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.
Friday, December 25, 2009
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.
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