am worried about her living alone in her own home .. her safety. It's a difficult thing because none of us want to put her in a nursing home and it is really a moot point as ... since she is not incompetent, we cant do it anyway.
The law states that unless she is a danger to herself or another, she is a free agent. I dont think my sisters are trying to get "out of" doing anything and I do think they are in denial. I wish i had this all wrong but I become more doubtful of that as time goes by.
https://www.nbcnews.com/health/aging/many-alzheimers-never-get-diagnosis-report-n329121
If I may, another question? My mother was always a lovely person and we were very close. Since this illness (and heart disease/severe), she has changed dramatically. She says many hurtful things and some hit home hard. As a result, I am now seeing less of her and avoiding her (I am not fulltime caretaker). thus, feel more guilty. It has been having a very negative effect on me even though Im not supposed to get upset ... I do. Thanks.
Get her medical records first, because we found out the one doctor DID write down the D word. I had no idea, because he wouldn't bring it up in front of her.
The neurologist would be a good start, I think.
Are they saying that she does not need more care? Or that YOU don't need more help?
If you are more specific, we can give you better techniques. honest!
Other times, it's just ignorance and the fact that they haven't read multiple articles about the condition and conducted many hours of research on the topic. They perhaps have some outdated myths about senility from when they were kids.
I'd offer some resources for them to read and try to share information with them, if they are open to it. And if you need authority and don't have it, I'd consult with an Elder Law attorney. Do you have Durable Power of Attorney and Healthcare POA? Is she still competent to sign them?
If you need a formal diagnosis to use a DPOA or to implement changes in your mother's living arrangements which she might oppose, then I would agree that taking her to a specialist neurologist or geriatrician or geriatric psychiatrist is the way to go. But in any case, whatever they want to call it - heavens! They can pretend it's measles if it makes them happier - your sisters need to acknowledge the problems your mother is having and work with you to keep her safe and well. So what's their plan?
Don't take her to the Dr. who said it's mild cognitive impairment. Get a referral to a neurologist. A neurologist will do the necessary tests and be able to diagnose your mom. At least then you can get the diagnosis out of the way and get on with caring for your mom going forward.
I'm concerned that without a diagnosis your siblings will remain in denial thus causing an uphill battle in caring for your mom.
I experienced this too with my siblings. I felt like I was talking to a brick wall. In the end, I had to take charge and just go my own way.
Sundowning is a specific set of symptoms within DEMENTIA -- not within mild cognitive impairment. I do not know why some in the medical profession try so very hard to avoid giving that straight-forward diagnosis. The lack of an official diagnosis feeds into your family's denial. "See, the doctor doesn't think she has dementia, why are you fussing about it. She is just getting older."
Please don't feel guilty for seeing what you are seeing. You are not causing this! And of course you wish it wasn't true.
Your profile says Mom is living at home. Does she live alone? People with dementia cannot live safely alone beyond the very early stage. This is another reason that docs shouldn't pussy-foot around the diagnosis. Someone has to start making plans for care.
Perhaps it would help if you just drop the term "dementia" from discussions with your family. Talk about her agitation today, or her accusations of theft. Say she is getting so forgetful you are afraid for her to be using the stove. Let them know what you see, without diagnosing it. When you get an actual official medical diagnosis will be time enough to discuss that.
I think taking Mom to a geriatric psychiatrist if you can find one in your area might be a good idea. Or a neurologist. Either specialty could explore the hallucinations and the other things you notice and help you understand her impairments and what you can do about them.
You have to understand that accepting that a loved one has dementia is a very hard thing to do. One's mind tries mightily to keep sad, disturbing and disrupting information from consciousness by means of denial. It is a power force.
Mostly I find it useless to try to convince folks of stuff they are in denial about. Is the fact that they are not accepting of the dementia causing any problems with treatment?