Monday, June 28, 2010

Accepting Impermanence

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I almost titled this post "embracing impermanence".  But, I quickly realized I'm just not there yet.  Accepting it is the best I can do.  Friday we took a trip to Springfield for Ty's family reunion.  It was just over a year ago that we were there visiting and realized that it was time that we had to put Pops in a place where he could be taken care of.  The Alzheimer's had progressed to the point where he had completely broken with reality and was becoming a danger to himself and others.  Thank G-d, we found Kenneth and Joyce who have been angels ministering to him and to Ty's family.  In spite of the fact that he can no longer walk on his own, feed himself and rarely speaks, Joyce has said that she would like to continue to take care of him as long as possible and has even volunteered to lower her fee so that he can stay there longer.  We were getting concerned that he was too much for her to handle.  But, she says it's just the opposite. She says that since he's no longer mobile and sleeps most of the time, she can handle him.
I've only been to Springfield once since Pops hasn't been living there.  After 23 years of visiting the house Ty grew up in, it's just weird to go there and have him not be there.  I look around at his stuff, which is less than it was as some of his tools, etc. that he'll never use again have been sold.  The ashtrays are gone.  The smell of his pipe is gone.  Alzheimer's is such a cruel disease.  In so many ways, he is gone.  But, his body lingers on.  
Margaret is probably doing as well as can be expected under the circumstances.  She has lost/is losing her companion of over 50 years. I don't know which way to put it.  Past tense- she has lost him.  Or present tense- she is losing him.  People tell her to move on.  To go on with her life.  But, how does she do that knowing that he' still alive? They were one of those old fashioned couples. They were two halves of a whole, each living lives that would have not been complete without the other. They were completely codependent.  That's a bad word in today's culture where we're supposed to be independent.  Or maybe even interdependent.  But, they took care of each other.  Each specialized in his or her work and there wasn't a whole lot of overlap.  We often talked of how lost her father would be without her mother since he had no clue how to do laundry, cook or do any of the tasks she did.  I don't think I ever saw the man even make a sandwich for himself.  When we got together for meals and the buffet was laid out, he'd sit in his chair and place an order for what food he wanted.  But, there was no resentment from her.  She was glad to serve him.  They served each other.  Now that that is gone, she struggles to fill in the gaping holes left by his absence.  And, she feels guilt knowing that her role in taking care of him (she used to even iron his sock) is being fulfilled by someone else.  It's not just chores though.  They were best friends.  Every evening, weather permitting, they'd pull their chairs out into the driveway and just sit and talk as the sun set.  They'd watch the ever-increasing number of cars drive by on Lincoln Park Road and wave.  When they moved to Lincoln Park Road, it was way out.  Now, every time we go to visit there are more and more cars on the road.  More and more houses.  Nothing stays the same.
Margaret is talking about selling the house next spring and moving into an apartment.  How weird that must be to hear for Ty and her family.  It's weird for me.  As we were driving back to her house from the reunion Saturday, I looked around at the landmarks we've come to know.  Fred's (a kind of general store), the IGA.  How many more times would we drive past these places?  I told the girls to try to remember what things are like there because Springfield reminds me of Gary, WV where my mother grew up.  I used to visit there as a child and have fond memories of being able to walk anywhere in town from either my grandmother's house or Aunt Dorothy's.  But, when my Aunt Dorothy passed away (the only sibling of my mother who stayed in Gary), I never went back to Gary again. 
To make things even more difficult for Margaret, she and Pops really never discussed the Alzheimer's or what was happening to them.  Alzheimer's doesn't afflict an individual, it afflicts a family.  She is just as impacted by the disease as he is.  In some ways, more.  The family found out about his Alzheimer's through his doctor.  He had been told by the doctor.  But, everyone was scared of his reaction to finding out the doctor had told us.  So, for many months, we knew he had Alzheimer's and he knew he had Alzheimer's.  But, he didn't know we knew.  When it finally got to the point where we had to confront him, the rational man that we all had known was gone.  His doctor (who was also Margaret's doctor) never discussed Alzheimer's in any depth.  In fact the one time he mentioned it to her, he used the phrase "a touch of Alzheimer's" which is the only phrase Ty's father ever used when he mentioned the disease.  His sister who lay in a comatose state had Alzheimer's.  He only had a "touch".  I think he probably knew what was going to happen to him.  But, Margaret never put it together.  We tried to get counseling for her from the Alzheimer's Association.  But, she was afraid he would find out and didn't really take advantage of it.  We sent stuff for her to read. But, she doesn't learn that way.  I asked her if anyone, over the course of the last couple of years had sat down with her and told her what to expect, if Pops had ever had that talk with her and she said "No.  No one.".  The first real talk she had about the prognosis was just several weeks ago with her (and his) new doctor.  Every time she would go to a doctor's visit, she'd ask- hopefully "Do you think I'll ever be able to bring him home again?"  What they probably thought she meant by that was "Will I be able to bring him home and nurse him?" But, what she was really asking was "Is there a chance he'll recover?"  Finally, the new doctor sat down beside her, took her by the hand and dashed her hopes.
As I look at her I realize she is not a woman of science.  She's a woman of faith.  She doesn't understand the progression of the disease, how it's eating away at his brain which is where his memories are held, his speech is formed, his power of reasoning comes from.  She doesn't understand that once that brain tissue has been destroyed it won't ever come back.  She's been praying daily for a miracle. She believes that God can do anything, including bring her Felton back to her.  In spite of everyone telling her, gently, that is not going to happen, I still think she holds out some hope.
One bright spot of the weekend. Ty and Michelle (her sister) went to see Pops on Friday.  As it's been described to me, he rarely speaks in complete sentences anymore.  He sometimes will blurt out something no one can understand and he randomly says "Margaret" or Shell (Ty's sister).  But, on Friday, he recognized Ty and Shell as his daughters and even showed signs of his old feisty nature. Ty kept feeling his body because he's completely emaciated and she wanted to tell for herself just how thin he is.  She also was rubbing his head.  He blurted out "Stop rubbing my damn head.  You've done it three times already."  Ty burst out laughing, grateful for a glimpse of her Dad back.
As we left Springfield, I wondered just how many more trips we'd make back there.  Margaret plans to move to an apartment in town.  So, I'm sure we'll continue to visit her.  But, it's sad to know that I have far less trips in front of me to the home on Lincoln Park Road than I have trips behind me.
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5 comments:

Mike aka MonolithTMA said...

"Alzheimer's is such a cruel disease. In so many ways, he is gone. But, his body lingers on."

That's what makes it so difficult. I've seen friends struggle with this and we've had distant relatives afflicted with it. I have some good friends who's father has Frontal Lobe Dementia which in the mid stages make him act like a small child with no inhibitions and later little to no communication at all. They currently have him in a care facility. I've said multiple times it would have almost been easier if he had died, at least then they wouldn't look at him, looking perfectly normal, but just not there at all mentally.

I'm sorry you and your family are going through this. I truly hope there will be a cure some day for this terrible condition.

brian said...

Thanks, Mike.

Yes, there are some things worse than death. People are telling my mother-in-law to move on with her life. But, how is she supposed to do that knowing her husband is still alive and that another has taken her role of taking care of him?

Mike aka MonolithTMA said...

Yes, it's just heartbreaking.

Anonymous said...

I lost my gramma to Alzheimer's; Brian, I was so moved by your words in this post. You wrote this beautifully.

My heart goes out to your family; keeping you all in my thoughts and prayers, especially your mom in law. --rhonda

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