Today, we just learned that the cognitive assessment that my husband had done last week came back as a major neurocognitive disorder. Any advice?

I'm so sorry that you and your husband have this burden to bear. Make a plan for the worst case scenario, that he'll need care and you'll need care at some point in the future, maybe soon. You have two basic choices, if either one of you or both needs care: in-home caregivers, or moving to an assisted living facility. You'll lose some freedoms in a facility, but the upside is that you will have professionals taking care of you and be less of a burden on your children. You'll do them a favor to move near them if you move to AL. Make sure all of your paperwork is in order: setting up powers of attorney for medical and financial matters, living wills with your advance medical directives, wills, etc. Get all of your affairs in order and simplify things as much as you can. It is easier when accounts are set up online with automatic payment, and paperless. Assess what you and he are able to do now, and live your life the way you want to as long as possible. All the best to you both.

I am so sorry you are going through this, and I apologize if what I'm going to say sounds insensative. You have received lots of good information from others, so I'd like to add another thing to think about.

If it's something you think you might be able to do, I would seriously consider selling and moving much closer to your daughters. My sister (who lives in California...a 16 hour drive) and I (who live in Washington state, but still 3+ hours away), tried for years to get my dad and step-mother to sell and move closer to one of us. Instead they refused and stayed living in tim-buck-tu away from any good hospital and any care resources. End result was when ever either of them went to the local hospital, they got ambulanced, or flown to hospitals that had resources that were hours away, so they couldn't visit.

My step mother passed away (had mild dementia herself) last November, and my dad whose dementia was much worse (she had been the caregiver) went downhill fast from there.

A neighbor finally accepted money to look after him for a couple of months, but then his dementia got bad enough to where the neighbor couldn't handle it, and he had no choice but to move to an AFH near me--luckily, I found one just 4 miles away from me so I could visit him several times a week.

He passed unexpectedly quickly about 3 months after moving there, and now to clean up his properties (they were both hoarders) it is a 3+ hour drive (ONE WAY). I've been at it for several months, putting much wear and tear on our vehicles, my health and marriage. PLEASE move closer to your daughters so they don't have this type of situation on their hands. Also if you live closer, they can check on you and help out to a certain extent. It's impossible to assist someone when you are working 50+ hour weeks and live 3-4 hours away.

If the 2 of you and your semi-disabled son all live so far away from family, please consider what that will mean for the two of you and your son's futures when you need help, or are gone.

Get POA for him. Know he will get worse over time. Plan how to pay for care as needed.

indubuque: I am so sorry to read of your husband's diagnosis. You could garner information on the disease by reading the book, "The 36 Hour Day." Hugs sent during this most difficult time in both your lives.

You are receiving EXCELLENT advice here. Well done for reaching out right away! You and your husband are both very smart people. I would like to add that if you and your husband contemplate moving to Senior Living, such as Independent Living with Assisted Living that you can move up to as needs change, my recommendation is to make your move sooner rather than later. With your husband’s developing cognitive issues, it will become so much harder over time for him to learn his way around a new apartment/new building. Moving while he is still pretty cognitively intact will give him the best opportunity to learn his way around, make friends, get used to schedules, activities, amenities, etc. It will give you both time to get to know the staff and figure out how things work so that you can both feel at home. My mom has Alzheimer’s dementia, and she has fought tooth and nail not to make the appropriate moves when it would have been possible for her to transition fairly smoothly and easily, and so each move had to be forced when her situation grew dangerous. She made everything so much harder on herself, and on and my sister and me, by insisting on waiting for crises that would force change. Eight years into her dementia journey, I am completely wiped out and have had to step way, way back from her care. My sister lives across the country and chooses not to be involved. Please, please don’t do that to your adult children. Don’t make them bear the crushing burden of being the “bad guys” and don’t exhaust their goodwill and their mental, physical, and financial health by not making your own good and courageous care decisions proactively. Alzheimer’s disease does not get better, and it does not stay static. Make your own proactive, practical, and courageous care arrangements for yourselves now while both you and your husband can make those decisions wisely as a team. My mom is now at the stage where logic is gone, short-term memory is gone, and chunks of long-term memory are vanishing. She is now absolutely unaware of having any deficits whatsoever and lashes out at ALL of her caregivers, insisting that she is perfectly capable of taking care of herself. Don’t wait until the anosognosia takes over in your husband. I’m so sorry you guys are faced with your husband’s diagnosis. But be smart, wise, and compassionate toward each other and toward all the people who love you and want to help you over the coming years. Honor all of them—and yourselves—by not making any of your care harder than it has to be. Big internet hugs to both of you.

First, I suggest you look in the mirror and promise yourself that you will set healthy boundaries of self-protection: being a martyr will shorten your life and diminish your happiness. Love him, but don't lose you!

Perhaps going on a dream vacation would give you memories that will never die.......have you seen the Italian Riviera (Ligurian Region)? Bring all your children and have them interview their father so that their memories will be enhanced with the sound of his voice. Please consider getting a professional photographer to provide you with a family portrait.

When you return, then you can go in search of answers and methods/techniques that will guide you through this long dark tunnel. I keep hearing that Teepa Snow is a bright light for us all.

My husband gets up every morning and uses his brain, first thing: LUMOSITY. I have told him that I will do my best to be a good care provider but I must resign that job if and when he becomes incontinent or physically abusive. We both wear DNR bracelets as we both have incurable diseases. We met with the neurologist and then the estate planning attorney and added the Elder Law Attorney this year to strategize living arrangements and care options. We contracted with the Neptune Society in an effort to. release our children from having to go shopping at a mortuary...........everything is taken care of. Going through this process will free up your daughters to assist your son.

One resource to check out: (copy and paste) https://uihc.org/services/neuropsychology

So sorry to hear of his situation and yours as well. The most advice I can offer is to begin setting the future in motion right now. Have a meeting with your girls, and get all the business of POA’s. Wills etc…and “whom should do what “ should your husband become worse and even if you yourself should suffer from an illness because you have to make sure your son will be situated. And just know and remember you may or may not be able to have your husband be a part of the planning
( not trying to be insensitive but all should be of sound mind).

All we have is “now” and in the “now”we prepare for the future whether we get to see it or not (we’ve done this all of our lives, we plan and prepare because we “hope” to be a part of that future)!

In all of life’s realities we all should know none of our tomorrows are promised, yet we plan an prepared because we are hopeful and prayerfully we will be blessed to take our next breath💕
Stay encouraged 💕

I had the same thing happen to me with my wife earlier this year. It was good in away because it changed my whole attitude to her. I was more tolerant. I knew she did not mean what she said. I did not challenge things she said I let them go. I got into a routine of being a caregiver.

As a health and caregiving coach, I would first allow myself the time and space to just pause and breathe and let this information settle in. All too often we don't give ourselves time on the front end to just process the diagnosis. There are many helpful suggestions above. One I would encourage is if you don't already practice self-care start now. Prioritize yourself in some way every day even if it is just a few minutes to stretch, move, or pause. The journey will continue and transitions will come but always know that you are an equal part of the equation. You deserve to care for yourself in the midst of caring for your spouse. Sending blessings for peace and pause as you enter a new phase in your life journey.

I’m so sorry for your husband’s diagnosis. My advice while you absorb the impact of this shock is to meet with a very good elder care attorney to get all the financial paperwork in place. People can live a long time with ALZ, but at some point you may not be able to care for him even if you had 24/7 help and he may need a memory care facility. An elder care attorney can help you understand your options and help you plan for it with the medicaid look back period, etc. I would get as much money out of his name and into yours as possible to start and begin the task of taking over all the finances and bill paying. I would make your daughters POA so they can help you with this if need be and make sure they know about all the accounts and which bills get paid and when. I made a spread sheet when I took over my father’s finances with all the bills no matter how small, their due dates, the amounts, what account they are paid out of, if they are autopay or a check must be sent in, and the password to access it online. That way if something happened to me my brother could jump in without having to start over.

I would also think about locking his credit with the three credit reporting agencies. You can lock it and unlock it as need be and only allow him to carry a credit card in his wallet to use for purchases. That way you can monitor it for fraud. My father lost his wallet a couple months ago and luckily I was able to lock his accounts quickly, but not before someone tried to make a $5000 purchase at the Apple store. Luckily I had set up alerts on the accounts and was able to decline it as a fraud and the charge was declined.

Take this information in stride and make choices that are right for you and your family. There is no wrong answer if your life is working for you.

Years ago when my parents were given outdated 10-minute 1950s tests, with instructions like “draw a clock…” etc., I decided not to let their future rest on the outcome.

Mom was shaky with nervousness and her clock looked shaky. (Later, in my home, she drew a perfectly nice clock). If her clock would have been terrible, I would have cared for her anyway because I could and I wanted to, come what may.

I read once that Alzheimer’s can only be truly confirmed in an autopsy. The term “dementia” is thrown around and doesn’t relate to a particular medical condition but winds up on medical records every time someone gets a question wrong.

Once when Dad was told a test “story” by a neurologist and asked to recall the details out of a ten minute list of facts (it sounded like an SAT question, but Dad didn’t have the advantage of being able to see the text), he couldn’t remember the character’s street address. Neither could I. He could, however, understand and remember the story.

Both my parents failed on those tasks, but I still kept them at home and cared for them until the end, because that worked for us all. If it doesn’t work for you, that’s okay, because there are so many options available that will meet your various financial and family needs.

It wasn’t always easy and at times I needed help, but in our case, everything worked for us at home. I brought in CNAs to help with personal care/hygiene (showers), because that was awkward for me.

if they would have lived in a nursing home, we would have made that work too.

I wish you the best, and remember there are no wrong decisions if a certain set-up is working for you.

No matter what, people will criticize your choices if they don’t agree (even strangers on this forum), but this is Your life.

I am so sorry. These conditions are terrible for everyone. Do call an elder care lawyer and schedule an appointment. That person can advise you on legal and medical steps you need to make as a family. Call your daughters to make an appointment with them for a family meeting. Ideally, one might accompany you to the lawyer's office. Then, with appointments made give yourself and your husband some time to regain your equilibrium. You need quiet and peace. If you have a clergy member, or a therapist, or a really solid friend , they can help process the emotions to ease the thinking you will need to do. You, in particular, need to rest and monitor your diabetes carefully. It is notoriously reactive to stress. Your husband's problems may worsen for the same reason. Realize this, and understand and forgive yourself if you feel overwhelmed. You ARE overwhelmed and in shock, for the moment. With time, you will get back on track, although a sad and difficult one. But most of us tackle these kinds of problems as we age. We are fortunate it is not when we are very young, as you and your family found with your son. Indeed, it sounds like you have managed that very well. You and your family are still the same people, and can still manage difficulties well. Just give yourself some room and time. God Bless you all and give you strength.

For Now check out Mediterranean diet - some People believe inflammation Has a Lot to do with this disease . Cut Out sugar , coffee , processed foods and eat organic Whole Foods . Some people suggest Gamma Ray Light therapy and lions Mane mushroom tincture . Exercise , sunlight , gardening being close to the ground and nature . Check out acupuncture and Shiatsu Massage which helps unblock stuck areas Of Chi , Blood flow and Blocks In the organs . You Have time to heal him. Try Yoga and Simple stretches , Stay away from alcohol and cigarettes . Positive attitude , Mindful Meditation . Travel . Get the Mind engaged and the Body healthy .

I am sorry. I hear your grief and fear; grief and fear of the present and the future . In a way you are experiencing some of those first stages of grief , shock. Obviously you are aware that you, your husband and, son are now even more vulnerable both physically, emotionally and spiritually.

Practical to dos include: Get all legal and financial documents and wishes in place ASAP, if not already done. Especially be sure that you have POA status . I cannot tell from your note if your husband is considered " competent" at all. Speak with your daughters/ family meeting and, honestly share and hear what you and everyone think best . You do now need and, will increasingly need more support. SAFETY needs to be a priority concern for you, your husband and son;. an important point to consider now is , what would happen to your husband, son if for some reason you are incapacitated, I'll and hospitalized, in an accident etc etc. So the point is that for purely safety reasons, it sounds like some decisions about living arrangements, caregiving etc etc are paramount. What has the physician recommended? Has he/ she referred you to other support systems? There are many options and considerations and choices and many families make different decisions at different times, often driven by personal, health, financial, family availability and many other things. Pray ( if you do), speak with your clergy( if you practice a faith) for spiritual support in this ominous time for you and your family and, for the strength to make decisions that may be very difficult.
Have the family meeting/ talk with your daughters. Include your husband, son to the extent he/ they are able. If either husband or son are capable to appropriately be a part of the conversation, do not feel guilty and , make decisions with your daughters for your and every ones safety and as much support as possible. Blessings

Sorry to learn about your husband's diagnosis. This might be a personal question but how old is your husband? He could live a long time like that. Definitely look into getting his legal documents together with an elder attorney while he is still of sound mind. And, take care of yourself with your diabetes. Perhaps consider both of you going into an AL facility. Can you afford to pay for help?? Who will take care of your son, family or hired caregivers when you cannot any longer?

My husband and I moved 700 miles to be closer to my competent daughter to ensure she can oversee us before an emergency occurs. With her busy working life, it makes no sense for her to drop everything to take care of us. I researched elder facilities and gave her my opinion of possible facilities. I also gave her the tools on when to intervene. Legal docs are in order, access to our safe, and lawyers are named

Do POA and Health Executor now. Like NOW. Start transferring as much money as you can into your own name

My condolences on this diagnosis, and the blow you've been dealt. The best thing you can do is learn all you can about Alzheimer's (AD) and find support for yourself moving forward.

Teepa Snow has some great videos on YouTube you can watch.

Alz.org is a wonderful website with an 800 number you can call to speak to a live person, and a chat forum like we have here, devoted to caregiver questions and concerns.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing Alzheimer's and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HIM that makes all the difference.

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 and AD.

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

I also recommend a good autobiography, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's by Diana Friel McGowin  

Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out. 
 
https://www.amazon.com/Living-Labyrinth-Personal-Journey-Alzheimers/dp/0385313187/ref=sr_1_10?crid=38BXLPJ24UIAM&keywords=alzheimer%27s+autobiography&psr=PDAY&qid=1665615924&qu=eyJxc2MiOiIwLjAwIiwicXNhIjoiMC4wMCIsInFzcCI6IjAuMDAifQ%3D%3D&s=early-access&sprefix=alzheimers+autobiography%2Cearly-access%2C160&sr=1-10

The other book I recommend is The 36 Hour Day which is more of a reference book which will answer questions as they crop up on a daily basis.

Knowledge is power. Arm yourself with as much info as you can, and make sure DH has a good doctor who is FAMILIAR with the disease and can help you both navigate the journey together.

Research Memory Care Assisted Living Facilities so if/when the time comes you can't manage in home care anymore, you'll have that on the back burner. Also have in home caregivers lined up so you can get some well needed respite time for yourself.

Wishing you the best of luck and sending you a hug and a prayer for peace.

Yes I can appreciate the blow. A neurologist called us to report a Alzheimer’s to us without the slightest hint of empathy. Knocks you off your feet! When you are blue to pick yourselves up, follow the advice here and search the Alzheimer’s Association chapter in your area. You took the first step by writing here.

Start educating yourself as much as possible about the disease of Alzheimer's/dementia as there is SO much to learn about it, and the knowledge will arm you for the days, weeks, months, and years ahead. Daughter 1930 mentioned Teepa Snow videos which are great as she is an expert in her field of dementia, and can be found on YouTube. The 36 Hour Day by Nancy L. Mace and Peter V. Rabins is also a great resource.
And know that you and your husband are not alone in this. If possible find and get involved in a local caregiver support group, as being able to walk side by side with others going through similar things as you will be priceless, and can save your life as it did mine, when I was so overwhelmed with everything.
I've been involved with a support group in my area for over 4 1/2 years now, and although my husband who had vascular dementia has been dead for 2 years, I choose to stay involved to now help others who are still going through it.
And it's amazing to me just how many people in my support group are now or had been caring for their spouses who were doctors(a lot of them, I mean a lot!)lawyers, professor's, presidents of companies etc. Alzheimer's/dementia doesn't discriminate.
And we were just talking in our group today just how important it is to just take one day at a time(sometimes just one minute at a time)and don't try to worry too much about what may or may not happen in the future, as often what you worry about never happens.
But one thing is for certain, and that is the fact that he will continue to get worse, and there will be nothing you can do to stop it or slow it down, and that in its self can be very frustrating and saddening.
So please take care of yourself. Make sure you're taking time away just for you to do what you enjoy, as you matter too in this equation. Often caregivers neglect themselves and that can lead to a whole host of issues both physical and mental, and 40% of caregivers caring for someone with any of the dementias will die before the person they're caring for due to the stress of it all, so again PLEASE take good care of yourself.
So remember, you are not alone in this. There are plenty of resources out there for you and your husband. You can contact your local Area of Aging Agency, Senior Services, the VA(if applicable)and also an Adult Daycare Center.
None of us who have gone through or are going through what you are, would have chosen this path, but I can tell you from personal experience that in most cases(mine included)it makes you a much stronger and better person in the end, and for that I am grateful.
God bless you both.

So sorry about this devastating news.
However you decide to proceed with legal obligations you also have obligation to yourself. To be honest and plan for what if? What if progression is fast and marriage is gone in the way you are no longer living with the same person, anger, even abuse and physical demands are all possible.
I am caring for husband with Parkinson’s but no dementia, if it shows up, the arrangements are already in place.
I think every adult should have plan, if your husband is still fine, ask him to participate or make some preparations, his preferences should be considered, but, you or I or many others should not be responsible for doing everything.

Thank you both. I am very willing to ask for help and accept it. I am a retired licensed mental health counselor and know how important this is. But is people like you, who have walked down this road whom I need most now. Blessings.

Get yourself to an Elder Care Attorney ASAP.
Not only do you have to make sure all your "ducks are in a row" but your husbands as well as your dependent son.
Not to nit pick but I am sure you and your husband both have had the feeling that this diagnosis was coming.
There are things that you will have to get in your mind.
What is your 'line in the sand"? Mine was safety. If it was no longer safe for my Husband for me to care for him at home I would have had to place him in Memory Care. If it was no longer safe for ME to care for him I would have had to place him in MC.
Find a good Support Group. Like shoes and bras they are not all alike and it might take some time to find one that "fits".
Learn to ASK for help.
Learn to ACCEPT help.
You will lose friends because you get busy and have other priorities. Make time for friends.
Get caregivers that can help you and give you a break.
Find resources that you can take advantage of. Does he qualify for help through the VA? Ask at your local Senior Center if there are any programs that can help.
Appreciate the good days. A bad day might be a good day in 6 months so as odd as it sounds appreciate the bad ones now as well.

I’m so sorry, what a huge blow for you both. Take a minute to just hug and breathe while you adjust to this news. You’ll need to make sure important documents are in order, will, POA’s for medical and financial, advance directives, anything you both want in writing. Figure out a plan for who will next oversee your son. We also have an adult son with a brain injury, and have recently gone through the process of updating plans for him after we can’t provide his care any longer. Decide if your living situation is suitable for the road ahead, is it time to downsize to get away from stairs or other needs? Educate yourself by going onto the Alzheimer’s organization website and learning all you can. Many here watch videos by Teepa Snow to help learn. There are many resources to learn and arm yourself with knowledge. Decide now to accept help when you need it, no one should believe they can or should do this alone. There are many people here who’ve walked this road, never hesitate to ask questions as they arise. I wish you and your husband both peace in the journey