After years of cognitive decline and at her primary physician's repeated urging, my mother saw a neurologist and was formally diagnosed with dementia, probably Alzheimer's, in October.
The neurology clinic offered no support except to hand me some printed information about Alzheimer's disease on our way out the door. There is no care plan or follow-up appointment. The neurologist communicated only with my mother's primary physician. I thought he might follow up, but he didn't. In fact, when I tried to make a routine appointment for blood tests to check her borderline kidney function, he now says it's not urgent.
Maybe I don't understand what to expect, but I feel abandoned by both physicians. Is this a typical response following a dementia diagnosis? Would a geriatrician do a better job?
I'm alone with my mother's care and it's becoming more than I can manage. I need help.
Thanks for listening.
And at this point there are no medications that can stop the process, only some of the symptoms like agitation and hallucinations, so the doctors hands are really tied when it comes to the disease of dementia.
It will now be up to you to educate yourself all about the disease, so you won't be so surprised when you see different things arise in the future. Teepa Snow(a dementia expert)not only has a lot of great videos on YouTube you can watch, but has also written some great books as well for you to read.
Also the book The 36 Hour Day is a great resource as well.
And if your moms care is getting to be too much for you, then it's time to be looking into placing her in a memory care facility where she will receive the 24/7 care she requires and you can get back to just being her daughter and advocate. Because you must remember that Alzheimer's has the slowest progression of all the dementias, and can go on for 20 years.
Also I would recommend finding a local caregivers support group that you can get plugged into. A lot are meeting in person along with offering a Zoom option as well. My support group saved my life while I was caring for my late husband.
You must now do what is not only best for your mom but also what is best for you.
A bill, they care about that. Sorry, don't mean to be flippant, a better answer might have been 'You are not alone'
We had a MUCH better care for my mom with a geriatric doc. Mom's regular PCP was rather cavalier about our mom's increasing anxiety and threw poorly explained meds at it. He didn't see it as a symptom of a larger issue.
Really, doctors on the whole are not supportive. You will need to read and maybe find a sport group. This is a great support group. You just take the info you need and weed out the rest. We are not pros just ordinary people who are or have cared for a LO.
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
There are more tips and ideas in that article, so do read it. Wishing you the best of luck with a difficult situation.
Come back in 6 months, uh no never. Off we went, she is now in MC.
She is 85, we use the doctor the home provides, makes no difference at this point, there will be no life saving methods used, her choice before dementia.
I'm disappointed to read that most of you found little or no support from the medical community, outside of memory care facilities. Considering how serious this diagnosis is and the impact it also has on caregivers, I hoped for a better response.
Ideally, on hearing a confirmation of dementia and probable Alzheimer's, we would have heard this: "Although there isn't much we can do medically, we would like to refer you to our team of practitioners (nurses, social workers, counselors) who specialize in dementia care and support. You do not have to do this alone. We're here for you if you want our help."
That said, I'm grateful to all of you for taking the time to share your experiences and offer resources.
And to any medical professionals who might be reading this, consider taking this conversation to leadership. This expanded area of practice is sorely needed.