MC Journey - Nightmare

ThisLife

I'm not going into all the details. Placed H on 9/1. He has continued to physically grab staff when being redirected away from a female resident he is fixated on. Medical group that provides service at the facility upped one medication and added another. Then increased both again. In January Facility Director and MC Director requested a meeting which my son also attended. They wanted to discuss what to do. I have a behavior background and did research over the weekend and came with suggestions. They loved the suggestions. (not sure what I was paying them for.) We were told they would have to call the police if another physical incident happened. We scheduled to meet in a month.

They did; police declined to transport as he was already calm by the time they arrived. February 4th call came that I would need to provide 24 hr. coverage for him as he had assaulted another resident. Gave me the names of several agencies to contact. I don't have that kind of $$. Figuring out how much I can afford and me providing most of this. They call me back - they are transporting him to ER and which one do I want. (VA) Will still need 24 hr. care on return.

At VA ER they choose to admit him to psych ward due to behavior in ER and me needing to make arrangements for coverage. Met with geripshych the next day. After checking all possible medical issues and blood levels of meds for anger and agitation, he has drug induce mania, a reaction to citalopram. 

😲

 What!! Plan is to drop donepezil, wean off citalopram, keep Depakote, add lithium. Trying to moderate his swings between anger and tears. Blood work to monitor for therapeutic levels.

Two days later MC calls me that he can't return. They have video 12:30am - 1am ish, where he goes to female's room and back hands her with no provocation. I ask how long he's been being up in the middle of the night? They don't know. What happened with him from dinner until him hitting the woman? They don't know.

I informed the doctor that he could not return, and he could not come home. VA social worker contacted me Thursday. She is going to look for a MC in the county we live is as a start. I gave her the price range I could afford. I haven't heard from her yet. I'll visit tomorrow. Visiting hours are 11:30am to 12 noon. With travel it is 3.5 hours out of the middle of the day. Put a fork in me; I'm done!

Ed1937

I'm so sorry. You'd think if they got to the point where he was stable, they would reconsider taking him back. Haven't they ever worked with a geri psych before?

M1

I am so, so sorry. He may be in for a long hospital stay, but that’s okay. My heart goes out to you.

i would ask a lot of questions regarding the choice of lithium and why they think that’s more appropriate than other alternatives. Lithium is an old dry and has a good track record in bipolar disorder, but it does have to be monitored, can cause renal failure with chronic use, and I can guarantee you that most MC facilities are not going to be familiar with using it. They may have a strong rationale, but I really would ask a lot of questions.

Joydean

My heart goes out to you and your husband. This is such a horrible disease. I hope the VA will come through for you. We read a lot about how Medicaid is different in each state but I am leaning that VA is also different from in many states. Not supposed to be. I wish you all the best !

M1

ThisLife, i did a quick and not very thorough search on lithium in dementia- use in bipolar disorder has been associated with a lower risk of dementia, but the recent literature i could find has not shown that it's effective in controlling behaviors once dementia is established. Doses prescribed are typically lower than those used in bipolar disorder. Again, i would just tell them that you are interested in their rationale and i would ask about a backup plan.

ThisLife

Thank you everyone. (((Hugs))) Joydean, I too have found VA different state to state. I'm concerned that the VA focus on using less of these drugs may rear its head, too. Ed1937, I suspect they have not dealt with much behavior. They used the clause in the intake package that any physical attack will result in eviction without 45-day notice. M1, thank you for looking up lithium concerns. Geripsych said they were using it to lift his mood because of the crying/unhappiness.

M1

sounds reasonable. It's an unusual choice though. Please do keep us posted, I am glad they are discussing his care with you, hope those lines of communication stay open.

Sapphire68

I'm a caregiver and in facilities I've been in the past they would move the residents apart from one another on different units or halls if at all possible. May also need a male aide around to help on the shifts he is up and about doing this.

ThisLife

Thanks, M1. I'm very pleased with the communication. I will post updates.

Sappire68, it was one unit in a U-shape. They were on opposite sides of U. He was on the bottom of one side. While there were cameras, they weren't monitored. About 8 rooms were visible to staff in the common area. They had no idea if any resident left their room or entered other rooms. If they were ambulatory they could wander within the locked unit. He participated in all the activities, PT, OT, etc. They hire what they can get, very few males. They wanted me to provide an aide for him 24 hrs a day. I don't have the funds for even an 8-hour shift every day. Just not a good situation and made worse by the increase in a medicine that upped the agitation.

jfkoc

You are in a nightmare and there are times one wonders what the money goes for!

Your father is blessed to have an advocate to stay on top of this.

Please keep us updated....

s

ThisLife

Thank you, jfkoc. I have thought "What am I paying you for?" I think I wasn't clear, though it is my husband. Thank you for the kind thoughts.

RickM

My father was also a "handful". He didn't last one day at the first place we tried to move him to. I found that there are MC's that specialize in patients with difficult behavior. I was fortunate to find one, on the west coast, that was able to deal with my father. Additionally, they had a Geriatric Psychiatrist that visited frequently. Getting the right drugs dialed in was difficult and, really, was an ongoing battle. But they figured it out.

Hopefully the VA can find an appropriate home. But I'd encourage you to reach out to some Geriatric Care Specialists in your area that have a thorough knowledge of the variety of facilities, one that can provide the care your husband needs. That is how I found a facility that could deal with my dad.

Best wishes.

SSHarkey

Oh I’ve been in your shoes! My mother began falling and the facility demanded we pay for a sitter rather than them doing anything for preventing it. No alarms, no nothing. I felt just like you did. All that money and when the rubber meets the road they just throw up their hands. I am so sorry it’s come to this for you.

ThisLife

Thank you, Rick M. The VA social worker has connected me with a geriatric care group. I had a very frank discussion with the person about needing MC that knows how to handle difficult behaviors. This is also a discussion I will have with the facilities. I will also do some further digging. H's inpatient geriatric psych has/will report that the previous placement had him on inappropriate meds. I know some specifics I will be looking for.

SSHarkey, thank you for the kind thoughts. I'm sorry you have had to go through this.

M1

Any progress yet? Have you been able to visit, or had a telephone report? Hoping for better news/improvement.

ThisLife

I visited Sunday, Tuesday, and Thursday this week. Using "five more days" for when can I leave here. The first two visits I ignored "am I going home?" Went with lot questions from past history "tell me about..." That worked pretty well. Thursday I decided to probe on where home was. Home is where I live. Tried to deflect with questions. Not happening. He got loud and angry.

His mood is much more even. Brief teary eyes and agitation is down to loud voice and death stare. Everyone loves him. When I'm not there he's pleasant, friendly, and participates in group activities.

Expressed concerns about lithium; Geri psych wants to stay with that drug. He's on the lowest dose in the AM. Her report will reflect that the behavioral issues were due to medication mismanagement. She told me to expect to see anger toward me though. She also said he should never be given any anti-depressant.

VA social worker put me in touch with an agency to help me find a MC. They contacted me to get information and. Tonight I received a list of possible places in my price range. I'll research them this weekend. She'll arrange for a visit to any I want to see.

While he is there, I think I'll cut back to once a week. I don't have a discharge date yet. I'm feeling calmer and supported. I'm just going to focus on moving forward.

M1

I'm curious about the " no antidepressant " statement, i wonder if she thinks he was bipolar prior to dementia. That's a pretty broad generalization that i could see getting lost in the shuffle in a facility, and I would ask her to really spell that out very clearly. Not only why, but what classes of drugs-"antidepressants " comprises several different classes of medications. I suspect she means SSRI's, but i would ask for a very specific list.

ThisLife

I don't think she believes he was bipolar prior to dementia. I will ask for further clarification though. I will keep his psychiatric care with the VA. We can do visits virtually. My plan is to continue medical care with the VA, also. The previous MC decided to discontinue Aleve (for both knees bone on bone) and Imodium for diarrhea from Aricept. I didn't find out until I stared receiving bills from the pharmacy and neither drug was on it. I really don't trust the agencies that contract to provide in center care if you choose. Plus getting his meds from them is more expensive. This will be one of the areas I will grill on when I meet with new facilities. Sure it was easier for me until it wasn't!

ThisLife

It's been a journey. The conclusion of this incident. I toured all three and selected the MC I was most comfortable with which is only 30 minutes away. We had to wait almost a week for another resident to move out. It is nice enough, clean but not a lot of frills. That is fine because at the previous place he was engaged but it didn't make any difference. I transported DH on Wednesday. He was so relieved to leave the place he needed to "get out of" I don't think he noticed it was different. I showed him around room and facility. He met the staff. He said it was really nice compared to where he had been (psych ward). I asked if it was better than the other MC. He said he hadn't been anyplace else.

The director shared that they like to communicate regularly with loved ones but tailor it to my wishes. I told her for right now the more communication the better. The night shift calls each morning 6-7am. He has slept through the night and participated in the previous day's activities.

Today he had a follow up virtual appoint with the VA Geri-psychiatrist. He was watching TV. When we got back to his room, he started in that he needed to get out of there. He should be home. I've just thrown him away. He'll just kill himself. His doctor shared that at discharge his Depakote was good, but Lithium was a bit low. We'll meet again in the end of the month, and he'll have more blood work. They've taken him off Aricept and decreased memantine from 10 mg to 5mg.

What I notice on the new meds is that while he was angry today, he is not able to work up to a rage. Then he got weepy. When I reached out for his shoulder to comfort him, he back handed me. O k a y.

FWIW All three of the MCs were surprised that DH was not allowed back to the first MC since the incident was drug induced.

I just feel fortunate that I was able to find a new placement. The Geri-psych at the VA ward suggested I might want to place an application to the veteran's state home. The have a dementia section with 68 beds. There is a long wait to get a bed. She felt he might do better there as there are more men which he seemed to enjoy.

And as all this occurred, I've been waiting for my list of students for the Spring semester. I received it on Thursday. Good timing again.

housefinch

I just want to express how sorry I am that you’re dealing with this and struggling to find appropriate care. I did my Neurology rotation at the Bronx VA & also saw patients with frontal lobe brain injuries who had significant boundary violating behaviors, especially towards female medical students. I’m sure @M1 may have similar experiences. It seems like someone needs to open a memory care facility with VA nurses from those units where I rotated. They didn’t bat an eye at difficult behaviors and had the burly but kind additional staff to step in and prevent injuries. I’m truly not trying to minimize the emotional pain or serious danger these patients and families endure. I just think our society doesn’t serve these patients and their families well at all and the onus is left on you to beg for placement. Hugs to you.

SSHarkey

ThisLife, it sounds like you’re finally getting good care for him and more information. That’s a huge part of the battle!

Housefinch, preach it! Right on! We need more patient advocates!

ThisLife

Housefinch, thanks so much for those observations. I very much agree. It's not like PWD and behavior is an anomaly. I don't think our medical and support systems support provide appropriate levels of care for persons of any age who have special needs. Private Equity Firms own the facilities, take the money and run. I feel bad for the staff who have not been given the skills or support to do their jobs. They don't have the confidence to interact with these residents.

SSHarkey, I'm hoping this will work out. So far so good.