I don't know if I can bring myself to share any more about my mom's journey through Alzheimer's. It's come to a point now where my stomach twists up tight, my eyes brim with tears and I feel ill whenever I stop to think about how she is suffering now. I visited my parents briefly this week; took my dad some ribs and a cinnamon roll. I met his new helper,Ida. She's great. Mom was sitting in her wheelchair at the kitchen table. We held hands for awhile, and I rubbed her shoulders. My dad asks me to buy her another dime store bracelet because the old one is no longer shiny.
Mom still has brief moments of sweetness and charm. When she smiles or gives a kiss. Dad says she's having the seizures more often now. The last time it happened she was sitting on the commode. He said when it occures, he just rubs her head and says prayers out loud. Its really awful times right now. So much worse than I tought it would be. I'm trying to be positive; to keep a normal disposition, but its hard. My time is spent mostly at work or alseep. I try to attend workout classes, to keep the stress at bay. But, nothing really gives relief. I think about selling my house,grabbing my backpack and just taking off. But,then I think, what if she dies? Then how will I feel? I'm really confused about what to do or how to live my life right now. Should I make plans? Could I run away, travel, dodge everything? Would I have regrets? I might have them if I stay.
I think I'm going to end this blog. Because I can't think of anything more to tell you about this disease and the tricks we found to help us adapt. I think Alzheimer's is the victor. There is nothing more to say.
My only advice now is to pray. Pray all the time. Honor her journey. Help her find her creator, the white light, the sweet smell of home.
I'll be writing about her on a new blog, "Patricia Gottsch". That's where I will tell the beautiful stories of how great she was. My mom, the Saint, Mrs. Patricia Gottsch. My dad's only love. Our family's mother and queen. See her story at http://patriciagottsch.blogspot.com/ - This is how I want her to be remembered.
Saturday, January 23, 2010
Monday, January 18, 2010
Still Showing Up
I went back to see my mom and dad.
We said the rosary around her bed in the evening.
My brother and his wife and their 5 boys came to the house to say the rosary with us.
Cindy, my sister in law gave us some instruction, told us to find a candle and brought a bag of rosaries to pass out amongst us. My three nephews, Kyle, Cody and Travis knelt by the bed with us and each said a decad of the rosary.
I think it brought us all a little peace.
My mom said some of the prayers along with us.
Other times she was talking to herself, or looking into the distance and pointing or talking to people she thinks she sees. It was fine.
I can visit my mom now, as long as my dad is there with me. I don't want him to leave me alone with her because I am afraid she will have another seizure.
He said she's still having them, but he's getting used to it.
How horrible to go through that alone.
There seems to be little or no relief for him or my mother.
All we can really do now is pray.
We said the rosary around her bed in the evening.
My brother and his wife and their 5 boys came to the house to say the rosary with us.
Cindy, my sister in law gave us some instruction, told us to find a candle and brought a bag of rosaries to pass out amongst us. My three nephews, Kyle, Cody and Travis knelt by the bed with us and each said a decad of the rosary.
I think it brought us all a little peace.
My mom said some of the prayers along with us.
Other times she was talking to herself, or looking into the distance and pointing or talking to people she thinks she sees. It was fine.
I can visit my mom now, as long as my dad is there with me. I don't want him to leave me alone with her because I am afraid she will have another seizure.
He said she's still having them, but he's getting used to it.
How horrible to go through that alone.
There seems to be little or no relief for him or my mother.
All we can really do now is pray.
Thursday, January 7, 2010
Going Back Again
After being so frightened from the exorcist-like seizures, I've decided I must go back.
I had a small bout of shingles, slept a lot, talked to friends and prayed with my spiritual friends. The outcome of this is - I must go back to my parents house.
Of course I do. They are my parents, and I can't just leave them to fight this disease alone.
My Catholic friends told me the devil is trying to scare me away. So, when they put it like that, I'm not going to let him take over my family. But I am scared. I don't feel comfortable seeing what is happening with her now - with these strange seizures, and grunts.
They really frighten me.
My sister inlaw called last night and told me just to call out "Jesus, Jesus" when the seizure occurs, or to start saying the Hail Mary prayer until the seizure passes. This was excellent advice, because I've been feeling so helpless. Though I think praying gives me the tools to overcome the moment, and not feel so helpless or alone.
It was a great piece of advice. Like, when you call 911 in an emergency, but, maybe you should call for Jesus first.
I had a small bout of shingles, slept a lot, talked to friends and prayed with my spiritual friends. The outcome of this is - I must go back to my parents house.
Of course I do. They are my parents, and I can't just leave them to fight this disease alone.
My Catholic friends told me the devil is trying to scare me away. So, when they put it like that, I'm not going to let him take over my family. But I am scared. I don't feel comfortable seeing what is happening with her now - with these strange seizures, and grunts.
They really frighten me.
My sister inlaw called last night and told me just to call out "Jesus, Jesus" when the seizure occurs, or to start saying the Hail Mary prayer until the seizure passes. This was excellent advice, because I've been feeling so helpless. Though I think praying gives me the tools to overcome the moment, and not feel so helpless or alone.
It was a great piece of advice. Like, when you call 911 in an emergency, but, maybe you should call for Jesus first.
Tuesday, January 5, 2010
Practicing Abundance
Try saying, “I have the privilege of”. . . . before everything you say that seems hard.
Like, “I have the privilege of doing 5 loads of laundry today”.
Or, “I have the privilege of having a major migraine today – but I can feel and so I know I’m alive”.
Or, “I have the privilege of being stuck in traffic today, in a car, with music, and I am alive and in the world”.
Or, “I have the privilege of working with difficult people today – whom, by their actions – show me how I am different”.
Or, “I have the privilege of this job where I work for $12 per hour.”
Or, “I have the privilege of experiencing new challenges at my job today”, because this is shaping and changing me.
Or, “I have the privilege of caring for my parents who are still alive and with me here on earth”.
Like, “I have the privilege of doing 5 loads of laundry today”.
Or, “I have the privilege of having a major migraine today – but I can feel and so I know I’m alive”.
Or, “I have the privilege of being stuck in traffic today, in a car, with music, and I am alive and in the world”.
Or, “I have the privilege of working with difficult people today – whom, by their actions – show me how I am different”.
Or, “I have the privilege of this job where I work for $12 per hour.”
Or, “I have the privilege of experiencing new challenges at my job today”, because this is shaping and changing me.
Or, “I have the privilege of caring for my parents who are still alive and with me here on earth”.
Sunday, December 27, 2009
Who is Patricia Gottsch (before Alzheimer's)
I've arrived at a new place today after venting so much misery about this disease, to where I'd rather talk about who my mom was before she took ill. I think it's a much better story. She has not passed away. She is still here on earth, living with my dad, but only her essence remains, which is innocence and joy. She is 71 years old.
My mom, Patricia Ann Gottsch, maiden name,Dodt, was the 4th child in a Catholic family of 10. There were six girls and four boys. Her father was in real estate, had a restaurant on the beach in Santa Cruz, was a staunch Catholic who invited the priest over to supper on Sundays. I only know she was a gift wrap girl at J.C. Penny Company and that her dad taught her to save her money. When my dad met her at a dance in Santa Cruz, she was 20. They married when she was 21. Honeymooned in Lake Tahoe. My dad says she cried all the way there because she didn't want to leave her family. My dad was 23. They were so young.
She became a mother and a homemaker. She never asked for anything for herself. Content with little niceties, flowers, birds, children. To me she was like Doris Day. Naive, sweet, innocent. She prepared 3 square meals every day, cleaned house, did laundry like a Gap employee who folded clothes crisp enough to display in a store, rolled her blonde hair once a week, wore only lipstick, and idolized my father.
She sang the French song, "Ce sera sera, whatever will be, will be", to us. She listened to Roger Miller albums. She woke me up when Elvis Presley or Tom Jones were on the Ed Sullivan Show.
She rose at 5:00am every morning to make my dad a hot breakfast of bacon, eggs and coffee. Then made lunches for all us kids, customized to our taste for mayonaise, mustard, balony or cheese only sandwiches. She scrolled our names on neatly folded brown paper bags in beautiful red cursive with a red ElMarco felt pen and lined them on the top of the bookshelf by the door.
We wore neatly cleaned pressed uniforms and went to Catholic school. She made life beautiful. She believed in love,God, and always stood by the underdogs.
My mom, Patricia Ann Gottsch, maiden name,Dodt, was the 4th child in a Catholic family of 10. There were six girls and four boys. Her father was in real estate, had a restaurant on the beach in Santa Cruz, was a staunch Catholic who invited the priest over to supper on Sundays. I only know she was a gift wrap girl at J.C. Penny Company and that her dad taught her to save her money. When my dad met her at a dance in Santa Cruz, she was 20. They married when she was 21. Honeymooned in Lake Tahoe. My dad says she cried all the way there because she didn't want to leave her family. My dad was 23. They were so young.
She became a mother and a homemaker. She never asked for anything for herself. Content with little niceties, flowers, birds, children. To me she was like Doris Day. Naive, sweet, innocent. She prepared 3 square meals every day, cleaned house, did laundry like a Gap employee who folded clothes crisp enough to display in a store, rolled her blonde hair once a week, wore only lipstick, and idolized my father.
She sang the French song, "Ce sera sera, whatever will be, will be", to us. She listened to Roger Miller albums. She woke me up when Elvis Presley or Tom Jones were on the Ed Sullivan Show.
She rose at 5:00am every morning to make my dad a hot breakfast of bacon, eggs and coffee. Then made lunches for all us kids, customized to our taste for mayonaise, mustard, balony or cheese only sandwiches. She scrolled our names on neatly folded brown paper bags in beautiful red cursive with a red ElMarco felt pen and lined them on the top of the bookshelf by the door.
We wore neatly cleaned pressed uniforms and went to Catholic school. She made life beautiful. She believed in love,God, and always stood by the underdogs.
Saturday, December 26, 2009
Quitters
I'm not a quitter. Never have been. In fact, I'm the one who usually stays too long in relationships. But I suppose I look like one now. My friends tell me I've done enough. Taking care of them for the past 10 years, spending every weekend and holiday with them. Sacrificing my vacation time so my dad can get away for a week to go hunting.
But, now I think thats the reason my dad can't make a decision regarding my mom's care. Because I'm here. Enabling the situation. Making everything nice. Well, at least it might be part of the reason. You know how it is, you caregivers. You're dedicated. You bring your cheerful attitudes, tons of groceries, homeopathic remedies, loyalty and spirit every day, every weekend, whenever. I actually quit my job and spent 8 months as their live-in caregiver, domestic helper, cheerleader, chef, advisor, babysitter, you name it. Some say this is co-dependency, but I don't think so. And I don't want to discount myself or other caregivers in this way. That's B.S. It's love. Pure unconditional love.
And I love my parents and could clearly see they needed help. And why not. They're fine people, nice, easy to please. Actually, this whole thing is a crock. My parents don't deserve this. They lived their lives well, healthfully, conservatively, selflessly. They went to church. They've been married for 51 years, raised 5 children, worked hard to care for the family and each other. But after last weekend, I'm different, changed, afraid.
Ten years ago I took my dad to see an elder attorney to explain the strategic division of finances in order to afford better end-of-life care alternatives. I read everything on Alzheimer's, met with case workers, researched care facilities, interviewed care providers, found them a CMA to come to the house, offered much information and coaching from the sidelines. But, he hasn't made a move. He turns away outside help. Has not changed his financial status. Look, I know he's depressed, And he's angy, very angry, critical of everyone, the news, the street lights, the overweight woman at the grocery store, me, and stuff I probably don't even know about. He's careful with his money. Doesn't want to pay top dollar for care. Thinks it's all a racket.
So, needless to say, its kind of hard to be around him. If your coffee cake doesn't turn our perfect, you hear about it. Understand the landscape?
Last weekend, after surfing through those gigantic waves of awful fits, seizures, mini stokes, demonic invasions, whatever they were, (with my mom), my heart broke. It snapped, like, tore apart, stopped feeling, went numb. In my head some kind of voice was saying, "that's it, no more, we're done, your stupid, why are you here, where's the airport, buy me a ticket, let's go, is this real, sell your house, leave everything, New Mexico sounds good, sunny, warm, artist working there, time to leave town, is dad going to have a stroke, where's my siblings, why am I alone, mom doesn't deserve this, God are you there?, etc, etc, etc. Then, I saw the advanced directive. The document I signed 7 years ago at my dad's invitation to be responsible for their end-of-life medical decisions. He showed me the documents, explained what they meant and told me I would share the responsibility with my older brother Joe. I understood. I signed my name. Later the documents were witnessed and notarized by the neighbor down the street. But, last weekend when my dad pulled these documents together for the hospital workers, I took a minute to review them. My signature was not there. I asked my dad what happened. He said he was too stressed out to discuss it and that he couldn't remember what happened 20 years ago. It was 7 years. I was mad, confused, hurt, tricked? Whatever. That's part of the reason why I am done. I don't mind not being chosen. In fact, its a gift of freedom, not to be appointed as head. But I didn't like the feeling that I was tricked. You see, I was there that summer, helping them move. No siblings were around for the job. Maybe he felt obligated to include me at the time. I don't know. And I don't care. I'm telling you it's freedom not to be appointed.
I hope those of you who are out there doing the work, making life bearable for someone you love, digging deep into your souls on behalf of someone else - will understand why I'm quitting, at least for now. I need to take stock, look inside, erase the experience, maybe make some new choices.
Obviously, I was there for my mom. Of course, she deserves everything. The best. But I truly felt she died, twice, last weekend. Once in my arms when she slumped over and stopped breathing after the seizure. So, I guess what I'm feeling is a kind of shock, with a side order of confusion. Can you understand?
But, now I think thats the reason my dad can't make a decision regarding my mom's care. Because I'm here. Enabling the situation. Making everything nice. Well, at least it might be part of the reason. You know how it is, you caregivers. You're dedicated. You bring your cheerful attitudes, tons of groceries, homeopathic remedies, loyalty and spirit every day, every weekend, whenever. I actually quit my job and spent 8 months as their live-in caregiver, domestic helper, cheerleader, chef, advisor, babysitter, you name it. Some say this is co-dependency, but I don't think so. And I don't want to discount myself or other caregivers in this way. That's B.S. It's love. Pure unconditional love.
And I love my parents and could clearly see they needed help. And why not. They're fine people, nice, easy to please. Actually, this whole thing is a crock. My parents don't deserve this. They lived their lives well, healthfully, conservatively, selflessly. They went to church. They've been married for 51 years, raised 5 children, worked hard to care for the family and each other. But after last weekend, I'm different, changed, afraid.
Ten years ago I took my dad to see an elder attorney to explain the strategic division of finances in order to afford better end-of-life care alternatives. I read everything on Alzheimer's, met with case workers, researched care facilities, interviewed care providers, found them a CMA to come to the house, offered much information and coaching from the sidelines. But, he hasn't made a move. He turns away outside help. Has not changed his financial status. Look, I know he's depressed, And he's angy, very angry, critical of everyone, the news, the street lights, the overweight woman at the grocery store, me, and stuff I probably don't even know about. He's careful with his money. Doesn't want to pay top dollar for care. Thinks it's all a racket.
So, needless to say, its kind of hard to be around him. If your coffee cake doesn't turn our perfect, you hear about it. Understand the landscape?
Last weekend, after surfing through those gigantic waves of awful fits, seizures, mini stokes, demonic invasions, whatever they were, (with my mom), my heart broke. It snapped, like, tore apart, stopped feeling, went numb. In my head some kind of voice was saying, "that's it, no more, we're done, your stupid, why are you here, where's the airport, buy me a ticket, let's go, is this real, sell your house, leave everything, New Mexico sounds good, sunny, warm, artist working there, time to leave town, is dad going to have a stroke, where's my siblings, why am I alone, mom doesn't deserve this, God are you there?, etc, etc, etc. Then, I saw the advanced directive. The document I signed 7 years ago at my dad's invitation to be responsible for their end-of-life medical decisions. He showed me the documents, explained what they meant and told me I would share the responsibility with my older brother Joe. I understood. I signed my name. Later the documents were witnessed and notarized by the neighbor down the street. But, last weekend when my dad pulled these documents together for the hospital workers, I took a minute to review them. My signature was not there. I asked my dad what happened. He said he was too stressed out to discuss it and that he couldn't remember what happened 20 years ago. It was 7 years. I was mad, confused, hurt, tricked? Whatever. That's part of the reason why I am done. I don't mind not being chosen. In fact, its a gift of freedom, not to be appointed as head. But I didn't like the feeling that I was tricked. You see, I was there that summer, helping them move. No siblings were around for the job. Maybe he felt obligated to include me at the time. I don't know. And I don't care. I'm telling you it's freedom not to be appointed.
I hope those of you who are out there doing the work, making life bearable for someone you love, digging deep into your souls on behalf of someone else - will understand why I'm quitting, at least for now. I need to take stock, look inside, erase the experience, maybe make some new choices.
Obviously, I was there for my mom. Of course, she deserves everything. The best. But I truly felt she died, twice, last weekend. Once in my arms when she slumped over and stopped breathing after the seizure. So, I guess what I'm feeling is a kind of shock, with a side order of confusion. Can you understand?
Friday, December 25, 2009
Another Year
Its December 25th, 2009. I'm at the beach house alone, hiding, trying to regain my strength. Last weekend my mom had seizures. They frightened me so badly I don't know if I can go back to help them anymore.
We called 911 when the first one happened. Then we brought her back home because the doctors couldn't tell us anything. Plus we only wanted "comfort care". The second one was worse, so we drove her to emergency ourselves. They kept her a day or two, adjusted her meds, said she had a full blown urinary tract infection and that she was a 1/2 point short of qualifying for Hospice. The criteria says a patient should not be able to say 6 words in a row, and miraculously she did. After nothing but chanting for the past two months. So my dad took her back home. I was against it. But it wasn't my decision.
Something inside of me broke. Like a huge crack in a frozen pond, or a tear in the blacktop.
I'm too frightened to see her again. The seizures were so bizzare and primal and I can't seem to shake them from my mind. I've held people before who were having an epileptic seizure, but this was so much worse. My dad is exhausted. I am too. We didn't spend Christmas together.
We called 911 when the first one happened. Then we brought her back home because the doctors couldn't tell us anything. Plus we only wanted "comfort care". The second one was worse, so we drove her to emergency ourselves. They kept her a day or two, adjusted her meds, said she had a full blown urinary tract infection and that she was a 1/2 point short of qualifying for Hospice. The criteria says a patient should not be able to say 6 words in a row, and miraculously she did. After nothing but chanting for the past two months. So my dad took her back home. I was against it. But it wasn't my decision.
Something inside of me broke. Like a huge crack in a frozen pond, or a tear in the blacktop.
I'm too frightened to see her again. The seizures were so bizzare and primal and I can't seem to shake them from my mind. I've held people before who were having an epileptic seizure, but this was so much worse. My dad is exhausted. I am too. We didn't spend Christmas together.
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