For the record, I want it known that I really really dislike this business of death. Don't get me wrong, I know we all will die sooner than later and that is a simple fact of life. No, the part of death that I hate is being left behind to live with grief and loss in all its forms. But that is also part of this thing called 'life'. The pragmatist in me says "yeah yeah - grow up, deal with it..." but the little girl in me cries out that I miss my mom and my dad - every day.
Still, I've learned a few things over the years and one of those things (perhaps the most important) is the business of letting go.
September 2007 I packed up my apartment in St Paul MN, loaded some things, my 2 old cats and my best friend into my 98 Honda Accord and drove across the country to come home where my parents lived so I could help out. Dad had been diagnosed with Parkinson's and mom had suffered a case of Temporal Arteritis. They were both doing well, but they were needing help around the house and would probably need more as time went on. I was in a place in life where I could pick up and move back home. It's a decision I've never regretted.
I've learned so very much about myself, aging, my parents, dementia and the health care system among many things, but nothing as much as when I waited at their bedside when they both lay dying a little less than 5 years apart.
The staff at Regent Court will tell you that I was in denial about my mom's dementia. I knew I was in denial and that she wasn't going to get better. But somehow I thought each setback was just that - a setback and we could help her feel better by doing this or that. I even told them many times "I know I'm in total denial here, but just help me out this once okay?" Letting go of my mom (and my dad 5 years before) was just never an option for me. As bad as things got, I knew if I did this, or maybe if I did 'that', somehow she would feel better and last a little longer.
Anyone who has been a caregiver probably understands this a little bit.
It wasn't until my mom was lying in her bed those last few days that I finally learned how to let her go.
I didn't think she would make it through the weekend, but by Sunday she was doing better enough that I began to hope maybe this was just a blip and she'd snap out of it.
Monday she slept most of the time but woke up now and then. Monday night she started getting very agitated and it didn't look pleasant. Her arms flailed wildly upwards toward the ceiling and her hands were reaching for something. I couldn't tell if she was trying to grab or push whatever it was away from her. Either way, it kind of scared me and I didn't know what to do. I even tried to pray into her ear thinking maybe that would help calm her. But I couldn't remember any of the prayers I learned as a kid in the catholic church.
So I called my brother who is a hospital chaplain (and former priest) and asked if he would pray with mom while I held the phone up to her ear. After I explained how agitated she'd become he told me about Thomas Merton telling about his mother as she lay dying. Merton's mother had been deeply spiritual her whole life, but when she lay dying it seemed that she was very scared and had to work something about before she could let go and be at peace.
The description sounded like mom - in fact I remembered many times over the past several months when she would cry out in pain "where is God?" almost like she felt abandoned.
I put the phone to mom's ear and listened as he prayed with her and I remember that she did calm down some, but not completely. At that point, the Danni the med aide came in and told me very calmly that "Jo, this is very common among people who are dying. It almost seems as if she has something to work out". Charity, another caregiver, also checked in with us and after seeing mom she told me that she'd seen this many times with people as they were dying. My mother wasn't in pain and there was nothing I could do.
It was at that point I think that I was finally was able to let go of my mother. This was her journey and not one I could help her with. Now was her time to make her peace. I couldn't walk that path with her.
This wasn't my journey but hers alone. When I went home that night I finally felt some peace along with the grief - but I knew she would okay. My sleep was attainable that night.
The next day was Tuesday and mom slept quietly the whole day, not waking once. AngelMaryBeth from hospice came that night to clean mom and commented on how her face had changed and how peaceful she looked now. It was true. She held a small wooden cross in each hand as she laid there.
My brother and his wife came by around 9 and so I left so they could be with her, and play their Christian music and pray. If I stayed they would visit with me and I wanted them to focus on mom.
I got the call at 12:30 a.m. November 18, that 10 minutes after Bob and Shellie left, she let go and passed away. Some calls you don't forget right?
It didn't take me long to drive back there as I'd been sleeping in my recliner fully dressed. By then the staff had cleaned her and she lay peacefully in her bed. Mom was gone.
It took a while for the hospice nurse to come and pronounce the death and call the mortuary to come get her body. I stayed there because well, I just didn't want her to be alone.
The men from the funeral home came and took her body, my siblings had been called, and I had to go home - yet all I could do was sit in a chair and weep. It was surreal.
By then it was around 4 am and the night was clear and cold when I went out to my car. I stood at the back of my car and looked up at the stars to just breathe for a bit.
At that moment I had this strong sense that mom was up there. I knew she was in the stars - and she was there with dad. They were finally together, whole again and dancing away as they had always loved to do. I don't believe in heaven or hell (okay, maybe this current political climate is a kind of hell) so I didn't think of mom and dad in heaven. But I believe they are in the stars, and now I can look up at the stars and say hello to mom.
“You - you alone will have the stars as no one else has them...In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night...You - only you - will have stars that can laugh.”
― Antoine de Saint-Exupéry, The little Prince
I heard once that all the atoms in the universe have been swirling around everywhere and are in everything. So the atoms that make up my body have been part of the galaxies forever in one place or another as they move in time and space. They are in the sky, air, the earth, water, plants, clouds, trees, bugs, rain and each of us. Which means we are all connected. I can't explain it in my own writing but this site does a good job of it for me.
Now when I look up at the sky, I know mom and dad are there together - dancing in the stars.
There is a line from the Little Prince "Only you will have the stars like no one else..."
I started writing this in March of 2017 and today is October 3, 2017. There are photos of my parents all around my house and so I'm always looking at them. I have videos on my phone of mom talking and telling me 'important things', or singing in the midst of her deepening dementia. Still I miss her every day. But I have comfort knowing that her DNA is part of my DNA and she is part of the stars and I got to love her for 60 years.
NOTE: - Today is April 30, 2020 and I'm in week 7 of lockdown due to the COVID-19 pandemic. Somehow I never posted this, so it's a bit late. But it's still true.
Thursday, April 30, 2020
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
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.
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:
In the grand scheme of things however, I am grateful.
My gratitude covers a great deal of places in my life including the following:
- My mom is still here and I get to see and be with her every day. With her EVERY day is a gift.
- 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.
- 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:
- The Tulip fields see http://www.woodenshoe.com/
- The Iris Farm see http://www.schreinersgardens.com/
- The Peony Farm see http://peonyparadise.com/
- The Dahlia Farm! see http://www-dahlias-com.netsolads.com/
- 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.
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'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.
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.
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.
I'll write about my mother some other time. But not now.
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 |
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 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?
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.
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.
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