Part of this disease has turned my husband into one of the most selfish people I have ever known.
He is self-centered, thinks only of himself, full of self pity, will not share and "play nice". Folks, this is the #1 most irritating moments I have about this thing called, Dementia.
It's all about him, and him only. Please don't tell me, "well, Susie, he is sick you know". I, of all people know that. But, I am also human, and these feelings of anger, frustration and irritation are a very real part of my feelings.
We've had a few experiences these last few days of just how much this disease has progressed. Just when you begin to relax and enjoy what you have, this monster comes roaring back, bigger than before. Sometimes in the form of complete memory loss, sometimes in the form of poor pitiful me, sometimes in the form of "me, me and only me".
Ever watch that crazy show, "Wipeout?" I feel like those people at times, just bouncing and balancing. Sometimes you fall, sometimes you don"t.
I want to be "there" for him, but, it's hard when he is so involved in himself and this disease just keeps on destroying. Will I be able to do this? Am I that strong? How can I keep my sanity? How can I be there for all of us? I am having a moment today, a moment that will soon pass, however, when you are in the moment, it's awfully hard to see past.
Oh well, time, or should I say, this disease, continues to march on.
Husband's last camping trip
Monday, April 25, 2011
Sunday, April 24, 2011
Miscellaneous
Just a post about my day in, day out life.
I transplanted two of my big plants yesterday. They are huge, it was a job, but this morning they look so happy. Leon tried to "help" and that is exhausting to me. I know he tries to help, but he only gets in the way. It always ends up with him getting mad at me and me being so frustrated. The end result was two big happy plants though.
My Jack told me he didn't want anything for Easter. First time in 38 years of raising childen that nothing was bought for a child. Wierd. Felt....different. Oh well.
I called my mom yesterday. I usually only call her on Sunday, but felt the need to talk to her yesterday. She sounds good. I so wish I had her nearer to me. Leon talks about her alot. Says he misses her.
For Easter dinner we are not having the traditional ham. I don't care for ham and it's not like were having a lot of people over for dinner. Just Marie, Burt and the kids. So, I am making my famous red chille enchiladas, beans & rice. Traditional New Mexico favorite. May not be healthy, but it's what for dinner.
Leon has started another downward spiral. It started on Friday. Has asked me the craziest questions. I tried not to look like, "what?" If you want to know what my life is like now, imagine you're in a Fun House. With every turn, you bump into walls, can't seem to find your way out, seem so turned around, confused, just when you think you've found your way, bam, another bump. Yes, that's what it's like now. A Fun House.
Only, It's not Fun.
I transplanted two of my big plants yesterday. They are huge, it was a job, but this morning they look so happy. Leon tried to "help" and that is exhausting to me. I know he tries to help, but he only gets in the way. It always ends up with him getting mad at me and me being so frustrated. The end result was two big happy plants though.
My Jack told me he didn't want anything for Easter. First time in 38 years of raising childen that nothing was bought for a child. Wierd. Felt....different. Oh well.
I called my mom yesterday. I usually only call her on Sunday, but felt the need to talk to her yesterday. She sounds good. I so wish I had her nearer to me. Leon talks about her alot. Says he misses her.
For Easter dinner we are not having the traditional ham. I don't care for ham and it's not like were having a lot of people over for dinner. Just Marie, Burt and the kids. So, I am making my famous red chille enchiladas, beans & rice. Traditional New Mexico favorite. May not be healthy, but it's what for dinner.
Leon has started another downward spiral. It started on Friday. Has asked me the craziest questions. I tried not to look like, "what?" If you want to know what my life is like now, imagine you're in a Fun House. With every turn, you bump into walls, can't seem to find your way out, seem so turned around, confused, just when you think you've found your way, bam, another bump. Yes, that's what it's like now. A Fun House.
Only, It's not Fun.
Thursday, April 21, 2011
After
I think about what is going to happen to me & Jack after Leon is gone. It could be 2-3 years or sooner. We just don't know. This disease is so unpredictable. This week, he seems fine. Of course the memory is not what it used to be, the blank look is still there, but he has seemed more of himself lately. It's been OK.
But, when he is gone, I will have to decide whether I want to continue living in this house or get a small apartment. My income will be reduced,(uh, alot) but it will probably only be me, so, what to do? I sure as heck don't want to go back to work. Those days are over. As I've said before, I would love to have someone publish this blog, then I would love to earn enough money to buy a small house: problem solved.
Tish wants me to live with them, Pat & Christine said to come live with them, the other kids want me with them, but, what about what I want? At this time, the idea of living alone sounds good to me. I have never lived alone, but, the solitude sounds so appealing to me. After years of raising children, the noises, the messes, the hassle, getting up each day in a quiet home, well, I think it's what I want. Who knows though, I may be very lonely living alone. I just think at this time, yeah, living alone is what I would prefer.
As time goes by, I may change my mind. I may want to have people around me who love me. I may need people around me. At least I have options.
When my Father died in 1985, my Mother went to live with my oldest brother and his wife. She lived with them for 13 years. She said it was wonderful.
I don't want to be the kind of Mother that burdens her children with her very presence. So, today, my choice is to live alone. My only hope is that financially, I will be able to do it.
So, here's to my future: a future filled with uncertainties, but a future nonetheless. At least I have a future. My husband doesn't.
But, when he is gone, I will have to decide whether I want to continue living in this house or get a small apartment. My income will be reduced,(uh, alot) but it will probably only be me, so, what to do? I sure as heck don't want to go back to work. Those days are over. As I've said before, I would love to have someone publish this blog, then I would love to earn enough money to buy a small house: problem solved.
Tish wants me to live with them, Pat & Christine said to come live with them, the other kids want me with them, but, what about what I want? At this time, the idea of living alone sounds good to me. I have never lived alone, but, the solitude sounds so appealing to me. After years of raising children, the noises, the messes, the hassle, getting up each day in a quiet home, well, I think it's what I want. Who knows though, I may be very lonely living alone. I just think at this time, yeah, living alone is what I would prefer.
As time goes by, I may change my mind. I may want to have people around me who love me. I may need people around me. At least I have options.
When my Father died in 1985, my Mother went to live with my oldest brother and his wife. She lived with them for 13 years. She said it was wonderful.
I don't want to be the kind of Mother that burdens her children with her very presence. So, today, my choice is to live alone. My only hope is that financially, I will be able to do it.
So, here's to my future: a future filled with uncertainties, but a future nonetheless. At least I have a future. My husband doesn't.
Tuesday, April 19, 2011
Fresh Start?
The last few days have almost felt normal. It's been good. Jack has seemed more open to me and I like that.
When Leon spoke with Jack, he told him that he was so sorry he got this disease, that he was so sorry he would not see him grow up. He also told him that he was worried he would not know Jack, that he loves him now and always, that his mind may be gone, but to always remember how much he loves him.
Ok, enough of that, makes me want to cry and I don't want to.
My son Tyler proposed to his long time girlfriend here on Sunday night. Her family "stopped by", but it was a surprise to her; of course we knew ahead of time. As soon as Tyler got down on one knee, she burst into tears. She is a lovely girl, I am looking forward to having her in our family. Of course she's lovely, who could go wrong with a name like hers? It's Susie!!!!!
I am learning there's always hope in our futures. It may not be what we expect, but, after all is said and done, the hope comes creeping in and gives me purpose to see ahead. As I look out, I see that ugly word, "Dementia" smack dab in front of me. But, I am learning to look further, behind that ugly thing to see what's after that. I'll take it.
When Leon spoke with Jack, he told him that he was so sorry he got this disease, that he was so sorry he would not see him grow up. He also told him that he was worried he would not know Jack, that he loves him now and always, that his mind may be gone, but to always remember how much he loves him.
Ok, enough of that, makes me want to cry and I don't want to.
My son Tyler proposed to his long time girlfriend here on Sunday night. Her family "stopped by", but it was a surprise to her; of course we knew ahead of time. As soon as Tyler got down on one knee, she burst into tears. She is a lovely girl, I am looking forward to having her in our family. Of course she's lovely, who could go wrong with a name like hers? It's Susie!!!!!
I am learning there's always hope in our futures. It may not be what we expect, but, after all is said and done, the hope comes creeping in and gives me purpose to see ahead. As I look out, I see that ugly word, "Dementia" smack dab in front of me. But, I am learning to look further, behind that ugly thing to see what's after that. I'll take it.
Sunday, April 17, 2011
The calm after the storm
Things have calmed down around here. Leon seems OK as of yesterday. I talked with him, like a Mother would talk to her mis-behaved child. He understands (I hope) now that getting that angry only makes it worse for everyone. We had a good afternoon and evening and I cooked what he requested for dinner.
Leon is fighting this disease and making himself and everyone around him miserable. You can see the constant struggle he goes through in trying to hide his symptoms. It's hard to watch. My husband can barely walk, his left leg drags, his right leg is spastic, his arms flail out as he is walking, trying to balance and his upper torso bends to the right, making up for the loss of the left leg. It's not a pretty sight. His eyes are vacant with a glassy look to them. Remember the Stepford Wives and that "look" they had? That's my husband. In my husband's mind, he thinks no one knows what's wrong with him. He will listen to you talk, notice I said, Listen. It may look like he is having a conversation with someone, but he is only nodding his head, not giving any feedback on the conversation because he doesn't know how anymore. He watches TV with volume turned up quite loud. Not because he can't hear, he can't comprehend what they are saying because his brain doesn't understand what they are saying. The loud TV is most annoying. When his TV is finally turned off as I crawl into bed, the silence that follows is such a relief to my mind.
I told him that fighting this is not doing him any good, only making it worse, that anyone who sees him knows there is something wrong, get it out in the open, talk about it freely, that this monster of a disease is going to win anyways, make the best of it, use what you have now to your advantage. He "seemed" to understand what I was saying until I mentioned Jack, and how he wants his Dad to be more open with him about all of this. The look on his face told me he did understand what he was doing. So, he took Jack aside and talked with him. What a difference in my Jack. Jack knows, but his Father has never, not once, talked to him about this disease. I have. I saw a bond develope yesterday, a bond that was made from pure love for his child. My heart is full today. I am hoping this is a start for us, a start that is only going to end in death, but I'll take it.
I remember having 7 children, all natural. I remember Dr's and nurses telling me to not fight it, go with the pain. It hurts more if you fight it. The end result is you get a beautiful baby, that the pain was all worth it once you see your child. It's so true. Yes, this is different, the end result is not going to end in a beautiful experience, but, the memories will. The memories of a husband and father who was struck down with this horrible disease, but, who loved his family more than anything. A man who, while fishing up in the mountains, felt so close to God. The look on his face when he caught a big fish, the pride when his little boy would watch as his daddy cleaned the fish, and how after telling the story of catching the "big one" to friends & family, that fish got bigger and bigger each time he told it.
Leon is fighting this disease and making himself and everyone around him miserable. You can see the constant struggle he goes through in trying to hide his symptoms. It's hard to watch. My husband can barely walk, his left leg drags, his right leg is spastic, his arms flail out as he is walking, trying to balance and his upper torso bends to the right, making up for the loss of the left leg. It's not a pretty sight. His eyes are vacant with a glassy look to them. Remember the Stepford Wives and that "look" they had? That's my husband. In my husband's mind, he thinks no one knows what's wrong with him. He will listen to you talk, notice I said, Listen. It may look like he is having a conversation with someone, but he is only nodding his head, not giving any feedback on the conversation because he doesn't know how anymore. He watches TV with volume turned up quite loud. Not because he can't hear, he can't comprehend what they are saying because his brain doesn't understand what they are saying. The loud TV is most annoying. When his TV is finally turned off as I crawl into bed, the silence that follows is such a relief to my mind.
I told him that fighting this is not doing him any good, only making it worse, that anyone who sees him knows there is something wrong, get it out in the open, talk about it freely, that this monster of a disease is going to win anyways, make the best of it, use what you have now to your advantage. He "seemed" to understand what I was saying until I mentioned Jack, and how he wants his Dad to be more open with him about all of this. The look on his face told me he did understand what he was doing. So, he took Jack aside and talked with him. What a difference in my Jack. Jack knows, but his Father has never, not once, talked to him about this disease. I have. I saw a bond develope yesterday, a bond that was made from pure love for his child. My heart is full today. I am hoping this is a start for us, a start that is only going to end in death, but I'll take it.
I remember having 7 children, all natural. I remember Dr's and nurses telling me to not fight it, go with the pain. It hurts more if you fight it. The end result is you get a beautiful baby, that the pain was all worth it once you see your child. It's so true. Yes, this is different, the end result is not going to end in a beautiful experience, but, the memories will. The memories of a husband and father who was struck down with this horrible disease, but, who loved his family more than anything. A man who, while fishing up in the mountains, felt so close to God. The look on his face when he caught a big fish, the pride when his little boy would watch as his daddy cleaned the fish, and how after telling the story of catching the "big one" to friends & family, that fish got bigger and bigger each time he told it.
Saturday, April 16, 2011
Any body got a Life Saver?
The past few days have tested me beyond anything I have ever known. Yesterday being the worst.
Leon has taken a turn for the worse. It all started with me letting him know that I needed a break and was taking yesterday morning to get some fresh air, breathe, relax, enjoy some time away from home and to feel not so suffocated. I just needed some time away. He got very angry. I had never seen him like this. So, I took him with me yesterday, so I could get out of the house. It's easier that way. You cannot reason with him.
And, I have been thinking. There may come a time when I can no longer do for him. The thought of putting him in a nursing home breaks my heart. Just thinking of what it may do to him and even worse, Jack, is heartbreaking. But, what's best for all of us?
I made a promise to him on the Day of Diagnosis that I would never put him in a home, but, that was then, this is now. I feel as if I am drowning. I am concerned, I am just so down today, I am scared, and, sad, very sad.
This is not good. I hate feeling this way. But, if what I experienced on Thursday and yesterday is a peek into what is to come, I may have no other choice. It was not pretty folks.
So today I will take each breath, move slowly, speak carefully, keep the household running on an even keel and hope today is better than the last few days.
Leon has taken a turn for the worse. It all started with me letting him know that I needed a break and was taking yesterday morning to get some fresh air, breathe, relax, enjoy some time away from home and to feel not so suffocated. I just needed some time away. He got very angry. I had never seen him like this. So, I took him with me yesterday, so I could get out of the house. It's easier that way. You cannot reason with him.
And, I have been thinking. There may come a time when I can no longer do for him. The thought of putting him in a nursing home breaks my heart. Just thinking of what it may do to him and even worse, Jack, is heartbreaking. But, what's best for all of us?
I made a promise to him on the Day of Diagnosis that I would never put him in a home, but, that was then, this is now. I feel as if I am drowning. I am concerned, I am just so down today, I am scared, and, sad, very sad.
This is not good. I hate feeling this way. But, if what I experienced on Thursday and yesterday is a peek into what is to come, I may have no other choice. It was not pretty folks.
So today I will take each breath, move slowly, speak carefully, keep the household running on an even keel and hope today is better than the last few days.
Thursday, April 14, 2011
Doom & Gloom?
When I began this post, I promised there would be some funny, lighthearted areas I would go to, along with updates on my husband's conditions. Reading back on some of my posts, I can see we haven't gone to the funny or lighthearted areas. They are there, but are getting lost in my memory because for the most part, we go to that "dark place", all too often.
I need to apologize for that. I am not a negative person, have a great sense of humor and love to make people laugh. However, when my husband wakes up and you have to answer questions like, "what is today?", "can we go somewhere today?", "do we have my cereal?", "did Jack already leave for school?", "when is the 3rd?", "what are you doing?", "what's for dinner tonight?", "what day is it?", "did you feed the dog?", "why is it windy outside?", "what day did you say it was?", get the picture? Then, all of my funny and lighthearted stories are replaced with the reality that my husband has turned into a child again, I no longer have a partner, he is gone, so I switch gears, put on my "Mommy" hat and let my day begin.
This morning, he was yelling for the dog in his sleep. I went into the room to check on him. He was still mumbling, but opened his eyes, as I looked at him I saw something. He wasn't "talking" in his sleep, he was hallucinating. I asked him if he was OK, he mumbled that he was confused, then laid back down. I sat in the living room, heard more mumblings. The dog got a little nervous and I thought, "what if he goes into a full blown episode? Do I call 911? What the hell do I do?" Luckily, he came out of it and is eating breakfast. He seems confused and weak. Don't know where today is going to go.
These are my scary moments. When is it going to go from bad to worse? Does it happen all of a sudden? Does it gradually get worse?
So, you see, I try to post funny stuff but when we to go that "dark place", the funny stuff gets lost. Then, my day is consumed with the reality of what my life is now.
I need to apologize for that. I am not a negative person, have a great sense of humor and love to make people laugh. However, when my husband wakes up and you have to answer questions like, "what is today?", "can we go somewhere today?", "do we have my cereal?", "did Jack already leave for school?", "when is the 3rd?", "what are you doing?", "what's for dinner tonight?", "what day is it?", "did you feed the dog?", "why is it windy outside?", "what day did you say it was?", get the picture? Then, all of my funny and lighthearted stories are replaced with the reality that my husband has turned into a child again, I no longer have a partner, he is gone, so I switch gears, put on my "Mommy" hat and let my day begin.
This morning, he was yelling for the dog in his sleep. I went into the room to check on him. He was still mumbling, but opened his eyes, as I looked at him I saw something. He wasn't "talking" in his sleep, he was hallucinating. I asked him if he was OK, he mumbled that he was confused, then laid back down. I sat in the living room, heard more mumblings. The dog got a little nervous and I thought, "what if he goes into a full blown episode? Do I call 911? What the hell do I do?" Luckily, he came out of it and is eating breakfast. He seems confused and weak. Don't know where today is going to go.
These are my scary moments. When is it going to go from bad to worse? Does it happen all of a sudden? Does it gradually get worse?
So, you see, I try to post funny stuff but when we to go that "dark place", the funny stuff gets lost. Then, my day is consumed with the reality of what my life is now.
Subscribe to:
Posts (Atom)