Teary Moments-- Another Alzheimers Post

"Guys, we have to be extra special nice to Grandma and Grandpa tonight when we go visit them."

"Why Mom?"

"Well, its been a tough day with Grandpa's Brain Problem.  We need to love Grandma all that we can, and let Grandpa know how much we love and appreciate him.  Some day he might not remember our names so right now we need to be happy he can."

"That's OK if he forgets my name Mom.  I will always remind him what it is."

My eyes filled with tears and I told my son how much I appreciated him telling me that.

****

I have been fighting Alzheimer's with talking about it.  I talk about it all the time.  I am sure everyone is sick about my constant chatter on what a horrible disease it is and how fascinating how the brain deteriorates and how heart sick I am watching my sweet father fall from this disease.  I talk to my kids a lot about it because talking with them makes them less afraid.  Plus it feels comforting to me to give them an excuse why my Dad isn't the Grandpa I know he would have been without this disease.  Why he isn't the Grandpa to my children the way he was a Grandpa to the older grand kids in our family.  I am sad they don't know him that way. 

I think I am past the stage where I see Alzheimer's in everyone I come in contact with.  At one point I was sure my husband was showing signs.  I am pretty sure he isn't anymore(he is only 36).  I am, however, not convinced I am NOT showing signs myself(even though I am only 36).  When I can absolutely NOT remember a word I knew minutes before(Usually in a few games I have played), I get really annoyed and wonder......

I am also way past the denial stage and am into the acceptance stage and helping others stage. 

OK, so helping others is not an actual stage of grief, but thanks to my Dear Dad, I have been trained in the heart ache of loosing a loved one without the actual loss of his person.  This "stage of grief" as I like to call it has been helpful.  If a friend has questions and needs to talk about their concerns they can come to me.  Or if a care giving friend is at the end of their rope and doesn't know where to vent, but remembers I know exactly what they are going through, they can show up on my doorstep.  I am so thankful I have to the tools and understanding to be here for others.  And of course, like many of you have heard me talk about, my Dad would be proud that I have taken the experience of his issues, and used them for the good of many others.  This is what he would want.  My experience of his challenges, any challenge really, to be used for good.

I've started working in Elder Care.  Its been a blessing to help this family I am working with.  They are sweet people and I have grown to care about them a lot.  Its a nice experience to help them, and then leave the situation and come back home to my family without the emotional stress following me home.  The wife of the couple used to run an adult foster home.  She is very sharp and she has given me a lot of advice on how to deal with my Dad as well as my Mom and different techniques I can help and support them. 

Kathryn gets the pleasure of spending Wednesday mornings with her Grandma and Grandpa Frederick while I work.  I have been fortunate to bring my Dad back home with me a few Wednesdays to have some lunch, watch some Perry Mason, and spend a little more time together(OK, maybe I sleep next to him while we watch Perry and he sleeps next to me while I watch Rachel Ray, but we are still together, right?). 

This past Wednesday my Dad was very down.  I didn't know how to comfort him.  Not that it matters anyway, right?  He won't remember from moment to moment what we talked about.  But I handled it different than usual.  Each time he brought up his concerns I reminded him that he had Alzheimer's and asked him if he knew that.  He said he did know that, but I am not sure he did.  I told him that was the root of his blues for the day.  He was going through a lot of challenges. 

He said he just feels like he has no control of his life.  He feels like he can't do anything right.  He can't do anything on his own.  No matter the length of his memory, these are his current feelings.  And they are spot-on.  This is exactly what Alzheimer's has done to him.  He said he felt like he used to do so much and now he just can't do anything.  I reminded him again that this was his brain problem.  Its not his measure as a man, but rather a measure of progression of an awful disease.  To which he replied:  I hate Alzheimer's.  The rest of his visit he didn't bring up his concerns or his blues.  Maybe he forgot, maybe he got over it, maybe he moved on to the next thing in his mind to repeat over and over.  I was left thinking about his fears.  I wish I could forget them. 

At the beginning of the year we attempted to move Dad into an assisted living home.  It didn't work out for various and heartbreaking issues.  More than anything we never wanted to go there.  More than anything my Mom wants to  keep him home and care for him.  Certain issues he was dealing with at that time were corrected with some medications.  He finally got some help from a state social worker and had some headway.  It was interesting to see the support we got at this time, as well as the non-support.  People who knew nothing of our situation, but were very familiar with life with a loved one with Alzheimer's understood exactly what we were dealing with.  People who know and love Dad and didn't want to see him in a facility were not supportive at all, however, these people are not aware our concerns, his behaviors, and honestly don't spend much time with or in our current situation.  I understood their side.  Its part of the denial, anger, blaming part of grieving that I personally have gone through what feels like a dozen of times.  No matter what I was feeling, I felt that I needed to support and be strong for my Mom.  She is the only person who lives with him 24/7.  She has more challenges than any of us can ever know about.  I can't imagine the sadness she deals with on a daily basis.  Just another reason for heart break I guess.

We might be there again-- exploring our options to move Dad into a different assisted living home.  I am overwhelmed, again, with sadness.  The loss of my Father has just been excruciating.  It comes again and again and we can never close this cycle of grief.  We simply keep climbing through it over and over depending on the day, depending on the situation.

So I have to remember the words of my sweet little boy: 

"That's OK if he forgets my name Mom. I will always remind him what it is."

I will too.

You might remember my post:  http://mconser.blogspot.co.uk/2011/09/club-sandwich-generation.html