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.
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.
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
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.
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.
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.
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.
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.
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.
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.
As some others have suggested, contact the Alzheimer's Association to find support and resources. They have a wide range of support, education and health care ideas for both patient and care taker.
If you have a teaching hospital close by, that's where I would find a doctor. Sometimes there are trials that may stave off progression to a degree. I always start with teaching hospital for things where I want some current research or protocols versus an MD
My PCP had a fair amount of exposure to patients with ALZ and other Dementia's, but he didn't have the breath of knowledge my Neuro Doctor has.
She was pretty upset having to give me my updated status from the Neuropsych Exam. My DW even thinks she's been a great gift in our lives, she finally got me diagnosed after 40yrs of being told there was nothing the matter with me, She and an Ortho Doctor both came up with the Muscular Dystrophy diagnosis, Ten years later, she got me the diagnosis of Early Onset ALZ. My advice would be to find a Neuro Doctor to help you down the path.
God Bless you on your journey
An established relationship with a good GP is beyond price, especially when you may end up with a whole can of worms of symptoms and issues to manage that don't confine themselves politely to a single medical specialty. Don't undermine it.
neurologists only have a couple of meds to try and slow down progression ... at best ..for about 8 months sometimes not at all but who really knows for sure !
some can live 15 years .. everyone has different journey with this disease .. I would get another neurologist or geriatric psychologist as this one seems really uncaring. But you know what medical students say about neurologists ‘diagnose and adios’ !!!
but a good one can help with stabilizing behaviours . GP ok with
everything else but usually knows little about dementia.
honestly this blog more than anything else .. discussions with other caregivers was most helpful for me !!! Nobody really knows more than other caregivers .. and nobody can imagine what it’s like !!!
keep your gp around and up to date
find another neurologist and stay on this blog ... teepa snow and others utube also helpful ... but the truth is you’re basically on your own with this.
it’s a very individual cruel and expensive disease. ..
wishing you a gentle journey !!
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