Trust

Superdave67

My dw was diagnosed with ES in 2019. She has been  in semi denial ever since ... She is constantly online reading articles about vitamins that help with memory loss or supplements that can reverse Alzheimer's. She doesn't want to have a discussions about her diagnosis stating that it's too stressful so we've never really had that sit down conversation. We seem to get an arguments a lot when I try to correct her or stopped her from repeating a task that she's already done I tried to explain I'm just trying to help and I have her best interest at heart. I just wish she could trust me when I tell her something that I am here to help with her memory rather than point out that she has forgotten something, I know that there's a very fine line there and sometimes I just don't know how to keep from crossing it. I just want her to trust me and listen to me when I tell her something but I don't know if that'll ever happen. Has anyone else dealt with the same situation and if so how did you deal with it? Thanks in advance...

Marta

Dave - this is a nearly universal experience among caregivers of persons with dementia (PWD).  We need to realize that their brain is broken; they cannot reason any longer.  A helpful read is:  Understanding the dementia experience by Jennifer Ghent Fuller - I got it from Amazon.

We caregivers have learned to NOT correct or interfere with what a PWD wants to do unless it is a matter of safety.  You work behind the scenes, undoing what has been done wrong, facilitating them so that they can be successful without lecturing:  this is how you do it.  PW cannot learn new information and we should not expect them to.

Never argue - reasoning does not work.

terei

She is not going to ‘trust’ your opinion on anything if it differs from her reality.  There is no explanation to her that will change her mind about any subject at all, in fact.

The best way to handle a PWD is to deflect, agree, be noncommittal.  There is no reason to discuss her diagnosis or bring it up.   She asks what is wrong with her, just say she is having some memory issues + you are there to help her always.  If she is repeating a task, as long as it will not be harmful to her, let her go ahead with it.

 Explanations to her are fruitless + the sooner you accept that, the more smoothly everything will progress. 

Superdave67

Thank you Marta,

You are the first person from a caregiver to give me advice ... I am new to this forum ... I have no clue what I'm doing at times .... So please feel free to hit me between the eyes anytime you see I'm doing something wrong or a better way I can do something. I'll take all the advice and encouragement you can give. I just want to just give her the best and most respectful care I can. I value the input of others that are going through or have been through the same struggles.  Thank You Again !!  

Marta

We have another forum, the spouse/partner forum, where you will meet and get advice from other spouses in your situation.  It is the one listed under the caregivers forum.

Superdave67

 Terei, Thank you for your advice, I am new to this forum and no one has talked me through any of the journey I'm in store for.... I know everyone's journey is different but I need all the help and encouragement I can get . Thank you again for being honest and very direct with me ... I really appreciate it.

Mint

Marta stated it well.  This was , and still is somewhat hard for me to do.  I sort of just let my mom talk, I don’t say much and carry on basically behind her back.  My mom will not trust me even though I am the one who she depends on for all the things she can no longer do.  Have sort of had to learn to detach, do what has to be done and accept what is.  

Cynbar

This dementia journey requires a total recalibration of how you interact with your wife. The best way to start each day is by reminding yourself that her brain is broken and the old rules no longer work. It's almost like you two are speaking different languages now. When you try to explain to her how to do something, it seems so simple and logical to you, but to her it's like you are speaking German or Mandarin. She just can't get it or process it. And the more you try to reason with her or make her see, the sadder and more upset she will get. Avoid discussions as much as possible. Let everything go whenever possible, no reason to point out to her that she's doing something wrong, what does that accomplish? Keep discussions as simple as you can, too much information is confusing for her. And try to stay calm, she will pick up on your feelings and get more tense herself. This was a tough hurdle for me to get over. I spent a lot of time trying to reason with my DH, it was getting me nowhere and agitating him. I came to these boards a year ago and learned to defer and deflect,  not to argue or explain. It was calmed both of us down a lot. If I can make that jump, pretty much anyone can.

M1

I agree with what others have posted Dave. The sad part is that in making the shift to caregiving mode, you have to realize that you can no longer treat her as your emotional or intellectual partner and equal. That’s what makes this hard. You can’t share your grief and frustration with the one you’re used to sharing it with. That’s what’s hard, but this forum can help. Good luck.

SunnyBeBe

I just wanted to add that even if your LO trusts you, there may still be issues.  I was fortunate that my LO parked her car and said take the keys and sell it.  It's broken and I don't want it anymore.  (In reality, it was okay.  She just wasn't able to drive anymore.)  And, she told me to take over her bills, bank account, doctor's appointments, etc.  She had appointed me DPOA and HCPOA years earlier.  She kept telling me, I trust you.  However, she still would forget things from minute to minute.  She still had to be begged and encouraged to do some things, EVEN though she trusted me.....So, the trust doesn't really resolve things. It's still a very difficult, stressful and exhausting job to supervise them during certain stages.  I will add that when they enter another stage, some of the challenging behavior may fade.  New issues might arise, though.  It's always something new to learn and deal with.  I wish you all the best as you start the journey.  

I'll add that I had the best luck with praise and encouragement.  I'd tell her what a great job she was doing at getting her bath, changing her clothes daily,  (with assistance).  I downplayed her bladder accidents as no problem. Nobody has a perfect bladder or memory.  And that together we would see to it that she got all the best care.  When she was in MC one of the staff must have told her this, because she repeated it to me.  She'd say I am very fortunate, because I have a SUPPORT system.  I often wondered how she remembered to say that.  She said it for as long as she was verbal.  So, the positivity is helpful, imo. 

Wilted Daughter

Superdave you are right about there being a line that always gets crossed. My mom did not trust for years and would listen to everyone except me. We would butt heads on matters when she did not get her way, even though her way was the wrong way. 

I learned to pick and choose my battles, let her perform repetitive tasks, say wrong things, etc. as long as it's safe to do so. They are trying to hold on and make sense of their reality which may not seem realistic to you or others. Denial is a defense mechanism. After time, I don't know when that will be, she will come to realize that you love/care for her and do things from the position of love/caring. Keep walking the walk and fighting the good fight and she will come to realize in her time that you are trying to help not hurt. 

I buy my mom things to bring her joy in the moment (whatever she likes). You will find little ways to please her/make her happy/smile in the moment, so eventually she won't focus on the disease so much and just live and not fight to live.

I'm rooting for you!

Brian63

Hello I am brand new to all of this, my DW has been diagnosed with Alz for a few yrs. And today something new occurred. My DW is convinced that I am or have had an affair. She has been laying down in our room all day. She has eaten some lettuce for lunch, she is refusing to take her meds(this is the second evening that she has done this). Im at a loss, I love and care for this woman so much. I miss my best friend, she sees me as an adulter. I dont know what to do. HELP!!!!

ButterflyWings

Hi Dave (and Brian) - Welcome though I am sorry you need to join this group that is weathering the worst storm I can imagine. The dementias are nothing nice, and unfortunately only go one way as they are progressive, and terminal. You are in good company here as we have all either been there, done that, or are potentially about to deal with some of the same issues you are seeking help with. We share tips, encouragement, stories, challenges, wins, tears, fears, hopes and strategies to survive our LOs dementia while providing them with safe passage on this journey.

As hard as all this is for caregivers to face, I remind myself that my DH has it worse. He cannot help any of the changes that are happening to his shrinking brain and so in earlier stages, life must have felt like NOTHING could be trusted, since nothing made sense anymore. In fact, he used to say that a lot when a situation or task went sideways. It really made no sense to him what was going wrong. Then, he lost the ability to comprehend that anything was wrong. It is important to know this is not denial. Many of our PWD LOs have a condition called anosognosia. So, they totally lack awareness of their condition, and trying to convince them is a waste of breath, time, and energy. Plus, it can undermine the very trust you definitely do want to maintain as her disease progresses. It will go a long way toward cooperation, less fear and/or anxiety for her as the disease wreaks havoc with her understanding, abilities, emotions etc. DH no longer knows my name or our relationship most of the time, but he trusts my presence and that I am his person. That is enough for me.

Here are some helpful links. The first important thing is to ensure you have DPOA durable powers of attorney in place asap before your LO is unable or unwilling to sign things legally. PLEASE prioritize this urgently. It also helped me to read everything I could find on the caregivers and spouse/partner forums, and the resources or solutions tabs on this website. And I called the 800# hotline a couple of times during the volatile mid-stages (at least they were volatile at my house). So much wisdom and help! I am glad my DH's neuropsych guided us here upon diagnosis. You got great advice from our forum mates already. Keep posting. Hang in there.

Anosognosia and Dementia - AgingCare.com

When Your Spouse With Dementia Accuses You of Cheating (verywellhealth.com)

Compassionate Care Strategies Using the 7 ‘A’s of Dementia - VHA Home HealthCare

Smashwords – Understanding the Dementia Experience - A book by Jennifer Ghent-Fuller - page 1

harshedbuzz

@Brian63

Hi and welcome.

I am sorry for your reason to be here, but glad you found this place.

This behavior is really very common for PWD. So common, in fact, that there's a thread about this topic on the spouse's board currently.

Falsely Accusing Me of Infidelity — ALZConnected

HB