Struggling

sakflva

I just moved my mother out of independent living to assisted. In the week since, she is increasingly paranoid and combative. She blames me for most things. She also is increasingly unable to use her laptop and phone.

She calls all night and then yells at me. I turn off my phone but it eventually I need to deal with it. She also somehow blocks me which is also great.

I know that that Alf will recommend moving her to memory care. She just started Zoloft and we’re talking to her neurologist. I think she needs more meds.

Frankly I also think I need help. I’m just don’t know how I do this for years to come.

Thoughts on taking away her phone etc. or other meds

thanks

harshedbuzz

@sakflva

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

It sounds like she'd be a better candidate for MC. The staff resident ratio should be better, and they would presumably be trained to manage behaviors associate with dementia.

Is the visit to the neurologist for a diagnosis or to address behaviors. If you're seeking medication to deal with her agitation and behavior, a geriatric psychiatrist might be a better option— they're the specialists with the most expertise in psychoactive meds in the elderly.

If the phone has become an instrument of torture for you and a trigger for her agitation, I would absolutely disappear it. Staff can call if they need to contact you. I would also cut her access to the internet. It is so easy for PWD to fall prey to scams or manage money unwisely online. Dad lost $360K day trading in moderate dementia before he was diagnosed. You don't get a do-over.

HB

Quilting brings calm

Changes are hard for people with dementia. Can you tell us more information about her symptoms, abilities and attitude prior to the move so we can get a better idea of where she is in progression? We can make better suggestions to you if we know more.
You mention MC when she’s barely arrived at AL. Was MC mentioned prior to the move by the AL staff? In other words - was MC the original recommendation and AL something you wanted to try first?

Anonymousjpl123

@sakflva im so sorry you are dealing with this stress! It absolutely takes a toll on mental health. Moving your mom to AL was a huge and good first step. I did that, and like you, was constantly either rushing over (she’s 10 minutes away from me) or getting 35 phone calls a day. It nearly broke me. I couldn’t focus at all at work and my nerves were constantly frayed. I couldn’t understand why I had to be so involved when she was already in AL.

That all changed with Memory Care, yes, it was way more expensive. My first choice (which was more expensive than AL but seemed easier) was to get her an aid in AL but that was taken off the table when she had a really bad bout of paranoia and left the place.

Financially, you will have to see what you can afford. But I will say that for my mom who has Alzheimer’s AL did not provide enough support. I’m so sorry, but glad you found this site. It has really helped me.

sakflva

Thanks for the input. I put her in AL bc she wasn't consistently eating and was forgetting her meds. The month before she lost 10 lbs. She'd forget when we last spoke even if it was 15 minutes before. I put her in ALF bc I just took the next step at the CCRC. I didn't realize how much her routine was masking the situation. The preadmissions eval said she was at the base level of care - meaning she can eat, shower, and dress by herself. The thing she masked was her lack of memory. I don't think she remembers anyone's name that she has met at the ALF since moving in. We are in week 2 since moving into the ALF. My mom had long-term care insurance. We just got approved for cognitive impairment.

She only started on Zoloft recently - so I know it hasn't kicked in but my gut is she needs more. Thoughts on other meds. My gut is she might be bipolar and needs other meds.

She still recognizes me, my brother, my husband, and my kids. She can't remember that she called 5 minutes ago or anything about what happened yesterday.

I visited with my daughter on Sunday. I took a photo of my daughter and her together and sent her an email with the photo. Later on Monday, she said something and I think I said - we had seen her on Sunday. She immediately denied it - since then she has said - I know you thought I didn't remember but I did - and then said something rude. She said I said I didn't remember to make you happy - does it make you happy and then obnoxiously sang Happy Birthday? I just ignored her and hung up.

For years, she's always fixated on meaningless things - we could have lost a sock and it was like the world was ending. I think she must be fixating on ways to say mean things to me to get my attention.

She's playing games with her phones. She has blocked me - turns off her phone, turns down the ringer. She says that I never call her back. I don't think she can check messages or know how to unblock or turn up a ringer. It doesn't matter that I did call her back - the point is more - when she's mad she just does stuff that she doesn't know or realize. She calls probably 15 - 30 times a day. Many times just to say mean things - which I just end up hanging up.

Last night, she changed her password on her email. Luckily, I have delegated access to her email so I can still see what is happening. I also set up my email address and phone as the recovery information. Every time she emails to me, she deletes them from her sent email. She also deletes all of her inbound emails. She used to say someone else did it. She sends emails in the middle of the night. Multiple ones with just a subject. I'm pretty sure she doesn't remember doing it. In times of stress about a year ago, she did the same thing. I think she thinks I'll give up if she continues to fight everything. She's now just being mean to be mean. Of course, I'm saving all emails to a folder.

She makes empty threats about her life.

She was adamant she wanted to do her laundry. I'm pretty sure she can't find the laundry room and this morning she accused me of stealing her underwear.

She is now threatening to change her will. My brother and I have POA. I think it's just a threat and not real. Again, I think she's trying to make me change what I'm doing.

I am talking to a lawyer friend of mine to see if we should put a claim in to deem her incompetent. Thoughts on this?

I don't want to take away her phone but I'd like to see if there are phones that I can shut down her ability to turn off the ringer or block callers.

We manage all of her finances. My brother has alerts set up on her credit card and bank account so that if anything comes through we can shut it down. I took away her checks.

Not sure if this gives more context on where she in.

Sheilab01

https://alzconnected.org/discussion/69398/struggling

I guess I was lucky in a way because when I had to fly to Florida dec26 and start picking up the pieces of my dads life and taking over everything I had to bring him back to NY with me because of his long term care policy only pays for NY facility. So I took his phone and wallet when he was in the hospital and when we got back to NY and he asked for his phone I lied and told him it had broke during the transition. It’s so hard for me to lie to him but u fortunately I have to. I wish you the best of luck. Get some help for yourself. I took myself to therapy, it’s the best!

H1235

I would block her calls at night or whenever you need a break. Don’t tell her you’re blocking calls, just say I must not have heard the phone. If there is a true problem the facility will call you. As far as the visit with your daughter. I’m not sure I really understand. She forgot you came to visit, let it go. She is not denying it, she just doesn’t remember. You pointing out something she has forgotten is frustrating for her so she lashes out. I don’t really understand the email thing either. What is the concern? If the emails are upsetting to you don’t read them. Does it matter what she does with her email account? All of her independence is being taken away. She is upset. She needs to feel some control, success. Give it to her. If she says you didn’t visit Sunday say oh I must be mistaken. If she wants to do her own laundry don’t tell her she can’t, just go along with it. AL will deal with it. I have attached a cheat sheet on interacting with a person with dementia. I found it very helpful.

A class or workshop might also be helpful for you. Interacting with a person with dementia can be tricky. I hope this helps.

M1

Hi sakflva, I agree with harshedbuzz—she needs memory care, not ALF. She also needs a geriatric psychiatrist—you are right, there are other medications that can definitely help, but if there is a true question of bipolar disorder, all the more reason to be sure you get the medications right the first time.

You should take away her phone, email, and any internet access right away. If you have DPOA, you do not need a doctor's statement to declare her incompetent. The caregivers can call you or arrange for you to talk to her whenever, but she is susceptible to scams of all sorts.

Emily 123

Hello,

I think you're at a point where many of us have been. It's hard when your loved one seems to be able to carry on a conversation and interact socially and yet acts so unkindly and accusatory. It won't make it any easier, but her actions might make more sense if you keep in mind that she can't recall any conversations, phone calls, or information. She may have had a routine that helped her navigate her days in IL, but those routines and surroundings are different now, and without a working memory she can't imprint information - the room will be unfamiliar for a while, she won't know where things are or have a routine. A lot of her mental reserves will be focused on trying to make sense of her new place and so what looks like new, accelerated behavior is actually her working at the limits of her reserves with what the disease has left her. She's living in a bubble where what exists is 'right now', not what happened earlier in the day. The disease will have limited her ability to process emotions, use empathy, logic, and reasoning. The result is a person who is untethered to time and unable to recall or understand why they're in an unfamiliar place. Any information or conversations are in one ear, out the other. All she knows is 'right now' she's in an unfamiliar place and she can't recall what you've done to help her. It won't make sense to her—she thinks she's fine—and she may feel abandoned, and angry. As primary caregiver she may blame you, and she'll pick up the phone to let you know, continuing to do so without recalling the other 15 calls made that day. She'd be better supported in MC, and feel less stressed since they'll have more staff and a focused structure there.

Can you make her remember information? No--the disease has taken that ability away, so you'll have to work around the behaviors and brace your heart while she adjusts. It's a cold comfort that in later stages the anger usually falls away. Do keep working with her healthcare provider to adjust her meds. Do let go of trying to reason with her or 'prove' recent events. It helps to 'go along to get along' and meet her in her reality, but that doesn't mean you have to endure a tongue lashing. If she says she'll handle things that's ok—a lot of times the loss of executive ability will mean that things don't get done, or get partially done—you can quietly go behind her and fix things—she'll assume she's done whatever it is. My mom wouldn't use soap on the dishes, and insisted she was 'going to' do her laundry. The short term memory loss lets you follow up and they won't remember.

You don't have to be at the beck and call of this disease. I bet your pre-disease mom would be so unhappy with herself and not want you to needlessly absorb the anger that she feels at her losses and that she can't control. She is no longer herself, though she may look and talk the same—I had to help myself over this same hurdle by realizing that the disease was affecting my mom's brain just like a traumatic brain injury. When I thought that way, it was easier for me to deal with the behaviors.

It's ok to limit the phone use, block calls, limit visits, deflect or disengage from conversations. It's probably time to take over being the primary on all her accounts with everything tied to your email and passwords. Then set up calls and emails to only come through from her contact list. Might not hurt to get a vpn or ad filter as well to block pop-ups, and remove any apps or bookmarks (like banking) where she can get into trouble. It took me hours to unlock all my mom's accounts, and she'd reset and forget passwords.

549jb

This is all such useful information.

My LO goes into AL tomorrow. Not sure how long he'll last there. He doesn't remember any conversations and it's all repeated over and over again. I will start to think of the disease as a traumatic brain injury (which it is) and try to let the professionals at the place handle what I have been dealing with for the past few years and seriously (trying to get him into a facility) the past 6 months.