New diagnosis for my DW

coloradobear

My wife was diagnosed about a couple weeks ago with Alzheimer's. She had been exhibiting obvious symptoms since mid-2020, though, could've had some earlier that were attributed to aging.

So, I am at a loss as to where to begin care taking and how to plan for the days to come. Is there any place to look for these?

Humbly, thank you.

charley0419

This site great for all questions, what’s your behavior now?

coloradobear

My DW has short term memory loss plus has trouble with some basic things like going into the bathroom and not knowing how to turn the lights on. The more concerning issue is she claims to 'see people' during the night, that they come into the bedroom and insult her or take her clothes. So, she has taken to moving her clothes around to sort of hide them. But mostly, she feels they don't have a right to tell her what to do in our house. I tried pointing out they are there once but she got very upset. I've never said that I can see them and she feels I'm not taking her seriously.

I am also reminding her to show regularly and to wear fresh clothes. She is middle stage, I would say. She's aware her diagnosis but not the ramifications.

M1

Welcome to the forum. Look for the post on the caregiver's page called "excellent Handout Packet,", it has a number of links to good publications about understanding the dementia experience, and staging. Many also recommend the book entitled "The 36 Hour Day" as a good read and reference.

Your wife having delusions/hallucinations is certainly a mid- to late-stage symptom. There are medications that can help with these--they are usually unpleasant for her as well as you. You should definitely discuss this with her docs--Seroquel and Risperidone are two of the so-called "atypical antipsychotics" that are frequently prescribed and generally well tolerated. Both can help with sleep fragmentation also. You are correct not to try to deny them, they are very real to her.

You need to be sure you have power of attorney for her for finances and healthcare--if you don't, a certified elder law attorney can help you with this. Your own documents also need to be updated, as she would be unable to serve in any such capacity for you (you can do that separately, if you wish). You also need to think about how you might finance long-term care, should she eventually need memory care placement.

Sorry you are facing this, but you have come to a good place for support and practical advice.

coloradobear

Thank you for your advice and insights.

ButterflyWings

ALZ Stages TamCummings.pdf

Here is the link to the handout pkg M1 referenced. It is "a lot" at first glance, but not all of it will apply to your current stage or situation and not all things that happen to some PWDs will necessarily be in the future for you and your DW. Each person, brain and diagnosis is different. But we find it best to read as much as possible, just in case.

This forum has been my lighthouse and lifeline through 5 years of our inevitable downward spiral. You've received some excellent input so far. The members are the best resources that exist, bar none and our neuro doc referred me here on diagnosis for that very reason.

This free article on "Understanding the Dementia Experience"

https://www.smashwords.com/books/view/210580

by Jennifer Ghent-Fuller is also often encouraged for "newbies". I am sorry you had need to join our elite club, but glad you found us. There is much wisdom, compassion, and experience here.

ghphotog

Coloradobear, This is so very much like my DW. I've been dealing with hallucinations and delusions for a couple of years now. I thought at some point she would move out of this phase but so far, not yet.

Hang in there and seek advice here. It's a great resource and the people here that are ahead of you or who've gone before you have a great deal of wisdom and insight.

coloradobear

https://alzconnected.org/discussion/comment/190059#Comment_190059

Thank you for the link and PDF and your kind words and support.

coloradobear

https://alzconnected.org/discussion/comment/190097#Comment_190097

Thank you for sharing your experience and encouragement for using this site.

darcytg

Coloradobear,

Welcome. I am new, too.

My LO has indicated she sees a person in her room at night a few times.

This forum has been a lifeline for me.

Such a tragic and poignant journey we're all on.

Glad you're here.

jfkoc

Type of dementia is difficult to diagnose. Please go online and read everything you can about the protocol. Then make certain your wife's diagnosis was made following proper protocal.

Please keep your neurologist in the loop. They will want to be informed and will possibly make a referral to a psychiatrist for drugs prescriptions.

What to expect? Hard to say but being educated is going to hel you and you wife with whatever comes your way.

Additionally we are always here to listen and help as best we can.

coloradobear

Our neurologist prescribed a medication called Quetiapine, however, has not made a referral to a psychiatrist. Has anyone had experience with this drug? I'm thinking I need to push for a referral before giving this to my DW, as I have no idea what outcome to expect (outside of the possible side effects that I Googled).

Thank you.

M1

quetiapine is the generic for an. atypical antipsychotic with brand name Seroquel. What you probably saw on Google was that it carries a "black box" warning for vascular events in the elderly. Despite that, I would reassure you that it's a well tolerated and effective medication in dementia (my partner takes it, as well as many others on this forum). The doses used in dementia (typically anywhere from 25-400 mg per day) are less than what are used in schizophrenia (up to 800 mg/day). FWIW I'm an internist--I would tell you that it's okay to try it even while you are waiting on a referral (which is never a bad idea). There are occasional adverse reactions (such as increased agitation rather than decreased), but it's generally pretty well tolerated and is a standard first medication to try. The benefit of starting a referral would be that if it's not effective or she needs a dose change, then you have the expertise in place.

If you search, there are many many threads about quetiapine/Seroquel, it comes up frequently. I hope it helps in your case.

coloradobear

One question I have is as to its effect (and my apologies for my naive question). Does it make the hallucinations go away?

M1

Answer to that is possibly, may be dose dependent... Or at least dampen down her response to them. definitely worth a try.

coloradobear

https://alzconnected.org/discussion/comment/199843#Comment_199843

Thank you