Here we are.. end of February already. It hasn't been too bad as Tom's meds are working well for him now.
Sometimes he thinks the medications ARE his problem and says he is going to quit taking them...... I reply with "It's your choice but if it were me and I was doing so well taking the meds... I'm not sure I would want to chance what would happen if I quit."
He says if he gets bad after stopping them he will just go back on them... I replied with..."That's all good BUT from what I have read... anyone stopping their meds and then going back on ..... don't go back to where they where but rather... they have declined more and can not get it back.........
I see him searching for the person he was and what he use to do..... He blames the pills on his lack of ambition and energy..... his tiredness...... and weight gain. It's probably true in part BUT without the medications he wouldn't be sitting here thinking about what all he has lost.
Tom is anxious for spring..... he thinks there will be more to do? We are planning on putting up a small garage but that can't begin till the road limits are lifted..... in April.
He believes he is going to get a BIG DOZER in here and take out all my trees because he is tired of mowing around them...... IF you read the main blog you know he doesn't mow anything...... he just wants to get in a dozer and MOVE some big stuff...... He was born with operating BIG equipment in his blood..... He misses it!
On warmer days he has been down in the woods watching the loggers and talking to a few people he knows.....He sometimes takes one of the older Girls (Mag or Lilly) as they miss the old times too.
Tom sleeps till noon these days which is nice for me.... It seems to be apart of his new self.... He doesn't like the fact he is so tired and can sleep so much but that once again HIM knowing the way he WAS and isn't NOW.
Tom has his wants and needs well taken care of... I see to that first..... if he is happy.. everybody is happy. It's just the way it is in this world with this disease.
The hardest thing to accept and adapt to is their selfish self centered-ness which wasn't there when it came to me till this disease took over.....
Point being .... me and the millions other spouses in my shoes... struggle to find me time.... somedays just being able to step outside the door and take in a breath of fresh air without hearing...."MOM??? WHERE ARE YOU?"
I am kept pretty busy just chasing after Tom and the Girls..... but there are times I find some free time on my hands and that is when I play with my projects..... I don't like to be idle for long......
Time on your hands just gives you time to think about all you are missing out on in the rest of the world..... and it serves no good purpose to even go there.... As a spousal caregiver to this disease it's best to make the best of the world you are confined too........ in hopes that you come out at the end still in tack to go on with your life.
It will be fun to see what March brings ....... We got so much snow this winter I expect spring to be plenty muddy so I am already working on "HOW TO KEEP THE MUD OUTSIDE" ....... Now with Tom and the 4 girls.... that is a big challenge! lol
Sunday, February 27, 2011
Sunday, January 30, 2011
January Melt Down
It started out ...the first part of January.... Tom begin to talk in his sleep. It was kinda cute... he' d laugh and giggle... they were happy dreams.
Well eventually the dreams became more a part of reality to him as he started hand movements, which in turn escalated to sleep walking. Nope it didn't stop there.
He ended up not knowing what was real or dream. He went back to work in Colorado where he had a very demanding job..... he told me it was as real as can be. He knew he was in his house and was running this black top plant with all the old guys right here in our house. Tom didn't sleep for near a week. Let me leave it there...
It was the most bizarre thing I have ever experienced. Where I live the choices are few. None of them good. So our one Dr. who deals with the meds for dementia people agreed to "try" to get Tom back.
He only agreed after talking to me and found I was very realistic about this disease, had a good support system and founded me very grounded.
He told me I have done an excellent job with caring for Tom and added quality to his life beyond what he has seen. He also noted Tom would have been institutionalized a long time ago if It weren't for me........ I knew that but was really nice hearing those words from his lips.
We have Tom back now.... not quite the same but better than I had expected.
So life goes on..... not too much different than it was..... And we have only God to thank for bringing Tom back to where he is now.
And I hold the deepest respect and gratitude for the Dr. who thought Tom was worth a try.....
I am finding that people with this disease are disposable....... how sad! No you can't STOP or CURE this disease BUT they can be given QUALITY of life..... not all but that's where everybody gets thrown into one bucket.
The first response I got when I asked for help was..... he isn't going to get any better.... you can't stop this disease from doing what it wants..... maybe it's time to just put him away...... why are you doing all this for this one man.
I also have to mention, speaking of gratitude....... I have found that the most unexpected of people from our community have reached out with a helping hand..... This day and age you don't see that like the old days where everybody looked out for there neighbor.
Tom was one of those guys..... always lending a helping hand.... he would give his last dollar, last cigarette and the shirt off his back....... Something to ponder.
Well eventually the dreams became more a part of reality to him as he started hand movements, which in turn escalated to sleep walking. Nope it didn't stop there.
He ended up not knowing what was real or dream. He went back to work in Colorado where he had a very demanding job..... he told me it was as real as can be. He knew he was in his house and was running this black top plant with all the old guys right here in our house. Tom didn't sleep for near a week. Let me leave it there...
It was the most bizarre thing I have ever experienced. Where I live the choices are few. None of them good. So our one Dr. who deals with the meds for dementia people agreed to "try" to get Tom back.
He only agreed after talking to me and found I was very realistic about this disease, had a good support system and founded me very grounded.
He told me I have done an excellent job with caring for Tom and added quality to his life beyond what he has seen. He also noted Tom would have been institutionalized a long time ago if It weren't for me........ I knew that but was really nice hearing those words from his lips.
We have Tom back now.... not quite the same but better than I had expected.
So life goes on..... not too much different than it was..... And we have only God to thank for bringing Tom back to where he is now.
And I hold the deepest respect and gratitude for the Dr. who thought Tom was worth a try.....
I am finding that people with this disease are disposable....... how sad! No you can't STOP or CURE this disease BUT they can be given QUALITY of life..... not all but that's where everybody gets thrown into one bucket.
The first response I got when I asked for help was..... he isn't going to get any better.... you can't stop this disease from doing what it wants..... maybe it's time to just put him away...... why are you doing all this for this one man.
I also have to mention, speaking of gratitude....... I have found that the most unexpected of people from our community have reached out with a helping hand..... This day and age you don't see that like the old days where everybody looked out for there neighbor.
Tom was one of those guys..... always lending a helping hand.... he would give his last dollar, last cigarette and the shirt off his back....... Something to ponder.
Saturday, January 15, 2011
Update....
Living with Alzheimer's in our life keeps me pretty busy caring for Tom and the girls... One does not realize what that requires. Some outsiders think I just hang out with nothing but time on my hands ...... and I say to them your welcome to walk my shoes for a day as I could use the break.
I stay focused on the positives in each and everyday..... I don't take the time to waddle in self pity as that would be just throwing precious life away..... God has given me a very special job to do and I give it my all....
I have been able to detach from what was and I am so busy with what is and the ever changing circumstances of every day that I don't have time to miss what was or what we were planning for our future.... "Our Golden Years"
I have found peace in my heart and in my soul living my life for God. Taking care of this man who has been inflicted with this unmerciful disease..... I imagine where he is ... lost in his own mind... depending on ME to take care of his needs and keep him safe...... and when he trails back to the past I go with him..... he is not alone.... I hold his hand in past and present.
He feels and responds to my love for him and trusts me completely. It's scary at times for him when he isn't sure what is real.... but I tell him it's okay.... where we live...... real is where and what we want it to be...... He is comforted by that as he knows where ever he is in his mind... I will be there with him.
I see in his eyes sometimes fear..... fear when he realizes he isn't who he was.... when something has happened that he is aware of that is unlike who he was. I make light of it and we laugh.
With my attitude to enjoy what we have today and let go of the things we can not change, and stuff is stuff, it doesn't make or break our lives as we live it...... We swiftly move past the small stuff.....
I keep the atmosphere happy, joyful, and as fun as I can.....trying to keep him stimulated without pushing him over the edge.... somedays he is just not here and seems to want to be alone...... as he works so hard to stay grounded.... those days I maintain the light atmosphere but in a quiet sort of way.....
I do get frustrated at times and could wring his neck but when I actually think about what pissed me off... it's kind of funny...... of coarse I don't react in front of him so I have time to think about how ridiculous what he said that rubbed me the wrong way, was....
Tom is a man of few words these days but let me tell you by night it is none stop talk.... He is clear and makes total sense..... by day it's a whole different story. lol
When he is in this dream / talking / acting out state... we can interact with each other.... he usually wakes in the middle of it and starts laughing realizing what he his doing for a second and than starts right back at it again...... I told him he has me and the girls totally entertained .... he laughs and thinks it's funny as he does not have nightmares like when he first started this journey.
Tom at this point has given up doing anything at all...... instead he sits and thinks about all the things he doesn't have and if only had them he could do this or that.....
He thinks it is lack of having certain things that keep him from doing anything at all.
Till now this disease has made our life ALL about TOM.... than I slowly became aware that it isn't ALL about him.... it's about ALL of us that are connected to him.... this disease is effecting and touching everyone that is a part of our lives in some way....
So without taking away from Tom's needs, life and security I find creative ways to still find something for myself and to stay in some way a part of the lives of others that are important to me......
That is important because my health and frame of mind directly effects Tom's care. I haven't found a way to get respite so at times I get pretty tired and wore down....
Keep us in your prayers as we have still a long way to go..... And thanks to all who support us, stand beside us and are there to give us a helping hand when needed.
There are people who don't know us but know about us who have helped us "because they can" to you I say "GOD BLESS!"
I stay focused on the positives in each and everyday..... I don't take the time to waddle in self pity as that would be just throwing precious life away..... God has given me a very special job to do and I give it my all....
I have been able to detach from what was and I am so busy with what is and the ever changing circumstances of every day that I don't have time to miss what was or what we were planning for our future.... "Our Golden Years"
I have found peace in my heart and in my soul living my life for God. Taking care of this man who has been inflicted with this unmerciful disease..... I imagine where he is ... lost in his own mind... depending on ME to take care of his needs and keep him safe...... and when he trails back to the past I go with him..... he is not alone.... I hold his hand in past and present.
He feels and responds to my love for him and trusts me completely. It's scary at times for him when he isn't sure what is real.... but I tell him it's okay.... where we live...... real is where and what we want it to be...... He is comforted by that as he knows where ever he is in his mind... I will be there with him.
I see in his eyes sometimes fear..... fear when he realizes he isn't who he was.... when something has happened that he is aware of that is unlike who he was. I make light of it and we laugh.
With my attitude to enjoy what we have today and let go of the things we can not change, and stuff is stuff, it doesn't make or break our lives as we live it...... We swiftly move past the small stuff.....
I keep the atmosphere happy, joyful, and as fun as I can.....trying to keep him stimulated without pushing him over the edge.... somedays he is just not here and seems to want to be alone...... as he works so hard to stay grounded.... those days I maintain the light atmosphere but in a quiet sort of way.....
I do get frustrated at times and could wring his neck but when I actually think about what pissed me off... it's kind of funny...... of coarse I don't react in front of him so I have time to think about how ridiculous what he said that rubbed me the wrong way, was....
Tom is a man of few words these days but let me tell you by night it is none stop talk.... He is clear and makes total sense..... by day it's a whole different story. lol
When he is in this dream / talking / acting out state... we can interact with each other.... he usually wakes in the middle of it and starts laughing realizing what he his doing for a second and than starts right back at it again...... I told him he has me and the girls totally entertained .... he laughs and thinks it's funny as he does not have nightmares like when he first started this journey.
Tom at this point has given up doing anything at all...... instead he sits and thinks about all the things he doesn't have and if only had them he could do this or that.....
He thinks it is lack of having certain things that keep him from doing anything at all.
Till now this disease has made our life ALL about TOM.... than I slowly became aware that it isn't ALL about him.... it's about ALL of us that are connected to him.... this disease is effecting and touching everyone that is a part of our lives in some way....
So without taking away from Tom's needs, life and security I find creative ways to still find something for myself and to stay in some way a part of the lives of others that are important to me......
That is important because my health and frame of mind directly effects Tom's care. I haven't found a way to get respite so at times I get pretty tired and wore down....
Keep us in your prayers as we have still a long way to go..... And thanks to all who support us, stand beside us and are there to give us a helping hand when needed.
There are people who don't know us but know about us who have helped us "because they can" to you I say "GOD BLESS!"
Monday, October 4, 2010
The "Rose"
We have had some pretty hard frosts lately....... as a result the leaves are raining off the trees as the wind blows them around on the ground.... with the sun shinning and the warm temps it couldn't be a more beautiful and peaceful atmosphere........
The girls scamper and play in the yard... Sarah is bringing all the sticks she can find in the woods into the yard as Emily just helps herself to Dad's wood pile..... at the end of the day I go out and pick up there mess so tomorrow they can start anew.....
I carry a sadness in my heart that won't go away.... as Tom slowly retreats to "his own little world" happy as a lark as the woods is where he loves to be ..... he isn't aware of the WE that this disease is stealing from US and the loneliness I feel as he drifts off ........
Doing everything myself keeps me busy and the girls keep me company and GOD sends me little things to brighten my day and bring a smile to my face telling me.... you're really not alone... I am here with you......
The girls scamper and play in the yard... Sarah is bringing all the sticks she can find in the woods into the yard as Emily just helps herself to Dad's wood pile..... at the end of the day I go out and pick up there mess so tomorrow they can start anew.....
I carry a sadness in my heart that won't go away.... as Tom slowly retreats to "his own little world" happy as a lark as the woods is where he loves to be ..... he isn't aware of the WE that this disease is stealing from US and the loneliness I feel as he drifts off ........
Doing everything myself keeps me busy and the girls keep me company and GOD sends me little things to brighten my day and bring a smile to my face telling me.... you're really not alone... I am here with you......
Sunday, October 3, 2010
Up & Down & Around We Go.......
The ups and downs of this disease is quite trying on one particular care giver.... Yes... me. I get close to saying "I CAN"T DO IT ANYMORE!
Then Gods says... yes you can! I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....
Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone....
I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....
This is the conversation between my daughter and me the next morning.... texting.
U ok?....... YUP! : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.
My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?".... just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."
Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad..... especially after I heard his interpretation of what took place..... It didn't match mine.
Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind. I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would. This is our emotional relationship...
In reality Tom knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us. We live in the woods and interact with others when and with whom we choose?
Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him... After YEARS of trying to find the cause / source...... it appears it's triggered in the brain. Is STRESS / FEAR the trigger?
By now you should be able to put together the rest of the story....... The specifics are not important....
I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is....... am I going to make it?
Then Gods says... yes you can! I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....
Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone....
I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....
This is the conversation between my daughter and me the next morning.... texting.
U ok?....... YUP! : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.
My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?".... just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."
Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad..... especially after I heard his interpretation of what took place..... It didn't match mine.
Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind. I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would. This is our emotional relationship...
In reality Tom knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us. We live in the woods and interact with others when and with whom we choose?
Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him... After YEARS of trying to find the cause / source...... it appears it's triggered in the brain. Is STRESS / FEAR the trigger?
By now you should be able to put together the rest of the story....... The specifics are not important....
I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is....... am I going to make it?
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