Tuesday, June 19, 2012

Wrapping up the story, Part Two: A new life

I am wrapping up the story of my care of my mother. This is a time of terribly mixed feelings, but thank you for sitting with me, just as things approach the end of the story.

Picking up from my last post about the trip to Albuquerque... from Part One.

We arrived at my brother's house.  I breathed deeply in relief, appreciation, apprehension.

My brother had arrived the night before with the moving truck. They unpacked her stuff and set up her room to be very cozy ... all her precious things around her, on her wall, by her bed. It was sweet and welcome. (As time progressed the last couple of days, the room become overwhelmed with other not-so-pretty stuff, like trash cans for briefs, piles of medical supplies, etc.)

The first night, she was beyond exhausted and went to bed early.  At 4AM, we all woke to hear her yelling for help... she had wet her bed quite thoroughly.  My brother, sister-in-law and myself were all rushing around, fumbling with supplies, like parents of a newborn on the first night home.  (My brother-in-law said she was just "marking her territory" - we all laughed!)  Soon they will be old pros.

We decided to get Mom a whistle to make sure she can be heard during such emergencies.  She has it on a tether around her neck, just as she used to have her call button at the home.

At one point (I think during the bedwetting incident), she referred to us as "her three lackeys".  Hmmm. Not sure I loved that.  She thinks it's quite funny, but she did that to her aides at her assisted living too, and I think she feels it's way funnier than we do.

My sister-in-law... I admit to a measure of jealousy, of turf issues, as she will now play such a key role in my mother's end-of-life journey. She will be the hero, at least that's how I felt that weekend.  Since then, we have all seen my mother's prejudice.  My sister-in-law is Hispanic, and my mother (at times) shows disrespect to her, then when my brother comes home my mother is all smiles.  So, I was wrong about the jealousy, since sadly she doesn't even get to be fully appreciated (by my mother) as the hero that she is.

I am grateful for my brother and his wife.  Especially his wife. She bears much of the brunt my mother's care, and also her worst humor. But she (my sister-in-law) tries to be positive, to be kind. Even my brother has really stepped up - and I say it that way, not because he is male but because he is... well ... my brother. I have underestimated him. He has even helped my mother with wiping after she uses the toilet.  I am impressed, and touched.

Since those early days of her care, he has called to say, "I guess it's too late to change my mind...".  I told him he could certainly find an assisted living home there, if she is too difficult.  It is his life.  It is his family.  He was tired and discouraged, after only a couple of weeks. I think it felt really good to invite her, to be that person to welcome her into his home because "it's the right thing to do", "she's family" ... but the reality is very very difficult.

As I've spent the last month back home, about 2PM I start with growing anxiety, thinking that I need to get over to my mother's, wondering how she will react if I am later than she wished, wondering how I will balance the rest of my work for the day. Then it comes to me: I am free. I can put off that mantle of responsibility.

I have continued to wrap up some final tasks. Pay the last pharmacy bill. Get a refund for the unused days at her assisted living home.  But my brother now carries the load. I am grateful. My mother is, for the most part, happy to be there, and often even appreciative. She enjoys mountain views and meals with family. She is with family.

I continue to be surprised at the persistence of life, in the face of health challenges and even my own mom's disinterest in life. She has continued even though, for some years, she has seemed so weak that I couldn't imagine her surviving this long... and yet, here she is.  (It actually almost makes me sad, when I have just had two other deaths in the last couple of weeks, one of an energetic middle aged woman, and one of a tiny infant.  But, life doesn't work that way, where merit determines life. Not yet anyway.)

So, I guess the purpose of this blog has now reached its conclusion.  The blog is entitled, "As My Mother Slowly Disappears.  My story of caring for my mother as she goes into Assisted Living - what it does to her, to me, to my siblings, to my family."  But it is no longer "my story".   It is my mother's story, my brother's story.  For me, it is finished.

Wednesday, June 6, 2012

Wrapping up the story, Part One: The Move

It has now been almost a month since I brought my mother to New Mexico to live with my brother Bob.  I made some notes at the time of things I wanted to mention here, but only now do I have the energy and perspective to wrap up this story, our story.  I think this will have to continue across several blog posts, but if you will bear with me, I promise to bring us to a conclusion.

As we neared the departure date, there was much to do. Mom's business papers - I had to prepare them and organize them to handoff to Bob.  Changing addresses, contacting businesses to update them.  Bank accounts, investment accounts.  Create legal means to give my brother the Power of Attorney.  Extensive work to arrange rental of a Portable Oxygen Concentrator (POC) to allow her to have oxygen while on the airplane ($450!).  Working with our hospice hear to transfer her to care down there.  

Then there was attending to my mother's emotional needs.  She was pretty anxious, and I found myself constantly talking her down from a panic of one kind or another. She did alright, with time, but was very worried with all the uncertainty.  She thought she might "get lost" in Bob's house. What would she eat.  Would she be welcome. And so on. 

And there was packing up her apartment. 

The day came for the trip.  Overall, it went fine, but it was utterly exhausting for both of us.  I was pushing her wheelchair, juggling her purse and her (very heavy, bulky/awkward) POC, including trying to keep the battery conserved and plugged in, when possible, and then later changing the 10 pound battery mid-flight. When she needed to use the restroom in the airport, there was a long line, then the exhausting lifting her, changing the brief, convincing her to wash her hands.  By that time the plane was loading ... and there was the struggle to get her into the plane seat.  

By the time we got to Albuquerque, I nearly burst into tears with relief to see my brother and his wife. If there was a physical "key" to my mother's care, I could hand it to them and feel the weight off my shoulders. 

To be continued...