Update on Mom's Anger and Broken Heart at AL

Marianne*

It's been a crazy 3 weeks.  After getting my mom moved in, I started packing her house, putting things in storage, and getting the house ready to sell.  Then from 6/15-6/22 we took a family vacay to Florida (live in CA).  House was listed today.

The first four days at AL my mom was angry and lots of crying.  Then, I went to see her, brought her to my house twice (5 min away), we went shopping, one day to lunch.  She did so much better.  Not all was well, but she wasn't as much of a mess and was coping.

Then, 2 days before I left for our trip she had a bad spell.  Lots of confusion, hallucinations, crying over not being at home.  I want to go home.. I want to go home... why can't I go home.  I don't know where anything is.  I need my home.  4 hours before we left for our flight I was with her and wasn't even packed.

I wrote on her calendar the days I would be in Florida and it was highlighted.  I got about 2 to 3 calls a day with her crying, being sassy "well isn't that nice you're on vacation while I'm here rotting".  Get me out of here; I wanna go home. I'm going to die here; I'm gonna kill myself.  My favorite was, "I hope you burn in hell."  Let's just say the vacation wasn't what I was hoping for but it was kinda of what I was expecting.  I had put her phone in her room but after getting 15 calls in 2 hours I wasn't about to go to Florida with a phone in her room so I told her something was wrong with it and took it out.

Got back late on 6/22 and was there on 6/23 in the AM to hear about how I hadn't been there in weeks and she was ready to go.  She was packed.  Like she wrapped underwear and socks in saran wrap, everything out of place and stacked to go.  I spent 3 hours in the AM putting her room back together all the time explaining that she wasn't going anywhere for right now.  Lots of tears, upset, etc.  Went back later that evening to half the packing done again.  Spent an hour unpacking.  

Saw her this afternoon.  Lots and lots of tears.  She looks like hell.  Looks like she's been through hell.  I don't know how to make this better.  She want to die.  All she sees is death and the end coming and of course lots of "please take me home".  I'm gonna run away.  I can't stand it here in this little room and this place any longer. 

I feel like it's time to get her some medication that could help but don't know what.  Or, is this normal and we just wait?  She's so miserable.  She takes .75 of zoloft and she takes .25 of zanax at night I think.  It says every 8 hours on the bottle but I don't think they're giving it to her that often.  Does counseling help?  I don't even know how to go about making that happen at this point.  She's grieving the loss of her life as she knew it and fearing her future.  

I don't think we have any geriatric doctors specializing in dementia in my area.  I'm not sure what to do.  Her family doctor takes forever to do anything.  As always thank you for your thoughts and support.  

LaurenB

Does the facility have a house doctor?

King Boo

Geriatric Psychiatrist MD who works with dementia is the go to person here.

PCP's and neurologists can prescribe this class of medication, but don't really have the tuned expertise to deal with more involved presentations.

My LO was under dosed by the PCP.  Geriatric Psychiatry consult with appropriate taper up of medication = an awesome difference.

This is a very typical, if agonizing, beginning, if you read the boards. 

If they are not giving her medication on time, that is a care issue. It should be documented.  Unless they probably don't do that in AL.

Marianne*

There isn't a DR or RN on site.  All geriatric psychiatrists are 2 hours away.  When I search psychiatrists pop up but not geriatric.  This morning she's called 6 times from 7-8 AM and left 2 messages about how she's leaving if she has to walk the streets.  All this with her phone taken out of her apartment.  Can't imagine if she had her phone.  

I was going to have her come over today but honestly, I don't want to see her.  She's miserable.  I'm miserable.  I don't see how I can swing by and pick her up to go anywhere or come here when she looks like a confused zombie.  

dayn2nite2

Please stop taking her out of the facility for visits.  It’s making things worse.  She is needing a physician but you also need to know that even with medication this can go on for months.  She WILL adjust.  She shouldn’t leave the facility except for doctor or dentist.

To be frank, I think the level of care isn’t sufficient here.  She needs a higher level of care.

Mom's Baby

Marianne, your mom sounds so much like my mom when we first placed her in the independent living section of a facility that had independent and assisted living. (Let me just say it was completely the wrong choice from the beginning but I didn't know it at the time, of course). 

I don't know if it helps to know that many of us have gone through this. It made me entirely miserable, as I had never seen my mom behave that way before. She was a different person. And I felt responsible. The only thing I can say to that is that it was the disease, not me, and it's the same in your situation. Please don't take it personally. Easier said than done, I know. 

What helped with my mom was 1) time and 2) medication. I'd call those psychiatrist offices near you to see if any may have experience with geriatric/dementia patients. Just because they don't label themselves as geriatric psychiatrists doesn't mean they may not be able to help.

I did end up moving my mom to memory care about 14 months after moving her from her home to the first facility. That made the biggest difference. In AL, people have too much time to themselves, in their rooms, unengaged. All they do is cycle on "going home, going home, going home." The move to memory care was hard at first, but quickly, I realized it was the best possible thing we could do for both of us. 

They made sure that Mom was out in the commons area with the other residents and not by herself, confused, lost and scared. They developed relationships with her and she became one of their favorites because she was "spunky." I didn't even have to take her to doctor appointments anymore -- the doctor came to her. They did have a nurse on staff to monitor her care. They took her and the other residents on day trips to the zoo, to public gardens, etc. so that she didn't feel cooped up -- but also, she didn't demand that they take her home, like she would've done with me. I stopped taking her out after the move to memory care. It was counterproductive for both of us 

This is all gonna be OK. You just have to rethink a few things and set the wheels back in the right direction. 

King Boo

Hire an aide to keep Mom company and adjust.  Stay away.  Stop answering the phone.  Call staff daily for a check in.

And brace yourself that this second attempt to place at an Assisted Living care Level is also unlikely to work yet again.

Place for the worst day, with room for more decline, was the advice of many discussion board members in a previous thred.  Carry this forward with you for the next round of decision making, it will serve you well.

The mother you describe needs:

Dementia trained staff

The higher Memory Care staff level of 1:8 or 1:10

Monitoring of where she is (no free to come and go on her own models)

On site medical care, with a least visiting MD's and specialties coming through monthly.

No matter how much you have to travel to a Memory Care.

I get it - I really, really do, having gone through the agony of realizing that the 2 AL places I picked out for my LO were no longer suitable.   And it gutted me to place in MC - until several months later I saw that I could relinquish hands on care, be the daughter, and saw my LO functioning well and comfortably.

If I hadn't let go of that dream, I would have been the biggest obstacle to his good care. 

Get her to the  geriatric psychiatrist no matter where they are, hire and aide - and start looking for Plan B.  Which everyone needs, because the average length of stay for AL is 1.5-2 years when appropriately placed.

harshedbuzz

I feel like there are 2 pieces to this.

On one hand, settling in is a process that can take 3-6 months for some PWD. During the early days, it might be best not to have contact at all. Day trips and visits to your home are not recommended until she's settled in.

The other piece is that this level of care is not appropriate or sufficient for your mom. Prior to selecting this facility, several posters suggested that she was an appropriate candidate for a secure MCF. I feel like this is part of why she is struggling. In a MCF with trained staff, they would be engaging her and keeping her busy which would hasten the process of it becoming home. 

I agree with everyone that seeing a geriatric psychiatrist would be ideal. Dad's facility had one who made housecalls; perhaps this facility knows of someone in your area. Otherwise, perhaps you could do a telemed appointment. I used to communicate via email with dad's geripsych before he went to MC describing what I was seeing and send video clips as dad could showtime like it was his job.

HB

Cynbar

I think this is more the pattern of a person appropriate for memory care instead of assisted living.The typical resident of AL is more cognitively intact, can be reasoned with as to why the move was a good idea. The typical resident of memory care does get more anxious/upset by admission because they can't process the reasons for the change, can't discuss it in a reasonable manner. It's all about emotion because the reasoning component is gone. How much attention is she getting from the AL staff? Do you feel they are understanding and helpful, trying to engage her, knowledgeable about the adjustment process? Or are they more leaving her to her own devices? In addition to medication, you may need to hire someone to spend part of the day with her as a comforting distraction. I think you should keep your distance for awhile, sounds like you have become something of a trigger for her demands to go home. Adjustment does take time, but it also takes a concerted effort by the AL caregivers. It's not clear from your posts how much attention she is getting.

towhee

Marianne, I am going to agree with Cynbar. She needs someone there who can distract her from how she feels, but not someone who will remind her of why she is upset. Even phone calls from someone, not you, might help so long as they do not mention selling her home or your recent vacation.

Her anxiety level has increased either because she is emotionally upset or because she is not feeling well or both. It would be good to check and see if she is getting enough liquid and if she is eating. Sometimes a change of diet or not getting enough liquid can lead to constipation which can manifest in general anxiety. She wants to go where she feels better which is of course home.

This is going to take time to settle down. No, counseling will not do any good. Medication, especially Zanax, can be a double edged sword but it might be necessary.

Might I suggest: Request that no staff say to your mom "This is your home now" "Your house is being sold"

Keep your interactions with your mom short for a while. Give her a non-specific apology like "Mom, I am sorry I upset you, I'll try not to do it again" Don't engage. Get some one else to visit her, but let her know you are around. Unpack if you must while she is at a meal or not in the room.

Don't mention selling the house.

Don't tell her when you go out of town again. Ask the staff not to tell her. For her, you always need to be right down the street, but with a good excuse why you can't come that day. 

I hope things get better.