I sat down here to go off on a tirade about how miserable my day was and how frustrated I felt. Enough so that at one point I wanted to throw up my hands and say fine, I quit!
The reality is that yes I am extremely frustrated but I don't intend to quiet.
Hubby and I made plans to attend a racecar show this weekend. Hubby loves the races. Or at least he did. There was a time in his life he used to drive dirt track. He was pretty good in his day and he enjoyed bragging about it. He even raced on the same track with a young and upcoming driver that surpassed him and went on to bigger and better things. Mr Mark Martin. A young "kid that could barely see over the wheel", Hubby would say. Even though Hubby and Mark never raced together, as they were in two different race classes, Hubby sure liked to talk about those days. A few years ago Marks Promo car passed through town on the back of a hauler and stopped at a local gas station. Hubby was there when it did and he had his picture taken beside the car. He is still proud of that picture and brings it to me to see every now and then. I miss that he doesn't talk about it anymore.
I like dirt track racing myself. There is nothing like the feeling of loud motors vibrating through your body or the taste of a heat lamp hamburger with ketchup and dust. That sounds terrible I know but I really love the races.
We also intended to double our pleasure, double our fun because we were going to see our grandchildren. We hadn't seen these since Christmas and I was so looking forward to spending some precious time with them.
Perhaps another day.
The plan was to take the 3 hr drive, spend the evening with our family, a night in a hotel and attend the car show tomorrow.
Our reason for going the day early was because it takes such a long time to get prepared to go anywhere. 2 hrs at the least and usually exhaustion sets in by the time Hubby is dressed, shaved, combed, fed etc etc.
The show was going to start early in the day so that would have meant getting up extra early to accomplish those tasks and beginning the day hurried and have a very long ride.
I had a set time I wanted to leave that would allow us to arrive at our destination while still daylight. I do not like night driving. A hotel, for our convenience, could be found and we could get up and not rush to be at the show, be able to enjoy it and Hubby could sleep on the ride home.
Hurry is not a word used around here anymore. Oddly, I used to be the one ready right on the dot, Hubby was always reminding me of the time and trying to get me to rush. He never wanted to be late for anything. Now that time and space have no meaning for Hubby he moves at the slowest pace unaware. The more I attempt to hurry Hubby the more anxious he becomes. the more anxious he becomes the slower he gets. It's a no win so I try and allow all the time possible to do anything. Should I miss the 2 hr window even by 5 minsutes you can forget whatever plans were made. Hence, today.
I woke Hubby in plenty of time to prepare him something to eat and still have his good 2 hr window. 15 mins passed and still he would not get out of bed. 15 mins more I had passed and he went to the bathroom. YAY! I thought, a good sign. 15 mins later still no Hubby. I found him back in bed. Not a good sign. I asked Hubby if he was Ok. He seemed to take an extra long time to respond to my question and when he did he said "yeah". I reminded him we were supposed to go somewhere and we had a time we wanted to leave. He lay in the bed a long time with no movement or answer. I walked away and returned once more, 15 mins later, to ask if he was getting up, to which he said "You can go ahead and go if you want". Trying to reason with Lewy is impossible.
By then we had reached the 2 hr window. Anxiety high already I turned and walked away from Hubby. Apparently my anxiety found a way of escape through my eyes. Highly disappointed and frustrated I wanted to walk out the door get into my car and drive away.
Perhaps I should have gotten out and walked up and down the driveway but instead I filled my frustration, sadness and disappointment with food.
Hubby still sleeps and I have tried all day to come to grips with the hatefulness of Lewy. I want to yell at it and shake it hard but how do you make a dying brain understand? I have to learn to separate the disease from my Hubby. Sometimes a difficult thing to do as Hubby was able to get very stubborn and hateful without the help of Lewy. So once more I absorb the feelings.
I try to keep a smile journal. I wondered what I had to smile about today. Thanks to my daughter she was able to help me. She said, Well, at least he said you could go by yourself. We thought it was funny because in his health, he never wanted me to go anywhere by myself.
Friday, February 26, 2010
Monday, February 22, 2010
The Talk
The subject was discussed again while looking at the digital picture frame. Hubby really enjoys looking at it and talking about the people in the pictures and the places they were taken.
I always get tickled when a photo I did not take personally but have possession of pops up and he will ask me where it was taken. Having no idea I tell him I do not know. Hubby gets a little suspicious at this answer. He thinks if I have the picture I had to have taken it and I just don't want to tell him about it.
He likes to talk about the things in the background. In particular we have a photo of a grandson on a lawn mower we used to own. Hubby asks me where that mower is now.
We talk about the kids and grandkids. Our families and our friends.
I even have some random photos of our cats and home before and after we did the new roof and siding.
Hubby recognizes the before picture of our home as where he used to live but most of the time thinks the after picture is of a different house.
There are photos of the snow we have gotten and a big beautiful moon that comes up just at the end of our driveway. It's stunningly beautiful and I am awed every time I see it come up as though it has risen from the field across the street and sitting on the ground in our driveway.
I used to tell my children that their Daddy loves me so much he gave me the moon.
I posted a picture of my moon once commenting that it was nice to have something that gave me a little peace since we had had some pretty bad days at the beginning of Hubby's illness.
Our oldest daughter in an effort to be supportive and loving made the comment "Awww, the moon Daddy gave you" to which I replied, in my sarcastic and glib way I have. "Yep, Daddy moons me almost every night" We both laughed about that comment! She also informed me that was TMI! Too Much Information (giggle) 'What?" LOL! ;-)
So as Hubby and I were watching parts of our lives flash before our eyes, a picture of my mother (now deceased) popped up. Hubby has lost the connection relating me with my mother. He remembers her as familiar and has a difficult time recalling her name but can not make the connection that she is my mother. During our conversation about her he got her confused with a good friend of his (now deceased) thinking perhaps my mother was his friend or that my mother was related to his friend. I don't think we ever got it straightened out. The longer I kept trying to sort it out, I may have even gotten confused ;-)
What he did recall was the fact that she (both of them) was deceased and her remains had been cremated. This is what started "The Talk".
Hubby and I have had the talk several times before. We have both decided that we would like to be cremated when we pass away. We stated many reasons from cost, plot care even to visitors. We concluded that it was the best option for us. I am grateful that Hubby is and was willing to discuss such a sensitive subject at the beginning of his illness and that he can still remember what his wishes are. Death is not something we can hide from, sweep under the rug or avoid. We should all make plans for it or at least discuss our wishes with loved ones.
Knowing what my spouse wants will not make the loss of him, should he go before me, any easier but I will not have doubts as to whether I am doing the things he wanted or not. I have relayed this information to our children also so they are not surprised when the time comes or they will know how to proceed should the duty fall to them to take care of.
Hubby has made one request. He asked me to make sure his dress pants and shirt were cleaned. When I asked his reason why he said, So he could dress nice for the ride. I took them to the cleaners and he has been satisfied that they are hanging in the closet wrapped in their plastic.
My father suggested that when he passes away he himself would like to be cremated and turned into a diamond. I thought he was crazy when he suggested it but I looked into it at Life Gems.
I have boasted about the fact that my maternal grandmother was named OPAL and a my Paternal Grandmother was named RUBY so that makes me a true gem. An option that seems a fitting end to my mortal existence. Although, I wonder if I should be concerned about being stolen and pawned.
I always get tickled when a photo I did not take personally but have possession of pops up and he will ask me where it was taken. Having no idea I tell him I do not know. Hubby gets a little suspicious at this answer. He thinks if I have the picture I had to have taken it and I just don't want to tell him about it.
He likes to talk about the things in the background. In particular we have a photo of a grandson on a lawn mower we used to own. Hubby asks me where that mower is now.
We talk about the kids and grandkids. Our families and our friends.
I even have some random photos of our cats and home before and after we did the new roof and siding.
Hubby recognizes the before picture of our home as where he used to live but most of the time thinks the after picture is of a different house.
There are photos of the snow we have gotten and a big beautiful moon that comes up just at the end of our driveway. It's stunningly beautiful and I am awed every time I see it come up as though it has risen from the field across the street and sitting on the ground in our driveway.
I used to tell my children that their Daddy loves me so much he gave me the moon.
Our oldest daughter in an effort to be supportive and loving made the comment "Awww, the moon Daddy gave you" to which I replied, in my sarcastic and glib way I have. "Yep, Daddy moons me almost every night" We both laughed about that comment! She also informed me that was TMI! Too Much Information (giggle) 'What?" LOL! ;-)
So as Hubby and I were watching parts of our lives flash before our eyes, a picture of my mother (now deceased) popped up. Hubby has lost the connection relating me with my mother. He remembers her as familiar and has a difficult time recalling her name but can not make the connection that she is my mother. During our conversation about her he got her confused with a good friend of his (now deceased) thinking perhaps my mother was his friend or that my mother was related to his friend. I don't think we ever got it straightened out. The longer I kept trying to sort it out, I may have even gotten confused ;-)
What he did recall was the fact that she (both of them) was deceased and her remains had been cremated. This is what started "The Talk".
Hubby and I have had the talk several times before. We have both decided that we would like to be cremated when we pass away. We stated many reasons from cost, plot care even to visitors. We concluded that it was the best option for us. I am grateful that Hubby is and was willing to discuss such a sensitive subject at the beginning of his illness and that he can still remember what his wishes are. Death is not something we can hide from, sweep under the rug or avoid. We should all make plans for it or at least discuss our wishes with loved ones.
Knowing what my spouse wants will not make the loss of him, should he go before me, any easier but I will not have doubts as to whether I am doing the things he wanted or not. I have relayed this information to our children also so they are not surprised when the time comes or they will know how to proceed should the duty fall to them to take care of.
Hubby has made one request. He asked me to make sure his dress pants and shirt were cleaned. When I asked his reason why he said, So he could dress nice for the ride. I took them to the cleaners and he has been satisfied that they are hanging in the closet wrapped in their plastic.
My father suggested that when he passes away he himself would like to be cremated and turned into a diamond. I thought he was crazy when he suggested it but I looked into it at Life Gems.
I have boasted about the fact that my maternal grandmother was named OPAL and a my Paternal Grandmother was named RUBY so that makes me a true gem. An option that seems a fitting end to my mortal existence. Although, I wonder if I should be concerned about being stolen and pawned.
Friday, February 19, 2010
Where he stops, nobody knows....
For the last few days, when he hasn't been asleep, Hubby has had some great physical days.
He even tried sneaking up on me yesterday to spook me, but I popped his balloon when I looked at him as he rounded the corner.
"You knew I was coming." Hubby said.
I responded "Yes, I heard you walking"
So he decided if he couldn't scare me he would touch me with a cold coke. brrrr
Mentally though, has been another story. Of course Hubby doesn't think there are any problems.
As we prepared to go to the Dr the other day, Hubby was dressing himself. As I have said before I always give the once over or help when he asks or when I realize he is getting frustrated. From our big mirror, I could see Hubby in the bathroom with a can of deodorant. He seemed to be struggling with the can and eventually turned it upside down and sprayed it in a random direction. My original thought was he thinks it's stopped up. He sprayed it again when I realized he didn't know what to do with it.
I walked into the bathroom and offered to help. Hubby handed me the can and said he couldn't do it. I told him it may have been stopped up so he wouldn't feel like I was taking over even though I was. I rinsed the top and told him I thought I had it fixed so he should raise his arms so I could see. Hubby told me I needed to turn it upside down to make it work. I didn't say anything just sprayed it on Hubby then combed his hair and helped with his shirt..
Yesterday, Hubby's Home Health Nurse came out for her visit. While she was here she was able to talk to Hubby and commented how well he was doing. When She asked how he was he raised up and blurted out "I'm doing wonderful!"
At that moment I would have even believed he was.
Early in the day I would have wondered when he tried so hard to tell me something but could never get the words out.
As he sat in the chair the digital picture frame kept distracting him. Finally he told me he couldn’t remember what he was going to say because “That thing made me forget”
Then a little while later Hubby tried talking to me but never could remember what he wanted to say, forgetting the words he was searching for and then repeating “I need to remember so I can remember, No...” I need to remember so I can remember...” shaking his head he just sat quietly in the chair.
What a difference a few hrs can make in Lewy.
That brings me to today.
Hubby woke early and was prepared for his Aide. He just wanted lotion on his extremely dry skin. Normally when Hubby finishes with his aide he is exhausted and lays down to sleep but this day Hubby walked out of his room dressed. I was very surprised as was his aide. I asked Hubby if he had plans but he just looked at me and turned to walk away to his room. After the aide left I again asked Hubby if there was something he wanted to do today. He told me he thought so but wanted to lay down for a minute. I told Hubby I would get prepared in case he wanted to do something later I would be ready.
I redressed and started working on face and hair Hubby decided he needed help with his shirt buttons. After I buttoned those I reminded him he needed a shave so I shaved and combed his hair for him then finished myself.
Sure enough he was ready to go after a little while so away we went but I had no idea where we were going. I had a 6 min drive trying to get an answer but Hubby couldn't tell me where he wanted me to go. Being it was close to lunch perhaps he wanted to go eat but that wasn't it. We drove through town and passed a barbershop. It was then he knew that he wanted to get his hair cut. Mission accomplished.
Then we decided to have lunch so away we went again. I read the specials to Hubby but he couldn't decide so instead told me to order what ever I wanted him to have. I know he loves fried catfish so I ordered that for him offering him choices that seemed more like my decisions.
"You would rather have french fries instead of onion rings, right?"
" You want a salad with Ranch dressing, don't you?"
I think in doing that he still feels like he can have some say so in his food choices. '
One of my biggest fears is making him feel like a child. Yes it would be easier for me to do and request everything but maintaining his dignity is vital for me. I try so hard to do things in such a non obvious way that I'm usually exhausted by the time we leave.
Sliding a tissue across the table and quietly and quickly alerting Hubby to his running nose.
Preventing food from falling off the plate by pushing other dishes up against his to block.
Offering to have the waitress bring us a bigger bowl for salad because "They filled this one so high I can barely eat out of it.
I have decided to ask for "To Go' cups with lids for us, in case we want to take our drinks home. We almost had a major spill from a regular glass today.
I think our worse moment was when Hubby barely made it to the Ladies room, as the Mens room was occupied. Any port in a storm as the saying goes.
More than an hour from our arrival we left our favorite eating establishment and headed out again. I asked Hubby where he wanted to go but he had no thoughts or ideas. I suggested a friends business so he agreed. They all know Hubby well and understand his problems so I felt secure in letting him go visit without my assistance. He sat in the car with me for a good 10 mins before he ever went inside.
Upon his return I decided we should visit his sister so we headed there for a visit. We never stay long as Hubby is always ready to leave as soon as we get there. I don't understand it. I like visiting Sister.
When we arrived, Sister always tries to help but Hubby had gotten grumpy when she did so and insited he could do it on his own. Sister let him be and she and I walked behind Hubby as he entered the house.
Sister has a bathroom in her washroom where we had just
As we left Hubby was unstable enough he required and asked for my help in walking. I took his hand and once again Sister tried to help but Hubby wanted no part of it. We all 3 walked very slowly to the car. By the time Hubby got in he was exhausted and I could tell getting a little more confused.
After the short 4 mile trip home and Hubby struggled to get inside the house but determined to do it, I left him but watched. He came in and undressed.
I checked e mail and entered a few contests, by the way I won a $5 Gift Card from Sears, Hubby came in to sit with me. He was watching the digital picture frame when he said he didn't understand.
I asked him what he didn't understand and he said "That woman. I can't remember she's related to you. I know her but I can't remember her being your mother."
Once again we had the conversation about my deceased mother. I was finally able to understand that he thought a deceased friend of his was related to us. He also thought the friend was related to my mother but my mother wasn't related to me. What a confusing night! I don't think he ever got the thing straightened out.
He even tried sneaking up on me yesterday to spook me, but I popped his balloon when I looked at him as he rounded the corner.
"You knew I was coming." Hubby said.
I responded "Yes, I heard you walking"
So he decided if he couldn't scare me he would touch me with a cold coke. brrrr
Mentally though, has been another story. Of course Hubby doesn't think there are any problems.
As we prepared to go to the Dr the other day, Hubby was dressing himself. As I have said before I always give the once over or help when he asks or when I realize he is getting frustrated. From our big mirror, I could see Hubby in the bathroom with a can of deodorant. He seemed to be struggling with the can and eventually turned it upside down and sprayed it in a random direction. My original thought was he thinks it's stopped up. He sprayed it again when I realized he didn't know what to do with it.
I walked into the bathroom and offered to help. Hubby handed me the can and said he couldn't do it. I told him it may have been stopped up so he wouldn't feel like I was taking over even though I was. I rinsed the top and told him I thought I had it fixed so he should raise his arms so I could see. Hubby told me I needed to turn it upside down to make it work. I didn't say anything just sprayed it on Hubby then combed his hair and helped with his shirt..
Yesterday, Hubby's Home Health Nurse came out for her visit. While she was here she was able to talk to Hubby and commented how well he was doing. When She asked how he was he raised up and blurted out "I'm doing wonderful!"
At that moment I would have even believed he was.
Early in the day I would have wondered when he tried so hard to tell me something but could never get the words out.
As he sat in the chair the digital picture frame kept distracting him. Finally he told me he couldn’t remember what he was going to say because “That thing made me forget”
Then a little while later Hubby tried talking to me but never could remember what he wanted to say, forgetting the words he was searching for and then repeating “I need to remember so I can remember, No...” I need to remember so I can remember...” shaking his head he just sat quietly in the chair.
What a difference a few hrs can make in Lewy.
That brings me to today.
Hubby woke early and was prepared for his Aide. He just wanted lotion on his extremely dry skin. Normally when Hubby finishes with his aide he is exhausted and lays down to sleep but this day Hubby walked out of his room dressed. I was very surprised as was his aide. I asked Hubby if he had plans but he just looked at me and turned to walk away to his room. After the aide left I again asked Hubby if there was something he wanted to do today. He told me he thought so but wanted to lay down for a minute. I told Hubby I would get prepared in case he wanted to do something later I would be ready.
I redressed and started working on face and hair Hubby decided he needed help with his shirt buttons. After I buttoned those I reminded him he needed a shave so I shaved and combed his hair for him then finished myself.
Sure enough he was ready to go after a little while so away we went but I had no idea where we were going. I had a 6 min drive trying to get an answer but Hubby couldn't tell me where he wanted me to go. Being it was close to lunch perhaps he wanted to go eat but that wasn't it. We drove through town and passed a barbershop. It was then he knew that he wanted to get his hair cut. Mission accomplished.
Then we decided to have lunch so away we went again. I read the specials to Hubby but he couldn't decide so instead told me to order what ever I wanted him to have. I know he loves fried catfish so I ordered that for him offering him choices that seemed more like my decisions.
"You would rather have french fries instead of onion rings, right?"
" You want a salad with Ranch dressing, don't you?"
I think in doing that he still feels like he can have some say so in his food choices. '
One of my biggest fears is making him feel like a child. Yes it would be easier for me to do and request everything but maintaining his dignity is vital for me. I try so hard to do things in such a non obvious way that I'm usually exhausted by the time we leave.
Sliding a tissue across the table and quietly and quickly alerting Hubby to his running nose.
Preventing food from falling off the plate by pushing other dishes up against his to block.
Offering to have the waitress bring us a bigger bowl for salad because "They filled this one so high I can barely eat out of it.
I have decided to ask for "To Go' cups with lids for us, in case we want to take our drinks home. We almost had a major spill from a regular glass today.
I think our worse moment was when Hubby barely made it to the Ladies room, as the Mens room was occupied. Any port in a storm as the saying goes.
More than an hour from our arrival we left our favorite eating establishment and headed out again. I asked Hubby where he wanted to go but he had no thoughts or ideas. I suggested a friends business so he agreed. They all know Hubby well and understand his problems so I felt secure in letting him go visit without my assistance. He sat in the car with me for a good 10 mins before he ever went inside.
Upon his return I decided we should visit his sister so we headed there for a visit. We never stay long as Hubby is always ready to leave as soon as we get there. I don't understand it. I like visiting Sister.
When we arrived, Sister always tries to help but Hubby had gotten grumpy when she did so and insited he could do it on his own. Sister let him be and she and I walked behind Hubby as he entered the house.
Sister has a bathroom in her washroom where we had just
As we left Hubby was unstable enough he required and asked for my help in walking. I took his hand and once again Sister tried to help but Hubby wanted no part of it. We all 3 walked very slowly to the car. By the time Hubby got in he was exhausted and I could tell getting a little more confused.
After the short 4 mile trip home and Hubby struggled to get inside the house but determined to do it, I left him but watched. He came in and undressed.
I checked e mail and entered a few contests, by the way I won a $5 Gift Card from Sears, Hubby came in to sit with me. He was watching the digital picture frame when he said he didn't understand.
I asked him what he didn't understand and he said "That woman. I can't remember she's related to you. I know her but I can't remember her being your mother."
Once again we had the conversation about my deceased mother. I was finally able to understand that he thought a deceased friend of his was related to us. He also thought the friend was related to my mother but my mother wasn't related to me. What a confusing night! I don't think he ever got the thing straightened out.
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