Have finally received a second opinion, now what?

Timyom: I'm so sorry.

The only new drugs so far is Depression medication...which we started today...
So, I am watching how she responds....
I am looking for an attorney...
Also...I expect to have Disney reservations handled soon...

As DollyMe said (here below), “this is a progressive disease, there is no getting better.” However, each person is different for some the disease will progress fast, for other persons it could be quite slow.

Be careful what drugs you might be offered to help your wife. Currently, there is no cure. Some drugs just treat the symptoms and might give some temporary help, but later the condition does not really change, and there after effects of the drugs.

Be prepared for changes in her personality and behavior.

I thought Alzheimers Disease could only be definitively diagnosed with an autopsy. Has something changed? Do the doctors just see symptoms and diagnose based on symptoms that were common to people who were confirmed to have AD post-mortem?

At any rate, I am sorry for your wife's diagnosis. My grandfather had AD and now my 89-yr-old mother is having lots of problems with memory and expressing herself. Contacting the Alzheimers Association is a great idea.

Sincere sympathies to you for getting the horrible news and confirmation. You've gotten good advice already, and have been tackling many of the important tasks on your own (learning everything you can, preparing for legal paperwork, making plans, etc.)

I would recommend that you not defer the legal paperwork until you deal with the rental. There is no real timeline for any form of dementia - there are stats, but every case is different. In a matter of a few months or even weeks, she may regress enough that an EC attorney could deem her incapable of signing the necessary paperwork. In that event, you'd have to go through the courts to get guardianship, which can be a long and expensive process.

If at all possible, DO take her to Disney! I suggest that you have someone else join you, perhaps your daughter? This would be for times you might need some assistance (she or you needs to use the restroom, for instance - being in an unfamiliar place might lead to agitation or wandering.)

Keeping the mind and body "active" is supposed to help slow the progression. If there are any adult day services, check them out - they may have programs that would help her and give you some "free" time to finish up your projects, provide a little respite or to run errands. If there are any senior exercise programs available, you could both benefit from this activity, physically, emotionally and just sharing the time together!

While you said she's lost interest in some previous activities that she enjoyed, it is possible to try other activities that might spark a little interest. Try anything once, more if she takes to it. It never hurts to try again either - the brain and how it works is certainly a huge puzzle! When I would visit my mother, I would join another woman who loved jigsaw puzzles (as I do too!) and surprisingly my mother would actually sit with us and work on trying to get pieces together (she did succeed sometimes.) I mention this because my mother NEVER did jigsaw puzzles, ever and likely had zero interest in them. I have also visited and found her coloring in printed images provided - another activity I would never associate with my mother!

It's good that you initially shared the news with family (those who only visit occasionally are very likely to miss the signs) and also good that you have now shared with close friends - being aware will help them understand and perhaps be more informed as to how to "deal" with someone going down this path! I have found that MANY people know of someone in their family who has dealt with this affliction. When I first suspected mom had an issue, I knew nothing about dementia other than the word Alzheimer's. I have had to learn a lot and adapt to dealing with the quirks. Patience, being able to repeat answers to statements and questions, sometimes multiple times in a short period, learning to redirect/refocus the person when they get into a rut, not negating anything they say, not arguing as it doesn't work, more patience and having plans for the future. Those plans can be bringing help in to assist you with her care and/or help around the home, or can be finding a nice safe place for her if/when it becomes too difficult for you. Although many see placement as giving up, it isn't really. It means you can go back to being a loving spouse rather than a worn out care-giver! The plan you come up with should have at least one alternate, in the event that plan A isn't working OR she regresses to needing more care than you can provide (we are NOT superhuman, so there can come a time when you will need more help!)

The question about how long really has no answer. Often it depends on the type of dementia, how long it might have been going on, how well the person responds to maintaining activity, etc. Our mother started showing signs around 91 (in retrospect there were some issues that might have indicated it was earlier.) Moved into MC at 93 and turned 96 yesterday, still going.

TimYon, as everyone else, I am sorry for your loss. No, your wife is has not died but your hopes and dreams for retired have taken a turn. I understand your need to get your house remodel finished but I would not wait to coordinate your legal needs until fall. I would do that before anything else. Like find an elder care lawyer and make an appt by the end of the week. If you are not designated as her POA already, that needs to be done immediately or you will not be able to make decisions on her behalf when she is incompetent to make them herself and she may already be at that point. While you are at it, name a secondary POA for her and name one for yourself. Getting this diagnosis is a shock, it always is, even when you know it is coming. As you tell more people, you will see there is no stigma attached, almost everyone know has a LO with dementia or knows someone close to them who has a LO. And it will give you an opportunity to talk about it and make it real yourself. You will find resources for yourself eventually but right now, the priority is to get your legal issues handled and make sure that home is a safe and secure place for both of you. I would definitely hire help to get the remodel finished if that is at all possible . Keep checking in here so people can support you.

I am sorry that you are going through this with your wife. How long some one lives with Alzheimer's is difficult to give a number to. In my husband's case, the time between diagnosis, severe side of moderate or a 7, and death was 6 years, extremely fast I have learned. One thing I found hard was that he had worked for years on the Apollo Space program after being a math teacher for years. Then it was programming computers in the 80's, 90's and early 2000's. Progressing so fast I had a continual adjustment daily, weekly. When he needed to be placed in Memory Care I knew he would get better care than I could give him. That realization was helpful to my mind.

Just around his diagnosis we had our wills, medical POAs, financial POAs, Durable power of Attorney done by our lawyer. A previous comment about handling that now is correct as a friend of mine did not do that for her and her husband early. by the time she did it, his condition was so very obvious to anyone that she had to be legally declared his guardian. Lots more trouble, paperwork, costs, and court appearance. You could explain it to her as the older ones are out of date and change in laws required additions. it sounds like she could handle it.

Some days will be hard emotionally so finding a support group for yourself is important. I regretted not finding one for me until close to his end. The Alzheimers.org site was very educational for me. They have a very good explanation of how a brain is deteriorating that has video. I watched it more than once. They can help you find a support group in your area. To know that others are going through the same adjustments as you will means you are not alone, just one of a new group. Anytime a person moves, changes jobs, or deals with raising children, you belong to a new group. Reach out to others in your situation. Take care and handle things as best as you can. We know your life.

Turmeric powder is of of the few foods that passes the blood-brain barrier and will help with the brain function.
not the caps...the powder.
1tspn in a little warm Distilled water (1/4Cup) + 1teaspoon raw honey + 2 spoons full fat plain yoghurt. Give her this 3 times daily before meals.
Take these things yourself...work together, as I am sure you have through many difficulties in your life together
And I recommend you give her (and yourself) Only Distilled water to drink, cook with & clean your teeth.
There is a booklet you can buy on Amazon called "The Choice is Clear" by Dr Banik that will give you rational understanding of the importance of the distilled water

"The body and the mind only separate with words" Hippocates

What Hippocrates meant when he said that, was something that has been lost in medicine through time and the occurrence of pharmaceutical companies controlling the health/medical industry
What it means is this:
The food and liquids we take into our bodies have a DIRECT effect on our thoughts
and feelings
Another of his sayings most people are aware of

"Let food be your medicine, and your medicine be your food" Hippocrates

And you will find if you follow the Great Grandfather of Medicines philosophies of health and healing your wife will rally nicely
Putting a "name tag" or as we term it "diagnosis" on a physical problem does Not a solution make
In parting: one does Not die from Alzheimers...one dies from the side effects of the many medications an alzheimer's patient is given.
No physician on the planet can tell when a person will pass over....that is up to the Creator...We all must do so. However, it is the "quality of life that is so very important
I have treated people with these brain conditions...and have found that the above, in addition to nettle tea, daily walks ...some time in the fresh air and sunlight each day....lovely music they enjoy and knowing they are wanted and loved have a tremendous positive effect.
nb. The primary cause of Alzhimers is aluminum toxicity in the brain. Im sure that as you and your wife were growing up & then raising your family you cooked in aluminum pots, used al coffee & tea pots, wrapped All left overs in aluminum. In addition added baking soda to the vegetables as they cooked and used plenty of deodorant (high in al) on the armpits
You can google "products high in aluminum"
and remove these from daily use
Heavy metals (eg al) are stored primarily in the brain.
The distilled water will help to draw them from the brain. And the turmeric powder will improve the liver function so that the body can remove these metals from the body
At any age (even the 70's) the body will move with you towards health and balance, given the opportunity
This is my personal clinical experience

Lastly I draw on Hippocrates again
"Cure sometimes, treat often,
Care always"

My mom had Alzheimer's, but she was much older than your wife. Other people noticed changes in my mon's behavior. We could be at a store and I'd have to explain something to her, like why she couldn't  have the pharmacist open a bottle of vitamins and just sell her half. I'd mouth the "A" word to onlookers, but they had already figured it out; I could tell. There might be activities like art classes, for people with Alzheimer's, through your local Senior Services Department or Council on Aging, that your wife might enjoy. That way, she could socialize, be safe, do a fun, creative activity, and you could get a little respite from taking care of her. I even wrote a book about our travails, taking care of my mom, called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I learned to develop a sense of humor along the way. Sometimes my mom would say such funny things, that you had to laugh, (which was a great release). She once wanted to tell someone that she pounded the pavement, looking for a job in NY after college, but what she said was, "I walked the streets of NY, if you know what I mean." My mom might have been a sweet talker, but she wasn't a street walker. I'd be careful letting your wife in the kitchen unsupervised. My mom once tried to make instant coffee by putting frozen peppers in her cup. In terms of my mom knowing that she had Alzheimer's, I tried to explain to her that she had Alzheimer's, a  disease of the brain, but that Hubby and I were around to help. She was in total denial. She survived several bouts of cancer, so you wouldn't think that an Alzheimer's diagnosis would throw her, but it did. I guess it threw us all for a loop at first, but we learned to go with the flow, when we could. Best of luck.

I appreciate all the comments....
i will try to provide “answers” to some of the questions....
I started noticing changes about 5-6 years ago.....little things..that no one else noticed...then about 3 years ago.....she would get lost every now and then but it was manageable ...she was still driving confidently and walking the dog for a few miles on a daily basis...still self sufficient....I was always checking on a few times during the day while I was at work...then she had traumatic incident that put her in the hospital...her symptoms were hi lighted and her attending asked me if she had demintia...
From that incident to now....she no longer drives...not because of getting lost but ...driving is confusing....she used to be speed reader..she can still read...but at a much slower rate...she rarely picks up a book...she can sew...can’t thread the machine..nothing creative...has difficulty following instructions.....doesn’t do crosswords anymore...sometimes getting dressed is difficult...enough that I have to help in the dressing room at a store...but sometimes she gets it right...I help her with bathing...but she doesn’t need me the whole time...has short term memory loss but not always...doesn’t remember some people...talks to people in magazines..I cannot always follow her train of thought...sometimes she gets insanely angry, she can’t tell time...and the list goes on...
But she is functional...we can talk...go to the movies....out to eat...shop...and some travel...flying is almost out of the picture...we walk 1.5 miles twice a day..
She spends most of the day watching TV and waiting for me to entertain her...I can still leave her alone...she doesn’t wander..
I can take her to get a manicure and leave her there..but I think that is coming to an end.
She was told at her first neurologist appointment in January 2018 that she had Alzheimers Demintia...she doesn’t recall that...I discussed this with the second neurologist and he did not see a problem with me not wanting to inform her of the second diagnosis...
My retirement plans were to finish remodeling our home (I have two rooms demolished)..but since retirement she is more dependent on me and has gotten a little worse..We also have a rental next door that I have been updating...I am considering selling it to gain the funds so I can get help finishing our house..I want her to enjoy the updates while she still can...of which one is a walk-in tub...
I have not handled legal matters and this is on my agenda once I get the rental completed (this Fall).as part of this I intend to discuss what needs to be done for her if I go first...
We have a daughter but I don’t want caregiving to fall on her...(also, she lives 1500 miles away)...
I want to find an activity for her...it just hasn’t reached the top of the list..and I really don’t even know where to start..
Myself......I feel horrible leaving her alone....but I do....I want my own life back...but I want her life back more....sometimes it all just overwhelms me...not the caregiving...but the thought that she is fading away...right in front of me..it is just too much sometimes...
Every day I pray I am doing the best for her...
Thanks...

My SIL knows that she has Alzheimer's (dx in 2017), but she keeps forgetting that she has the disease. I don't know if this is a good thing or not. It may be something that is going to differ from one person to another, e.g. what one person may want to put a name to their ailment, others may not want to know. Very personal.

Timyom, seems like you are requesting practical advice. Start getting financial life in order. Read over and over her insurance policies. Look into life insurance, her retirement, etc... to make sure who is listed as receiving those benefits. Anything that needs her permission/signature.
Look at your house/living situation. She needs to be someplace soon where there won’t be much change. Routine will become very important for her. Find elder lawyer.
On whether to tell her, Three years ago, my mother overheard me tell someone she had Alzheimer’s. She cried. Now, when she asks, “What’s wrong with me?” I tell her she has dementia. She seems to accept that.
Finally, I wish I had written down funny things that happened or she said. Trust me, there will be many of those unexpected moments. Please write them down. Please write down the good days.
Blessings to you.

The December, 2018, issue of Discover Magazine had an article about Alzheimer's under attack. One of the discoveries made was that exercise plays a significant role in stopping and reversing Alzheimer's. "A raft of other research demonstrates that breaking a sweat works better than any medication in preserving thinking skills. That means spending an average of 45 minutes four times a week at a moderate level of intensity--the equivalent of a very brisk walk. One pilot study of 65 volunteers with moderate cognitive impairment and pre-diabetes looked at the effects of six months of regular high intensity aerobic exercise. Results showed exercise enhanced executive function--and increased blood flow to regions vulnerable to Alzheimer's. "They even had a reduction of tau tangles," which are another hallmark of Alzheimer's, says Laura Baker, a cognitive neuroscientist at the Wake Forest Alzheimer's Disease Core Center.
Another part of an article was a personal story of a lady who was diagnosed with Alzheimer's confirmed by a brain scan showing the tangles. She began the exercise approach and after a few months, all the symptoms, including the tangles found by the brain scan, were gone.
There seems to be hope if we want to do the work involved. At least there is something to try.

I don't know why you decided not to tell her, or where she was when you were at the doctor's offices. My husband said it was a relief to have a name for what was going on in his head. We don't mention it because in our day to day life, there is no need to. I think she might have some relief to know her problems have a name. I am sure on some level she knows she has a problem.

I joined support groups and forums like this one. The County Office on Aging has been a huge help.

I try to keep things simple and routine. For example, he still grocery shops and cooks. I do notice his menus are down to 4 or 5 dishes and we aren't eating anything new. He used to gourmet cook all the time. When we go to the grocery store, I park in the same place all the time. I don't move furniture or change colors of rooms or house. I say that because I had the house painted last year. I was going to update the color but my daughter mentioned if I did that and he walked out the driveway and turned around he might not recognize the house. It has been the same color since about 1960. I try to make our lives as less stressful as possible.

I don't know what tomorrow will bring. I know it is down hill. My heart goes out to you. We traveled a lot and I look at our RV in the driveway and I miss that part of our lives very much. Hugs to you and yours.

I just want to stress the importance of getting the POAs done. Once your wife is deemed legally incompetent to sign, you will have to go to court to get that done. I’m so sorry that you both are facing this battle. Hugs to both of you.

Get with a support group for yourself.  Begin to get information for facility placement.  Prepare yourself for everything, which the support group will help you with on things as they mention their problems with their loved ones.  No one knows how long this will be, so be ready for the long haul.  I am 3 1/2 years into it with my mom.  My uncle was about 10 years into it with his wife.  We knew there was something wrong and could not get him to receive help no matter how long we tried to get him to accept it until his health failed, and when it did, then she was placed in a facility.  His health problems have been devastating for him due to his failure to care for himself since he was determined to spend all of his energy on her.  Sadly, the caregiver is the one who suffers the most while the person they are caring for just slowly declines.  Get everyone on board to help you and ACCEPT their help.

Hugs to you and your wife Tim.

The are many factors to longevity, family history and personal health habits and history being dominant. A very close friend of my Mum was diagnosed with ALZ when she was 60, she lived to 80+, which was in line with her family history.

It is good that you are sharing the diagnosis, you will need the support of family and friends moving forward. You may also need to hear their observations. When we are in the middle of something as challenging as a partner with dementia, sometimes others will see things we do not, or perhaps are willfully blinded to.

First of all I am so very sorry.
You may have said in a previous post, but how does this stage manifest itself in your wife. Can you give us a brief portrait of her day. Is SHE aware. Many families discuss this diagnosis with one another, and it seems to me after several documentary that people aware of their diagnosis and working with their husband or wife do a bit better in prolonging the worst symptoms. One man with Lewy's actually does lectures on his disease and runs a Facebook page to help others. They discuss their symptoms, etc.
I recall when I was told at 77 that my beloved brother, 85, has a dx of probable Lewy's dementia by the symptom and certain MRI changes seen. As we moved through the shock, he and I, I felt quite honestly that I would never know happiness again until the day I was blessedly allowed to die. That is, I don't think, an unusual reaction to those first months.
I hope you will stick around on the forum. I find it a great help to be here. I have been told I immerse myself in the site too much (at least daily here reading and commenting on the experience of others); but one tends to go where like minds are dealing with similar circumstances.
As to death, no one can ever guess. There are decisions you and she should make together now, however. For myself I decided age 70 not to take mammograms anymore, despite 30 year ago history of breast cancer. I would be palliative care for almost anything at this point. Barbara Ehrenreich's book "Natural Causes " is a good one. Discuss with your wife while she is able to--IF she is able to--what she would want under different circumstances. Get all your papers in order.
You know that the heart of many here goes out to you.

I will take the last first...
How long will she last? There is only one that can answer that and He/She does not divulge that to anyone.
((HUGS)) to you and to her.
As for saying it out loud to friends and family I am sure all of them have had suspicions for a while little things that she may have done or said that make you wonder. That still makes saying out loud feel like a kick in the gut!
As for the "scales" I put little faith in those. My Husband did things that he should not have been able to do far longer than he should have and there were other things that he should have been able to do that he could not do. So go with HER flow and accept what she can and can not do at any given time.
Find yourself a GOOD support group, you will need those friends and the support.
Contact Hospice. I know it may seem soon but you never know and they will be a good resource for you and they will let you know if she is not eligible now what the criteria is for eligibility. You will get a lot of support and help from Hospice. From supplies and equipment as well as the ability to have a volunteer help you out so you can get away for a bit. (they can not do "hands on" contact)
The typical suggestions...
Do not argue, you will never win an argument with a person with dementia.
Redirect behavior
Redirect questions.
Patience
Take time for yourself.
Do not feel guilty placing her in respite if you must
Do not feel guilty if you have to place her in Memory Care

The last part of your question...
My Husband was about 65 when he was diagnosed although I saw signs as early as 5 or more years prior to that. He was 75 when he died.

All I can offer is a hug {{{{{{{hug}}}}}}

and the only advice is to try to get back to better nutrition. This means less packaged and more meals from scratch.

So sorry to hear this. My sister was diagnosed at age 55 and was cared for at home until she passed away aged 67. I would advise that you read everything you can about Alzheimers and get yourself prepared for each stage. When your wife starts to deteriorate you need to go into her world as she will no longer understand yours. You will need to have a huge amount of patience and please accept any help that is offered. You will need respite and breaks to keep yourself well and able. There is help out there for both of you so embrace all of it. Keep yourself busy and maybe make a few scrap books of pictures and photos that mean something to your wife from her childhood upwards. She may get comfort from recognising things from the past. Also play music that she enjoys and recognised easily. Agitation can be relieved with a Twiddle muff or things to fiddle with. There is so much Information available. Good luck and best wishes to you both. X

So sorry for the emotional turmoil you must be feeling. The true focus in my view is on the quality of life now not her impending death. However, with that being said, you still might want to go to an Elder Lawyer for estate planning. No one but G-d knows what the future will bring so it will bring you peace of mind to have this set up. Also, you might want to take your wife to the Amen clinics and/or go to a doctor that practices the Bredesen prodigal. I don't care what the doctors say or people tell you, I believe there is always hope!

Just adding another hug. I am sorry you and your wife must travel this path...like so many millions of others. You have received good suggestion here. This village is with you on this journey.

My husband was diagnosed in 2013 at age 60 with mild cognitive impairment, but it has progressed to Alzheimer’s. His neurologist has always said average life span is ten years and his is a steep trajectory of decline. Everyone is different, but I’ve seen periods of steep decline and then plateaus. I would do whatever traveling you’d like to do soon. There comes a point where it’s too overwhelming for them. Does your senior center have any special programs? I know some around here have respite care programs a day or two a week. Your LO has a structured program and you have a few hours to get things done. I continued to work, so I had a caregiver with my husband during the day. They would be out and about (library, movies, etc.) perhaps you could have a companion take your wife to a senior exercise class, a walk, or some other activity as a change of pace for both of you. I would also suggest getting all of the legal stuff in order. My husband knew something was wrong and he was aware of his diagnosis. It was helpful for him to talk about (although there was a stage of denial.) Even now at a later stage, he knows he can’t do things. This can be very anxiety provoking, and anti-anxiety medication helped him. Talking to a therapist (initially jointly, now just me) is also helpful. Best wishes on this journey.

She is still young by today's standards, there is no way to know how long she can live. All I can say is that try to live in the moment, unfortunately, this is a progressive disease, there is no getting better. I wish you the best!

Well...the second opinion was not a total shock...I expected it...it just made it more real.....
I have not handled the legal stuff yet..kept putting it off until I got the second opinion.....so now I have no more excuses and it is in this years plan...
Our daughter visited for two weeks which gave her enough time to really see what was going on...I had to show her the diagnosis in written form before she accepted it..and this was before the second opinion...
I have done an awful lot of research over the last year....read something almost every day...
The state Alzheimers Association helped me find the second neurologist which was a two hour drive.....
She is still capable of a lot....and I need to find a activity for her...we are in a small community of about 25k...so I am not sure of the local services...
She doesn’t know the diagnosis and I think that is for the best....
She wants to go to Disney World one more time..so I am trying to set that up this fall...
Thanks..

Well...the second opinion was not a total shock...I expected it...it just made it more real.....
I have not handled the legal stuff yet..kept putting it off until I got the second opinion.....so now I have no more excuses and it is in this years plan...
Our daughter visited for two weeks which gave her enough time to really see what was going on...I had to show her the diagnosis in written form before she accepted it..and this was before the second opinion...
I have done an awful lot of research over the last year....read something almost every day...
The state Alzheimers Association helped me find the second neurologist which was a two hour drive.....
She is still capable of a lot....and I need to find a activity for her...we are in a small community of about 25k...so I am not sure of the local services...
She doesn’t know the diagnosis and I think that is for the best....
She wants to go to Disney World one more time..so I am trying to set that up this fall...
Thanks..

Timyom, you might want to contact your local Alzheimer's Assn. and inquire if it still offers the Creating Confident Caregivers class, sometimes in conjunction with the Area Agency on Aging.   It was free.

I took it several years ago and found it extremely helpful.   It's taught like a class, with a manual, schedule and very good interaction between the instructor and class.   My class was small:  only 6 people.  

I learned so much, including from the other attendees.  

https://www.alz.org/help-support/resources/care-training-resources

The AAA is no longer participating, but does have other classes.

Hi Timyom. I’m very sorry for you and your wife. The reality of the diagnosis must be devastating. I recall the Dr appt where I was told that my Mom had Alzheimer’s. She was 70 and we had seen some signs for a few years preceding. My Mom is 78 now and lives with me. It is so sad to watch her decline. I would think going through this with a spouse is more difficult as the plans for your golden years following retirement aren’t feeling especially golden right now. My advice is to get educated about the disease as knowledge is power. If you have others that are willing to help, let them. You will need it in order to keep going. I was asked the other day what the long term plan is for my Mom. I responded that I don’t have one. I have learned that one day at a time works for us. I can’t predict the future so I just concentrate on each day as it comes. Cherish the good moments as they present and take care of yourself. I wish you strength and best wishes on this difficult journey.

So sorry for your situation, it can be very overwhelming, to say the least. You will go through many emotions, anger, fear, confusion, grief to name a few. It's a very unfair situation.
If I may suggest, read The 36-hour Day by Dr. Nancy Mace and Dr. Peter Rabin. I hope it can help you as much as it's helped me. I would also try and line-up help, physical, legal and emotional for both you and your wife, as soon as possible. You will need to have your breaks, rest and breathing space.
Thoughts and prayers for you.