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.
Saturday, July 25, 2009
July Updates
She doesn't want me to take her picture. I respect that.
She's been suffering outwardly now for 10 years.
Dad is getting tired.
I drive here on Friday night and stay till Sunday afternoon.
Then I drive back to Seaside, OR (90 miles) to my home & job.
Today I soaked her feet, cut her toenails and fingernails.
It's hard to do because everything is so sensitive. She hates it.
I give her a popcicle and turn on Dean Martin songs to distract her.
She is happy when we are done.
She's been suffering outwardly now for 10 years.
Dad is getting tired.
I drive here on Friday night and stay till Sunday afternoon.
Then I drive back to Seaside, OR (90 miles) to my home & job.
Today I soaked her feet, cut her toenails and fingernails.
It's hard to do because everything is so sensitive. She hates it.
I give her a popcicle and turn on Dean Martin songs to distract her.
She is happy when we are done.
No photos
She won't let me take her picture. She puts her head down when I bring out the camera.
I think she's right and I respect her feelings.
Today I soaked her feet, trimmed her toe nails, and did the same with her fingernails.
They really need attention.
She is sleeping most of the time. Talking loudly in her sleep. I see her upright for breakfast and a short lunch. Then back she wants to go to bed. Sometimes I talk her into a popcicle. She stays only until it is gone.
I think she's right and I respect her feelings.
Today I soaked her feet, trimmed her toe nails, and did the same with her fingernails.
They really need attention.
She is sleeping most of the time. Talking loudly in her sleep. I see her upright for breakfast and a short lunch. Then back she wants to go to bed. Sometimes I talk her into a popcicle. She stays only until it is gone.
Saturday, May 9, 2009
Mother's Day
Its hard to celebrate her birthday, May3 and Mother's Day this weekend because there is little to feel grateful for sometimes. She is here, with us, its true. But, she is not with us, and wishes that she could, "go home", as she asks so often.
I am baking a lemon cake. She likes lemon. And there are yellow flowers at the kitchen table.
This weekend we have trimmed her finger nails and toe nails, put on a new spring top and fresh washed jeans. Her hair has grown long and is pulled back into a pony tail.
This morning, at breakfast, I asked her how many children she had. She said, "18".
And, partially she is right, as she babysat so many children throughout her life.
She was known as "Aunt Pat", and the kids, who are now grown adults, remember her fondly.
I told her the names of her five children. She smiles, and looks at me like I am funny. But, she does not know what I'm talking about. I asked her if she knew which one I was, she said, "foo foo". This is not unusual.
Dad said he thinks she is getting better. What he means is that her skin, feet and nails are looking good. We used to worry because they were blueish, and very hot, or puffy, or scaly.
He is commending us (he and I) for the job we are doing, and trying to say this is much better care than she would receive elsewhere. He's probably right. But he needs some respit.
She is eating a little and sleeping a lot.
But, we will celebrate Mother's Day, and have a piece of cake with her.
I'm am grateful she is here.
I am baking a lemon cake. She likes lemon. And there are yellow flowers at the kitchen table.
This weekend we have trimmed her finger nails and toe nails, put on a new spring top and fresh washed jeans. Her hair has grown long and is pulled back into a pony tail.
This morning, at breakfast, I asked her how many children she had. She said, "18".
And, partially she is right, as she babysat so many children throughout her life.
She was known as "Aunt Pat", and the kids, who are now grown adults, remember her fondly.
I told her the names of her five children. She smiles, and looks at me like I am funny. But, she does not know what I'm talking about. I asked her if she knew which one I was, she said, "foo foo". This is not unusual.
Dad said he thinks she is getting better. What he means is that her skin, feet and nails are looking good. We used to worry because they were blueish, and very hot, or puffy, or scaly.
He is commending us (he and I) for the job we are doing, and trying to say this is much better care than she would receive elsewhere. He's probably right. But he needs some respit.
She is eating a little and sleeping a lot.
But, we will celebrate Mother's Day, and have a piece of cake with her.
I'm am grateful she is here.
Tuesday, December 23, 2008
Fish out of water
I haven't done much surfing since my mom got sick.
Since 1997, I was surfing every weekend with my boyfriend, John.
We'd get off work on Friday and drive directly to the surf spot, where we would stay until late Sunday afternoon before heading back to town.
We spent the entire day near the water. When when we weren't riding waves, we were watching them; or talking with friends, napping in the Volkswagon vans, or making tea on the propane stove. But, when mom got sick, surfing began to close out. So did my relationship.
My parents were living at the beach when mom first started having difficulty.
So, as John and I raced to the beach each weekend to forget about work and responsibilities, I began to feel guilty for not being with my folks. I thought it hurt them to know I was somewhere at the beach, but not with them. After awhile, I couldn't justify my joy anymore. So, John went his way, and I went mine.
Now, I paint pictures of the ocean, and think a lot about surfing.
I don't know if I will get another chance to live that life again. But, I'm hoping I will.
Since 1997, I was surfing every weekend with my boyfriend, John.
We'd get off work on Friday and drive directly to the surf spot, where we would stay until late Sunday afternoon before heading back to town.
We spent the entire day near the water. When when we weren't riding waves, we were watching them; or talking with friends, napping in the Volkswagon vans, or making tea on the propane stove. But, when mom got sick, surfing began to close out. So did my relationship.
My parents were living at the beach when mom first started having difficulty.
So, as John and I raced to the beach each weekend to forget about work and responsibilities, I began to feel guilty for not being with my folks. I thought it hurt them to know I was somewhere at the beach, but not with them. After awhile, I couldn't justify my joy anymore. So, John went his way, and I went mine.
Now, I paint pictures of the ocean, and think a lot about surfing.
I don't know if I will get another chance to live that life again. But, I'm hoping I will.
Tuesday, December 16, 2008
Vows
After talking with my dad's sister tonight about why he doesn't want to move mom into a nursing home or foster home, she told me that he said, "till death do us part". So, I may have been wrong in my speculation about why Dad won't put mom in a care facility. At first, I thought it was the shock of the expense, and the "spend down" in order to qualify for Medicaid, and his belief that she will be neglected in one of "those places". Then, I thought he was afraid of feeling some kind of guilt if he moved her into a facility. Then, I thought perhaps he made some kind of promise to her in the last few years. But, my aunt said that he feels he needs to take care of mom because of the vows they made when they got married. What can you say to that.
While my mom suffers with the disease, my dad suffers too. He isn't free to live his life as fully as he could. He still sleeps in the same bed with her, partly because its natural and partly because she is looking for him. She insists upon holding his hand while she sleeps. Her nightmares cause her to call out in the dark, which makes it hard to rest beside her. Sometimes she tries to get out of bed, and falls to the floor. I hear the "thump"and run across the hall to see dad picking her up and and taking her the bathroom. It makes for a rough night.
Dad doesn't have many social outlets and he doesn't go to mass anymore. That's because there is no one to watch over mom while I'm away. He could go to mass, and do other things on the weekend, if he would allow someone other than me to be a part of the care giving team. But, he's not ready for whatever reason. So, he doesn't see his friends and doesn't go to church.
I think he is losing some of his faith. I've been hinting to my sister and brother that someone invite Dad to Christmas mass so that he won't be alone on such a special day. We'll see what happens. I'll be here to look after mom, so for sure he can go to mass. I just don't want him to go alone.
He wants to take a welding class, which I think it great. The class is for 11 weeks, half days on Saturdays. I guess I could change my schedule and go to the beach two other days during the week, so that he could take this class and go to mass on Sunday. It didn't dawn on me till just now. The one problem is, that if I find a job in the next 3 months who'll take over my post?
Again, the issue of not having another trained helper comes up. I wish he could see how important this is. But, he doesn't want to have a stranger in the house and he doesn't want to pay the hourly fee. So, I don't know how we are to make plans and proceed.
While my mom suffers with the disease, my dad suffers too. He isn't free to live his life as fully as he could. He still sleeps in the same bed with her, partly because its natural and partly because she is looking for him. She insists upon holding his hand while she sleeps. Her nightmares cause her to call out in the dark, which makes it hard to rest beside her. Sometimes she tries to get out of bed, and falls to the floor. I hear the "thump"and run across the hall to see dad picking her up and and taking her the bathroom. It makes for a rough night.
Dad doesn't have many social outlets and he doesn't go to mass anymore. That's because there is no one to watch over mom while I'm away. He could go to mass, and do other things on the weekend, if he would allow someone other than me to be a part of the care giving team. But, he's not ready for whatever reason. So, he doesn't see his friends and doesn't go to church.
I think he is losing some of his faith. I've been hinting to my sister and brother that someone invite Dad to Christmas mass so that he won't be alone on such a special day. We'll see what happens. I'll be here to look after mom, so for sure he can go to mass. I just don't want him to go alone.
He wants to take a welding class, which I think it great. The class is for 11 weeks, half days on Saturdays. I guess I could change my schedule and go to the beach two other days during the week, so that he could take this class and go to mass on Sunday. It didn't dawn on me till just now. The one problem is, that if I find a job in the next 3 months who'll take over my post?
Again, the issue of not having another trained helper comes up. I wish he could see how important this is. But, he doesn't want to have a stranger in the house and he doesn't want to pay the hourly fee. So, I don't know how we are to make plans and proceed.
Monday, December 15, 2008
December Chills
It's December 15th and Christmas is almost here. We had a bad winter storm come over Portland and the north coast this week, so I didn't drive to the beach for the usual weekend break. Instead, I stayed home with mom and dad and made holiday cards in between the usual caregiving duties.
It's good that my dad and I are a team because caring for someone with advance Alzheimer's is way too much work and intensity for one person. As a team, we tag off when the other runs out of patience.
Sometimes though, you just run out of juice. Even though you love the person, something inside you gets so tapped out, I don't know how to describe it.
Me, I get anxious when I don't get a break after so many days. That's why the drive to the beach is so important. I get to exercise, meditate, look at the waves, watch the surfers and get lost in deep sleep. Even talking to the neighbors, or sweeping pine needles off the driveway is a golden reprieve.
My Mom is restless. She wants to get out of bed and into the wheelchair and be taken to the kitchen table. We offer her liquids, healthy snacks, and try to keep her with us awhile, but soon as she gets to the table she wants to go back to her bed. And so it goes. This is where we start to wear thin on patience, because we can't seem to make her comfortable in either location. So we dance. Back and forth all day from bedroom to kitchen. We've worn a path in the carpet and nicked the doorways so badly with the wheelchair that the wood trim will one day need to be replaced. It's not important, just a side effect of having an old wheelchair in a house not designed for one.
My dad is suffering with depression. He thinks this is now his lot in life, and that putting my mom in a home would be "acting like a cold fish". He thinks God has forgotten him. He doesn't see the joys of the day. He can't recognize a nice hot meal, a flower, a day when mom is smiling as a simple joy. He is quite miserable. I've tried talking to him about getting away, seeing someone, walking, socializing, etc. But, he's angry and stuck in his darkness. So my suggestions are irritating and Pollyanna-ish.
Dad won't let us ask for outside help even though we've qualified for Hospice.
Its very frustrating, because I have no control about the decision he makes for her care, even though I try to help him figure it out. Maybe its his Catholic upbringing that imprisons him. Or, he's just too depressed to see his choices rationally. I don't know. So I hold my tongue.
It's good that my dad and I are a team because caring for someone with advance Alzheimer's is way too much work and intensity for one person. As a team, we tag off when the other runs out of patience.
Sometimes though, you just run out of juice. Even though you love the person, something inside you gets so tapped out, I don't know how to describe it.
Me, I get anxious when I don't get a break after so many days. That's why the drive to the beach is so important. I get to exercise, meditate, look at the waves, watch the surfers and get lost in deep sleep. Even talking to the neighbors, or sweeping pine needles off the driveway is a golden reprieve.
My Mom is restless. She wants to get out of bed and into the wheelchair and be taken to the kitchen table. We offer her liquids, healthy snacks, and try to keep her with us awhile, but soon as she gets to the table she wants to go back to her bed. And so it goes. This is where we start to wear thin on patience, because we can't seem to make her comfortable in either location. So we dance. Back and forth all day from bedroom to kitchen. We've worn a path in the carpet and nicked the doorways so badly with the wheelchair that the wood trim will one day need to be replaced. It's not important, just a side effect of having an old wheelchair in a house not designed for one.
My dad is suffering with depression. He thinks this is now his lot in life, and that putting my mom in a home would be "acting like a cold fish". He thinks God has forgotten him. He doesn't see the joys of the day. He can't recognize a nice hot meal, a flower, a day when mom is smiling as a simple joy. He is quite miserable. I've tried talking to him about getting away, seeing someone, walking, socializing, etc. But, he's angry and stuck in his darkness. So my suggestions are irritating and Pollyanna-ish.
Dad won't let us ask for outside help even though we've qualified for Hospice.
Its very frustrating, because I have no control about the decision he makes for her care, even though I try to help him figure it out. Maybe its his Catholic upbringing that imprisons him. Or, he's just too depressed to see his choices rationally. I don't know. So I hold my tongue.
Thursday, November 13, 2008
Rains are here
Its November and Thanksgiving is almost here.
I wonder if this will be the last one we will share with my mom.
It would be cruel if she were to continue this way into 2009.
I walk by her bedroom to see if her eyes are open or closed.
If she's awake, I crawl up on the bed and lay beside her.
We hold hands and she sometimes smiles. She has a white teddy bear in her arms which she indicates is her friend. She says a little sentence and we pretend we are having a conversation.
I've been interviewing for jobs again, and soon I will be back in the working world, doing something that doesn't really matter. I'd like to stay with her, but I have to pay the bills and the mortgage, so I'm trying to make the most out of being here with her now.
This December 27th will be my parents 50th wedding anniversary.
I hope she's with us until then. I wonder if this is something my dad thinks about.
They always made a big deal of the number of years they were married.
Maybe I should go out and buy them a traditional "50 Years" platter to mark the day.
Its hard to care about anything these days. My dad and I don't enjoy our food anymore. I make great soup or even a chocolate cake - but they seem void of flavor.
I can't sleep much, so I get up early and try to write. My dad tinkers on things in the garage.
I think its so apprapo that winter is coming. The leaves are almost gone and the wind and rains are here. It seems like nature is mimicking what's happening with my mom. Surprisingly, the last of the roses are on our table. My dad rescued 4 yellow rose buds and put them in a vase on the kitchen table. Now they are in bloom.
Yellow is my mom's best color, go figure.
I wonder if this will be the last one we will share with my mom.
It would be cruel if she were to continue this way into 2009.
I walk by her bedroom to see if her eyes are open or closed.
If she's awake, I crawl up on the bed and lay beside her.
We hold hands and she sometimes smiles. She has a white teddy bear in her arms which she indicates is her friend. She says a little sentence and we pretend we are having a conversation.
I've been interviewing for jobs again, and soon I will be back in the working world, doing something that doesn't really matter. I'd like to stay with her, but I have to pay the bills and the mortgage, so I'm trying to make the most out of being here with her now.
This December 27th will be my parents 50th wedding anniversary.
I hope she's with us until then. I wonder if this is something my dad thinks about.
They always made a big deal of the number of years they were married.
Maybe I should go out and buy them a traditional "50 Years" platter to mark the day.
Its hard to care about anything these days. My dad and I don't enjoy our food anymore. I make great soup or even a chocolate cake - but they seem void of flavor.
I can't sleep much, so I get up early and try to write. My dad tinkers on things in the garage.
I think its so apprapo that winter is coming. The leaves are almost gone and the wind and rains are here. It seems like nature is mimicking what's happening with my mom. Surprisingly, the last of the roses are on our table. My dad rescued 4 yellow rose buds and put them in a vase on the kitchen table. Now they are in bloom.
Yellow is my mom's best color, go figure.
Friday, October 31, 2008
Leaves are Falling
My mom doesn't know who I am any longer.
But sometimes she thinks I'm funny and tells me so.
Most of the time her words are jibberish, and I pretend I understand.
But on occassion, she is clear.
Yesterday she said, "You're the strong one". That was a surprise.
Was it what she intended to say, or just an accident?
In the past she has said things like, "You're a nice lady", or "You're pretty".
But, her last comment seemed so insightful.
I wish I knew what was going on inside her head.
I think I could do a better job of making her comfortable.
We saw the doctors this week. Their reports weren't good.
"Keep her comfortable", was the jist of it.
They did some testing and found she has no circulation below her knees due to atherosclerosis (as if Alzheimer's wasn't enough).
So that's why she's not walking much. The blood vessels and arteries are almost completely closed. "Hospice isn't far away", they told us.
But sometimes she thinks I'm funny and tells me so.
Most of the time her words are jibberish, and I pretend I understand.
But on occassion, she is clear.
Yesterday she said, "You're the strong one". That was a surprise.
Was it what she intended to say, or just an accident?
In the past she has said things like, "You're a nice lady", or "You're pretty".
But, her last comment seemed so insightful.
I wish I knew what was going on inside her head.
I think I could do a better job of making her comfortable.
We saw the doctors this week. Their reports weren't good.
"Keep her comfortable", was the jist of it.
They did some testing and found she has no circulation below her knees due to atherosclerosis (as if Alzheimer's wasn't enough).
So that's why she's not walking much. The blood vessels and arteries are almost completely closed. "Hospice isn't far away", they told us.
Tuesday, October 21, 2008
Autumn brings change
She can no longer walk. As of last Friday, actually, she couldn't stand or put pressure on her feet. Its wierd. One day she's shuffling from the bedroom to the kitchen almost every 15 minutes. The next day, she can't hold herself up.
We tried using a walker that we had here at the house, but she could not hold herself up. So, my dad went and got a wheelchair.
It helped a little, but neither of us has much experience with transfering. I think I hurt my back trying to pick her up yesturday. She's like a bag of sand. Heavy, weighty. Now, Dad is touring care facilities. Looking for something suitable and affordable. He tells me the starting price is $4100/month and the prices goes up from there. The selling points they lace in their pitch such as: daily activities, brightly colored rooms, flat screen tvs, etc. really don't have much revelence in our case because she sleeps most of the time. We wake her to offer her water and food or to check on her bathroom needs. That's it. She has little interest in food, people or her surroundings. It's amazing how things have changed from a week ago. Shocking actually. And I'd really like to leave. Run away. Go surfing. Put my head in the frigid water and shock my ears with the sound of crashing waves. Yesterday, I actually visualized packing my van and driving away. I was going to tell my dad that I reached my threshold and can no longer deal. I was planning to drive to the beach house where I would be safely away from the pain of watching them both suffer. But, I'm still here. Trapped in a way. Because, how can I leave. She's my mom.
We tried using a walker that we had here at the house, but she could not hold herself up. So, my dad went and got a wheelchair.
It helped a little, but neither of us has much experience with transfering. I think I hurt my back trying to pick her up yesturday. She's like a bag of sand. Heavy, weighty. Now, Dad is touring care facilities. Looking for something suitable and affordable. He tells me the starting price is $4100/month and the prices goes up from there. The selling points they lace in their pitch such as: daily activities, brightly colored rooms, flat screen tvs, etc. really don't have much revelence in our case because she sleeps most of the time. We wake her to offer her water and food or to check on her bathroom needs. That's it. She has little interest in food, people or her surroundings. It's amazing how things have changed from a week ago. Shocking actually. And I'd really like to leave. Run away. Go surfing. Put my head in the frigid water and shock my ears with the sound of crashing waves. Yesterday, I actually visualized packing my van and driving away. I was going to tell my dad that I reached my threshold and can no longer deal. I was planning to drive to the beach house where I would be safely away from the pain of watching them both suffer. But, I'm still here. Trapped in a way. Because, how can I leave. She's my mom.
Wednesday, September 3, 2008
Blessings
Last weekend, after a difficult week with mom, I drove the beach with my sister her kids and an old friend
who had just moved back to town. The weather was supposed to be beautiful, and it was.
Saturday morning, before going into town for breakfast, I drove west to take a quick glance at the ocean.
It's always beautiful, and for me it sets the tone for the day.
I need to look at the sea before I do anything. I'm not sure why, but it plants a picture in my head of what is happening at that very moment. It tells me what mood the ocean is in.
Sometimes it beckons me so strongly, I can't get the image out of my head.
When that happens, I plan the day accordingly with a book and a blanket, a run, or surfing, rather than starting up some project in the garden.
It was about 7:30am. We were headed back towards the house and there, at the edge of the road was a bull elk. Huge. Magnificent. With a large rack on his head. He stood there, staring at us seemingly without a care. I was squeezing Shannon's forearm. Both of us whispering, "Oh, my gosh". We turned off the engine and watched him, slowly, gracefully walk into the brush, head held high, towards a second bull elk. They bowed their heads and began clacking their antlers together, pushing back and forth. We were awestruck.
Hot steam, like smoke came out of their mouths and nostrils. Though quiet, we could hear their force as they snorted and dug their hoofs into the wet ground. A rare and lucky view of nature.
The first thing that came to mind was the eagle I saw three weeks ago, and the whales who visited last weekend. Back in the city, I told my friend Christine, "All I need now is to see a lion". And low and behold, the elk! I wonder why we are so blessed with these rare visitations from Gods creatures. I wonder what it means. I want there to be some great message in it for me.
It's not a fortune cookie, its not a horoscope, its not man made or contrived. Its nature, still breaking through the man made world to connect with us. But why?
who had just moved back to town. The weather was supposed to be beautiful, and it was.
Saturday morning, before going into town for breakfast, I drove west to take a quick glance at the ocean.
It's always beautiful, and for me it sets the tone for the day.
I need to look at the sea before I do anything. I'm not sure why, but it plants a picture in my head of what is happening at that very moment. It tells me what mood the ocean is in.
Sometimes it beckons me so strongly, I can't get the image out of my head.
When that happens, I plan the day accordingly with a book and a blanket, a run, or surfing, rather than starting up some project in the garden.
It was about 7:30am. We were headed back towards the house and there, at the edge of the road was a bull elk. Huge. Magnificent. With a large rack on his head. He stood there, staring at us seemingly without a care. I was squeezing Shannon's forearm. Both of us whispering, "Oh, my gosh". We turned off the engine and watched him, slowly, gracefully walk into the brush, head held high, towards a second bull elk. They bowed their heads and began clacking their antlers together, pushing back and forth. We were awestruck.
Hot steam, like smoke came out of their mouths and nostrils. Though quiet, we could hear their force as they snorted and dug their hoofs into the wet ground. A rare and lucky view of nature.
The first thing that came to mind was the eagle I saw three weeks ago, and the whales who visited last weekend. Back in the city, I told my friend Christine, "All I need now is to see a lion". And low and behold, the elk! I wonder why we are so blessed with these rare visitations from Gods creatures. I wonder what it means. I want there to be some great message in it for me.
It's not a fortune cookie, its not a horoscope, its not man made or contrived. Its nature, still breaking through the man made world to connect with us. But why?
Tuesday, August 26, 2008
Whales
I have a little house at the beach. So on Friday evenings I drive there for a short reprieve. I usually stop by the "Cove", to see who's out in the evening surf. This time, there were only 3, bobbing like seals waiting for a set. The light was beautiful as the sun began to drop over the horizon, glittering on the waves, casting a peachy color over the rocks and sand. I would have suited up if my board and wetsuit were with me. By the time I got to the house is was almost dark. I unpacked my things, turned on the heat, made some tea and popped in a movie. I needed to decompress.
Sleep is so different at the beach. The air is thick and heavy there. It presses down on you as you sleep. Sometimes its hard to wake up feeling refreshed because you get down so deep into the dream state. Your eyes don't want to open and your pulse seems slower than normal. It's an uphill climb back to reality.
I made my usual morning trek to the ocean at 8. When I hit the top of the road, I saw them. They were sending spray high up into the sky. The whales! My eyes teared a little over my surprise . Its been a while, and I had forgotten them. When I was surfing regularly I could always spot one or two out there somewhere. Standing guard for me. Its kind of a personal thing I have for the whales. I've always loved them. Once, a shaman told me they were my power animal, which was kind of a, "Duh".
They were in close, just beyond the breakers. I couldn't tell how many there were in the pod, but it didn't matter. The ocean was glassy and calm. "Hello", I said out loud (knowing I was alone), "I've missed you". The mist was just beginning to rise off the sea and I could see all the way up and down the beach. It was just me, the whales, and the lone osprey hovering overhead. They were directly in front of me as I walked to the waters edge in hopes of absorbing everything. Their barnacled backs rolling through the water, their side fins pointing to the sky, tips shimmering in the sun, the sound of their powerful airy blows. What a show!
I was grateful to see them again. My heart overflowed with joy. It felt like guardian angels might be nearby. In that moment, it felt as though everything was going to be o.k.
Sleep is so different at the beach. The air is thick and heavy there. It presses down on you as you sleep. Sometimes its hard to wake up feeling refreshed because you get down so deep into the dream state. Your eyes don't want to open and your pulse seems slower than normal. It's an uphill climb back to reality.
I made my usual morning trek to the ocean at 8. When I hit the top of the road, I saw them. They were sending spray high up into the sky. The whales! My eyes teared a little over my surprise . Its been a while, and I had forgotten them. When I was surfing regularly I could always spot one or two out there somewhere. Standing guard for me. Its kind of a personal thing I have for the whales. I've always loved them. Once, a shaman told me they were my power animal, which was kind of a, "Duh".
They were in close, just beyond the breakers. I couldn't tell how many there were in the pod, but it didn't matter. The ocean was glassy and calm. "Hello", I said out loud (knowing I was alone), "I've missed you". The mist was just beginning to rise off the sea and I could see all the way up and down the beach. It was just me, the whales, and the lone osprey hovering overhead. They were directly in front of me as I walked to the waters edge in hopes of absorbing everything. Their barnacled backs rolling through the water, their side fins pointing to the sky, tips shimmering in the sun, the sound of their powerful airy blows. What a show!
I was grateful to see them again. My heart overflowed with joy. It felt like guardian angels might be nearby. In that moment, it felt as though everything was going to be o.k.
Friday, August 22, 2008
Tour of Duty
Mom and I were sitting in lounge chairs in the backyard today eating popcicles. How cool is that!
Clearly, this is far more important work than sitting in an air conditioned conference room debating about some corporate marketing plan that's for sure. What could be more important? I'd like to know.
To bring you up to speed, I quit my job about a month ago. And while I'm hunting for my new post, I decided to move home to help care for my 70 year old mom, Patty, who has advanced Alzheimer's. I was trying to give support on weekends and holidays, but dad needs so much more help. He calls me daily to share his frustrations, ask for help and sometimes just freak out. So, why not.
I'm not sure how long this tour of duty will last. But, I'll tell you this. I can't image being anywhere else right now. Once I moved in, and fully understood the bizzare happenings, it became clear to me that I must be here.
Clearly, this is far more important work than sitting in an air conditioned conference room debating about some corporate marketing plan that's for sure. What could be more important? I'd like to know.
To bring you up to speed, I quit my job about a month ago. And while I'm hunting for my new post, I decided to move home to help care for my 70 year old mom, Patty, who has advanced Alzheimer's. I was trying to give support on weekends and holidays, but dad needs so much more help. He calls me daily to share his frustrations, ask for help and sometimes just freak out. So, why not.
I'm not sure how long this tour of duty will last. But, I'll tell you this. I can't image being anywhere else right now. Once I moved in, and fully understood the bizzare happenings, it became clear to me that I must be here.
Hair Salon Day
Yesturday was hair salon day for my mom. Its always dicey if we can get her in the car, as she sometimes is resistant to going. But, yesturday was successful. A sweet young girl meets us at the door and takes mom by the hand to her station. For a minute, my mom feels pretty, holds her head up, stands a little straighter, flirts for a second or two with my dad when we get home, then goes back to bed. When she wakes up, the hairdo is gone, but its o.k.
You know how Alzheimer's folks forget. That also means they can't remember when they've just eaten. Besides not remembering the pleasure of a juicy popcicle on their tongue, they also don't get the sensation of being full. Yesturday mom was starving.
She actually paced around the kitchen waiting for me to prepare food, after each meal had been cleared. It made her a bit frustrated, because she needs me to understand and to react,
since she cannot prepare food herself. Imagine standing in your own kitchen and feeling so hungry, but not knowing how to get food yourself, and to have to wait for someone to understand what you need. That's a bummer.
At times, mom tries to strike up a conversation with me. She askes, "how are your kids"?
It takes me a while to explain that I am single with no husband or children. I don't think she buys it.
Today I'll take mom and go running again at the track. She'll watch me from the van and wave each time I pass. Perhaps her mom and sisters will come and visit her again (she imagines). As long as her day dreams are pleasant, we're doing o.k.
xoxoKristine
You know how Alzheimer's folks forget. That also means they can't remember when they've just eaten. Besides not remembering the pleasure of a juicy popcicle on their tongue, they also don't get the sensation of being full. Yesturday mom was starving.
She actually paced around the kitchen waiting for me to prepare food, after each meal had been cleared. It made her a bit frustrated, because she needs me to understand and to react,
since she cannot prepare food herself. Imagine standing in your own kitchen and feeling so hungry, but not knowing how to get food yourself, and to have to wait for someone to understand what you need. That's a bummer.
At times, mom tries to strike up a conversation with me. She askes, "how are your kids"?
It takes me a while to explain that I am single with no husband or children. I don't think she buys it.
Today I'll take mom and go running again at the track. She'll watch me from the van and wave each time I pass. Perhaps her mom and sisters will come and visit her again (she imagines). As long as her day dreams are pleasant, we're doing o.k.
xoxoKristine
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