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AL adjustment
Posted: Tuesday, June 11, 2019 4:33 PM
Joined: 3/21/2019
Posts: 54

My Mom, 90yo, has been in assisted living for about a month. I'd say she's probably mid stage. This is where she has chosen to be. She tells me she hates it but knows this is her best option for care. Tells me everyone is very nice and help her and sometimes she says she's not nice.  She is very anxious and fearful at times when she doesn't know what to do and calls my sister expressing her fears and anxiety, sounding tearful. New routines or changes in routine confuse her. Yet, other times she is very clear. She amazes me the things she remembers and can do and yet these other times are really upsetting to my sister to the point that she wants to take Mom home and live with her augmenting with paid help. My sister feels she is regressing due to stress of the place and it will all be better if she is back in a familiar setting.  The apartment is set up similar to her home with her furniture and arrangement. Wondering what others have found to be the adjustment period. Also wondering if I should ask neurologist about adding a med for anxiety. What are others experience with anxiety? She is on the Exelon Patch 9.6. Been on this higher dose a month, the same time she has been at AL.
Greg G
Posted: Sunday, June 16, 2019 6:23 PM
Joined: 2/8/2017
Posts: 986

Hey Misty,

I don't know why no one has said anything but I will.  

You mention that mom is around mid stage in her dementia disease.  Many times that is the point where/when AL starts to be the wrong fit for a person with dementia.  The staff there are not usually not trained in the techniques needed to care for someone with dementia.  In all its varieties.   As a higher functioning PWD when she checked in to a memory care facility, my mom took 7-8 months to really adapt to her new surrounding.  She went straight from her home of 48 years.  Granted my mom went to MC and yours went to AL.  But still.....

Your mom's calls about anxiety, stress and fear may be another decline in her progression.  And since the staff there can not help as much as she needs because of lack of training, these feelings and activities can be quite common.  You should call over to mom's place and ask the folks there (staff, nurse, director, etc) how things are going?  You may gain some insight from talking to them how things are really going instead of only relying on mom's word.  

Doing this may get a better understanding so you can talk with your sister intelligently instead of emotionally.  Mom is going to progress no matter where she is.  At some point she is going to want to "go home" no matter where she lives.  Even if it is in her actual home.  She won't recognize it.  Does your sister live alone or with a family?  Does she REALLY understand the 24/7 demands that will be placed upon herself and family?  Many relationships/marriages have been really tested when one has a person with dementia living with them.  And if you are going to relay on mostly paid caregivers for that eventual 24/7 care, it usually costs more money than a memory care place.  

And speaking of memory care, it may be time to start looking for one for mom.  Does the place she is in now have a MC unit?  If they are good, that might be your best option.  If they do not have a MC unit, then start looking around because it is better to pick the ones you would like before a crisis hits instead of being forced to choose one on quick notice.

Good luck and best wishes, Greg

Posted: Sunday, June 23, 2019 9:23 AM
Joined: 3/21/2019
Posts: 54

Hi Greg, Thank you for your response. I was told all staff are trained to care for PWD. This facility also has MC in the building. Was told they will suggest a move if they find Mom's needs to be too much for AL. I don't think mom asks for help as much as she should. They have contact with her at least every 2 hours and she has a button to push whenever she needs assistance. I reminded her that is what we are paying for and she should use her button. I have not been involved with my Mom as much as when she lived at home alone. Was spending 3-5 days (breakfast till sometimes dinner and sometimes morning till bedtime when caregiver didn't show) usually on weekdays. I am much relieved to have her placed in AL with potential for MC. Currently spending 1-2 days with her, after breakfast to before dinner. This is summer so I am not available every week as my husband and I have a summer cottage. Was all the more reason to get her placed to take the pressure off my sister. Other family members do visit and take her to church (3 local sons) but my sister and I take care of primary needs.

My Mom does recognize that she is in the right place and needs to adapt but as you say it will take her much longer. My sister is married with many family commitments with children and grandchildren. Recently retired but opened her own private counseling service which she feels gives her more freedom to schedule her appts and assist Mom. It is unrealistic for her to think that Mom can move back home even with my sister living there augmenting with paid help.  Mom currently recognizes this. She may not later but I think I'd have support of the rest of the family.
Good idea to check in with staff. I've seen them in my comings and goings but haven't specifically asked. The activities director did mention when I was leaving a week ago that mom did come down for movie and although she didn't stay but 10 minutes she felt it was a start. Mom showed me the notecards she made in activities which I was pleased to see and mentions conversations she's had with some of the ladies. Talked about her attempts to go to the exercise room with help to ride the bike. Encouraging I think. It's only been 6 weeks. Mom says she is determined to make this work but I know there are times she is very anxious. That's when she calls my sister. Maybe Mom needs to press her button more instead. I don't find it takes much to calm her down but then again she doesn't call me daily.

 She has a neurology appt in the fall.

Thanks again Greg for responding. Lots of good points.


Posted: Sunday, June 23, 2019 10:36 AM
Joined: 6/3/2019
Posts: 74

One of the most troubling things about this disease for me to accept so far with my father - who is in moderate dementia stage, I think similar to where your Mom is - is that Dad just does not enjoy much anymore. He lives at his home with me, and while he is glad to be here, as opposed to any of the alternatives, he is in a perpetual anxious funk and finds so little joy or happiness in the things he used to love. My brother and I try to take him on walks, look at old photos, even little things he used to like such as stopping by the pet store in our local shopping center where they have rescue cats for adoption and visiting with the cats - and dad is just perfunctory and duty-driven in doing everything, it seems. His attitude seems, "okay, we're here. We see the cats. Now we've done that, let's go." It is hard to fill the time and keep his mind active when he is just going through the motions. We don't want him disengaged and numbed out, but if he is not getting anything out of his activities anyway, maybe having him on an anti-anxiety med so he can be comfortably numb would be better?

Other posters on this site have recommended a geriatric psychiatrist, and we are thinking of asking for referral. You mentioned a neurologist, but have you had a psychiatrist for your Mom? I think for my Dad, maybe someone with that specialty and experience could be a great help in the best strategy for comfort and peace of mind for the LO. It is probably just a cruel aspect of this disease that we have to accept and work with, if the LO can't get to a place of contentment and happiness any longer. I'm not sure how much control their minds have over it any longer or how much we can help.

I hope your Mom can adjust and start to relax. I agree with you that six weeks is not that long to have your whole life upended, especially when your mental capacity to deal with it is so compromised. Your sister might agree to a waiting/trial period of six months to see how Mom is adjusting, because it seems like she is in the best situation for the long haul, and if your sister took her home you all would just be in the same situation again later when home care is even less feasible.

Posted: Sunday, June 23, 2019 11:17 AM
Joined: 12/4/2011
Posts: 18481

Please pin them cown on exactly the training is for AL staff, both initial and ongoing and get that specific information re MC before you make any move. Go and visit at odd times. See for your self.

It have found that 90% of the facilities in my area (3/4 million) do not have the training that would make me feel comfortable for the care of me or a loved one. 

Yes, I did research. One facility owned by a major company, when questioned re training, told me quietly that I would not want my loved placed with them and referred me to another facility. 

Posted: Sunday, June 23, 2019 11:23 AM
Joined: 10/24/2018
Posts: 1068

Misty, hi. My personal 20/20 hindsight thoughts about what Mom went through when she moved to AL sort of mirror your sister's, but nobody was clamoring to take Mom to live with them lol. My sister had already run Mom's household pretty much from the time Mom decided to stop driving at 85 (3 more years til placement). Mom had a huge circle of various friends who took her places and to church etc, but many of them couldn't bear the responsibility of "what if she falls? Can she walk all the way from the parked car to the concert venue in the time allotted?" type of stuff.

When Mom moved, she left a large, bright, airy apartment with a forest full of wild turkeys out her back screen porch. She moved to a cramped and disgusting yellow painted room in a smelly AL facility which nevertheless gives excellent care. I think not-for-profit is good at that. It took her a full year to decide to say she could find herself, as Paul says, content in any circumstance. But she had quite a reaction to her curtailment. Her friends still took her out, but less to anywhere but church because the very first thing Mom did at AL was trip backwards over the heel of her shoe and sit down so hard she fractured a vertebra, which automatically got her a walker and an automatic "walker gait". Also a corset which she likened to a cage. We finally threw it back where it came from because it was causing her SO much distress. 

She lived there for 2 years, during which time her dementia became more and more noticeable, but at least there were no more "crazy eyes" episodes of telling us we had put her here and she would never have wanted this (she'd made us all POA's and Medical Everythings when she was early 80's, so yes, it had been her choice....) Then we uprooted her and plopped her down 600 miles away near me, in a locked AL/MC place the same small size as her AL was. It only took about 2 weeks of crazy eyes before she seemed to adjust, and of course she had what I think of as the obligatory decline. We do what we have to do, and we do what we can. 

She was definitely in early stages, mostly just memory stuff and executive function, when she moved to first AL. She was perhaps (I am no expert) in early middle stages when she moved here almost 9 months ago, and now she is firmly in stage 6 (I'm learning!) and having a very very bad couple of weeks.

Mom has anxiety too, which showed up more when she went to first AL. She takes....I forget what. Sigh. I've had a bad couple of weeks too! I recognize now her anxiety, because I inherited it. 

Even when she moved here in October, she enjoyed many things. Most of them were out of her room, but that's ok. I knew I'd be me plus ALL her friends. Her "down time" activity has ALWAYS, all my life, probably all hers, been sitting down and reading. So even a couple of weeks ago, you'd find her in her little cul-de-sac room in her petite wingback armchair, with a newspaper or a book in her lap. She is most happy that way, and possibly always has been. I know-- I inherited that one too. Did you know that one can have OCD regarding reading lol?? I have been a "if it's got printing on it, I have to read it" person since at least late first grade. So, Mom the same. No common room for her-- television? Bah! It's noisy, distracting, makes NO sense whatsoever, and there is nothing natural about it at all. However, it's a rule that they keep it on I guess. And if you're in a wheelchair you apparently sit facing that tv as long as you are in that room. I couldn't bear that either. Even in dementia, her mind is active on a much deeper level than Hallmark. She doesn't understand "soap opera". LOL

You know? I just realized what I'm doing here. I'm writing her "informal for me only" eulogy, one little bit at a time over days and weeks and months. Sobering.

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