What things did you not know that, had you known, would have made understanding your person with dementia a little easier?

That even though they may not be able to speak, dementia patients can learn, on their own, ways to communicate. My husband, who suffers from aphasia, created a sign language. Rolling his hands has to do with a wheelchair, such as telling me or others that a person in the room has left by wheelchair, or has arrived by wheelchair, or calling attention to wheelchair motion of some sort. Making a choppy motion with his two clenched fists means somebody did something that he likes, or that we should take action. One communication had to do with a friend at his memory care who had left the room in his wheelchair a half hour earlier and was presently entering the room walking. Husband made a rolling motion with his hands followed by moving his hands in a sliding motion to indicate the walking, and he pointed to the friend who was then walking into the room. These are just a couple of examples, but the friends at husband's table picked up on the sign language and added motions of their own.

(1) Dementia patients may know and be able to do more than we expect. (2) This sign language development would not have been as likely if husband were living at home instead of in his memory care facility. His brain was stimulated and motivated to work on the problem of communication by being around other people, as were the brains of his friends there. (3) These dementia patients all had (estimated) at least Stage 5 dementia when they developed their own sign language. (4) The patients all were high IQ and were retired from successful professional careers. (5) The facility staff did not teach them or demonstrate how to do this.

For me, it happened all of a sudden.
My then 53 yr old husband had a massive stroke, which caused traumatic brain injury. What surprised me was when the neurologist informed me that those damaged brain cells will never heal, never come back. Every other part of our body heals itself, but the brain cells are just gone. It is possible to use undamaged parts of the brain to re-learn, but it is never the same.

What I was not prepared for when he was kicked out of the nursing home and I began my journey of taking care of him at home, was the constant moaning for help. I responded badly. I got angry. I yelled for him to please stop! It could go on all night long. I was not sleeping most nights. I now think my early reactions to this helped shape his non-cooperation with me now. He was confused to see me so angry and mean. I had always deferred to him and treated him with respect and love. He didn't know who this angry woman was.
After 3 years of begging the doctor for help and trying multiple different medications, I finally had a pharmacist review his meds and suggested we try Trazodone. It was like a miracle drug! It not only helped him to sleep at night, but put a stop to his leg tremors, which happened involuntarily every few minutes. Finding the right medication to calm him was a MAJOR turning point in our lives!

For those who try anti-anxiety meds; be careful. Many are addictive, which means the patient will get anxious when they need more of the drug, and it takes more to get the same effect. Eventually, you will reach dangerous levels and there is no positive effect. For a short time frame these may be fine, but long term use will yield negative side effects.

I learned about Perseveration: the uncontrollable, repetitive continuation of a word, gesture, thought, or action. And the best way to manage it is re-direction.

I learned I could Google any crazy behavior I didn't understand, and get a whole lot of professional information about it. That helped me to have more patience when the behaviors were frustrating me.

I discovered just how important it is to keep a consistent routine. My mantra:
Routine is Key. One day I surprised my husband and his friends by bringing him to a fund-raiser breakfast at the Elk's Lodge. It was a great event! He was thrilled to see his good friends and they were equally thrilled to see him. A good time was had by all. But, as the day went on, he became particularly agitated, anxious, and demanding. He was over tired and over excited. As pleasant as the visit was, it was unexpected and out of the ordinary. And it disrupted our normal routine. He didn't know how to get back to the familiar routine. I was beyond exhausted, angry from dealing with his difficult behavior, and late at night, getting him settled in bed, I fell and sprained my knee. It never healed properly, and I still struggle with difficulty walking and bending after 8 years.

Having a sense of humor and taking breaks is so important when taking care of someone who is no longer the same. They will do and say crazy things, things you never expected. You just have to be prepared for the unexpected and be quick-thinking to adapt to the crisis of the moment.

LOSING TIME: They can’t track how long time is.
**Challenge: They think they took a shower yesterday even though it was two weeks ago.
**Benefit: A therapeutic fib such as “you can’t live at home while they replace the roof” can last for years.

AVOIDING SOCIAL ACTIVITIES: This is typical dementia behavior. They are struggling to participate so it is easier to just not go.

THEY LOSE THEIR HUNGER / THEY WON’T ASK FOR FOOD: When a dementia patient says things like “I’m not hungry” or “I don’t need anything”, it isn’t manipulation. Their brain really isn’t registering hunger. Most of the time, they will eat what is put in front of them.

THEIR TASTES CHANGE: Things don’t taste the same. Just because they liked it yesterday, doesn’t mean they will like it today.

TURN OFF THE NEWS AND VIOLENT MOVIES/TV: Many Dementia patients will internalize what they watch on television and think it is happening to them. They may even call the police. Instead put on happy shows and movies. Set up playlists of their favorite musicians, especially from their younger years. 

THEIR BRAINS CREATE “PAIN” TO GET MEDICAL ATTENTION: Because their brains know something is wrong but can’t figure it out, they will have legitimate pain without a cause. They can have the same complaint over and over again with no resulting diagnosis after testing and examinations.

REDIRECT THEM SPECIFICALLY TO THINGS THEY KNOW OR LOVED: When redirected, take them to their past. Ask about their first car or their garden. Ask them about the things of their distant past.