When They Believe, So Do You: Dementia and the Truth

locked  doorMy Mom is now sundowning and paranoid. The doctor has recommended new medications and the staff has asked that we hire additional support who can help redirect her from 1 to 9 PM daily. It seems odd that she would need additional support given she is in Assisted Living, but she is a very mobile and moving into more behavior that is resulting in concerns for her dignity when she wanders into the Independent Living community where she lived for more than a decade. She is getting very confrontational and Independent Living isn’t staffed to help her.

The doctor has adjusted her medication and we just hired a personal assistant who has been told to lurk in the hallways and be as invisible as possible. As I’m leaving a late night tennis match, my Mom calls to tell me that they are trying to move her out of her apartment.  She tells me she will “barricade the door” until I arrive in the morning. I tell her I’m coming over now. She is relieved.

When I arrive, I stop by the nursing station and they tell me they saw my Mom walking to the Independent Living dining hall, but had nothing to report. I ask if they had seen anything to give my Mom the impression she was being moved from her apartment. As soon as I ask, I realize how silly my question sounds. They smile and tell me “No.” My Mom was very convincing on the phone — I know she believes what she tells me which is heartbreaking. I imagine how frightened and alone she must feel.

When I get to my Mom’s apartment, she is wound up and happy to see me, but doesn’t mention someone trying to move her out and there is no evidence to support what she told me when we spoke 25 minutes ago. She doesn’t even remember calling me. However, tonight she is frantically moving around the apartment. I suggest we find her pajama’s so she can get ready for bed and I can go home. We spend almost 40 minutes looking for her pajama top. It’s a two-room apartment, but my Mom continually embarks on a different task and I try to settle and redirect her which makes the search so lengthy.

I step out and request something to help my Mom settle down. They give me a dose of Ativan and I set the pill container on the kitchen counter. When my Mom sees the pill, she quickly picks it up and takes it — I didn’t need to prompt her. We never do find her PJ top and after 2 hours, I realize my Mom is not going to go to bed or change into her pajamas as long as I’m “visiting.” When she starts to yawn and slow down after the Ativan starts to calm her, I kiss her good-night.

I recognized years ago that my Mom believed what she was telling me. Usually it was that she was paying the bills or ate breakfast — things I knew not to be true because I was doing them or had been with her all morning and she refused breakfast. It’s harder to know the truth when you aren’t with her, my Mom can still be very convincing.

The hardest part is that I know she believes what she tells me. My Mom is all alone and I wonder how to help her be more at peace. Challenged.

12 thoughts on “When They Believe, So Do You: Dementia and the Truth

  1. Kay, I am sad to hear the issues with your mom…..I know I might be dealing with the same as my mom progresses too. I was just at the [COMMUNITY]yesterday paying the bills as you do, but did not see your mom……I still can’t figure their new billing system either!

    1. Hey Steve – It’s nutty. I continue to try and figure out the “why” and soon there will be no source I’m sure. I just got the new bill for the first time and am waiting to speak with Accounting. It didn’t make sense!

  2. Having been through this with my mom, I empathize with this step of the journey you’re going through. My mom believed every bit of paranoid thinking she went through and even had others convinced of some of it – mainly that I was stealing her money – to the point that Adult Protective Services was getting ready to investigate me to see if I was guilty of elder abuse (I didn’t even have any access or control over Mom’s finances at that point).

    It was challenging, frustrating, and sad all at the same time because there was nothing I could do to help Mom or to “fix” things. It took a complete breakdown, 10 days in a geriatric psychiatric hospital, and a successful combination of anti-psychotic, anti-anxiety, and cognition-enhancing medications to get Mom back to solid ground, something I didn’t think was possible.

    Although the progression of her dementias and Alzheimer’s Disease continued, except for one instance when her O2 saturation levels were extremely low (she was on O2 after that until her death), once she was on the right combination of medications to address the behaviors, we never had any more paranoia or sundowning. She had peace of mind and I had peace of mind and knowing that she trusted me in spite of all the “craziness” we’d been through was an incredible gift.

    I hope you and your mom are able to get that peace of mind soon.

    1. Thank you. We are trying to work with the community but it seems we are on the wrong path. My guess is the psych hospital maybe the next option to help her.

  3. Have you looked at memory care units to replace the assisted living facility? Seems like that might be easier and a lot less expensive than hiring an additional person to be with your mom 8 hours per day. And those are locked facilities, so no wondering would be possible.

    1. Thanks – we already started to look at options. They have a locked facility but as of three weeks ago said she isn’t a candidate for their facility unless she responds to medication. We know the next move will only make her world even more scary and degrade her cognitively.

  4. The sundowning stage is one of the most difficult phases of Alzheimer’s in my opinion. Watching my dad go through it, I felt like what was remaining of his sane self was wrestling with Alzheimer’s for his mind. Sadly, we know how that battle turns out. As letstalkaboutfamily said, memory care may be the next step. In addition to a secure facility, the staff are supposed to be trained to handle a wide range of dementia-related behaviors. My dad’s facility wasn’t perfect (are any?) but they did keep him safe and as comfortable as he could be.

  5. Thank you. We were hoping to not have to move her knowing it will be even more difficult for her, but it’s likely our only real option. The facility has a dementia unit but they didn’t feel she would be a good fit unless she responds to the medication. All choices seem to stink.

  6. Kay, I have recently found your blog as together with my sisters we learn to deal with my mother who has Parkinson’s Disease and dementia. Mum (80) lives with Dad (89) at home but with 24 hours care : 3 daughters, 1 cleaner, 1 agency worker (funded by government) and 3 paid carers funded by my father’s retirement money.

    The truth is so hard for dementia sufferers to comprehend and we tell Mum that her brain is telling her lies. We have had to deal with Mum’s belief that Dad is not only having an affair with one of the carer’s, he has also fallen in love with the carer. Mum and Dad celebrated 60 years of marriage last year, but the brain really does lie and clouds the truth. We know that this is one of the common paranoias and are learning something new each day about dementia. COPING.

    1. Yes, it is so hard to watch and know how to manage. I am still never sure how mom will respond to the truth but pledged to always tell her once. I realized that the brain creates it’s own reality. Three doctors sat with my parents at different times and after different medical testing was completed to explain their diagnosis. My parent’s refused to accept it and just wanted life to continue as if the diagnosis never existed. The first doctor who diagnosed my parents and witnessed the denial told us we would have to be “sneaky” to help them. I resisted because it seemed dishonest. However, sometimes its was the only way we could do what was best for them. They were unable to make that choice for themselves anymore.

      My mom started to become very paranoid and there are many medications that can help. My mom doesn’t have Parkison’s so I’m not sure if that complicates the medication options, but I would talk to her doctor. Respirdal helped my mom. It’s an off-lable use and has risks, but we are working to keep her as comfortable as we can and short-term happiness outweighes the risks for us. Good luck. APPRECIATED.

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