New and struggling

djhicks · February 27

This is my first post. Not sure what to expect, but here it goes.

My wife recently received a diagnosis of psychosis and vascular dementia, moderate with agitation. The agitation is mostly direct d towards me because she seems to view me as the villain of her story out to get her. It's led to some troubling behavior, sometimes physically violent. Because she views me as the bad guy, she resists and often refuses to let me help her. The anosognosia is hard to deal with too. This once reasonable person whom I've loved for over 30 years cannot see that she is sick and hurt. It's hard to help her any any way most days because she thinks I have some nefarious motive. I feel like I'm stuck in a bog or quicksand with very little ability to move forward in caring for her.

On top of this, she developed AFIB and a few related heart conditions. I fear that one morning I'll find her unresponsive. Her rejection bof my help and care limits my ability to know if she's been taking her meds. I'm really at a loss about how we can move forward.

Ed1937 · February 27

https://alzconnected.org/discussion/68323/new-and-struggling

Hi dj. Welcome to the forum, but I wish you didn't need it. It sounds like you really have your hands full. I'm sorry. The primary caregiver is usually the one who gets blamed for everything, and they pay the price for that. If I were you, I'd talk to her doctor, and tell him everything that concerns you. There may be medications that will help her be more calm, and that could pay off very well for you. I'm sure others will have more to say. If you don't get more answers tonight, log in tomorrow.

M1 · February 27

Welcome to the forum. Ed is definitely right, there are medications such as Seroquel and risperdal that could help calm her paranoia. I am so sorry about the atrial fibrillation because it is so hard to manage, and anticoagulants are difficult under the best of circumstances. That’s going to require some careful conversations with her docs.

Have you considered having someone come in? Or memory care? There are people who cooperate better for strangers than they do for family.

you have come to a good place for advice and support.

Pat6177 · February 27

Dj welcome to the forum. Almost all I know about dementia, I have learned here.

For basic info, go to Groups in the top purple banner, on the right. Then go to New Caregiver group. Lots of links to info and postings with info you need to know.

i agree with Ed, talk to her doc about medications. She is probably uncomfortable with the agitation. You can also take short videos using your phone that show her agitation especially if she covers up that agitation when at the dr office.

There are common mistakes new caregivers make. Like trying to have a rational conversation with someone whose thinking ability is fading. You can find some videos on YouTube by a woman named Tam Cummings that talk about ways to interact with our PWDs. They might be helpful.

It’s never too soon to start thinking about the future and whether you DW will need memory care. A visit now to a Certified Elder Care Attorney will help to determine how you will be able to deal with that financially.

Most important, keep reading the posts on this forum. There’s a wealth of info on here.

WIGO23 · February 27

One of the first things I did after my DH’s Alzheimers diagnosis was to read “The 36 Hour Day”. You might find wisdom there too.

I do not expect my DH to be able to acknowledge his disease because that is part of his disease!

You certainly have been dealt a difficult situation in many ways, both emotionally and medically.

My first helpful mantra I developed when my DH would blame me or get agitated with my help was to say to myself, “This is the disease talking” not my DH. The second thing I learned was to diffuse the situation by literally going to another room at least momentarily (excusing myself to the restroom worked).

If you find even small solutions that work, then feeling overwhelmed can be lessened. Your caregiver skills will grow even as you make mistakes. Be kind to yourself when you make those mistakes.

I wish you were not on this journey but all of us here are walking along with you.

Jeanne C. · February 27

Welcome- when my husband was being diagnosed it was awful. The paranoia, anger, anxiety, etc., were brutal. And I had no idea what I was doing or dealing with. Not a great combination. Once he was finally on meds, things went much more smoothly. Unfortunately it took an emergency and hospital stay to get him on medication. I truly hope it doesn't get to that point. But please keep yourself safe. And remember that if she is out of control, it's kinder to have her admitted to the hospital/geripsych unit so she can be helped by the right medications/treatment.

Direct link to the new caregivers group @Pat6177 mentioned:

https://alzconnected.org/group/32-new-caregiver-help

SSHarkey · February 27

Welcome! DJH! You’re in a seriously hard place. The diagnosis is bad enough. But the behavioral changes make it even more difficult. Do keep in mind that you cannot expect her to be rational or to have the ability to monitor her medications. You may need to take them over, bringing them to her for each dose. It’s certainly something to consider.

djhicks · February 27

https://alzconnected.org/discussion/comment/199861#Comment_199861

Thanks for your insight. I have been considering most of what you mentioned and discussed with her doctors about trying to get some in-home care. Just kind of overwhelming to navigate it and caring for her as she resists me. Thanks again.

djhicks · February 27

https://alzconnected.org/discussion/comment/199858#Comment_199858

Thanks. They have prescribed some meds for paranoia and mood. I just can't be sure she is taking them consistently or at all. Appreciate your support.

djhicks · February 27

https://alzconnected.org/discussion/comment/199863#Comment_199863

Thanks. Appreciate you pointing me in a helpful direction.

djhicks · February 27

https://alzconnected.org/discussion/comment/199876#Comment_199876

Thanks for the book reference. I'll check it out. I'm still struggling with not trying to reason with the dementia and defusing the situation. Still kind of new, but knowing for sure what the diagnosis is has helped.

djhicks · February 27

https://alzconnected.org/discussion/comment/199889#Comment_199889

Thanks. Exactly what I am dealing with. We've already had two hospital admissions. The second was the one that confirmed the diagnosis and the first attempt at prescribing meds. Still navigating that. Had to resort to locking the bedroom door at night just so I can get some sleep.

M1 · February 27

Dj, couple of additional comments: first, you probably need to be giving her her meds and watching her take them. Nothing short of that will work. Since she's so resistant, you may want to ask for liquid formulations that you can mix into food or drink if you have to. It's hard to get used to doing this, but you can't assume anything any more.

Second, not sure if you mean you are locking her in or out at night, but neither is really safe, she could get into major trouble either way. If things are this unmanageable at home, she may need to be back in the hospital and perhaps placed into memory care from there. Do you hold power of attorney for her? If not you need to talk to a certified elder law attorney asap.

djhicks · February 28

https://alzconnected.org/discussion/comment/200004#Comment_200004

Thanks. I'll look into the options for her meds. I lock my door at night. But, I realized it is just a temporary solution to the problem if we can't get the meds situation stabilized.

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