Memory Loss

It’s inevitable . Don’t count yourself out. No one wins in this battle. 

She called me and voiced her concern. I said, “what’s the matter?”

“He asked me again how old I am.” Repeat.  Rewind.  Move forward.  It was the advice I gave. 

“Keep drinking your nightly glass of wine too!” That advice she liked. A lot . 

Memory issues are ever present in my own devised, messy life. As a brain tumor survivor,  I decided to do life as my will determines it to be. That can be complicated as well as simple. Never boring. 

Then there is my autistic son . He has real issues remembering everyday life sequences. I try to make life fun for him. It really helps. 

The problem I see with care takers is the isolation brought on by the inability to be out in society as much. My idea is we all need to help each other.  Forgiving those that are losing their memory also is probably not what a care provider or family member wants to hear, but it’s the only way one can be. 

For example, Caring for my son was days without sleep turning into countless years with sleep deprivation. My son turns 24 next week, 22 years I was the main provider. I had several helpers throughout the years and his dad was awesome, but most weighed heavy on my shoulders. 

Routine also needs to be kept constant. I did not realize it until my son was born. I am mostly a spontaneous person and do not care for everything being the same day in and day out.  Spontaneity was needed because my RN job caused me to have to document everything very closely by the clock. I sure did not want to do that with my personal life! 

Written in memory of those who lost their battle with dementia. 

Easy Out

No easy out- we must stop or we will crash!

 

We need to learn to let go.  We hold onto things way too long that needs to be released.  I decided recently I need to start judging.  Yep.  You heard right. Judge.

After carefully thinking through this, I am judging it all.  How you taste inside me?  What drew me to you?   Where this will take me?  It is true good or bad and now I am OK with judging.  Watch out.  I may prematurely put you to the test.

Mental Health

Luke and mom on a very good day snowshoeing

 

If you read this, it will change your life…

Luke has a rather severe case of autism. It is coupled with Bipolar. He can rage at a moments notice.  If you are in his way, the chances of you getting physically hurt are high. 

I had just returned home from a trip to Hawaii ( yes I have a life) when I had my son over for a few nights.  While finishing supper with  Luke, he was his usual hyper self. What happened next was 5 hours of pure nightmare. 

Luke ran upstairs to his room and began hitting the back of his head into the wall. He has made several holes in the drywall, but it had been 5 years.  I caught only one bang of his head visually by the time I got to him.

While physically injuring himself, Luke was crying loudly and a hematoma was developing on his cranium.  I was able to ice his head, give him meds, and get him in a bath tub to calm down.  The pills kicked in, but the crying and other bad behaviors were persistent. Five hours later he was asleep from pure exhaustion. I did not sleep at all that night. 

You may wonder why I did not call 911. I want to tell you why. Here is what conversations took place from this incident. It was almost exact to what I had heard a few years ago when I reached out for help. One day I fear I will be unconscious and can not even make these calls. Luke did make me bleed. I am fine though:

1. I called the crisis hotline and left a message. That’s right I got a voicemail. 

2. I received a call in 30 minutes from a man who called himself a social worker who triaged the hotline. He said my son would be restrained if anyone came to my home. He put a referral in for me, although I said my son doesn’t need restraining.

3. The referral call came an hour later and she was a social worker too. She stated to me almost verbatim what the first man said. She added one bit of information by saying we have nothing good for adults with autism and our community is 20 years behind . 

4. I talked with Luke’s medicine management provider. He stated Luke was more than he could handle and refused to see him in his office the next day if he was aggressive.  He said call 911. I believe this is a cop out by providers and lame.  I think providers need to see the patients how they can be and not all calm.  I worked for 30 years as a nurse. I understand the hazards. 

5. I spoke with a RN friend who works as a mental health nurse on the largest psych unit in Seattle . She knows Luke personally and said again to me: “Luke would be restrained. Please try not to bring him or call 911.”  She knew my pain and our predicament.  

6. I called Luke’s case manager and met with him. Luke is being placed back on a list for a special home. Will there ever be one found ? We have been down this road before and three homes refused to take him. 

Rewind :  Will society ever do what’s right  for folks as Luke? 

Luke is better right now, but I wanted all my readers to know we have a crisis in mental health. Again, will we ever get this right?  I will not call 911 for my son to be handcuffed. 

Can We Talk?

Can we talk about autism? Or better yet the impact of autism on an individual? My son Luke is now an adult. His disability affects him in many ways.

While on a fun trip downtown to Seattle, Luke always enjoys the sights and sounds surrounding him.  As his mom, I can notice when he feels overwhelmed. It is in those times we have to slow him down.
At home he will lay around, but it is not his usual. Luke likes pacing. I am sure this is genetic! His dad and brother do the same!  If we do not put the pause button on Luke, however, his brain will go into overdrive.  This causes him extreme stress. As family we notice this. Others will not recognize the symptoms as easily.

Luke’s care providers know this about him too, but it took a lot of training. Being a provider for Luke can hold special circumstances due to Luke’s strength.

Can we talk about that strength of Luke’s?  I swear you would think he was the Incredible Hulk. He has broken so many things when he is upset. I decided long ago pretty things in my home weren’t important any longer !

Can you talk now and tell me – are you able to let go and not get upset if you lose every material possession you find precious to you ? I learned long ago I could.