Wednesday, October 12, 2011

Full Circle

My Mom suffers from early on-set of Alzheimer's.  I think she was 68 or so when we first started to notice things were not right.  Looking back almost 5 years ago at Christmas, she could not play dominos… a game she has played before.  She got confused and I was frustrated.  When Little Man was born four and half years ago, she was here helping and could not seem to keep up with the schedule that was necessary… getting Soccer Girl to school, Lizard to preschool, hospital visits and meals.  It seemed odd at the time, but I did not think to much about it.  Then that summer, my sister noticed some things on a vacation her family took with my Mom and Dad.  Dad had been noticing thing.

Then that holiday season my Dad was diagnosed with stage 4 Non-Hodgkin's Lymphoma.  Crisis had set in, friends starting calling concerned about Dad, but also shedding some light on their concerns with Mom.  I was traveling back and forth as often as I could to help out.  I remember one time when Dad was in the hospital, Mom got a message that his insurance had been cancelled.  He was in the hospital, very sick receiving some very expensive treatment and Mom panicked.  She was at a loss as to what to do.  Thankfully I was there so I could step in.  I started making phones calls and got the situation cleared up.  I think much of my Mom's panic and inability to act was stress and the magnitude of what they were faced with.  I could see myself reacting the same way if I were in her shoes.  But looking back, I think it was a very real sign of her inability to make decisions… something very common in someone with Alzheimer's.  She worked her whole career in the medical field.  She KNEW her way around hospitals, insurance and medical jargon.  She was at a loss.  It was during this time that she was officially diagnosed.

Now almost five years later she is struggling.  She has just about ceased communicating.  At first it was because she seemed to struggled to find her words.  Now it seems that she does not understand you.  That may not be accurate, but that is what it feels like and looks like when you talk to her.  Her eyes are often blank or distant.  She does not know her name or her grand kid's names.  On her last visit here, she looked right at me and asked "where is Jenny?"  She needs assistance getting dressed, bathing and cutting up her food most times.

She is fortunate that she is still able to be at home.  My Dad is her 24/7 caregiver.  It is and has been an incredible burden and I am just thankful that Dad finally is getting some assistance with her care.  Mom is now going to adult daycare a few mornings a week.  While she is not happy about it right now (very upset, crying and scared), I believe over time she will get comfortable with the idea and feel safe (she does not feel safe unless she is right with my Dad).  And, more importantly at this point, it will give my Dad a much needed break.  He will be able to rest, visit friends… or hit a bucket of balls.

I dread the next steps my Dad will have to take.  Having to face the decisions he has ahead are so difficult.  His life partner who has been with him through life to help make those hard decisions is gone.  He is left alone to decide.  What is best?  When is it time? I can not imagine the struggle.

To be in another state is both a blessing and a big burden.  The blessing is that I am able to remove myself from the realities of what is happening to my Mom most of the time.  It hits me in waves… like the time a few months ago, I called when she was having a really rough night.  Or when Dad said he was actually going through with the daycare thing.  I was in tears.  That is my Mom.  But I am not around to see the day to day struggles, and that is a blessing.

The burden is not being able to help… even if it would be just bringing them meals a few times a week so Dad does not have to navigate the kitchen.   The burden is not being able to visit Mom face to face when she was more with it.  That time is gone.  I think of things to ask, but the answers are lost inside her.  Like the other day when my doctor asked what type of cancer her Dad died from.  I think I remember, but if no one in my family can remember for sure, that information is gone forever.    

It has been an interesting journey over the last five or so years.  Sad, aggravating, funny and scary all at the same time.  Scary because I see my future.  My Mom, her sister and their Mom… my grandmother… all have/had Alzheimer's.  I think about not remembering my kids and tear up.  I think of my husband and all the funny little memories that only he and I share that will be gone.  It is a horrible disease.  And the thing about it - there is not a damn thing I can do to change my fate.  If heart disease ran in our family, I could at least change my diet, take cholesterol medicine, etc… at least do something to know I did everything to help my fate.  But beside the typical advice to exercise and eat well and take fish oil, there is nothing.  That is scary.

So as my Mom comes full circle… needing help dressing, going to daycare with a snack schedule and a change of clothes… I will do my best to remember what is important in the circle of life.  A place to be safe and loved.  A place that memories are made not by things or busyness, but with time and engagement.  I will hug my kids harder, turn off the TV, computer and unplug the darn iPhone more.  I will spend time with Chief.  I will make changes to our life so whatever time I have left to remember, whether it is 10 years, 25 or 50, I will have made the most of it.  My family will be able to say well done.

Well done, Mom.  I love you. 

Wednesday, October 5, 2011

Back to School

Well, the kids have been back to school for a month and I am just getting around to this post.  Yah.  Ahh… it has been hectic to say the least.

Little Man is in 4's preschool at the same school and class.  So his "back to school" was pretty uneventful.  He has the same teachers he has had since last June.  There are a group of new kids and he has done fairly well adjusting.  He has good days and bad days.  He has a really hard sharing his "show and share" toy so recently he has been "banned" from participating for awhile until he can demonstrate he can share.  We will give a whirl in a few weeks.

We are still tackling his behavior issues going through good patches and rough ones.  I texted a friend last week that we have been firmly in Holland for several days.  It is hard to admit but I always dread walking into his school because I do not know how the day has gone.  I breath a sigh of relief when I round the first corner and can see that Little Man is not in the director's office.  Then I take a deep breath of relief if I do not have to sign an incident report.  I did not really realize I felt that way until recently.  It has been happening for a long time, but I did not recognize my thoughts where consistent each time I pulled up.  Sad but true.

I am a work in progress.  I fail miserably embracing all that makes up my Little Man.  It pains me that I struggle with him in public.  That pain makes me alter my plans so I do not have to deal with the frustration I feel and looks I receive.  Some days I can embrace his challenges and hold my head high.  Other days, I can not.  A work in progress… still.

Lizard is in third grade.  She is with two of her best buddies and loves her teacher.  She has slide into the school year with almost no hiccups.  And, what I love best about this year, is that I altered my morning schedule so I can take her to school.  She and I drop off Little Man at preschool and then I drive her to school.  We usually have about 10 minutes until she can go into school.  So we wait in the car… just the two of us.  Sometime we talk about serious stuff and other times we just kid around.  I love it.

She is cheer leading at the football games.  She loves it and maybe has finally found her thing.  She is taking it seriously and we all have the cheers stuck in our head from her practicing at home.  "Go Knights!"  She is also signed up for basketball in the winter… all 45 pounds of her!

Soccer Girl is in 6th grade - a middle schooler!  She really was not too nervous before school started, just wondering about the volume of homework in store for her.  On the first day, I took the morning off and drove her to school.  When I told her it was time to go, she said a very nervous "oh man" and looked at me with pleading eyes.  But my big girl gathered up her stuff and took a deep breath, gave me a kiss and got out of the car.  She walked with her head high into the school.

She has adjusted very well.  I think the biggest adjustment has been the social activity… all the who likes who, who is mad at who now stuff.  She has stayed away from it, but seems to like to be in the know.  Luckily she will tell me who likes her, what so and so did or said.  I pray that communication continues as the years pass.

So overall the start of the school year has been good.  Just busy.  I have an hour with Little Man before Lizard gets home, then an hour with the two of them before Soccer Girl arrives.  Then typically we need to be at some activity within the next hour.  It makes for very hectic weeks.  Lots of quick dinners and not much down time.  Our little family needs down time so we are trying to work that in and say no when we need to to get it.  Like the other night, I had plans to go out to dinner with two good friends.  It was a rough day - everyone yelling and fighting - so I bowed out of the dinner at the last minute and stayed with my family.  It was the right thing to do.