Reasoning with LO

Teachertee

My father is my mother's primary caregiver and they live close by.  Last night he called me asking to sit her down with my sibling this weekend to talk to her about her condition (dementia diagnosis).  I have different thoughts on this; 

will she be able to recall a conversation about it?  

How necessary is it for her to understand the technical diagnosis? Or is it okay for us all to call it her "memory problems"?  I think that is okay, although she's having some denial and trouble accepting some terms she saw in writing at the neurologist's office.

How do I best encourage and support my father through this?  He definitely needs help and time to himself for self care.  He's interested in support groups but not in a Zoom format-I think he's hesitant because she may walk into the room while he's on the call.  I'm willing to go with him outside their home to at least get him to the initial meeting.  My father is intelligent and patient but he's getting frazzled and run down.  He asked me to contact her two best friends to discuss the progress and diagnosis.

Thanks for any advice or suggestions for moving forward.  This seems like the beginning of a challenging time coming up, with my mom getting more emotional, aggressive and slightly combative (not physical at this time).

Have a good afternoon.

Tee

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chrisp1653

Of course every situation is different, but in my case, I never held anything back from my Barbara. That doesn't mean that she was able to understand much of it, but I think it helped that she knew I was always being honest with her. Depending on your mom's specific kind of dementia, it might be less of a memory issue, and more of an inability to properly string her thoughts together, as it was in Barbara's case. Oh sure, her memory was the first sign of a problem, but it soon showed itself more in the reduced cognitive functions.

Let me be very clear here. I think support groups are great. I believe that help forums like this are essential. But, the single most important thing that helped us both was hospice.

Now, I am not suggesting hospice right away, but what I am getting at is that when hospice got involved, I finally had more physical help. Finally, there were people coming in to give me a tiny break in caring . It made a huge difference. I'd be willing to bet that having someone come in once in a while - just to sit with your mom, so that you dad can have a few minutes of time for himself - would be a help. Until Barbara went on hospice here, I did EVERYTHING by myself.  It's amazing how your pool of friends seems to dry up when they think that they might have to ( gasp ) interact with a person who has dementia.

I apologize for my rambling way of writing. I tend to just type my thoughts down on the screen as they pop into my head.

I wish the best for your mom, your dad, and you .

Chris

Stuck in the middle

I agree that your father is asking for help, and I agree that the help isn't going to come from your mother gaining more understanding of her condition.  My 74 year old wife calls her condition "losing my marbles" and that's precise enough.  In your place, I would plan with my sister to assure both parents that you intend to help them as they age and become forgetful.

Can one of you take Mom somewhere on support group day - your home, a walk in the park, a bar, whatever?  Your father really needs some time to himself.  He also needs support in taking her car keys ASAP, her control over money pretty soon, and control of her medications and hazardous tasks such as cooking as she gradually loses the ability to handle them competently.

Your father is fortunate to have you. I have a son, but I take care of him.

Iris L.

Teachertee wrote:

 although she's having some denial and trouble accepting some terms she saw in writing at the neurologist's office.

Please read about anosognosia, the loss of awareness of having dementia.  This is different from denial.  No amount of reasoning and confrontation from well-meaning friends and family can overcome anosognosia, because it is a pathophysiologic function of brain damage, appearing in dementia and other neurologic conditions.  

Confronting a PWD with anosognosia only makes them upset and they resist more.

Iris L.

harshedbuzz

Tee-

To attempt to reason with a person who has dementia is to break the cardinal rule of Dementia Fight Club. 

It sounds as if she was informed at her neurology appointment. At best, you and your sib have your little intervention and it's forgotten in a thrice. At worst, it sticks leaving mom depressed leading to an escalation in the very behavior challenging your dad.

I think your instincts on this are correct. Please do follow Iris' suggestion to read up on anosognosia. My mom had difficulty wrapping her mind around the concept, but this quick read helped her understand and be a more empathetic caregiver.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

How new is this diagnosis? What stage is your mom?

I am not sure what to think about dad asking you to contact her friends. I would think close friends who see her regularly would be aware of what is going on. Is he looking to avoid the call around your mom who might overhear?

I think an IRL support group would be useful. Try to find one with other husband-caregivers if you can. If you can't zoom could be an acceptable format especially if someone could get mom out of the house for lunch or a drive.

It does sound like dad needs more help. There are 2 approaches to this. One is to take over some of the routine tasks they did themselves- you could have someone mow the lawn, you could cook extra and deliver them easy-to-reheat meals, engage a weekly cleaner. But the other piece is that your dad needs regular breaks to recharge his own batteries. That could mean a day program for mom several days a week, a home health aide who comes to the house so he can get out to see friends and run errands or perhaps you and the sib giving him a day off weekly by taking mom out or spending the day with her. 

I would also urge you to have a Plan B ready for her care should dad be unable to continue due to an illness or death. You or sib need to be agent on dad's POA and secondary on mom's. Best to have a MCF and SNF (in case there's a qualifying hospitalization with a need for rehab) picked out now. 

HB

May flowers

We never used the term “dementia” with my FIL, although I think early in his dx (6 years ago), my MIL did when he was able to process it. He has vascular dementia.

We refer to it as “confusion” or “memory problems” and that is how he refers to it as well. When we visited the other day, he talked about another resident that yelled at him for no reason and said he thinks that guy must have Alzheimer’s. He said some people there are worse than him, and others are like him with “memory problems”. It works for him and doesn’t seem to cause him undue stress.

As for support, there is also a section on the forum for LOs with dementia - maybe a good place for him to start.

ButterflyWings

Teachertee, 

Below are a couple more links that I've benefitted from They may help your dad, you, your sibling and friends in this new normal. I found that trusted information was my best friend.

I am 24/7 caregiver for my DH now mid-stage 6, diagnosed stage 4 after lots of showtiming and overcompensating behavior from my LO who still does not comprehend that he is impaired. Your dad is likely struggling with not having his life partner and confidante to process these things with. But she can't anymore. I understand. Went through this transition process myself and as AD brings something new everyday, I am still getting used to being in charge and not consulting him about things that only confuse or anger him. Its the opposite of how we lived our lives and is another blow on top of him having an incurable disease that is stealing him away from himself and from me. I can't sit down and exchange ideas and decide together/agree on the best way forward. That ship sailed and its name is brain disease - Dementia of the Alzheimer's type.

The Understanding Dementia article shared already, is priceless. But not for her. It is for your dad, you and siblings/other family and friends who may support, etc. Good luck to you.

Infographic: The Seven Stages of Dementia

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

Rescue mom

I could have written what Butterfly says, especially towards the middle, on down about “still getting used to being in charge and not consulting with him.” My DH (before his Alzheimer’s) and I did, or at least talked to death, everything together. I never made a big decision without his input. 

Those days are over, have been for a couple years. It’s hard when your partner is physically present, but the mind is gone. You think they’ll respond to, or want to know, (this whatever thing). But they cannot. Trying to reason or use logic wastes your Dads  energy, which is most needed now for other things. But it’s so hard to realize that can’t happen anymore.

Nor is your mom likely to remember any discussion about it. My DH was told his Dx of Alzheimer’s—which he accepted very calmly—and got a bunch of papers from the doctors to read.

 I think now, looking back, he forgot the whole neurologist/doc visit in a few days. He’d thumb through the print-outs and papers, and look like he read them, but it also soon became clear he did not understand or remember those either. 

We don’t deliberately not say “dementia” or “Alzheimer’s” but it’s usually just easier to say “memory problems” if needed.