Alzheimers disease and Dementia in other diseases classified elsewhere, unspecified severity, without behavioral disturbance, psychotic disturbance, mood disturbance and anxiety. He has shown mild signs for the last year or so, even though some days he is perfectly fine.
I am heartbroken and i know this is a huge blow to him--former corporate exec. and a Mensa. I will soon be 78 and have diabetes. We have a disabled son who lives semi-independently and for whom we are guardians. Both of our very competent daughters live 4.5 hours away.
What do I do now, or what do I do next? Any suggestions are welcome.
Thanks so much!

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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.
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BioMom41 Oct 2022
Love your empathetic but to the point answer, seems I needed this too, Thank You
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
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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
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mom2mepil Oct 2022
WELL DONE. You are so smart to prepare so thoroughly and to realize that you can control so much of your future by putting all those preparations in place yourself. You are a great example for how each of us can love our families by taking all the steps we can to ensure our own well-being as we age and to maximize the effectiveness of our loved ones’ efforts to help and care for us by responsibly taking care of our own affairs in advance of our needs.
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.
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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.
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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.
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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. 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

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:

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

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.

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.
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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.
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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.
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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.
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