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So New to this, shell shocked.
Internal Administrator
Posted: Tuesday, January 17, 2012 5:18 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Ruby Tuesday

I am so happy to have found this site. My husbands' neuro gave me so much info and I just can't read it right now. I am 54 and my husband is 72. We have been together for 18 years and I love him to death. I have been crying for three days now. I am sure I have been in denial.

I feel like I could go on with questions for hours but all I can't so I will just read and be so thankful this site is hear for me to get the information in such a loving forum.

Thank you Thank you Thank you!
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ben's wife

Fluffy, if you're here - I'm in NJ too. Call the Alzheimer's Association. There is a grant you might qualify for, no income restriction.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

Ruby, dear, you and I sound very similar -- about the same age when our husbands were given the diagnosis, about the same age differences between us and our husbands, and even about the same length of time together with our husbands when we first heard the news.

The big difference between you and I is that I heard the news six years ago.

Don't cry. Your husband could have many good years left -- and your marriage could have many good years left. Listen to sf. Take things one day at a time.

I'll bet your neuro gave you a copy of The 36-Hour Day. That seems to be standard practice. It's an excellent resource. Put it on the shelf, and look things up when you have questions ... but don't read it. It's very heavy going, and it will scare you to death. It talks about every possible symptom. The emphasis is on the word "possible".

We have a saying here: When you've seen one Alzheimer's patient ... you've seen one Alzheimer's patient. No two are alike. So the symptoms that one of our loved ones may develop may be totally different from another's.

The majority -- roughly two thirds -- have a relatively gentle journey. They never develop the severe behavioral problems you'll read about. But you'll read a lot about serious behavioral problems on this forum, for two reasons. First and foremost, the caregivers who do have to cope with severe behavioral problems need a lot of help, and so they post a lot. And second, we have caregivers whose loved ones have all sorts of different disorders -- not just Alzheimer's, but FTD, Lewy body dementia, vascular dementia, primary progressive aphasia, posterior cortical atrophy ... the list goes on and on. And the symptoms likely to develop and the way the disease is likely to progress differs for each.

So. First off ... breathe. You have time. Time to learn, and time to think, and time to adjust. Nothing has really changed -- you just have a name for why your husband has been displaying symptoms. But he's the same today as he was the day before you heard the diagnosis. And he'll be the same for quite some time to come.

When you're feeling a bit stronger, you may find the Newly Diagnosed article helpful:
http://www.alzcompend.info/?p=121

And for my money, the very best book on caregiving for a dementia patient is "Creating Moments of Joy" by Jolene Brackey. It's great -- full of very practical, simple advice on how to make our ADLOs happy -- and make us happy in the process.
http://www.enhancedmoments.com/
Click on "Products" and scroll down.

Educate yourself. Plan for the worst ... but hope for the best. There are ways to fight Alzheimer's, and you'll learn about them -- medicines, diet, exercise -- and if you are interested, you could look into participating in a clinical trial, too -- there are many promising new drugs coming down the pipeline.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Mimi S.

Hi Ruby,
Welcome to our site. We're so glad you found us.
And I'm also glad to hear that your neuro gave you lots of information. Too often we complain the do nothing.

Tell us more about your hubby.

And you have come to the right place for support.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ben's wife

Hi Ruby - The diagnosis is a shock to all of us. I think I made a lot of wrong decisions in that first year or so. I haven't been out without my husband in almost a year - I did have a day out last May & also September. I just got to the end of my rope, and made some calls. I visited a day care center with my husband this week. I'll be able to drop him off for a few hours, just to have lunch out with my daughter in law or niece. I have children and stepchildren - all adults. The step children have been willing to help, but not being with their dad very often, I think it scares them. Now that I can drop him off for a few hours once a week or so, I feel better.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: sf

Ruby, I'm sorry you've both had this terrible diagnosis. Others will send you important things to read and help plan, I can only say take things one day at a time and find what is joyful in each day. My husband was diagnosed with AD in his mid 50's. This site has been a safe haven for me filled with meaningful information, I"d be lost without it. Just know you're not alone.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Montanaman

the meds stopped working when it was the meds or the groceries. we paid about $500 a month for meds for a long time. even after i bought medicare rx and aricept went generic we could not afford them. we stopped meds about 6 mo ago and i have not seen a decline. he is about the same.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ruby Tuesday

Thank you all so much and thank you for the links. My neuro did give me the 36 hour day Razzer

Unfortunately, this has been going on for a while and I have just been in denial because I really thought it was a memmory "thing" and not a "pesonality" change type of thing. For the past year and a half, my husband has been on Namenda, the Doc never actually said he thought it was AD, the issue was skirted around in front of my husband.

All last year he was dealing with losing his way, remembering things, etc. What I would normally suspect as possible AD. So, because those aspects of his symptoms didn't appear to be getting worse, I really thought the Meds were working. Silly me, now that I look back at it all.

His personality started changing a bit. He started hiding purchases from me. He started drinking when he had never been a big drinker before. Why didn't I see this as part of the disease? I thought he was just being a sh*t.

He bought a Harly without me knowing about it until he got it home. He took off for the weekend and and got a DUI. Ended up in jail in another for three days and never called me. 6 months ago, they put him on a restricted license and he has been going to DUI classes. He has a blower on his car and can not turn the engine on unless he blows, so I know he is not drinking and driving. I told myself that it was ok, he was only getting lost, not endangering anyone else. This has all been going on sporadically for the last year or so.

The whole thing escalated two weeks ago when he started getting episodes of loss of time and location. Then he tells me he got into a hit and run accident. Of course it was the other drivers fault and he FLED the scene because he knows the judge is going to put him back in jail if he gets into an accident.

So, I got him back into the doctor and he told me that the medication usually on works for a year or so and then for some reason is not as effective. It dawned on me that my DH is not being a sh*thead but this is the disease. The doc confirmed.

The doc is going to notify the DMV and he will lose his license and he will be forced to retire. On one hand I am so glad that the Doc took the me off the hook with the whole driving thing, but his simple work is what I believe has helped him stave this off as long as he has.

There is so much more.

Thank you all so much.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

quote:
he told me that the medication usually on works for a year or so and then for some reason is not as effective

Not true. Every long-term study I've seen has concluded that the meds continue working for as long as the study lasted -- at least five years or more. Doctors somehow get the impression that because a clinical trial is designed to last, say, six months, that's all the longer the med works. Actually, that's the length of time needed to get FDA approval.

See: http://www.alzcompend.info/?p=244

Are you seeing a doctor who specializes in diagnosing and managing dementias? Because many neuros specialize on other areas, and know very little about dementias. You have some good "memory disorder centers" in your neck of the woods. See:
http://www.alzcompend.info/?p=14
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ruby Tuesday

Thank you for the links. The Neuro doc has referred me to UCI (which is on your list) so that he can get involved in some studies there.

I think I will take your advise, just take a breathe and settle into my new location (not in la la land anymore.)

thank you all again.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: cloudspn

Ruby, I'm so sorry. You have been through so much. Hugs, I feel your pain.
DH is sitting here saying he'd like to trade his Blazer for a truck, no sense that there is no money.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: terromari

quote:
Originally posted by lurk:
Montanaman, couldn't you at least keep on the Aricept? By the time you notice a difference, he may have gone downhill a lot. Our Aricept is only $15 for three months. I wouldn't want to take the chance. I'm so grateful each day for the togetherness we still enjoy. I don't want it to end.


My LO definitely declined when govt took him off Aricept both times. I wish I'd have questioned their first decision and fought it, but I trusted the VA doctors -- big mistake.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: lurk

Montanaman, couldn't you at least keep on the Aricept? By the time you notice a difference, he may have gone downhill a lot. Our Aricept is only $15 for three months. I wouldn't want to take the chance. I'm so grateful each day for the togetherness we still enjoy. I don't want it to end.
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: JAB

There are a number of good websites on finding financial assistance for prescription meds at:
http://alzheimers.boomja.com/F...ssistance-27304.html
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: arteche

I wonder where my DH would be today if he was on any meds,he took arecept for a while then stopped. He will not see a DR. (as many of you know)maybe if he did he would be taking baths and brush his teeth.

I only wish he would see a Dr.,I will try the mobile DR.s again. He sleeps about 15 to 17 hours a day, he will not go anywhere.

Ruby make sure he takes his meds, I don't post much because mine is a lost cause but you hang in there.GB and many hugs
Anonymous
Posted: Tuesday, January 17, 2012 5:18 PM
Originally posted by: Ben's wife

My husband is in his 6th year after diagnosis. He is on Namenda and Aricept. I don't know if they're working, but for the biggest part of the time, he's doing okay. In excellent health at 88. Sleeps a lot, more childlike than anything else. I just found out about Adult Day Care, and plan to try that for the first time next week. I pray every day for enough patience to get through the day. It's good to know that others share the pain, and understand what we're going through
 
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