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liebekatie Asked January 2014

My fiance's step dad was diagnosed with Alzheimer's in 2007 and has refused all medication. How long before he becomes really ill?

He is still driving. Still has guns. Still handles all the decisions for himself and his wife. We have noticed judgement problems, paranoia, depression and other issues, but beyond a few isolated incidents, he doesn't seem to be too forgetful or getting lost. His wife is older than he is and very frail, so her son wants to start being responsible for her care. Step dad is very resistant and will not allow it. I know he is eventually going to become very ill, but at this point he is still very active. How long before he needs full time care? We are trying to plan without any imput from him - he is still in denial. We know we have to get ready for this, but have no contact with the doctors since we are not blood relatives. His wife, my fiance's mom, is deaf and also in denial about the situation. She has no idea what she has ahead of her and we have to get her ready. How long do we have?

jeannegibbs Jan 2014
I understand why you would want to have some idea of how much longer the dementia will last until it gets much worse. I expect every caregiver would like to know that, for very practical reasons as well as emotional ones. [For example: If I put in a sloping sidewalk/ramp now, how much longer will he be able to use it?]

But Eyerishlass is totally right. Dementia progresses, but it does so at its own pace. No one can tell you whether it will be next month or next year or the next decade when Stepdad will no longer be able to live at home. I'm glad your GMA was a sweetie. My husband was too. But Stepdad obviously isn't. You'll have to try to remember that there is something very wrong in his brain. But even if his behavior is not within his control, your fiance is going to have to deal with it in order to give his mother the best care.

Without knowing how much longer SD will be as he is now, I suggest that the two of you, with Mother's help if possible, deal with the situation as it is now. For example:

1) Go to the local sheriff or police and express your concerns about weapons in the home of someone with dementia.
2) Get this man off the roads!! He is endangering not only himself but the general public. If you think it is hard to stand up to him and not let him drive when you all go somewhere, think how hard it would be to face if he runs into a mother pushing a baby buggy, killing them both. Notify the DMVs that he has dementia and his judgement is impaired. What they will do will vary by state, but at least you've been a conscientious citizen.
3) Whether you are a blood relation or not, a doctor can talk to you about someone who has allowed that in writing, and cannot talk to you without that consent. BUT a doctor can LISTEN to anyone. Write your observations and concerns about SD and send this to his doctor, saying this is information you think he or she would want to be aware of, to best serve his patient.

My husband didn't have Alzheimer's but Dementia with Lewy Bodies. Most of the literature states this kind of dementia typically lasts 5 to 7 years. Within my caregiver's support group, on member's loved one died in less than two years and all of the symptoms became rapidly worse that whole time. My husband lived about 10 years and was able to be at home the whole time. The averages you can find online are just that -- averages. None of them tell what the progression of any one person will be like.

I truly wish we could say, "Oh, if he was diagnosed in 2007, by 2015 he will be having x, y, and z symptoms." Sorry. It just doesn't work that way.

It sounds like your fiance and you are trying very hard to do the right thing. This is never easy. I wish you strength and perseverance and success!

pamstegma Jan 2014
You are not wasting our time Katie, but you seem hesitant to act. Had people in Newtown had the courage to act, Sandy Hook would not have happened.

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liebekatie Jan 2014
Forgive me, @Eyerishlass and @pstegman - I was not trying to waste your time. I sincerely wanted to know if there is any sort of timeline involved. All of the things I have read online say that it can last anywhere from ten to twenty years. And @Eyerishlass, your info hit home with me. It could be any day. We have no way of knowing. My family went through this with my grandmother, but she was sweet up to the end and there were four siblings to manage her care, all who were completely devoted to her. I have to break free of trying to think that her timeline will be his timeline. There is just no way to know.

And please don't think I was trying to waste anyone's time or that you are an idiot for answering me so thoughtfully. I needed more info and you gave it. I am very grateful. I know that people in these sort of situations do not have a lot of free time and I value the time that you took to write. I am sorry if the question seemed the same. Please know that you gave me valuable help.

Eyerishlass Jan 2014
Well I feel like an idiot. I guess I should have paid more attention to the name on the post. I thought this was a different question from a completely different person. I just wasted a lot of my time answering someone I thought needed help. Duh.

Eyerishlass Jan 2014
There is a very, very similar post to yours on here right now. Look on the front page of Questions and Discussions. The title of the post has the word "Japanese" in it. It's about the son and fiancée of his mom and stepdad. I think it would be great for you to get an idea of what's in store for you and your fiancée.

Unfortunately, your fiancée has no say-so in his stepfather's care. All of the decisions are going to be on his mother. Of course your fiancée can have discussions with his mom about her husband but when it comes to the stepfather your fiancée's hands are tied.

As far as how long you have before the stepfather's illness is out of control there is no telling. As you know, Alzheimer's is a progressive illness. Things could go terribly wrong this afternoon or 6 weeks from now or in 2 years. There simply is no way of knowing. Since the stepfather's already showing signs of the illness (errors in judgement and paranoia) you can be sure that these symptoms are only going to get worse as time goes by. You're right to want to get the ball rolling and nail down some decisions now.

The stepfather should be relieved of his weapons immediately. Either get them out of the house or have him surrender them to the police. I wouldn't include the stepfather in on this. Just take the guns away. Someone with Alzheimer's has absolutely no business having guns.

And if his judgment is clouded he should not be driving either. But getting the keys away from him will have to be the mom's job. Your fiancée can discuss this with her and support her but it's her responsibility to take care of this.

However, if the mom is in denial about this she's not going to be an active participant in any discussions your fiancée may want to have with her. You said she is very frail so I'm assuming that she won't be able to care for her husband as his illness progresses. And your fiancée wants to be involved in her care? I don't see how he's going to be able to care for his mother when her husband won't allow it. Even if the stepfather welcomed the help your fiancée wouldn't be able to care for the both of them.

Don't wait for the next 'isolated incident'. From now until he's completely mentally incapacitated there are going to be numerous 'isolated incidents'. One right after the other as the Alzheimer's progresses. The time to start a dialogue with his mother is right now. But don't be surprise if she digs in her heels and refuses to discuss it much less makes plans.

Then there's Adult Protective Services. When your fiancée feels the situation is getting out of hand or preferably before that, he can call APS and get them involved. Get the phone number today and always have it handy. In my opinion this situation is headed for a crisis and it's always best to prepare for the worst than to be left picking up the pieces. APS can guide your fiancée, offer alternatives, and give support. The fact that your fiancee is not blood related to his mom's husband is going to be a huge hurdle.

And lastly, your fiancée needs to become his mom's Power of Attorney and her Medical Directive representative. Some people advise seeing an elder care attorney for this but I downloaded the papers off of Legalzoom.com for my dad and never had a problem with them. The stepfather cannot be his wife's POA because he is incompetent. Maybe not legally but he is. This is a job for your fiancée. Get this done immediately.

There are so many articles available here about Alzheimer's and aging and legal issues to name just a few. I hope you can spend some time here and do some research.

Good luck and let us know what's going on.

liebekatie Jan 2014
Sorry if this seems like the same question. What I really want to have is feed back on how long before he becomes more helpless, as he still able to "fake it."

pamstegma Jan 2014
This is the same question you asked before, and the answer is the same. Report a mentally incapacitated person with guns to the police. He is already very ill, abusive, aggressive, paranoid and hoarding per your description. He's a shootout waiting to happen.

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