Wednesday, March 8, 2017

Going going gone

It's been a few years since I last wrote here and much has happened. But even thought I wanted to write as a way to explore what I was feeling and thinking, I just couldn't (or wouldn't?) find the time to do it. Today I have the time and so I'll try to sort things out.

11/12/15

my mom is dying


On the morning of November 12, 2015, I got a call from Regent Court that my mom was unresponsive, and did I want them to call ER? Yes, please! Somehow I got my coat on, emailed my team leader and rushed out the door to drive to the hospital. I remember sobbing in the car while driving frantically to the hospital.
When I got to the ER and told them my mom was there they directed me back to where she was laying. When I look back to that day, I don't know how I managed to be remotely coherent. The doctor was with her and when I went into the room he told me simply that she was "actively dying" and that I should call the rest of the family. At the time he said it might be hours or probably days.

Mom was 91 years old with congestive heart failure, Alzheimer's and had been in pain for months. So this news was not unexpected - I just didn't welcome it.

What the doctor said was that by her blood tests it looked like she'd had a heart attack that morning, and another one in the hospital (which explained why she was unresponsive).
But they weren't completely sure without doing a ton of tests. He asked if we wanted the tests done to find out more, or should they call hospice. I told him "let's just take her back to her room, make her comfortable and call hospice".  It was all surreal. Even 1 year and 4 months later I still remember it as if it was last month.

There was my mom, laying on the hospital bed, all plugged into the equipment monitoring her heartbeat et al, with her eyes closed and mouth ajar. It was hard to watch. The chaplain came in and asked if I wanted him to call the priest at the hospital and I said yes of course. While he was there I went out to the lobby and called two of my brothers to let them know what was going on. My other brother contacted the rest of the family.

When I went back into the room both of the chaplains were there and mom was awake! They told me that right when they were finishing giving her the blessing (last rites) she woke up and asked them what they were doing. When the priest said that he was praying for her because she was sick, her response was only "what else is new?".  I'm not sure if that's exactly what she said but it was something like that. Mostly it was funny and we all had a laugh about her spunkiness and constant fight to be her own person - even then.

Because she was awake we had her transported back to the memory care place. By then my older brother Tom had arrived from Eugene and my other brother who lived in town was there. We got her settled comfortably in her bed and some of the caregivers came in to say hi and one of them even got her to eat a little. Whew - I was convinced that this was just a blip in the road and she wasn't going to die anytime soon. You see, at that time I still had not learned how to let her go. This was something I had yet to learn.

My brother Tom and I met with the Hospice social worker, signed all the paperwork and talked about mom and what was going to happen. "She's not dying anytime soon" was what I kept thinking to myself.

I sat with her and then went home to get things in order so I could come back and be with her. At that time she was talking a little but mostly sleeping. So I returned with my iPad and a speaker to play music in her room. I found albums of the St Louis Jesuits and put the speaker next to her head. When I asked if she could hear it she said yes and that it was nice. It was a peaceful time with her.

That afternoon one of the staff members came into the room to say the rosary for mom. She sat down next to the bed and the minute she started reciting the prayers of the rosary I began to cry in my chair on the other side of the room. It brought so many memories back from when I was a child and our family sat to say the rosary.
Amanda was the last person I thought would ever do something like pray the rosary. She is a big woman sporting a mohawk, covered with tattoos, and a gruff demeanor that I'd found intimidating. But I learned instead she is a warm, caring, prayerful and loving person - especially to my mom. That meant everything to me. Now mind you, I don't believe in any of the Christian tenets, but I was moved to tears nonetheless. And I believe mom heard those prayers and probably was comforted by them.

Driving home that night I passed by a small studio and saw people inside practicing Aikido, and in my mind, I screamed: "don't you know my mother is dying????" How could the world just keep going on while MY mother is dying??? But then I realized that this happens every day to people all over the world. We all lose someone we love at some point in time. And yet the sun will rise in the morning, the seasons will change and life goes on....

At that time I just needed to get through the next 24 hours and deal with my sorrow later. Now was the time to contact my siblings and my mom's only living brother so he could come say goodbye.

Still, I don't think that I was ready to let her go.

Friday night I still believed that this was just a blip and she'd bounce back to live longer. We were trying to giver her something for pain and put it in her mouth so maybe she could swallow it. All of a sudden mom went slack and unresponsive and stayed that way for several minutes. I can't remember now - probably 10 minutes. When she came back to I realized that it must have been another heart attack. I'm not a doctor, but from his description earlier about her heart I thought it must be something like that.  When the hospice nurse finally arrived I described to her what happened and we both knew something significant had happened.  Now that it's over a year later my memory is a little hazy, but I do remember it clearly that she went slack and unresponsive causing me to freak out.  But I still think it was her heart as she had congestive heart failure and it was as likely as not that her heart was giving out.

After that, I didn't think she would even last the weekend.

That night I met Angel MaryBeth from Hospice. She came and bathed my mother and made her comfortable. What a gift that was to me. Mary Beth cleaned her body and face with a washcloth and then combed her hair with such gentle love. She put her in a clean nightgown, rearranged her comfortably in the bed with pillows and blankets and when she was done, mom looked wonderful. I think it was then that I started to face the reality of my mom leaving.  But still I hadn't let go - but I didn't know it.

I'll write more later about the final few days I had with this woman I called mom, but she was a strongly independent woman who struggled all her life to be HER OWN PERSON. She was a musician, reader, organizer, world traveler, mother of nine, choir director, wife to Bill, sister to Eileen, Neil, and Phil. But overall, she was her own self.





Tuesday, March 3, 2015

Gratitude

Some days are brighter than others. It just is that way.
In the grand scheme of things however, I am grateful.
My gratitude covers a great deal of places in my life including the following:

  1. My mom is still here and I get to see and be with her every day. With her EVERY day is a gift.
  2. My health is good - I have arms, legs, hands, eyes, and ears that work and allow me to experience everything in this world - pleasant and unpleasant.
  3. I live in the Willamette Valley Oregon, which in my mind is a splendid place to reside and make a life. The climate is mild, the sales tax is non-existent, the pacific ocean is just 50 miles away and then during the summer I get to take my camera to:
  4. My 1998 Honda Accord with almost 193,000 miles still runs and gets me to where I need to be.


The last 4 months of unemployment have been difficult, depressing and challenging to say the least, but it has also been a time for me to take stock of myself, what I am doing with my life and what I want to do as I enter my 6 decade of life. This is a good thing for me ultimately. 

The last 7+ years coming home to be with my parents has, in retrospect been the hardest and most fulfilling decision I ever made in my whole life. Really. 

My morning mantra has been (thanks to Anne Lamott):
Help me Help me Help me

A couple of days ago, it was grey and rainy and dreary (okay so it isn't always perfect here) and as I was driving down White Oak Road I was drawn to a large space in the field to my left where the bright sun was streaming through an opening in the clouds. The trees in the middle of the field were bright and intensely lit up! I so wanted to stop and take a photo, but alas I did not have my camera in the car with me. Instead I thought of the fact that no matter how bleak and dark and dreary it seems - a bright ray of light can still shine through.

I know, I know that sounds all pollyanna-ish - but at the time it was a good reminder to me that I'm still here, getting out of bed every morning, taking each breath - and saying:
thank you thank you thank you.

Wednesday, November 12, 2014

Every day is a new day

These are the words I tell myself when thinking of my 90 year old mother who is living in a Memory Care place here in Corvallis Oregon. Each day is different as is her mood and memory.

Every time I stop to see her she cries out with relief. Some times she says to everyone around her "I haven't seen my daughter in MONTHS!" even though I'd been by the day before. Oh well. At least she knows who I am.
Some day she may not know that I am her daughter, but I hope that she will at least know that I am someone who loves her and is safe.

My mother has Alzheimers. She can barely walk due to her weight gain and fear of falling. As a result she spends her days in a wheelchair. It takes two people to assist her in and out of the chair, and much of that involves assuring her she will not fall. It is hard to watch her slowly lose so much of the self that is Elizabeth Jean.

My mother's name is Elizabeth Jean but she has changed it over the years from:
Betty Jean - when she was a young girl
Betty - in college and married to my dad
Elizabeth - changed to that when in her 60's
Liz - I can't remember when she decided she wanted to be called Liz - maybe in her early 80s?

Despite the name changes she still is the same woman - full of humor and a feisty self that never fails to let everyone around her knows she can still decide for herself thank you very much!  Even with her dementia, she still wants to make her own choices - and I applaud her - except when it comes to refusing the pills that help with her Congestive Heart failure and depression. The staff has been marvelous at figuring out how to get her medications into her in a way that she makes the decision!

My father passed away in March of 2012 in his bed with mom holding his hand. Some times she asks where he is and when I tell her that he died while she was holding his hand she always remembers with almost a sense of relief. It gives her great comfort that she was there and it was such a quiet peaceful passing. As far as I know she has not cried for him since then.

Alzheimers is a truly terrible disease - not only for what it robs the person whose brain is affected, but also the people who know and love them. We have to stand back and watch while they forget the things that happened yesterday or this morning - but not years ago. We watch as they lose their ability to complete the activities of daily living (ADLs) but what is most hard is watching them lose that important sense of self and who they knew themselves to be.
For instance my mother was a musician and worked hard all her life to be counted and respected as such. I don't think she really thought she had value other than through her music.  She used to tell me that no one cared that she was the choir director and a good musician. It made her so sad.
Now she does not even remember being a choir director.
She has forgotten those things that made her unhappy - which is good.
She has forgotten those things that made her happy - which is not so good.

I love my mom and am grateful every day that she is here so I can be with her.  The role or Caregiver is a thankless job, but I have learned so much about love, patience, kindness, humor, anger, depression, fatigue, and above all love.
stay tuned for more stories to come about the world of dementia from this one person's point of view.

Mom's 90th birthday celebration with grandson Joe - August 2014.



Sunday, April 10, 2011

Endurance

Being a caregiver is not for the feint of heart, nor for those who have a hard heart.
To be a caregiver to my parents is a lot like when I first became a parent. Before Will came home I thought that I would have a baby and just go on with my life. I had NO idea, and no one could adequately prepare me for how my life was going to change. No one knows.
It is the same with moving home to be with my parents.

I.had.no.idea.at.ALL. 

I didn't know how heartbreaking it would be to watch my dad have to be assisted to get in and out of his chair, or watch him shuffle, bent over while slowly make his way across the room or around their apartment. I didn't realize that when I see him asleep at the table that I would find myself wanting to do ANYTHING it took to wake him up so he would eat. The times that he wakes up, is alert and talking is such a relief and a joy. Never mind that half the time he can hardly put a sentence together that makes sense, and other times he is wry and funny.  He is my dad and I love him.

There are days when I think I just can't do this any more, it is too hard watching my dad slowly fade away into a shell of himself. But this is something I really don't want to miss out on. This learning how to love in a whole new way.

When we were kids growing up I was afraid of his temper and when he would lash out in frustration - but that changed and I learned how to push back when he would be mean and thoughtless. What I learned was that if I challenged him and said I didn't like the way he talked to me or my sons - he always backed down and apologized. 

So we all grow up - no matter how old we become.

September 2008
One of the things I feel sad about is that my sons are not getting to spend time with dad before he is gone. Then again, they get to remember Grandad the way he was when they could sit and talk about stuff like the marines or current events, or how great the Huckabee show is on Sunday night TV.

When I think of my dad now, it is of him sleeping in his chair with his face in his hand, or shuffling down the hall with his walker.

I've seen the faces of some of the other residents when I sit with dad or help him get around. They usually give me smiles of encouragement. They can see his struggle and mine, as I try to help him keep his dignity as long as possible.

This is a long haul ride, watching him slowly lose his balance and his memory, and I wrote earlier, it take heart to keep supporting him. My brother Gale helps so much with keeping Dad's dignity intact. He comes to shave dad almost every day and helps him get up and walking about. I think that Dad will eventually forget who the rest of us are, but he will remember Gale, and Gale's tenderness and loyalty far longer than anyone else. Lucky Gale.

At some point the dementia/Alzheimers will erase his memory completely, but for now, he is still grateful for every day and every person who cares for him. I'm trying to learn from him the same kind of thankfulness.
And so I'm the lucky one now.

2009

I'll write about my mother some other time. But not now.

Friday, April 8, 2011

2011 a new year

The last time I posted was a year ago. So much happened in 2010 that I don't know exactly where to start, but I will attempt to just list things, then maybe I'll be better about this year. When I started this blog I thought it would be a way to keep my family members up to date on my parents. So much for that idea. :-)

2010: Spent a GREAT amount of money on caregivers coming to the house to be with mom and dad while I was at work.  It was expensive, but worth it. However I still had to get over my shock at having to help my dad in the bathroom and shower. Actually we both had to get over our unease. And we did. Dad is a trooper.
Then my wonderful brother announced that he was leaving the priesthood after 35 years. WOW. The following Sunday I took my parents to Portland for his last mass. It was a beautiful, moving, sad, bittersweet, happy day for all. My dad loved every minute of it. End of April saw us all moving them into the Corvallis Caring Place (Assisted Living) where they are now.
Dad has been up and down with our struggle to keep him hydrated.  He was in and out of the hospital last summer and even spent 5 weeks at a rehab place. That was a mistake. Dehydration is our biggest challenge with him. But when he gets enough fluids, he has more energy and is awake and will walk MUCH better.  Why can't the doctors see this? Why can't I see it? I was so afraid he'd had a stroke, when he just needed to be fed and watered. sigh.
Mom has struggled with the Caring Place. I don't think it is quite what she expected. Her memory went downhill also as has her spirits. They get pretty good care there, but there is nothing for her bitterness and disappointment with life.
When mom and dad moved out I stayed here in the house and spent the rest of the year trying to make it my home, but still keep much of mom and dad's presence. So far I think I've succeeded.
Thanks to my dear friend Cheryl, I've learned how to lay laminate flooring and now two bedrooms that were filled with stained carpet are now clean floors.
Tom and Tia were married in November and it was the first time in years that all my brothers and sisters were together.

My brother Bruce passed away 3 years ago, but his widow, my sister in law was with us. I'm so very glad she came! 
The Farley bunch November 2010

The Farley bunch plus!

The Farley bunch with new addition (and Charlie!)

The year ended with me flat on the couch sick for a whole week. But with that I got to watch the complete first season of Modern Family and Glee.
In the middle of all of this, my youngest son Jake graduated from St. Olaf (I got to be there by webcast) and my oldest son Will spent the summer in England. I miss them both and am so grateful that they are my sons.
I started working mostly from home in December and found it is okay. A little isolating, but I look out the back window at a bird feeder and watched winter go by.
That about sums up 2010. Lots of changes both good and sad, but always always interesting...
Some kind of life eh?

Friday, January 15, 2010

breaking buildings and breaking hearts...

I'm on a self-prescribed retreat at the Oregon coast. I am in heaven.
I left work early and got here by 4pm. The weather is very stormy and grey. ahhh the Oregon coast in January.
I'm staying at a hotel located directly across the street from the beach house my aunt owned for so many years, until she passed away and it somehow got away from the family.
I went for a short walk on the beach when I got here. The weather was grey and rainy with rain blowing in my face. The beach still held so many memories of the summer I spent here when I was 13 years old.
I don't have to keep to a schedule, or talk to anyone if I prefer, except I'm watching the news on CNN and MSNBC to see all coverage on the devasting earthquake in Haiti. I'm grateful to be here in the quiet and on my own, yet my heart breaks for the people in Haiti.
I hope to spend the weekend re-acquainting myself with my Canon 40D.  It has been so long since I even picked it up that I can hardly remember how to use it.
I need to get back to my art. still I took my point and shoot out on the beach and played around. The place where I'm staying is on the left.

Saturday, January 2, 2010

Preparing for a new year

And new challenges.
2009 was filled with:
Uterine cancer - full abdominal hysterectomy
Chron's disease resurfacing
Tech writing job becoming more hectic and challenging
Dad falling and cracking some ribs - found out it was a bad UTI. His Parkinson's is slowly eroding his physical abilities (loss of balance, incontinence, falling) and his mental capabilites (forgets where he is, can't find the kitchen, forgets to eat with utensils, freaks out when he can't see mom for 10 minutes, forgets where the bedroom is, can't pee into the toilet correctly) and so on.....
Mom struggling with depression and control issues - diagnosed with Congestive heart failure in October and has given up on life in some ways. Had to take her off her antidepressant due to the heart meds, and now she can't remember anything and is VERY depressed. Her short term memory is shorter than ever.
She obsesses about stuff and moves REALLY slow.
But I still love them - dad has the most wonderful sense of humor still, and mom is still very interested in the world and wants to know what is going on.
And they both tell me how grateful they are that I'm here. It helps when they say 'thank you' - then I know they are still here.
Our two caregivers have saved my life and I'm sooo grateful to them.
tomorrow I list out my resolutions - maybe if they are on paper (okay, the web) I will be forced to follow them, or at least try. So 2010 - here I/we come!
A few of my favorite photos from 2009.