EO Dx- Is Dr Doing Enough?

JacMash

My DH received his EO Dx last month. His Neurologist started him on Aricept. At the follow-up meeting my DH was doing well/tolerating the med. She wants to see him in 6 mos. I asked her what else we can do? (He is taking his rx, exercising, vitamin supplements, eating well, started working puzzles). Her answer was, 'Nothing." As in, there is nothing else we can do.  We are not ready to accept this is all there is.

 My question is Is this normal treatment for EO Az? Just one Rx and healthy lifestyle? 

Thanks~Jac

Stuck in the middle

Yes.  If he has AD, he has a fatal illness.  The med will enable him to function better, until it doesn't, but won't delay the end.

What you need to do now is see a lawyer who specializes in elder care to setup powers of attorney so you can prepare for the time when you have to take full control of your household.

Sorry you have to be here, but welcome.

Joe C.

Jac, Unfortunately there are very limited options for treatment of AD. Stuck suggestion about see a Certified Elder Law Attorney ASAP should be at the top of your TO DO list, delaying this can have devastating result if you wait to long. My suggestion is make the absolute most of the time you have while your DH is still high functioning, do the things you always planned on doing later NOW.

Iris L.

Best Practices (you're already doing)

Get legal and financial affairs in order

Modify the home in regards to safety issues 

Read the online reading material and the message boards

Join a support group

Do your Bucket List now.  Don't wait.

Iris L.

Ed1937

Jac, welcome to the forum. You will gt a lot of good information here, as well as support. Add my vote to see a CELA (certified elder law attorney) ASAP. Do not put this on the back burner. 

Unfortunately, doctors have no magic bullet for this disease. You will learn much more about it here than you will from a doctor. Here is a link to some good reading that you should brush up on. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

dayn2nite2

There's no treatment.  Terminal disease.  Get your legal affairs in order and try to get through each day.

Kenzie56

I know some of the responses seem "to the point" and probably not what you wanted to hear. We are here to support one another and many have been going through this for years. The advice is invaluable on this site and some things you may not be ready to hear...but put the suggestions in your back pocket - they will be important as time goes on. I ditto everything that has been said - legal issues need to be addressed sooner than later and while your LO is responding to meds, enjoy this time.  The meds don't "fix" the disease - they are temporary. Please know that we are all here to share stories and get advice. This is a wonderful support network. I don't post often, but I read posts every day and learn. My DH, his mother, brother and sister all have dementia. This has been a roller coaster for me and this site has helped. We are here for you, too!

towhee

Jac, there is also an additional medication called memantine(namenda), but it is usually not prescribed until the middle stages of the disease. It also might enable your LO to function better, but is not a cure in any way, I am sorry. Alzheimers is unpredictable, your LO might have years near the level he is now, or might progress quickly, no one knows. Please use this time to plan ahead and learn about the disease, I know it is hard, but easier now than when the wheels start to fall off. Unfortunately Alzheimers is not so much about treatment but about quality of care.

Forum members recommend The 36 hour day (book), finding a support group for you, outside the home activities for your LO if possible, Understanding the dementia experience (article available for free online) teepa snow videos on you tube, dementia careblazer videos on you tube.

If you have the typical neurologist, since there is so little they can do in the way of medications, they can not offer a lot.

The forum is always open for any questions or just support, just remember that people most often post when they are having problems and you will not run into every problem, don't let posts discourage you.

Best Wishes

Rescue mom

Jac, i well remember what my first encounter with the neurologist was like—almost identical, except my DH was further along. I kind of  expected Dx like Alzheimer’s but I thought with the Dx they could tell me more or do more. I was wrong.

I was gobsmacked at how little help, actually no help, they provided. I expected much more, I thought they could tell me much more about what would happen when. It took a while for me to learn they simply cannot. 

There is no more they can do, most every PWD has different losses at different times and it’s not predictable. We were already living a healthy lifestyle, eating and exercising etc., so that advice wasn’t much help although it’s good to do.

As others said, travel or do as much as you can right now. It will not get better “later.” Don’t wait, do what you can, now. And absolutely first, get your legal and financial affairs handled or changed so you can take over. You may not think you need that right now—but tomorrow could bring a big change and/or a crisis, and you *will* need them, usually right then. From what I’ve heard, it seems like EO often moves faster than with others.

Especially watch finances. Many PWDs very early lose money managing abilities. They will make big, crazy purchases, give away big amounts, and fall for scams easily. My own DH seemed to be ok on this, except it was tax time and I thought he’d been handling and keeping up with those documents. I was very very wrong.

Check into support groups. I learned far far more in those groups and here than from any doctor. Your local Alzheimer’s Association usually knows of, or runs, several. The local AA can also, for free, advise you on what you need to do and what services are available locally, such as home care helpers and legal experts in these matters. They don’t recommend any one, but give you lists so you can choose.

I am sorry. It’s a hard road, we’ve been dealt the worst hand, and now we have to play it. Sometimes knowing you’re not alone helps, most others here are in the same “game.” This board a great place for advice, information, and venting, people here understand what it’s like.

JJ401

Unfortunately, your doctor was being realistic. There is nothing that will change the inevitable outcome. The drugs, vitamins, exercising, puzzles , etc all may delay progression by a short time, but progression will occur.

I have found that keeping to a routine helps keep my DH level. Spontaneity does not work well here. I try to keep things routine, just as we did when the kids were babies/ toddlers. 

For yourself, keep reading here. Ask questions. The members are helpful. But, don't expect sugar coated answers to difficult questions. You'd love to hear, I'd love to be able to say, that there is a magic cure. There isn't. Its hard to accept that there is nothing more medically to do. But, once you accept it you can move on to the realistic-- making every day the best you can.

Cynbar

I agree with all the other posters --- our doctors have been very little help and have given us almost no direction. It was frustrating for me too at first, until I realized that really nothing can be done to slow down the disease, and every patient is so different that it's hard to predict disease progression. What you can do, however, is prepare yourself for what lies ahead. Others have said to start the legal and financial planning --- this is so crucial. A certified elder law attorney will help you get the necessary documents in place, and start working with you on financial planning. It is likely you'll need help in the home, and many (but not all) PWDs need placement at some point, either due to caregiver exhaustion or safety concerns. If your DH will need Medicaid, start educating yourself about the Medicaid rules, to make sure you don't make mistakes that would jeopardize his eligibility. Once that is accomplished, turn your attention to adjusting your daily life. Your DH has a diagnosis of EO so he must be showing symptoms and having issues. Keep an eye on his spending and his ability to do his usual tasks, many caregivers don't see this clearly and think their LO is doing better than he is. Especially keep an eye on his driving. I know in my case, I was shocked at how bad DH's driving was when he had to bring me home from a procedure. And, if your DH had an accident (even if not his fault), once he has that diagnosis it is easy for the other party to sue and you two could be cleaned out.

I know all this feedback must be so upsetting for you and not what you hoped to hear. This is a tough diagnosis for both of you, and it only gets worse. There best thing you can do to prepare is to come to these boards often, so you can learn what lies ahead. With all our collective experience, we have seen about everything and can give support and advice.

Paris20

JacMash, I know how you feel because I went through the same questions when my husband was first diagnosed several years ago. It’s so hard to see our once active, bright, and vibrant spouse decline mentally, physically, and emotionally. We want to DO SOMETHING. We want our doctors to give us guidance, a how-to roadmap to get us through what’s ahead.

Unfortunately, there’s not a great deal that anyone can do. Diet, exercise, meds, might help a little in the short run, but in the long run this disease is terminal. You should see an attorney, as others have said, keep the neurologist’s appointments, and be attentive to safety of DH who, over time will not be able to be alone, drive, work, continue doing work around the house, and may never realize anything is wrong. 

Please avoid the advice of well-meaning people who know nothing about dementia, except by second and third-hand accounts. No crossword puzzle, vitamin, town, country, or doctor has come up with a cure for this horrible disease. The people on this forum know that. We do our best to help and support each other. Welcome to the group that no one wants to belong to.

Jeff86

All the comments and advice here are right on target.  So sorry that you are experiencing the shock that all of us caregivers have experienced, that there is nothing we can do to address or change the progress of the underlying disease.  This AD is one of medicine’s most intractable challenges.  The best and most we can do is address and manage symptoms to give our LO the best quality of life possible.

The only thing I’d add to what has already been said, and well said, is that even as you focus on taking care of your LO, you need to make room in your life for your own self-care.  The line goes something like, AD will take one life but it doesn’t have to take two.  The stresses, the demands, the heartbreak, the losses that come with AD are enormous, and you must take care of yourself if you are to provide care for your LO.  Remember the air travel directive to put on your own mask, first.

aod326

You've seen the consistent response; it's sad and shocking that there is no treatment. Even the drugs mentioned are only effective in a limited population, for a limited time. As the disease progresses, your DH may well benefit from medications to help with certain symptoms, such as an anti-psychotic for anger or hallucinations. There are no medications that will halt AD.

I notice you said "we're not ready to accept this is all there is". I totally understand that emotion; however, honestly you will save yourself and DH considerable stress and heartache if you do accept it. As the disease progresses you will need all the emotional energy you can muster, and you'll learn the value of accepting the things you cannot change.  

That doesn't mean you're being negative. As others have said, this is your catalyst to start doing all those fun things you'd always been planning - don't wait!

Come back here often - it's a lifeline. You'll learn way more practical tips about how to manage the disease, as well as get moral support.

Good luck.

JJAz

The only other thing that you can do is join a clinical trial that is trying an experimental medication.  ClinicalTrials.gov

1962ART

After reading all these posts, I just wanted to thank everyone who wrote in.  I agree totally with what has been said.

I agree with everyone who said, "Take care of yourself."  Find support.  This is very, very hard work.  Some caregivers are just wonderfully patient people.  I am not one of them.  However, slowly, but surely I am trying to live each minute with my DH.  He doesn't remember plans we made from day to day.  Each minute, he resets from mad to cooperative.  I am trying to just go with the flow and not hold on to comments or feelings.  They are as ephemeral as his memory.  We can be at opposite sides in a discussion and he can blink and completely agree with me.  It just is what it is.

Your relationship will change from husband/wife to patient/caregiver.  This is a quantum shift.  I have been very hurt by this for several years.  Can you imagine it's taking me so long to get used to it?  It's true.  I have to keep reminding myself that I love him and he had/has so many wonderful qualities.  He is the father of our children and has taken good care of us our whole marriage.  It can be a lonely time because no one knows your relationship except you two.  

Best wishes coming your way.

Iris L.

May I suggest that your relationship might still be fulfilling if you change your perspective?  You say his mind flip-flops.  So does mine.  It used to bother me and apparently it bothered my husband because he withdrew emotionally from our marriage.   I still loved him. I just could not remember.  He burdened me by asking too many unnecessary questions and expecting responsibilities that I could no longer handle.  My suggestion would be to remove responsibilities and stop asking so many questions.  Live more in the moment and enjoy what you two can still enjoy together.  PWDs cannot tolerate stress or anxiety.  

Iris

Laurention

Jak..... Not much to add ..You've been some great advice from the others here . There is nothing the Dr's can do.. AD and EOAD are totally unpredictable, and there is no cure. 

Number one ...Get your affairs in order Power of attorney etc. Next up ???? go have a good time , don't put it off !! My DW at the age of 54 was DX in November 2011 ..The Drs said possibly 5 good years ?? The number was actually half of that.. We spent a whole lot of money in those two and half years ...I don't regret a dime of it.

 Her care went beyond my caregiving skills so i reluctantly   placed my DW in LTC Feb. 13 2017 . DW was then 8 days past her 61st birthday.   I lost my bride of 47 years on January 8 2021..

I miss her everyday...best of luck my friend

Mike 

JacMash

Hi Friends. (Yes, you all automatically entered friend status with your sound advice, encouragement, and compassion.)

Thank you for your candid replies.  I think I am over the hump of hoping for more help from the professionals. It is what it is.  I have a thick skin, so no problem for those of you who got right to the point.  I actually appreciate that- no pussyfooting around. We have moved on both the legal and financial fronts and are secure there. I am working on SS Disability. We have a vacation planned, a lazy go where we want trip with no real schedule. Time for me to begin really focusing on what we can do NOW.

Thanks, everyone.