Hello, I am mostly a lurker, but have been especially following emily and MarilynMD on their journeys with their DH. My DH, Jim, was placed in November (6 months ago) in an ALF with private room. His behaviors have gone downhill, then another med, then more behavior problems. The meds (Seroquel and Antivan) take away his ability to walk normally, feed himself, and even toilet, but do nothing to his underlying anger and sadness. He is 6'2" and 73 years old. He towers above all residents and staff in his ALF and scares them with his loud voice and (sometimes) bad language. Underlying he is angry and very sad. He is sometimes aware of his decline and then hates to be helped. He doesn't want anyone to get into his face so has pushed a couple of residents away after they refused to respond to his angry voice command of Get Away. Yep, result was resident on the floor. Due to our home located in a small isolated community, Jim's placement is a 2 hour drive for me in a different state. I went on a 1 week trip in early May (out of cell phone service). The ALF had problems with Jim and when I returned they asked me that he either move out (nothing formal) or that he be sent to a geri-psych unit. The closest locked geri-psych was 4 hours drive from his facility (6 hours from my home). I found out about this a week ago, and made arrangements last Thursday, with his being accepted on Friday and we drove him to the facility on Sunday. He showed agressive behavior when someone tried to help him do something in the new geri-psych unit. THen the anger escalated and it took 3 aids to get him subdued for a shot of Ablify. He also sits and crys for hours at a time. I got a call Wednesday (yesterday) after a stay of 3 days saying they were having a meeting today to determine if they would move him (to another hospital). They are concerned about their frail, elderly residents (they have 10 maximum, 5 women and 5 men). They knew Jim had some violent episoids and that was the reason he was admitted. I am waiting for a phone call as a result of their regular morning meeting which the psychiatrist attends. Any ideas on how I can be an advocate for my husband. What can I tell them they have to do? Do I have any choices?
Can you enlist the help of your husband's doctor and/or a social worker? This is a tough place for you to find yourself in. I think it is Carosi who has suggested in the past that there is some organization in the community who will guide you in this kind of situation. I live in Canada and know that I could access help from our Community Health Care Centre, specifically through a Social Worker who knows how the system works. I'm sure someone will be along who can be more specific.
That is a tough one, that the services you need are so far away. I would have certain questions that I would need to ask of the team at his current geri-psych unit: IF they cannot manage him there for long enough to do the work necessary for ascertaining the proper meds for him, where do they recommend he be transferred to? I don't know where you live, but the advice I got from Jeff's ALF when the "regular" hospital was trying to discharge him to me after a weekend of not doing much was that I must refuse to accept his discharge, citing my inability to care for him at home.
It sounds to me as if Seroquel and Ativan are either not the correct drugs, or not sufficient, and it can take weeks to determine what will be better. Jeff is now on Zoloft as well as Ativan. I wonder if your docs are looking into all the possibilities, so again that leaves you with the question--If not there, then where?
Your remote location does add a major layer of difficulty to this that we don't encounter if we live in a metropolitan area, but nevertheless, it seems clear to me that what you and the clinicians must do is identify the needed geripsych hospital, and have him admitted for as long as it takes.
Emily gives good and wise advice. My DH had gone thru something similar 4 years ago. The first geripsych hospital discahrged him after 4 weeks of doing nothing (abilify for 2 weeks, namenda, aricept and ativan upon discharge) and he was still very aggressive and the ALF staff was afraid of him too. He ended up in another geripsych ward for and additional 3 months before they calmed his aggressiveness.
hikergirl--Sorry to hear about your ordeal. What is your husband's dx? What type of doctor diagnosed and has been following him? I agree with Mary75* that his own doctor should be helping you and directing his care.
Aggressive behavior comes with the territory in a geripsych unit, sad to say. The unit should have a social worker who should be communicating with you regarding any possible transfer. If you want him to stay where he is, ask them if they can assign a "sitter"--a one-on-one aide--for a little while until the meds can kick in more. Ask them if they changed the meds/dosages after the Abilify shot; what are their plans if the Seroquel and Ativan aren't the right drugs? I don't think he's been there long enough for anything meaningful to happen in terms of improvement. The crying would bother me a lot--he is suffering and showing he needs help.
When my husband was in Hopkins' unit, there were patients from other states, and some of their families traveled to this area and stayed for the duration (that is an added, expense, I know). I just think it would be beneficial if you could find a way to be there more, but realize it's hard in your situation. I know my presence has always had a calming influence on my husband and think it may work that way for you and help you keep him where he is for treatment, if you can manage it.
Thanks for your comments. The geri-psych put my DH on "hold" because the shots of ablify seemed to be helping. Now he has gone more than 24 hours without rage. He has been accepted at another geri-psych that can do physical restraints but have that on hold for the moment.
Mary75 -- family doc is new to Jim (3 visits). We had to change family docs when he moved into the ALF and changed states. family doc didn't have any ideas the last time we visited except adding yet another med. I am waiting for the former family doc to call, but he has a severe illiness in his immediate family. I called the patient advocate and briefly talked to her Thurs. Later, I left a message on her answering machine.
Emily -- I agree that Ativan and Seroquel are not the meds. It appears that with the addition of amblify, they are decreasing the ativan which seems to be the big culprit. It reduces his ability to walk and feed himself without giving him any relief to his anger and sadness.
MarilynMD -- he was diagnosed at an Alzheimers clinic at the University of Utah by a well known neurologist. Diagnosis was Alzheimer's disease with visuospatial predominance and major depression. This was in the fall of 2008 and again 2009. Uni Utah is 250 miles from our home. Yes our distance from any major city has added difficulties. Also, the necessity of changing family doctors, insurance companies when moving my husband over to a different State. You are correct that the unit did not give him enough time. However, they were also concerned about the safety of their staff and other residents. They did realize that my DH was remorseful over his behavior and that he didn't set out to be violent, he just was unable to control the impulse of "leave me alone, I can do it myself". I have read many of your previous comments and am understanding that my DH needs a patient advocate in his ALF. I will also consider a different ALF, but there is only one other (out of a total of 4 in the area) that would be appropriate. The other two are too small / unpleasant to be considered.
If things don't settle down, I need to consider a move to a larger population center, but it is almost more than I can contemplate.
Thanks for you comments. I am hanging in there hoping for a quiet weekend.
hikergirl--hopefully, things will settle down and you won't have to move. I agree that it's rough to even think about that in your situation. Good luck and please keep us posted on progress.