MC - want to place but how to get there.

Battlebuddy

     I’ve taken a major turn towards Memory Care. It is no longer if but when.

  I remember the thread we had recently supporting a member making this decision I think it was Ed or Joe. Since then three things have happened . 1. He picked up the small dog by one leg, and has become more worried about them or focused on them in a obsessive way causing him anxiety. 2. He started a fire on the stove by putting on a burner and lighting a paper. I smelled the smoke and but it out but scary. ( I had removed the knobs but must have made a cup of tea and forgot one) 3. He is becoming more and more agitated and aggressive. I spend more and more time changing rooms from the room he is in. Also he has been crying for his dead mother everyday( she died a year ago) but took a scary turn the other night into a delusion that I killed his mother. He then goes on and on about how stupid I am. Because his mom died everything I say or do is stupid. 

   I could say more but  those three things boil down to this: the dogs aren’t safe around him, the house isn’t safe, and I’m feeling more and more unsafe.

   But how do I get to Memory Care from here? He seems too agitated for Memory Care. He’s young. 57 and strong. Are they going to take him in his present state to live with a bunch of little old ladies. I wouldn’t. I tried getting a Geri Psych referral and it was “ lost in the system” for a few months , and when I talked to them on the phone , they seemed to have no understanding why he needed treatment for anxiety, and the person in the area ( Florida) who handles  that  just retired.  Went to Neurologist for help and he gave me Ativan which does help but prolonged use isn’t recommended . 

   So here I stand. I’ve gone from not wanting to think about Memory Care to seeing it off in the distance and hoping somehow we can get there . It seems almost too good to be true that there would be a place that would have a team of people all involved in his care as well as me. And then I could get away from the craziness at least for some part of the day. If he was on a your stupid rant I could just leave in stead of hiding in the garage. 

    But how do I get there? ER? Get his PCP to help? Neuro? Or just visit and place in his present state? 

    

June45

Hi Battlebuddy,

You don't have to get a referral to place your husband in a MC...you can just start looking for one.  (I also live in Florida.) I am currently seriously looking into MCs also and have found that MC's are not all the same as to how the facility is licensed.  Make sure that they are an "age in place" and that they will do a 2 person assist if needed down the road.  Ask what would cause your husband to be asked to leave the facility. And since your husband is young, strong and is often agitated, you need to be up front with the prospective MC's and they may have suggestions of what you need to do to get the agitation under control...i.e. talk to his medical provider for Rx to control agitation. Once you choose a MC, there is a Florida form 1823 that his medical provider will need to fill out.  The MC will give it to you or fax it directly to the medical provider.

P.S.  The MC sales person with whom you will initially speak isn't always forthcoming. When you get to the point that you have the MC nurse assess your husband, ask him/her the questions you are concerned about.

Cynbar

Start doing research on local facilities. Then, make appointments to meet with an admissions rep and take a tour (hopefully those are now allowed where you live.) The behaviors that you describe should be manageable for them unless he gets aggressive with staff, and they can deal with it if it happens. You are a handy target and trigger for him, and it's all on you all the time. At MC, his behaviors will be spread out for different staff to deal with. And the safety issues of the dogs and the stove will no longer be factors. As for his age, that's a different issue. Look for a place that has other physically active residents and activities to keep them busy, no matter their age. Observe how the staff interacts with the residents, if they seem well cared for and relatively content. You should get a feeling for which facility is best for your DH. They will send medical paperwork for his PCP to fill out, but the search should start with you.

M1

BB, if he is too aggressive or agitated, then yes, call 911 and have him taken to the ER and say you're not taking him home because it's not safe.  They can arrange geri-psych admission from the ER, he may need it before he's calm enough for MC, and then he can be placed from the hospital.  Don't feel bad about it, it's probably necessary.  Wishing you well.

French

I perfectly understand. 

IF is no more a question (it has never been a question in fact)

WHERE ? is the big question 

WHEN ? I now understand it goes with the where and that is the main issue. If I wouldn’t  care about the WHERE, I would have a place yesterday. It caught me off guard yesterday. I have been called because there was a place in what we call « a shared home » where 8 Alzheimer’s live together like in a real home, with a kitchen… it’s at 1 hour from here.

 The issues are that

- I am not sure it is the best solution and we can’t try it

- I am not ready,  I was targeting the end of the year, not now. I am not sure they will have places in 3 months

- I already scheduled the 1 month stay in Tunisia, paid provision…

I want the best for him but now I wonder if I should have answered positively and took the place

ButterflyWings

(((Battlebuddy))), I am so sorry you are going through this right now. It is so stressful and scary, on top of the grief of losing our LO before our very eyes. I completely understand where you are right now. My thought for the last 3 years since diagnosis was that I'd keep getting more help as needed, go with the flow, etc. But that is proving easier said than done. 

We could not know what we didn't know, and the things we are currently experiencing are not safe or sustainable. I took the knobs off our stove too, but it just makes it easier to turn the little post to the 1st notch where you hear the clicking and smell the gas (!) but it is harder to turn the actual fire on, or return the thing to 'off' from there (that was the problem using my hand anyway, and couldn't find the pliers). So I put the knobs back on and hope he doesn't go there while I am asleep.

Seroquel has gotten us this far. (50 mg per dose, up to 4 times a day - but usually 3x a day). But if he refuses even 1 dose, our day goes off the rails. I can see it is time to visit MCs and try to see how to pay for that. Because it is possibly in our future sooner than later too. I wish you well. I hope you will end up with a good setting where you can get back to being the spouse rather than the brunt of all kinds of bad names and behavior. Sending you hugs and strength for this phase.

Joe C.

Battlebuddy, See Virgil’s thread below on “Searching for MC”, there is lots for good information there about the search considerations. I wish you the best as you navigate this emotional mine field.

aod326

Hi Battlebuddy. My DH was a fit and strong 60 when I placed him last August, actually one week after turning 60. Part of the reason for placement was that he was getting aggressive with me. He was already on Seroquel (maybe 150mg by then?) and was very social, but still had a couple of aggressive episodes when he was settling in to MC. My advice is to probe really hard about how they deal with behavioral challenges, and under what circumstances they require you to hire a personal aide, in addition to the MC care. 

I'd asked about how they'd deal with behavioral challenges, but, in hindsight, I didn't push hard enough. (At the time I think I'd been more worried about how my 60 year old husband was going to fit in with the mostly 80+ yr old ladies!) As a result, he had two ER trips within his first month, one including 3 day stay, to balance his meds. He came home from the hospital stay drugged beyond belief. The MC told me I had to hire a 24 hour personal aide, which I did, for four weeks - at a cost of $4k/week, in addition to the $8,400 monthly MC charge!!

I realized it obviously wasn't the right place for him and I moved him to another MC, who were not fazed at all about his behaviors. When I was talking with them and asked about when they'd expect an additional aide (once bitten, twice shy!) they were perplexed as to why I'd ask, because they've never required that.

I don't know if it was coincidence, but the first place was the MC unit of an AL, but the second was solely MC. If I was ever in that position again, I'd only look at MC-only units.  The first place was very nicely appointed, residents could use the AL gym, nice food; the second place was much older, with furniture that almost looked a bit institutional, and shared showers only, not in the room. But it was WAY more suited ti him.

All good wishes being sent your way - this is a difficult time.

Beachfan

Battlebuddy,

If possible, heed the advice of  “ aod326”. and look for facilities that ONLY serve Alz/dementia patients.  There is a world of difference between “Memory Care” wings in AL facilities and those facilities that care solely for Alz/dementia residents.  These stand alone facilities are not as numerous as AL facilities, but they do exist.  I’ve found that they typically admit any patient, cost is all inclusive, patients can age in place (die) there, staff are highly trained, residents are not discharged due to behavior or need for increased personal care.  

There is an AL facility with a MC “wing” within walking distance of our home.  Residents are evaluated for acceptance, costs increase with every additional service needed, residents are discharged when they are no longer “appropriate” (WHAT???); two friends had their LO discharged, one’s LO was not admitted based on an interview.  

Two facilities, which only serve Alz patients are located 40 and 45 miles away, respectively.  I have visited and researched them extensively and would consider either of them for placement if/when the time arises. Good luck! It’s a process that takes time and effort, but, hopefully, will pay off in the long run.  

Battlebuddy

   Thanks everyone. 

  Yesterday I toured a Memory Care only facility. If I had a picture in my mind of what a MC would be like this place was it.  60 beds, four wings , with the sickest people mixed in with everyone else. Everyone looked clean and it smelled good. Lots of activities including a Bible study and worship service. The pet therapist was there. Best of all,  there  was lots of outdoor paths and seating snaking around the facility with high fence. 

   Went home very encouraged. Will look at others but think this is a winner. There are 10 to 15 men. So not just old ladies. Came home encouraged. Going to do more research but feel good about this place. It’s an Arden Courts. 

   I think the bare minimum will be a 30 day trial. Going to shoot for September 15/Oct 15 .  But maybe sooner. Need to get him a med review to stabilize the moods and agitation first so it’s a good transition. 

   It’s time. My hands with the eczema tell me every day it’s time. Since it’s just me and him in the house , garage, and yard, his world will get much bigger when he goes there. 50 percent chance he will be miserable 50 % chance he will love it. I like the odds .  

sandwichone123

That sounds great! Remember that even if he's miserable at first, that's not the final answer. Once it becomes familiar and he develops relationships in the facility, with caregivers and other residents he'll like it much better (or at least the odds improve greatly).

Beachfan

Battlebuddy,

 BINGO!!! My two choices are an Arden Courts and their “sister” facility, Linden Village.  I am in PA.  Same set up, same amenities.  I am looking at a 30 day respite, maybe around August 15-Sept.15.  That will give me some beach time with the grands, some “me” beach time and maybe a quick trip to TX to see other grands.  Just need to work out the logistics re: COVID test results and Dr. approval (it involves about a 7 day turn around).  I know I will miss him, but “he” is long gone and typically happy anywhere.  I hope it all works out for you (and for us).  Best of luck; will be thinking of you.  

June45

Thumbs up Battlebuddy!  Hope it does indeed work out for both you and Beachfan!

aod326

That's very encouraging. The second place I mentioned, where DH's challenges were no issue, was also an Arden Courts!

Bhopper

Once again a member of this wonderful community is at the same place I am my DW just turned 62 I was hoping to make Christmas but realized a couple months ago it was not if but when and started visiting facilities. My wife is also very physically capable and will not be happy initially. But I have accepted if she hates me for a period of time but is safe and well taken care of it’s best. The facility I decided on is a non restraint facility and they are well aware of  her physical strength and potential agitation. It took 6 months to find a psychiatrist that would take her on as she has CAA -VD and AD . The seroquel has helped tremendously but only assists in behavior. Her condition is slipping daily. Thankfully they are going to room her with a younger resident not as young as her but closer than most. I spoke with her spouse and he has assured me they have help immensely. 

Hopefully helps you with decision feel free to reach out in a few weeks and I will give you honest feedback. We are targeting August 12

BH