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My wife is 67 and the neuropsychologist diagnosed her Alzheimer's disease as aggressive and said she may have 2 more years of a quality life. The neurologist prescribed medications but said follow ups with him were not necessary. Our family MD is good but I feel like we are missing something.

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I think the entire medical FIELD is 'missing something' when it comes to Alzheimer's and dementia, frankly. With all brain related diseases in general, including mental illness. They are still in the Stone Ages when it comes to matters having to do with the brain, let's face it. Medications that are prescribed are hit or miss; try this and see if it works, no? Try that. Up the dose, lower the dose. Yada yada. It's all guesswork, really, to see how or if the patient responds. Nothing stops or even slows down the progression of AD or dementia, so all that can be treated are the symptoms: hallucinations, agitation, anxiety, depression, etc. If you sign up with a geriatrician as your wife's PCP, she will likely be in good hands as s/he is familiar with AD and other age related diseases too.

The best thing you can do is to educate yourself on the subject. Alz.org is a great resource and there is a toll free number you can call to connect with a real life person to chat with. Forums such as this one connect you to people who are caring for others with AD, and that's a very valuable resource, too. In person support groups are good too. The best thing to do is to plan ahead; to line up caregivers and respite care for YOURSELF if you plan to be the primary carer for your wife because burnout is a very real thing. Plan to ask for help and to hire help as needed.

Here is another good link to look at: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448

I'm sorry you're both dealing with this difficult diagnosis. Please make sure to take care of YOURSELF too during the process of taking care of your wife. There are TWO lives, or more, affected by AD, not just one. People tend to only focus on the patient and not the rest of the family who are also greatly affected, but none so harshly as the spouse who's doing the full time caregiving. Wishing you all the best as you navigate this journey.
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Reply to lealonnie1
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disgustedtoo Jun 2, 2021
Dementia of any kind just stinks, period, but to have it start younger, like OP's wife, sucks so much more. It's like stealing decades of life from the person! There were several women in mom's MC facility who weren't even old enough for early SS. UGH!

We never had a "special" doc, or even special testing for mom. She likely had vascular dementia, based on medical history and symptoms. The first doc in our area was okay, but not very in tune with our needs. The one we switched to was a bit better, but by then it really was just getting her through a physical, to get a new Rx for her BP meds.

THIS:

"The best thing you can do is to educate yourself on the subject."

however is very important. There is a lot of information online (make sure they are reputable sites) and learn what you can. Most have "stages" and typical symptoms/behaviors for those stages, but these are all based on averages. Some will follow the stages and symptoms/behaviors like clock work. Others might have some symptoms or behaviors, but in different stages. Some rarely have all or fit into the stages. The key is to know what *might* be encountered, to be ready for it and know what steps there are, if any, to work around it.

For instance, some might start making accusations or wild statements based on real, old or imaginary situations. WE need to know this can happen AND how to deal with it. Typically we are advised to "step into" their reality, confirm whatever it is they are saying and then try to redirect their focus onto something else. You can try to argue or convince the person otherwise, but most likely this won't work and results in anger and frustration.

Another common thing that happens is sudden change in demeanor or behavior - this should trigger a UTI test (culture is best) and possibly blood work, to rule out infection or imbalances. It may sound silly, but it happens often enough that this is a well-tread mine field! I was skeptic until mom's first UTI in MC.

KNOW your limitations. When her care is draining you every day, you need to know it's time/past time to get help. If possible, you should hire someone a day or more/week to give yourself a break. All work and no play is bad enough, but with dementia in the mix, it can be a killer! If/when she has difficulty with mobility, think about getting PT/OT in, more to help YOU know how to help her without hurting yourself.

IF it's not too late, get to EC atty to get legal paperwork done - will, POA, etc, and some financial planning, in case you ever need to move her to a facility. NOW is the time if you haven't done this.

No medication is really going to help the Alz. Most meds are to offset any negative behaviors, to make life better for her and you. If you don't feel your current doctor is up to the task, then certainly see if you can find someone who might be better attuned to those with dementia.

So sad that she's being robbed of her life and you're being robbed of your dear wife. Enjoy her good moments and try to work through the not-so-good moments. My mother got a good 90 years in before dementia took hold. Even then, it wasn't too bad for her. It would have been better without it, but if I can get in 90 years before any cognitive issues, yay.
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If feasible financially, get help sooner rather than later, so your wife is familiar with them when they are really needed. Even a nice cleaning lady once or twice a week, who will be comfortable staying with your wife when you have errands or need a break with friends, etc. Nice is more important than efficient cleaning. Some people are comfortable with dementia, others are not. If this person can increase her hours when needed, so much the better. A relative or friend could also pinch hit. Getting a plan in place will make it less stressful and less crisis like for both of you when change is necessary. All the other ideas are great, and a place where your wife can talk about what is happening to her with someone other than you (are there patient support groups?) would be helpful. Same for you, of course. Bless you, and good luck.
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Reply to Moxies
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For your information, I have posted the seven stages of Alzheimer's Disease at the bottom of this message, so you know what to expect. (I am a retired nursing instructor and my specialty was psychological/mental disorders.)

The neurologist surely knows that there is nothing that can be done to stop the progression of your wife's disease. Your family MD can manage any medications that the neurologist has prescribed. However, I recommend touching base with the neurologist 4 times a year; it could even be a telemedicine visit if getting your wife out of the house becomes problematic.

In the meantime, please get all of your "ducks in a row," as others have suggested. Lots of advance planning is needed now.

MILD ALZHEIMER'S DISEASE
 
Stage 1:
No noticeable symptoms – but the disease is forming in the brain.
 
Stage 2:
Subtle, intermittent symptoms – often not recognized by family members.
Memory lapses (i.e. forgetting car keys or purse, unable to remember familiar words).
Discomfort in new surroundings, prefers the familiar (same restaurant, same routines).
 
Stage 3:
Trouble functioning at work (may get fired at this stage).
Difficulty with planning or organizing.
Trouble comprehending reading material – may suddenly prefer TV or movies.
Difficulty remembering names when introduced to new people.
 
MODERATE ALZHEIMER'S DISEASE
 
Stage 4:
Repeating questions or comments.
Trouble with handwriting, numbers or patterns.
Unable to manage money, file taxes, or perform other household tasks.
Confabulation to cover up lack of memory.
 
Stage 5:
Difficulty in purposeful movements or using tools.
Concentration, orientation and judgment noticeably impaired.
Confusion as to date, time, day, or season.
Neglect of personal hygiene.
Loss in sensory interpretation abilities (sight, smell, hearing, taste, touch).
 
MODERATELY SEVERE ALZHEIMER'S DISEASE
 
Stage 6:
Unable to remember name of spouse or relatives.
Significant personality changes and mood shifts.
Behavior may become abusive, violent, delusional or depressive.
Difficulty moving – or instead, may wander and pace hallways.
Episodes of incontinence or inappropriate toileting habits.
Needs assistance with all ADLs.
 
SEVERE ALZHEIMER'S DISEASE
 
Stage 7:
Severely impaired speech and swallowing.
Unable to smile.
Cannot hold up head or sit without support.
Rigid muscles and impaired reflexes.
Needs total care including feeding and diapering.
Person eventually becomes semi-comatose.
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Grandma1954 Jun 5, 2021
These stages are great.
But each person is different and may be able to do some things in all stages or not be able to do some at any point.
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Welcome to the forum.

You might try to find a geriatric primary. I found one associated with a university.
That’s who I have used to manage my dh aunts dementia for the past few years. Her internal med primary just wasn’t user friendly.

She saw her neurologist annually for several years but he did not prescribe meds. Had opinions on them but did give a nice written report I found helpful as I tried to better understand her situation. It was stressful for aunt to go to him.

I have another aunt who has advanced Parkinson’s who has continued to see her neurologist as well as a primary. Both these women are now on hospice. My cousin who cares for her mom with Parkinson’s found the support group for Parkinson’s very helpful and I would think the Alzheimer’s Ass in your area would be helpful to you.

I am very sorry for your wife’s diagnosis.

Below is a link to your local Alzheimer’s Ass where you might find local referrals that are helpful.

There are also care guides here on the forum and you will find this a good place to share and search for answers.

https://www.alz.org/tn/about_us/west_tennessee-_memphis
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Reply to 97yroldmom
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The PCP is not the one who is best trained (or traiined at all), to follow up on care for your wife, but should receive any clinical reports from other physicians, so all of her meds and various reports can be found in one place. You did right by having her diagnosed by a neuropsychologist. Though they don't provide care, they can definitively diagnose her and suggest further care. I would think the neuro she saw would at least schedule one other visit, maybe 3 months out, to monitor any side effects the meds may have and your wife's tolerance for them. If you notice any side effects, call him immediately.

I don't know if you are missing any further medical intervention, but certainly you would like to know “what's next?”, both for you and for your wife. Sadly, none of the physicians my wife and I saw, PCP, neurologist and neuro psych, ever offered any information about what we could expect. What you may be missing is information about her disease, and how you can provide the best care for her. “The 36 Hour Day” and “Surviving Alzheimer's” are 2 excellent books written for the caregiver. There are many websites and YouTube videos that can help, just Google “Alzheimer's”.

Visiting another neurologist or making an appt with a gerontologist may or may not help. All geriatricians or all neurologists are not necessarily experts in AD care. If you make an appt, make sure that your chosen dr is an expert in dementia care.

As for you, locate a dementia support group in your area. Call the Alz Assn for groups that are currently meeting, they will still be virtual. However, there are dementia support groups that aren't affiliated with the Alz Assn that may be meeting in person. Local care facilities may be hosting them.
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Reply to sjplegacy
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Medications work in early disease to keep the connections between nerve cells working. As the disease progresses, medications do not help.

Consider looking up disease stages of AD to educate yourself. Many families are able to keep their loved ones at home longer as long as the person with AD is kept on a consistent routine and has somebody with him/her. If your wife has difficulties with anxiety (many do) or depression symptoms (many seniors are affected), your family doctor should be able to help you manage those issues. Some folks with AD progress to a point that their care becomes 25/7/365, experience difficulty with caregiving tasks, and/or their families can not get any time off from caring to rest. At that point, it is usually time to consider residential facilities.
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Reply to Taarna
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Educating yourself is the best thing you can do.
Make a "deal" with yourself ... decide what you can and can not do.
Make safety your priority. If you say you want to keep her at home... at what point will it no longer be safe for you or her for you to keep that "promise"?
Medications can help to a a point but they will not work forever, they will not "cure".
As far as the neurologist, other than more tests, and they may become very difficult there is not much more he can do.
If your doctor is good, there is no reason to change. Visits will become more difficult.
UTI's will occur. They do have test strip you can get and use at home so there is less of a need to bring her in. As long as the dr is willing to prescribe without seeing her personally or seeing the results of a urine test.
Find an Adult Day Care that she can participate in activities.
IF there is the possibility that you would consider moving to a building that has Independent, Assisted Living and Memory Care that might help you as she declines. And it will give you a place where you can interact with others and do things when she is not able.
Do not be afraid, ashamed to ask for help
Do not be afraid or ashamed to accept help.
Let Hospice help you as soon as she qualifies for their services.
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Reply to Grandma1954
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At the very least, try to find a good geriatrician. Unfortunately, they're pretty hard to find, but they're a far sight better than someone who treats people of all ages.

Also get to know your local chapter of the Alzheimers Association (alz.org) for resources you'll be leaning on soon. I've also found that Dr. Leslie Kernisan's website, BetterHealthWhileAging.net (which brought me to this site), to be invaluable.

Alzheimers and dementia are much more than diseases to be treated by doctors, so educate yourself as to what might be ahead and familiarize yourself with those resources. They'll be far more useful than visits to a doctor who can't do much to slow the progression of the disease.

I'm so very sorry.
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Reply to MJ1929
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I want to endorse the idea of having your wife followed by a geriatrician. In general, they tend to look at the whole person and their quality of life.
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Reply to BarbBrooklyn
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No, a GP is not trained in caring for someone with a Dementia. My Mom saw her neurologist regularly. I would go with a geriatric doctor.
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