trauma after move to AL

M&Mdaughter

I'm new to this board and from browsing, I wish I had joined years ago.  My mom has ALZ, prob stage 3-4.  She had been living independently about 40min from us and I was increasingly concerned about her safety (esp driving) and general isolation.  We started looking at AL residences about 6 mos ago - some on my own and the ones I liked w/Mom.  She found an apartment she liked and put a deposit down to move.  As the date got closer, she resisted but with support from family I moved forward, completed the remaining paperwork w/POA and she moved last Weds.  The transition has been terrible.  She calls/texts at all hours confused and angry saying she wants to go home and why did I do this.  Logically I know this is the disease but it breaks my heart.  I feel guilty and helpless and am 2nd guessing everything.  The AL does have a MC unit but it's locked down and for advanced stages.  With that said, I'm not sure the AL staff is used to dealing w/mom's level of dementia.  She is quite independent, can handle all ADLs but can't remember what happened earlier in the day or even a few min ago.  I'm trying to tell myself she is safe and that's what most important but I feel horrible.  I feel terrible ignoring her but answering her calls and seeing her in person over the last few days just upsets both of us.  She wants her car and wants to leave and I have to say no (over and over again).  She is not currently on any meds for anxiety/depression although I believe that might be appropriate.  Any advice, reassurance or tactics would be appreciated.  Thank you!

King Boo

When I saw the title of your post, I paused and thought to myself:  trauma is a good description of how to describe the transition for the caregiver.   Second guessing is our worst enemy; careful ongoing evaluation when we are less emotional, always needed.

Let me first congratulate you on realizing that answering repeated anxious calls is not productive or advisable.

Let me also gently point out, that by the time most of us need to place, the ship either has or is about to sail on Assisted Living and that if she is hanging on by her fingertips, anxious and confused, with, as you observe:  With that said, I'm not sure the AL staff is used to dealing w/mom's level of dementia.   - there is the very real possibility that she is living in a situation below her care level and therefore is not going to do well.   The question is : does this place her at risk?  If she is free to leave campus at will, with no secure exit, and she is talking about leaving - quite possibly. 

 She is quite independent, can handle all ADLs but can't remember what happened earlier in the day or even a few min ago.

She really isn't independent if she has no short term memory, because this places her at great exposure and risk.  Forgetting she eats, takes medication, who she gave money to, etc, etc.

  So - AL is just a label.  One must look deeper at the care provided to determine if it meets our care needs.  An AL can be a building with 100 people in it and 2 aides who peak in once a day.   Or it can be a high acuity, pre-memory care type situation with a 1:8 staff ratio and early dementia specific activities.    Since you are questioning it, I would assume it is the former.

 WWID?  I would get Mom to a Geriatric Psychiatrist MD as quickly as possible to see if anxiety medication ratchets down some behaviors and makes her living situation more do-able for now.  It may not - but regardless of what care setting she lives in, it will both positively impact her quality of life and make care success more likely.   The Geriatric Psychiagtrist has expertise over this class of medications; PCP's and neurologists - not so much.  My LO was very, very underdosed until specialty care was sought. 

 Interim possibilities - can she go to MC for daytime activities?  A stepped up care needs group?

 Either way - prepare yourself.  Mom's AL stay is a good start - but could be quite short.

 Chasing level of function in a MC is usually a futile activity, because it will wax and wane over time.  Go for compassionate caregivers, dementia specific care.  My LO protested about all these crazy old people, but he was still far beyond AL because of no safety awareness.

 It takes guts to be a decisionmaker.  We have to adjust course sometimes.  It's not easy.

Hala

I am not able to offer much in the way of guidance/reassurance as I am trying to prepare myself for very similar circumstances that are going to happen in the near future.  My father is in the transitional unit at the local nursing home and my mother is having a difficult time being home alone.  Her health is excellent, but dementia symptoms have been exacerbated by her being alone.  I am not sure what is going to happen next insofar as living arrangements for my parents.

I am new to this board too.  It is heartbreaking and a person feels so alone.  You are fortunate to have family support.  I hope those who are further down this road will offer feedback.  This is incredibly difficult.  

May flowers

Hala, I am just one step past where you are. My MIL died in 2017 and my FIL with dementia lived alone until last year. He also is in excellent health. We handled his bills, filled his pill box, and managed his doctors. 3 days a week he came to our house and the other 4 he was at home. Over time we cooked meals for him for the days he was at home.

Eventually it became too much to remember to take meds and work the microwave so he was either not eating or just eating ice cream and chips. He slept all day. We brought him here (instead of MC because of covid) last year but his care now is beyond me. I can handle the physical aspects of care but he has become agitated, paranoid and doesn’t recognize me often. He has also started wandering. We have safeguards in place, but we always knew that when his care became 24/7, we would either place him in MC or hire a live-in caregiver. We are planning on MC and still working on the timing.

Best wishes to you. It is a very hard road.

Hala

Thank you, May flowers.  You have done a lot for your FIL.  

As mentioned, my Dad is in a transitional unit. Three people at the facility have recently been diagnosed with Covid - and each of them were vaccinated.  

I have never seen my Dad depressed before, but it seems he is now.  I think for the first time he is really feeling how his abilities have changed. There is also a lot of time alone in the room. They are allowing compassionate care visits so my mom and I do get to see him 3x/week now.  

Best wishes to you, too, as next steps are taken.  

Iris L.

Hala wrote:

 There is also a lot of time alone in the room. 

Welcome Hala, M&Mdaughter, and May flowers.  PWDs (persons with dementia) don't do well with being alone.  This is due to a lack of self awareness and a lack of initiation.  They cannot think of how to compensate when a change in their routine comes up.  Covid restrictions and isolatoon have made all of us somewhat depressed.  But we can think ahead to better times.  The PWD cannot.  Even without Covid, PWDs cannot initiate.  They don't remember what to do at any given moment.  That's why they need more attention than many assisted living facilities provide.  She needs a degree of structure and routine to her day and guidance.  

Iris L.

M&Mdaughter

Thank you King Boo.  I am supposed to hear from the AL Director tomorrow re. when mom can meet with the Geriatric Psychiatrist and will try to arrange ASAP.  Also talking to her neurologist but your point that a psych person is most appropriate to help with anxiety is well taken.

abc123

Her behavior is very common for PWD who have recently been placed. I strongly suggest taking the cell phone. I know it sounds cruel but it’s not necessary and it causes more stress and grief than either of you need to deal with. You could tell her it broke and it’s been sent in to be repaired. Have you tried going a week without visits to help her bond with the staff? You go to the AL and check on her and talk to the staff BUT you don’t visit with her. Some people do that. It sounds like she really needs to be in MC. Can you talk to management about moving her? I wish you the best of luck.

Thirdsib

I am curious as to how your LO has adapted.  We moved my mother into AL in January. Because I did pretty much everything with her, since my 4 other siblings did not, she is currently mad at me for her move.  I had a decent relationship with my mother and I too feel guilty, not only for her current attitude but also her anger. I know she is safe which is what she needed and thankfully my siblings are now participating more, mainly be cause I moved her closer.  When I visit her, I get probably 3-5 minutes of a conversation and then she walks away. She walks out of the apartment and wants to be left alone. Should I just realize with her dementia she will always be mad?

May flowers

Thirdsib, my guess (just based on progression of dementia), is that your mom’s anger will pass. There seems to be a point I can only describe as cantankerous. My FIL was this way last year when he lived with us. He seemed upset at me all the time (because I wouldn’t let him walk outside without me - but he was getting lost) 

Those days are long forgotten. I’m his “best friend” now - even though I’m not sure he knows who I am 99% of the time.