The Signs We Missed - Raising Parents Suggestions

 Okay, so *rolling of shoulders*

This is what I have learned about dementia in the past three weeks.

The early signs are so easy to miss or notice and/or attributed to stubbornness or aging.  Now that we know these signs, I am horrified that we missed SO MUCH for SO LONG.

• Not drinking water.  This was an endless battle with both of my in-laws.  The dementia changes it so they cannot recognize that they are thirsty, can't identify the feeling of thirst and shrug it off, and/or cannot take the steps to get a drink, even if the drink is right in front of them.
• Denying that anything is wrong or stating that we worry too much about what they're doing.  This is actually called a thing!  Anosognosia  The inability to actual know/recognize that they can't walk steadily, take their meds, etc.  Their brain is literally telling them that everything is FINE.
• Inability to complete Tasks with multiple steps.  Cooking is the best example.  Suddenly something that they could make in their sleep is not possible; ingredients are missing or wrong, things are burnt or undercooked.  Simple things that one just thinks "Oh, that's weird. Let me help..." Or in my father-in-law's case: the inability to check fluids on his vehicle.  He could do one step but then it was all over.  He was a truck driver so this was a huge red flag that we just went "Hmmm".
• "Financial Mis-steps"  Long time readers will remember the story about my m-i-l calling because her bank account "is empty"  or falling for a telephone scam, or ordering 600 socks from Amazon.  We didn't realize that this was a true DEMENTIA sign and not just an aging/memory thing.

Both of the parents were showing signs of dementia years ago. But, as happens, they propped each other up and made it work.  Then once everything happened, the curtain was pulled back.  

They say don't take it personally and that "It's the disease talking" when they say awful things.

• While a person can intellectualize that, it still hurts your effing feelings. It's nearly impossible to not take it personally. Especially and specifically if you had a good or great parent.  It would be easier...not easier but roll with me...if it were my parents as that relationship was already dysfunctional.
• In my online research,  I noticed a difference in guidance between the professionals and the actual caregivers.  While the pros are saying "You can't take it personally" the caregivers are "Of course you take it personally AND you have to protect yourself but also try to suck it up"

• They will say "You have to keep trying..." In our instance as he's in a facility, No we don't.  This is cold-hearted perhaps, but his needs are being met, they love him  there, and he probably can't tell if we were there yesterday or last month.  Not only are we a trigger in his broken brain, we don't need to volunteer for abuse.  In this case, we are "lucky" that he is in a facility.  

When all is said and done, we still need to have all of our relationships and self esteem intact after he passes and the risk of that not happening increases with each episode.

They say "Don't engage" and this is true. We just have failed miserably at it.  Both of the big verbal altercations were just so out of the blue surprises so we simply weren't prepared. But the human part of you feels compelled to reason or try to de-escalate and you can't. You simply can't.  The "They're fighting battles you cannot see" is incredibly apt in this situation.  You can't argue with crazy is something I've said for years and now it applies here as well.

• The advice I was given by the dementia therapist drew on my traumatic childhood, of all things. She said "You know how to read a room, you know the signs.  Use that as an advantage. If the vibe is off or you feel it shift, make any excuse and leave. It doesn't matter the excuse, just leave."  Well, I have that going for me, I guess. The key is to pay attention then leave at the first sign of trouble. 
• They say you can try to redirect them with asking a random question or offering them a snack or turning on the television or radio.  I believe that this could work in some instances, but just not with my f-i-l.  He's in it and will not disengage or will for a moment then return to it. The staff have experienced that from him as well.

You have to self-protect.  Not in the way that I mentioned above, but yes.  

• The reporting fraud to the bank really could have gone sideways for me, pretty easily.  Luckily, it was obvious to the bank that something was wrong.  Others might present themselves as lucid though so just keep that in the back of your head.  If you're in this situation, report the dementia status to the bank so they can make a note on the account.  Report it to anyone that you think they may reach out to. (doctors, insurance agents, etc.)
• Give others a heads-up that this is happening so that when they hear "stories" from the person they're not shocked or sucked into the drama.  Like we did with our uncle and with the friend my f-i-l had just spoken to. We are aware that there is a cousin that is siding with him because they haven't reached out to us to see what's happening and that's going to happen as well.
• While the facility knows that the accusations are most likely untrue, there is likely documentation occurring.  Keep documentation of your own for the big things like this.  This can also help if ever the need  for a conservatorship.  The court will need examples of what has happened to land you there.  Simply a date and a sentence written like "Called the bank and reported fraud"
• Trust but verify.  You have to follow up on complaints, even though you're 95% certain that it's the delusions.  Confirm things said with siblings, family members, and friends. We have gotten different stories from different sources, depending on which personality my f-i-l had during that specific conversation.

Other things:

• We were told that if the person was sweet in their real life, they will be sour in this version. And vice versa.  I don't know if that's helpful or not, but I found it interesting.
• I'm trying to figure out how to succinctly phrase this.  My f-i-l was known by the nickname of his given name (think Andy instead of Andrew) and/or a genuine nickname.  When he entered the facility, he suddenly wanted to be know by his given name. No nickname, just his government name.  As we've progressed, he has also identified as "Mr. Smith" and even lapsed into third person.  I was told this wasn't unusual.
• Finally, the biggest thing that helped me is to imagine that he is Benjamin Button.  He is actually "aging backwards"  Instead of a baby/toddler/preschooler gaining skills, he is losing them  AND he is unable to learn new skills. For example, he is able to track his blood pressure to an obsessive level, but he was unable to figure out how to track when his meds were taken. The blood pressure tracking skills are saved on his hard drive but his hard drive is full and/or fritzing.

Finally, I've taken to referring to him as Personality #12 or recently in a hugely inappropriate coping method "The guy who is currently wearing Dad's skin suit."

Because if you don't keep your sense of humor, all is certainly lost.