What I've learned

Kevcoy

I noticed I joined this group in Sep. 2020 in the height of Covid and it got me thinking about what I have learned being here for a year and  a half.  First and foremost I have to say the biggest thing I've learned and which has been the most helpful is to not argue with the person with the disease because what most everyone says is true, is that you will NEVER win an argument.  Sometimes I slip like yesterday when I found the binder I keep checks and invoices sent to my family corporation that I am treasurer of missing.  My DH loves to put things in "safe places" and I became unglued.  Luckily I found it in a chest of drawers.

Another bit of helpful information I read about a lot here from many people is that it is the disease and not the person and not to take it personally.  Along with that is deflect, deflect, deflect.  When things start going south it's time to change the subject and avoid any pain that may come along.  This goes hand in hand with the Fiblets or little non-truths.  Thank goodness for these fiblets to ease their confusion and my frustration.

The last on my list today and it's for me personally is my being able to create and hold boundaries with my mother in law.  It has been over eight weeks since she assaulted me in my house and she hasn't been over yet.  She is toxic.  I can't help what goes on between her son and her when I'm not home but I do have control over myself when it comes to her.

Thank you everyone.

Paris20

Kevcoy, you are so right. I’m sorry you had your mother-in-law to deal with on top of everything else. May she stay far, far away from you.

 After admitting that I could not take care of my husband alone, I hired an excellent aide. However, my husband refuses to allow her to do anything for him. I am IT but she does everything else around the house for me.

 The aide has been caring for Alzheimer’s patients for 15 years. She told me she has never had a patient as difficult, recalcitrant, stubborn, and volatile as my husband. We both redirect him when we see one of his tantrums coming. We don’t argue with him. We go along with him as long as safety isn’t jeopardized. We never question his absurd opinions. Debate is out of the question. He is on two different meds which help us. However, the result is that both the aide and I are stressed, big-time. We console each other every morning because DH refuses to get out of bed before noon. It’s my mini vacation. 

michiganpat

Kevcoy, You are so right. It took me awhile to figure out that trying to get my DH to listen to reason was a waste. He has paranoia and there is no way to change his thinking. Now I just listen and have saved many arguments. Also, just as important is to not take what he says personally. He says some very hurtful things to me which he would never have done before. I remind myself it is the disease talking. It is not easy. I don't always succeed but am getting better. Acceptance is what I am struggling with. I used to think of dementia as a memory loss/confusion issue. It is so much more. To me they are the easy part. The personality and behavior changes are the hardest. Thank you for posting. It is helpful to know I/we are not alone and can learn from each other.

Ed1937

I have learned so many things here that I will not even try to list them. But I learned enough here to have so far been able to keep her home. Without this forum or another excellent source of information, I'm sure she would have already been in a facility. So a big "Thank You" to everyone who shared their experiences.

T. Slothrop

Good prompt, Kevcoy. 

The main thing I’ve learned from the many hours I spend on this site is that lots of people have it way worse than I do. When I feel sorry for myself (often), it helps me to read what others are going through. 

Crushed

Ed1937 wrote:

I have learned so many things here that I will not even try to list them. But I learned enough here to have so far been able to keep her home. Without this forum or another excellent source of information, I'm sure she would have already been in a facility. So a big "Thank You" to everyone who shared their experiences.

I learned here that a facility was the best answer for DW

I watched her walking yesterday on face time.  She is where she can walk safely and unassisted (although watched)  She has had no idea who I was for almost 4 years

ButterflyWings

Great topic, Kevcoy!

Like Ed said-I’ve learned too much here to list! But some of the most helpful insights: 

• This forum offers the most knowledgeable insights available about dementias 
• UTIs are a thing! And a mysterious trigger for any sudden negative behavior 
• Anosognosia is a thing also. Not denial; many PWDs can’t see they are impaired
• Financial and other support for PWDs and caregivers is shockingly inadequate
• Too many (1/3!) of caregivers do not survive their LO’s disease. Self care is key!
• We really have to watch our LOs closely. Food in drawers, checks in trash, etc.
• Sundown is not a beautiful, colorful horizon skyscape. More like a Jekyll & Hyde movie
• Strategies from Teepa Snow, Naomi Fell (sp) and forum mates can keep the peace
• Meds like Seroquel, for my family & many, uncrosses some of the wires & limits hallucinations, delusions and other walks on the wild side that progressive stages bring

toolbeltexpert

There's lots to learn. 

This is a safe place to say it

I haven't had to use the meds but some sound very effective if I need them for dw I know what I would look for.

There are so many more in lot's worse shape than me.

The knowledge that alzheimer' disease isn't limited to any one group of people, rich or poor,educated or uneducated, it attacks women more than men,.

Caregiving is hard work. Loving care is harder.