Help! Need to find another place. His LBD and aggression are too much.

@maryvc Oh my goodness. I’m so sorry that things have taken such a down turn for you. You had so much under control and were working so hard to keep your husband safe! I wish I could help. @becsbuddy

I know. So sad. We had no idea how this would progress and manifest. I guess that’s the lesson. I can’t control how this will play out. Best laid plans and God has another. I need guidance now.?

It’s important to understand that the facility medical directors and the psychiatric unit MDs have to play a very careful dance with medications related to your state’s requirements, which frown on what they consider “chemical restraints”, just as much as they do “physical restraints”.
When you visit, look for the basics- cleanliness, food quality, residents appearing well-cared for, but it’s also a fact that staff turnover and call-offs are big issues. Admin will give you a song and dance about everything because their primary goal is to fill beds with paying customers.
It is great news that two facilities are willing to take him- many would refuse due to the identified danger of injury to staff, possibly resulting in Worker’s Comp claims- one less worker, a lot of extra expense.
I would go about it in a bit of a different way- think long and hard about your hubby’s behaviors- what seems to set him off? Time of day? When he’s hungry? Other people with certain characteristics (men with gray hair? staff wearing red?). You visiting? You know more than you think you do- write it all down, ask the aide staff at his current place.
Think about what soothes him- does he like to pace? Are there clear areas to do that? Does he like music- can he have a radio, with you posting favorite stations? Memory Care runs on a 24 hr basis- is he up at night? Are there favorite snacks he likes (you will probably need to buy them and keep them stocked). My husband doesn’t like the snacks and small cans of generic soda his facility has, so I buy what he likes.
You know him better than anyone and the more information you can give them will help him and them. Think of it as a partnership with the well-being of both sides as a goal.
Sending hugs and wishing you two all the best.

Mary,
That makes me so very sad for both of you and all your plans. I've been following your plans since you wrote that you put down a deposit some time ago.
Just a couple of months ago, you wrote about taking your husband out in your new community to a dance, and you had a special dance with your sweetheart. I was thinking how perfect for both of you; he would be getting cared for in Memory Care, and you would be close by in your new apartment.
I'm so sorry,
Trish

This has all been so sad. He is still in the latest psych hospital and way worse. They gave him 25 mg of Haldol last weekend. He pushed a resident who then needed stitches. And the two places I thought would accept him have turned him down.
I am so upset about the Haldol - his parkinsonianism is worse. I’m also upset about the incident but this is not him. It’s the Lewy.
@centre you are right on about it all but I have little control other than warning staff about certain fixations. And now on a mission for a more appropriate setting.
Trish if you’ve been following me you can imagine the devastation.
I wish I had chosen a strictly memory care facility instead of the one here but I can’t look back. Things have progressed as I was told it would but all of its wrong- wrong meds, environment, all of it. I’m so sad and feel helpless.
I’m now thinking out of the box and may have to think out of town for placement.
Thank you all for your thoughts and we need prayers.
I’ll keep you posted.

Mary, I am so so sorry! And I admit I am upset and even angry on your behalf.
Haldol!? That seems like malpractice. Haldol and that class of meds are absolutely contraindicated in LBD patients, as I am sure you know. I am so sorry!

My husband also has LBD, and his Mayo neurologist added “allergy to Haldol”to my husband’s permanent electronic medical record, because he said it is still given to LBD patients, even though its contraindication is well-established.

My sister and her husband, who had vascular and Alzheimer’s dementias, went through something similar when he—suddenly and uncharacteristically— became violent in his beautiful memory care facility. She went through the same nightmare you are living. Some time in a psychiatric ward helped adjust his meds, and his behavior mellowed again, but it was not easy to find a different place to take him. When she did, the thing that made it work was a relationship with a certain male aide who took Bob under his care. My sister showered this young man with all the reward and thanks she could, and he was with Bob when Bob died. Always attentive and in touch with her.

My sister was lucky that man worked there, but she would have hired him separately to attend Bob in the facility if she had needed to. Is it possible to hire a caregiver to attend only to your husband, especially if there are certain times of day when he has more trouble? It would be an expense, but…

You said the memory care unit in your CCRC is not a strictly memory care facility. Does that mean it is not a secured, separate place? How would a strictly memory care place be different—are they usually stand-alone facilities that are not attached to CCRCs?

Mary, I, too, have been following you for some time. I pay special attention to LBD caregivers, because LBD is different—including dire reactions to common psych meds, as you well know— but also in the unpredictable, fluctuating way it progresses; there are no stages in LBD we can look to. And I have been looking at CCRCs, but given your experience, I realize I don’t know what I don’t know.

But I do know enough to know you have done everything right! Everything possible and proactive you have done! I wish I could come alongside you to help, but you have my prayers.

@nelms My husband’s three admissions to psychiatric units were no help in determining meds. Each time he came back worse and was still aggressive, but now he can barely walk from this last week in another psych hospital. They gave him Haldol last weekend and now his Parkinsonism is so much more apparent. It’s so sad. He can barely stand straight. Can’t walk without 2 people assisting and more tremors.
They are discharging him on Monday back to the Memory Care that will only keep him another couple weeks.
I feel stuck. I called other memory cares and they deny him because of his history of aggression.
We are now beyond memory care. He needs something else, more specialized.
I’m ready for him to go anywhere in the world and a good place but what is out there? I’m so discouraged.
Thank you for supporting me but I feel so helpless.
His Lewy Body is progressing but I also think he has been completely mismanaged medically.
Almost like I have to start over with a whole new person.

@maryvc
Hi Mary:
Virtual support and hugs as you navigate this nightmare.
Do you have any family members or close friends helping you? Anyone who is physically close able to accompany you when you go to the facilities to support you, and as a second set of eyes/ears?
Wishing you lots more support and hope your health is still kind of alright and no ulcer yet!
Judi 🌼

Mary, you might be right about starting over. I do not know where you live, or the medical care you have received, other than your mention of psychiatrists, but I strongly suggest you seek care from a physician who specializes in LBD.

I would start with Lewy Body Research Centers of Excellence (RCOE.)
https://lbda.org/research/research-centers-of-excellence
There are more two dozen throughout the country, and the LBDA says these are places “to which people with LBD and their families can turn for advanced LBD diagnosis and treatment.”

The LBDA has lots of resources and support for patients and families all over the country. I would also give them a call. They might be able to help you in other ways. Their website is deep and current. You may already be familiar with the LBDA and everything I mention. If so, forgive my redundancy.

Of course, your immediate need is placement for your husband. Apparently you have a couple of options. I hope one of them works for you! Hopefully, the psych hospitals have social workers who can help you.

But, longer term, starting over with an LBDA RCOE might help your husband recover from the Haldol effects (at the very least, they would understand it!) and ultimately enable him to live more peacefully with LBD, because LBD, in all its variability, is their skill and focus, and they are on the front lines of treatment research.

@maryvc
Has he ever seen a Geriatrician?