We had a very nice quiet Sunday. I had time to dig deep, think and made a very important decision.
I have to go back to work. There it is, I put it out there. Actually, I made the decision Friday, but gave myself time to digest it. The idea of going back to work appeals to me now. Before, it made me cringe. So, I believe the time is right now.
I updated my Resume and will start applying today, online, for a job. I usually don't have any problems finding work, but, with the economy the way it is, I may find it harder this go around. I am hoping there is something out there for me. I can no longer afford to be home.
Starting in December, husband will be on Medicare. The cost is $115.40 per month. They will be taking that out of his Disability check. With my budget being what it is now, that's alot. I have had to adjust my budget. There just is not enough money to go around. Then, Christmas is coming. Not that I spend, spend, spend. But at this time, there will be nothing for Jack under the tree this year if I don't find work.
There is an adult day care near my home. Husband will have to go there. I won't have to pay because husband is terminal. Perks of being terminal, I guess? He won't like it at first, but will get used to it. There is nothing else I can do at this point. They have workshops there. Husband will be kept busy.
How ironic that for many years, I had children in day care. Now, I have to put my husband in adult day care. Some joke; it's not funny anymore.
Today is the day I start my job search. Who knows where it will take me. Who knows how long it will take me. All I know is, I have to go back to work, I have to see to it that I take care of my family and, I have to put my husband in day care. It's not the going back to work that bothers me, it's the idea of putting husband in day care that bothers me. What a blow to him. How did we get here?
I am hoping there is a company out there that fits my needs and I theirs. All I can do is apply, apply, apply.
On to my next adventure.
Husband's last camping trip
Monday, November 7, 2011
Sunday, November 6, 2011
My Saturday
Yesterday afternoon, husband asks if Jack is taking the car to the movies. I say yes.
15 minutes later he asks the same question.
Soon after that, husband asks if Jack is going to the movies. I say yes.
Husband takes a nap.
When he wakes up, he asks me if Jack is taking the car to the movies. I say yes.
Jack goes to the movies. He has to be home by 10:00 PM. I mention (why, oh why do I do this?) to husband that Jack has to be home by 10. Husband nods his head, turns to walk down the hallway, turns back around and asks me if Jack is coming home tonight or spending the night with his friend.
I sigh, husband catches the sigh and says, "You don't have to act that way, all I'm doing is asking a simple question." I apologize and tell him yes, Jack is coming home.
10:00 PM, on the dot, Jack pulls in the driveway. When he comes in the door, husband says, "Oh, mom told me you were spending the night at T's house." Jack looks at me, I just roll my eyes, he tells his dad no, he was never going to spend the night with T. Husband looks confused.
And that, ladies and gentlemen, was how I spent my Saturday!
15 minutes later he asks the same question.
Soon after that, husband asks if Jack is going to the movies. I say yes.
Husband takes a nap.
When he wakes up, he asks me if Jack is taking the car to the movies. I say yes.
Jack goes to the movies. He has to be home by 10:00 PM. I mention (why, oh why do I do this?) to husband that Jack has to be home by 10. Husband nods his head, turns to walk down the hallway, turns back around and asks me if Jack is coming home tonight or spending the night with his friend.
I sigh, husband catches the sigh and says, "You don't have to act that way, all I'm doing is asking a simple question." I apologize and tell him yes, Jack is coming home.
10:00 PM, on the dot, Jack pulls in the driveway. When he comes in the door, husband says, "Oh, mom told me you were spending the night at T's house." Jack looks at me, I just roll my eyes, he tells his dad no, he was never going to spend the night with T. Husband looks confused.
And that, ladies and gentlemen, was how I spent my Saturday!
Saturday, November 5, 2011
Baby, it's cold outside
I heard on the news last night we were going to have our first winter storm of the season. Wind, snow and rain. I woke up this morning to wind and rain. So far, no snow. As long as I don't have to go out in it, I'm OK. Problem is, I promised Jack he could take the car to the movies, then, go to his friends house util 10:00 tonight. If it snows, I can't let him go. He doesn't know how to drive in the snow. Actually, it's not him I'm worried about. It's the other drivers.
Here in the Land of Enchantment, (or, as I like to call it, the Land of Entrapment), when the weather man advises you to stay home, the crazies decide to see how fast and how far they can go without crashing. I have driven in this snow and ice. It's not fun. These people scare me. They have no sense. Even in the best of weather, they still scare me. Let's hope we have no snow, or, that the wet streets don't freeze tonight. That's always fun.
Other than that, not too much happening here. Husband seems OK, for the most part. I have noticed though that his memory is not there anymore. He used to only have spells where his memory would fade. But, this week, I've noticed it's always faded. There's always a memory lapse.
This past week, I have reminded him of things throughout the day. It didn't used to be this way. Everytime he does something that is new, I think back to my year of research on his disease and remember reading about a certain symptom, then, watching it happen to husband before my very eyes. It always makes me catch my breath.
This disease is tricky. Everyone is different, but the same. Sounds crazy, but true. I don't know how else to explain it. They all go through the same things as the brain shuts down, but, at different intervals.
On some of my worst days with husband, I often wish he had cancer. That way, there would be a chance at survival. We would treat the cancer. We would have hope. With Frontal Lobe Dementia, there is no cure, there is no hope. Also, with his rare condition, (running on his mothers' side of the family, striking at a relative young age, with a 3 year life expectancy), makes it all the worse. We don't know when he will die. All we can do is look at the family history. All died by their 47th year. Husband is 46. Not good.
I sound so dark, so depressing. I'm not usually this way. But, there are some days I think about the odds against husband. Some days when I wake up, I look at my husband sleeping, thinking back to happier times. Times on saturday mornings where we would go as a family, somewhere, anywhere.
And I wonder, where did it all go?
Here in the Land of Enchantment, (or, as I like to call it, the Land of Entrapment), when the weather man advises you to stay home, the crazies decide to see how fast and how far they can go without crashing. I have driven in this snow and ice. It's not fun. These people scare me. They have no sense. Even in the best of weather, they still scare me. Let's hope we have no snow, or, that the wet streets don't freeze tonight. That's always fun.
Other than that, not too much happening here. Husband seems OK, for the most part. I have noticed though that his memory is not there anymore. He used to only have spells where his memory would fade. But, this week, I've noticed it's always faded. There's always a memory lapse.
This past week, I have reminded him of things throughout the day. It didn't used to be this way. Everytime he does something that is new, I think back to my year of research on his disease and remember reading about a certain symptom, then, watching it happen to husband before my very eyes. It always makes me catch my breath.
This disease is tricky. Everyone is different, but the same. Sounds crazy, but true. I don't know how else to explain it. They all go through the same things as the brain shuts down, but, at different intervals.
On some of my worst days with husband, I often wish he had cancer. That way, there would be a chance at survival. We would treat the cancer. We would have hope. With Frontal Lobe Dementia, there is no cure, there is no hope. Also, with his rare condition, (running on his mothers' side of the family, striking at a relative young age, with a 3 year life expectancy), makes it all the worse. We don't know when he will die. All we can do is look at the family history. All died by their 47th year. Husband is 46. Not good.
I sound so dark, so depressing. I'm not usually this way. But, there are some days I think about the odds against husband. Some days when I wake up, I look at my husband sleeping, thinking back to happier times. Times on saturday mornings where we would go as a family, somewhere, anywhere.
And I wonder, where did it all go?
Friday, November 4, 2011
New shoes
Shopping with husband yesterday was rather pleasant. Usually, he cannot make up his mind, cannot make a decision and it gets us both frustrated.
When we walked into the shoe store, he got confused, made a few circles, so, I spoke softly to him and told him to follow me. The wide variety of shoes overwhelmed him. He began to get upset. I immediately picked up two pair, each different, led him to a stool to try on. He chose one style. He walked around and around for about 20 minutes in the new shoes. He said he liked them.
Quickly, I gathered his old shoes up, put them in the shoe box, put the other shoes on the shelf and we headed to check out. He began to get confused again, so I told him that he could wear his new shoes home. He got excited about that.
All the way home he kept glancing down at his new shoes. Repeated to me how much he liked them. He smiled alot during the ride home. Made me want to laugh and cry at the same time.
Once we got home, he said he could walk without his cane to the front door. "I've got new shoes, they will help me walk good again", he said. I told him to use his cane, please. He wouldn't. He walked to the front door without his cane. As he did, his arms were outstretched like he was walking on a tightrope. He had a big smile on his face as he walked to the door. All the while, I'm holding my breath watching him do this. All I could think of was him falling and hitting the concrete driveway. He didn't, but, it sure scared me.
When we got inside, I told him that he walked so good without his cane to the door, (OK, so I lied, stay with me folks) imagine how much better he could walk with new shoes AND his cane. His smile became even bigger and he said, "Oh yeah, I can, can't I?"
All afternoon, he walked arund the house WITH his cane in his new shoes. Couldn't wait to show Jack.
Those shoes are normally expensive, however, I got them on sale. He asked me 1,478 times how much I paid for them, that was a good deal, right?, he asked. All. Day. Long.
When I got into bed last night, he asked me, "How much did you pay for the shoes?" I told him. He said, "That was a good deal, huh?" "Yes, honey, it was", (a little weary by this point) I answered.
Today I know he will want to go show his dad his new shoes. I just know it. We will do this all over again today. I will repeat myself until I feel like I am a blithering idiot. Jeez, maybe I am already?
When we walked into the shoe store, he got confused, made a few circles, so, I spoke softly to him and told him to follow me. The wide variety of shoes overwhelmed him. He began to get upset. I immediately picked up two pair, each different, led him to a stool to try on. He chose one style. He walked around and around for about 20 minutes in the new shoes. He said he liked them.
Quickly, I gathered his old shoes up, put them in the shoe box, put the other shoes on the shelf and we headed to check out. He began to get confused again, so I told him that he could wear his new shoes home. He got excited about that.
All the way home he kept glancing down at his new shoes. Repeated to me how much he liked them. He smiled alot during the ride home. Made me want to laugh and cry at the same time.
Once we got home, he said he could walk without his cane to the front door. "I've got new shoes, they will help me walk good again", he said. I told him to use his cane, please. He wouldn't. He walked to the front door without his cane. As he did, his arms were outstretched like he was walking on a tightrope. He had a big smile on his face as he walked to the door. All the while, I'm holding my breath watching him do this. All I could think of was him falling and hitting the concrete driveway. He didn't, but, it sure scared me.
When we got inside, I told him that he walked so good without his cane to the door, (OK, so I lied, stay with me folks) imagine how much better he could walk with new shoes AND his cane. His smile became even bigger and he said, "Oh yeah, I can, can't I?"
All afternoon, he walked arund the house WITH his cane in his new shoes. Couldn't wait to show Jack.
Those shoes are normally expensive, however, I got them on sale. He asked me 1,478 times how much I paid for them, that was a good deal, right?, he asked. All. Day. Long.
When I got into bed last night, he asked me, "How much did you pay for the shoes?" I told him. He said, "That was a good deal, huh?" "Yes, honey, it was", (a little weary by this point) I answered.
Today I know he will want to go show his dad his new shoes. I just know it. We will do this all over again today. I will repeat myself until I feel like I am a blithering idiot. Jeez, maybe I am already?
Thursday, November 3, 2011
To live in my house
Today, I am taking husband to buy him a new pair of shoes. He is excited like a kid starting school.
When Jack got home from school yesterday, husband said, "Jack, mom is getting me a new pair of shoes tomorrow". Jack is so cool. He smiled and said, "hey, great dad". Husband looked so proud. As Jack walked away, the look on his face said it all. That was sad.
Why does my son have to see this? Why can't my son have a real father? Why has my family been "chosen" for this journey? Who knows.
I sometimes do question this. It's not that I get on a "feel sorry for us" kick, it's just questions I have to ask. It keeps me from going insane.
I sincerely hope that you will not have to go through this. Whoever you are out there in Blog Land. The horrors of this disease will leave scars on us that can never be erased.
One of the symptoms of the brain dying is they lose control of their bladder. Husband has wet his pants many times in the last month or two. He hides his wet underwear, sometimes in the hamper, sometimes in the bathroom cabinet. Yeah, he does this. Everytime I find wet underwear, I want to sit and cry. He is ashamed. The last time it happened, I told him to tell me when it happens, so I can wash the underwear right away. He didn't understand.
Imagine how he feels when this happens? I can't. Does it scare him? Does it make him sad? He will not tell me. I don't think he knows how to anymore.
A few weeks ago, he was in his underwear and I noticed a wet spot. I pointed it out to him. He looked confused.
Husband is up early this morning. Got up, dressed himself and is eating a bowl of cereal. Is excited for today. Until I take him to get these new shoes, he will ask many times when we are going. I will answer many times.
We will go to the shoe store. "The Look" will come back. Too many choices, too many people, too much. I will pick out many pairs. He will not be able to make his mind up. It will take time. Finally, he will choose a pair. All the way home, he will question himself on why he chose that pair. Ask me if he did the right thing. Will start to worry that they will not fit, he won't be able to walk, he may get blisters, maybe he should've chosen the white ones or the black ones.
All the while, as I'm driving, I will soothe him, talk to him, reassure him.
When Jack gets home from school, I know he will tell him, "Jack, look what mom bought me". Jack will smile, probably say great choice, dad, then, walk away with that oh so sad look on his face. Huband won't notice. He'll be too busy staring at his new shoes.
Oh, to live in my house.
When Jack got home from school yesterday, husband said, "Jack, mom is getting me a new pair of shoes tomorrow". Jack is so cool. He smiled and said, "hey, great dad". Husband looked so proud. As Jack walked away, the look on his face said it all. That was sad.
Why does my son have to see this? Why can't my son have a real father? Why has my family been "chosen" for this journey? Who knows.
I sometimes do question this. It's not that I get on a "feel sorry for us" kick, it's just questions I have to ask. It keeps me from going insane.
I sincerely hope that you will not have to go through this. Whoever you are out there in Blog Land. The horrors of this disease will leave scars on us that can never be erased.
One of the symptoms of the brain dying is they lose control of their bladder. Husband has wet his pants many times in the last month or two. He hides his wet underwear, sometimes in the hamper, sometimes in the bathroom cabinet. Yeah, he does this. Everytime I find wet underwear, I want to sit and cry. He is ashamed. The last time it happened, I told him to tell me when it happens, so I can wash the underwear right away. He didn't understand.
Imagine how he feels when this happens? I can't. Does it scare him? Does it make him sad? He will not tell me. I don't think he knows how to anymore.
A few weeks ago, he was in his underwear and I noticed a wet spot. I pointed it out to him. He looked confused.
Husband is up early this morning. Got up, dressed himself and is eating a bowl of cereal. Is excited for today. Until I take him to get these new shoes, he will ask many times when we are going. I will answer many times.
We will go to the shoe store. "The Look" will come back. Too many choices, too many people, too much. I will pick out many pairs. He will not be able to make his mind up. It will take time. Finally, he will choose a pair. All the way home, he will question himself on why he chose that pair. Ask me if he did the right thing. Will start to worry that they will not fit, he won't be able to walk, he may get blisters, maybe he should've chosen the white ones or the black ones.
All the while, as I'm driving, I will soothe him, talk to him, reassure him.
When Jack gets home from school, I know he will tell him, "Jack, look what mom bought me". Jack will smile, probably say great choice, dad, then, walk away with that oh so sad look on his face. Huband won't notice. He'll be too busy staring at his new shoes.
Oh, to live in my house.
Wednesday, November 2, 2011
A new & improved me?
Nothing new to report. Husband seems OK, for now. We have many memory lapses throughout the day, but I've gotten used to it. No longer do I brace myself. If I see he has "the look", I roll with it. He usually comes out of it in a matter of a few hours. We pick up where he left off, if he can remember where he left off. I'm learning.
The Physical Therapist called the other day. Said she wants to see husband on a weekly basis. She said that the muscle weakness in the legs is progressive, (I knew that), but, she can help for now. I told her that by taking him to her each week will help him feel better about his disease. I also told her that he has not accepted his fate and is angry about it. He will go once weekly beginning on the 18th of this month. When I told husband, he got excited about it. We made the right decision.
I am in the process of learning about myself. I realized last night I have a long way to go. Life isn't always a bed of roses. Life can be cruel. My life now at times does seem cruel. I try each morning to gear up for the day. If it goes well, good. If not, I am learning how to cope. Some days I do well, other days not so well. I recognize it now and try to pace myself. I am learning how to deal with my anger. I have issues with anger. But, when I recognize I am getting angry, I now talk myself down. It's beginning to work. I am a work in progress.
I will never be perfect. I will always have issues. Who doesn't? For now though, I am learning more about myself and what makes me tick.
I realize in order for me to help husband into this slow decline, I have to help myself first. I have to take care of me. Otherwise, I am no good for husband. Yeah, it's looks good on paper. I do try hard each day. It's like learning a new language. One day though, it will come second nature to me.
I have to accept me as me. I can't be what other people want me to be. I have to be me. But, I have to improve me. I want to feel comfortable in my own skin.
One day I will accomplish this. Probably not in husbands' lifetime, but in mine. My hope is that when husbands' time comes, he will know somewhere in his mind, that I tried, I really, really tried.
The Physical Therapist called the other day. Said she wants to see husband on a weekly basis. She said that the muscle weakness in the legs is progressive, (I knew that), but, she can help for now. I told her that by taking him to her each week will help him feel better about his disease. I also told her that he has not accepted his fate and is angry about it. He will go once weekly beginning on the 18th of this month. When I told husband, he got excited about it. We made the right decision.
I am in the process of learning about myself. I realized last night I have a long way to go. Life isn't always a bed of roses. Life can be cruel. My life now at times does seem cruel. I try each morning to gear up for the day. If it goes well, good. If not, I am learning how to cope. Some days I do well, other days not so well. I recognize it now and try to pace myself. I am learning how to deal with my anger. I have issues with anger. But, when I recognize I am getting angry, I now talk myself down. It's beginning to work. I am a work in progress.
I will never be perfect. I will always have issues. Who doesn't? For now though, I am learning more about myself and what makes me tick.
I realize in order for me to help husband into this slow decline, I have to help myself first. I have to take care of me. Otherwise, I am no good for husband. Yeah, it's looks good on paper. I do try hard each day. It's like learning a new language. One day though, it will come second nature to me.
I have to accept me as me. I can't be what other people want me to be. I have to be me. But, I have to improve me. I want to feel comfortable in my own skin.
One day I will accomplish this. Probably not in husbands' lifetime, but in mine. My hope is that when husbands' time comes, he will know somewhere in his mind, that I tried, I really, really tried.
Tuesday, November 1, 2011
On Strike!!
Last week, I went on strike. I did not cook for a week.
I served this delicious dinner last Monday night. Husband & Jack refused to eat it. They had never tasted it, but said they did not like it.
That really hurt me. I told Jack he ought to be glad he has a mom that cooks for him. That wants him to have good meals. That takes the time to prepare delicious food, even on my budget. Nope, he wasn't going for it.
Husband, on the other hand, agreed fully with Jack. So, I told them I was done cooking. Said they could fend for themselves. They seemed excited about the prospect of eating whatever.
One night, they had muffins for dinner. Another night, I think it was toast. They would glance at my dinner, looking hungry, but, knew better than to ask for any of my food. Teach them, I thought.
What a wonderful week I had. I praised myself for being such a good cook. Patted myself on the back. Smacked my lips as I ate. I stuck to my guns.
On Sunday, Jack asked me if I was going to cook. Told him I was making MY dinner, but, if there was enough leftover, he was welcome it.
To make a long story short, I made enough for them. As they were eating, Jack praised me and my cooking. Said I had cooked the meat perfectly. Said it was the best he had ever tasted. All husband could do was eat and nod his head. After dinner, they both thanked me for the dinner. I took it all in stride, the whole time smiling to myself.
I cooked again last night. I got praises all around. A very simple meal, a poor man's meal. One would've thought Wolfgang Puck made it.
Proud of myself for sticking to my guns. The crazy part is, after hurting my feelings, I could've cared less what they were eating. The night Jack had a muffin, he walked by me as I was eating my dinner. To rub salt in the wound, I told him how delicious that muffin smelled. If he could've gotten away with it, I'm sure he would've told me to go to hell.
So, I'm back in the kitchen, but, they know now if they complain, Mama's gonna go back on strike. Wouldn't bother me in the least.
I served this delicious dinner last Monday night. Husband & Jack refused to eat it. They had never tasted it, but said they did not like it.
That really hurt me. I told Jack he ought to be glad he has a mom that cooks for him. That wants him to have good meals. That takes the time to prepare delicious food, even on my budget. Nope, he wasn't going for it.
Husband, on the other hand, agreed fully with Jack. So, I told them I was done cooking. Said they could fend for themselves. They seemed excited about the prospect of eating whatever.
One night, they had muffins for dinner. Another night, I think it was toast. They would glance at my dinner, looking hungry, but, knew better than to ask for any of my food. Teach them, I thought.
What a wonderful week I had. I praised myself for being such a good cook. Patted myself on the back. Smacked my lips as I ate. I stuck to my guns.
On Sunday, Jack asked me if I was going to cook. Told him I was making MY dinner, but, if there was enough leftover, he was welcome it.
To make a long story short, I made enough for them. As they were eating, Jack praised me and my cooking. Said I had cooked the meat perfectly. Said it was the best he had ever tasted. All husband could do was eat and nod his head. After dinner, they both thanked me for the dinner. I took it all in stride, the whole time smiling to myself.
I cooked again last night. I got praises all around. A very simple meal, a poor man's meal. One would've thought Wolfgang Puck made it.
Proud of myself for sticking to my guns. The crazy part is, after hurting my feelings, I could've cared less what they were eating. The night Jack had a muffin, he walked by me as I was eating my dinner. To rub salt in the wound, I told him how delicious that muffin smelled. If he could've gotten away with it, I'm sure he would've told me to go to hell.
So, I'm back in the kitchen, but, they know now if they complain, Mama's gonna go back on strike. Wouldn't bother me in the least.
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