Hubby's struggle over his inability to drive is a major obstacle in our life.
Some days bigger than others but always there in the recesses of his mind he believes he has the ability to drive. On some (some) days he may very well be able too. Lately I would be inclined to think so EXCEPT I know better.
Lewy Body Dementia can leave me spinning trying to understand its ups and downs. For example, Hubby has had some pretty decent days of late. Yes, he does sleep almost all the time anymore but he moves a little better and without the use of his walker when he is awake. Hubby has been a little more like his old fun self the last few weeks joking and teasing. I have appreciated every good moment.
One of the sad things, amongst the plethora, of Lewy is that Hubby is aware he has a problem. he has mentioned it only a few times to me or to others. His actions or lack of them at times also makes me aware he knows he has problems. Truthfully there are times when I wish he didn't know and just forgot about certain things completely, more specifically, driving.
Driving is such an independent thing. So much of his independence has been lost from other things less important to him that he has adapted pretty well. Afterall, having someone to get and do for you sounds pretty good even to me. But driving, that's a whole other ball of wax.
Several months before his diagnosis In March 2007 Hubby bought a brand spanking new truck. He took great effort in adding just the right details to it to doll it up. Bright Red with Chrome accessories and do-dads. It was an eyecatcher for sure. In April and May that same year Hubby wrecked his truck twice, both times in our own yard. The damage was easy to repair but his pride was not. He started driving it less but continued driving his small vehicle. He made me a nervous wreck riding with him. Hubby was driving erratically. Running red lights, severe tailgating. Swerving all over the road. I think there are permanent finger print indentations in the door arm and a foot imprint where a break should be on the passengers side floorboard. I refused to ride anywhere with him. And by June I took over the driving if we went anywhere together.
Hubby continued to drive on his own and even when he was diagnosed he continued for a very short time. Nobody in authority said he couldn't and Hubby knew he was having problems so he actually drove less and less on his own. The last time Hubby drove was mid July 08 and the time before that was end of May 08 ( I know because I kept a journal and went back to look ) so nearly a 2 months hiatus for this daily driver.
He hasn't driven alone since and there are times when he feels like he should be able to.
At his last Neurologist appointment Hubby's Dr still di not say he could not drive, but did say he didn't think that Hubby could get his license renewed. Unfortunately all Hubby has to do is pass a simple eye test and sign on the dotted line to get his license renewed. I think he could do that.
Hubby's license expires on his birthday next month and he has mentioned to me that he needs to renew them but that was a couple of months ago. He has seen the renewal form and I did not throw it away but placed it on the bulletin board. I am thinking if it's so important to Hubby he will remember but I am not going to bring it up. I know that sounds terrible of me and I feel like a heel about it but I only want the safety of Hubby and others. That is something he doesn't want to or can't understand.
Yesterday Hubby saw a Mental Health professional to discuss his feelings about not driving. I am not sure how much of it Hubby actually absorbed because when he tried to talk to me about it later he got lost in his conversation. One good thing came out of the meeting I was able to attend. Hubby remembered who I was and recalled that we were married and where! I was so surprised and then just as quickly as I was happy I was crushed because hubby said he felt like I was keeping him trapped and he wanted out of our marriage. I am still stung and here I sit between a rock and a hard place. Pressed under the weight of the snow.
Today Hubby sleeps.
Today I cried. Some days, I'm too tired to be strong.
Saturday, February 13, 2010
Thursday, February 11, 2010
Driveway Devotional
We have experienced some of the worst winter weather Arkansas has seen in a while. 12" of snow.How can something so beautiful be disliked so much?
Armed with a flat end shovel, a heavy sweatshirt and jeans, sunglasses, gloves and monitor so I could hear Hubby if he needed me. I spent the last 2 days trying to shovel out 200+ feet of driveway. Wide enough of a path that I can get out of the driveway and Hubby's aide or anyone else can get in. I am very tired and sore.
As I was shoveling I took the time to look around at the beauty of the snow. The glistening as though diamond dust was scatter across the yard when the sun was shining on it. The big fluffy clouds passing by at a fairly quick pace. The warmth of the sun beating on my face and the sounds of the ice dripping and snow falling from crackling tree branches and the house eaves. Birds taking flight against a beautiful blue sky leaving behind a trail of the white powder floating off into the air to be evaporated or to find rest somewhere else.
Gods splendor.
Looking through the trees my eye captured a pine tree that had been weighted down by the heaviness of the snow given release from the weight as the sun melted just enough to give it a bounce back.
Shaking the powder from its branches and looking back up to the sky. A moment washed over me as I thought about those trees and the weight they bore.
Some trees branches were mighty and withstood the load of the snow with little to no effect.
Some tree branches and shrubbery were so burdened down by the load and laying in the driveway.
The tangled mess of prickly bushes have prevented one tree in particular to grow awkwardly and bear sparse leaves and branches. The poor tree has never had the opportunity to develop to it's full potential. I doubt it ever will be anything more than a weakling surrounded by prickly bushes.
Some branches are weak and bear no life in them. They are nothing to really look at but you can tell that at one time they were strong and mighty.
Others that are smaller and bare no life, succumbed to the weight and fell off.
The pine trees were my favorite to watch.
Even the tallest and more regal of the pines were not immune to the barrage of flakes. Some withstood quite well. Perhaps losing the weakest branches.
The smaller trees could do nothing but bow down. Some leaned to the side as in an effort to avoid all their branches from being covered. Some succeeded and have yet to straighten out completely. I wonder if they ever will without help.
Some just snapped giving up completely.
Others shouldered the snowfall and appeared to be burdened by the weight.
The wind was at first helping to keep some of the snow off of them but eventually it stopped blowing and the snow fell anyway. I wondered how long they could endure.
Standing there looking at the pine tree I thought how heavy that burden must feel. Many of the branches touching the ground. Then as if God spoke I watched this pine tree shake and then the snow fell off many of the branches. Those branches in their release from bondage stood erect and renewed. A tad dusty but strong and ready for the next round. I laughed when I saw this.
I was struck by the thought that in many ways we are like trees burdened by the weight of snow.
We have a great many burdens to bare. Some of us that have been around a while and have weathered many things still stand tall and regal.
We suffer a great many losses though our lifetime, we see much new life in it also. We have learned how to bend and sway and continue on until our time here is done.
Other trees with dead branches producing no foliage or fruit surrendered to the will of the Lord. For He knows the plans he has for us. Plans to give us a future and a hope. Making room for new productive growth in our lives.
Some of us surrounded by prickly bushes that hinder our growth and effectiveness. Never getting out of the situation mostly because we don't know any better and the prickly bushes have become our way of life. Complacent to do nothing.
Then the pines.
Some of us try to run and avoid the inevitable. Depending on others (the wind) to save us. Leaning away from Lord leaving us bent and deformed.
Some of us leaning so far that we give up and break.
Then there are those of us that keep standing as still and tall as we can. We say we shall not be moved.
We gather our friends (the wind) to help us with the burden. We are ever so grateful knowing we are loved. Yet still more snow falls on our lives and more until we find ourselves heavily burdened by it and we wonder, whatever shall we do, or why me or how much more can I bare? Then just when we think we shall never hold up under the weight and our knees (branches) have been touching the ground for some time, feeling lonely and cold and concerned, we surrender to the will of God.
It is then that God's love shines on us.
He melts the burden bit by bit to reveal the beauty of his creation. Renewing our strength so we too may shake the powder off and spring upright declaring His wonder and love.
Perhaps there is a branch removed from our lives, and He is using that space filling it with good things.
All I know is that there are days I feel like the burdened pine. I shall not be moved. On Christ the solid Rock I stand.
I wonder why things happen but mostly I wonder what I am learning from my experience as a caregiver and how can I use it to help others and declare the love of my Lord and Savior?
So I enjoyed my driveway devotional. I love how God picks the most interesting times and things to talk with me about.
Tuesday, February 9, 2010
Snit
Not Hubby, me.
Hubby had a visitor! A friend came by to visit. YAY for Hubby!! We have known Friend for many years. Hubby knows him much better than I do. It was good to see him for Hubby's sake. He and Hubby have had their ups and downs over the years but they are at least more than acquaintances. We were sad to learn Friend has had some very serious health problems that even required a long hospital stay. Since Hubby's illness he has lost contact with so many people he has known. Many have fell by the wayside or just dropped out of sight. Some have even passed away. Hubby has mostly forgotten how to dial the phone, or "this piece of junk" as he fondly refers to it, and never asks to call anyone. For various reasons I never take it upon myself to contact the people he knows just to check up with them. I myself have a community of friends I stay in contact with via internet. My friends and our friends. Without them I would be lost. They are my legion of laughs, sounding boards and prayer warriors.
So why the snit? Friend was shocked to see how much Hubby had declined. Actually Friend didn't think there was anything really wrong with Hubby until yesterday. When he saw it for himself. I left Friend and Hubby alone to visit but it wasn't long before Friend asked me to join them. I think Friend was a little uncomfortable. Hubby wasn't too engaging in the conversation but did recognize Friend and was happy to see him. Friend can be a little, what's a good word here?... boisterous. If it weren't for my northern upbringing I would probably have been terribly hurt by Friend's comments about some things but I was born with a fairly sharp wit and learned a sarcastic humor that can be to my advantage and to my disadvantage.
Back to my snit. Friend wrapped up his visit with Hubby and as he was leaving looked at me and said. "You take good care of him." I answered that I was already doing that. Friend nodded and grabbed Hubby and me for a hug.
After Friend left Hubby and I said it was nice he came. Hubby was tired and went to bed where he stayed the rest of the day. I had plenty of time to watch the snow fall and fall and fall and fall, did I mention we had snow fall? I do not like snow. Arkansas should only have snow on the grass. I knew we were in for another snow in and it had arrived earlier than expected so Hubby's aide was unable to come and I was unable to make a trip to the store. Once again we were snowed in. Hope the cats don't run out of food.
Today I spend the better part of the day trying to shovel the driveway. The aide can't make it again and I doubt she will be able to get down our driveway tomorrow so here I sit tonight tired and sore and mulling those words over in my head. "You take good care of him" (So much for my northern upbringing tonight.)
Wasn't it apparent that he was safe, clean, and tended to?
When you offered to take him for coffee sometime didn't my concern for you to watch out for him as he is unstable give you a hint I was concerned.
I've only been care giving 24 hrs a day 7 days a week, less whatever time I feel blessed to have for running errands. But then I am still care giving because my time is so short and he is ever on the forefront of my mind. My number readily available should I need to be called and willing to drop everything on the spur of the moment to get to him.
I have only been doing this for a couple of years now and have made so many adjustments to our home for his convenience and safety. You saw those in the house tour.
I have prepared the same meals over and over again because he gets whatever he wants and I'm happy to do it.
I make as much sense as I possibly can out of complete nonsense so he won't get terribly distressed trying to communicate. And I interpret for others and give simple choices so he can still make decisions
I have been rudely and harshly awakened in the night time hours due to REM sleep disorder that I try to avoid or let calm itself or I lull back to gentleness.
I have learned and am learning a way of helping him maintain as much of his dignity as I can possibly preserve. I do my best to talk to him and encourage him.
I make the extra effort to remain calm when he does something he knows he can't yet insists on doing it, leaving me a mess to clean.
I stay as close to him as I can in the event he needs me I am right here.
I bought a monitor so I can still take care of outside things and all he has to do is call for me to come, I will and do.
I have picked him up from the floor and talked him through getting up from the floor.
I have surveyed him for damage and tended wounds.
I have assisted with personal hygiene and dressing. Helping and just out and out doing.
I have assured him there are no others in the house and even demanded that there better not be as I was in my pajamas. (They didn't stick around)
I carry depends in my purse and bring the walker or wheelchair "Just in case'" and we always have the case.
I remind him he is loved and that I am here to take care of him even though he doesn't really know who I am.
I will drive him to the ends of the world if he just wanted to go.
I love him.
So yes, I AM taking good care of him. But would it hurt to say, "Take good care of yourself"
Sometimes a small comment like that can mean so much.
Hubby had a visitor! A friend came by to visit. YAY for Hubby!! We have known Friend for many years. Hubby knows him much better than I do. It was good to see him for Hubby's sake. He and Hubby have had their ups and downs over the years but they are at least more than acquaintances. We were sad to learn Friend has had some very serious health problems that even required a long hospital stay. Since Hubby's illness he has lost contact with so many people he has known. Many have fell by the wayside or just dropped out of sight. Some have even passed away. Hubby has mostly forgotten how to dial the phone, or "this piece of junk" as he fondly refers to it, and never asks to call anyone. For various reasons I never take it upon myself to contact the people he knows just to check up with them. I myself have a community of friends I stay in contact with via internet. My friends and our friends. Without them I would be lost. They are my legion of laughs, sounding boards and prayer warriors.
So why the snit? Friend was shocked to see how much Hubby had declined. Actually Friend didn't think there was anything really wrong with Hubby until yesterday. When he saw it for himself. I left Friend and Hubby alone to visit but it wasn't long before Friend asked me to join them. I think Friend was a little uncomfortable. Hubby wasn't too engaging in the conversation but did recognize Friend and was happy to see him. Friend can be a little, what's a good word here?... boisterous. If it weren't for my northern upbringing I would probably have been terribly hurt by Friend's comments about some things but I was born with a fairly sharp wit and learned a sarcastic humor that can be to my advantage and to my disadvantage.
Back to my snit. Friend wrapped up his visit with Hubby and as he was leaving looked at me and said. "You take good care of him." I answered that I was already doing that. Friend nodded and grabbed Hubby and me for a hug.
After Friend left Hubby and I said it was nice he came. Hubby was tired and went to bed where he stayed the rest of the day. I had plenty of time to watch the snow fall and fall and fall and fall, did I mention we had snow fall? I do not like snow. Arkansas should only have snow on the grass. I knew we were in for another snow in and it had arrived earlier than expected so Hubby's aide was unable to come and I was unable to make a trip to the store. Once again we were snowed in. Hope the cats don't run out of food.
Today I spend the better part of the day trying to shovel the driveway. The aide can't make it again and I doubt she will be able to get down our driveway tomorrow so here I sit tonight tired and sore and mulling those words over in my head. "You take good care of him" (So much for my northern upbringing tonight.)
Wasn't it apparent that he was safe, clean, and tended to?
When you offered to take him for coffee sometime didn't my concern for you to watch out for him as he is unstable give you a hint I was concerned.
I've only been care giving 24 hrs a day 7 days a week, less whatever time I feel blessed to have for running errands. But then I am still care giving because my time is so short and he is ever on the forefront of my mind. My number readily available should I need to be called and willing to drop everything on the spur of the moment to get to him.
I have only been doing this for a couple of years now and have made so many adjustments to our home for his convenience and safety. You saw those in the house tour.
I have prepared the same meals over and over again because he gets whatever he wants and I'm happy to do it.
I make as much sense as I possibly can out of complete nonsense so he won't get terribly distressed trying to communicate. And I interpret for others and give simple choices so he can still make decisions
I have been rudely and harshly awakened in the night time hours due to REM sleep disorder that I try to avoid or let calm itself or I lull back to gentleness.
I have learned and am learning a way of helping him maintain as much of his dignity as I can possibly preserve. I do my best to talk to him and encourage him.
I make the extra effort to remain calm when he does something he knows he can't yet insists on doing it, leaving me a mess to clean.
I stay as close to him as I can in the event he needs me I am right here.
I bought a monitor so I can still take care of outside things and all he has to do is call for me to come, I will and do.
I have picked him up from the floor and talked him through getting up from the floor.
I have surveyed him for damage and tended wounds.
I have assisted with personal hygiene and dressing. Helping and just out and out doing.
I have assured him there are no others in the house and even demanded that there better not be as I was in my pajamas. (They didn't stick around)
I carry depends in my purse and bring the walker or wheelchair "Just in case'" and we always have the case.
I remind him he is loved and that I am here to take care of him even though he doesn't really know who I am.
I will drive him to the ends of the world if he just wanted to go.
I love him.
So yes, I AM taking good care of him. But would it hurt to say, "Take good care of yourself"
Sometimes a small comment like that can mean so much.
Week of sleep 2/1 - 2/7
Got a little overanxious on posting good things in last weeks smiles I added Feb 1 in there.
Feb 2:What a wonderful, fun and blessed day!!
It has snowed here and we had been snowed in. A layer of freezing rain, then sleet then snow and more sleet and snow. Arkansas doesn't adjust well to weather like that. (Give us a big ole tornado any day as opposed to ice and snow.)
With enough of the snow melted we were able to keep Hubby's Dr. appointment. I had scraped and shoveled for 2 days trying to dig out. Thank the Good Lord for his sunshine and warmer temps. I warmed up the car for a good 30 mins before we left.
Hubby was cautious about getting in. One due to the still slick driveway. Two because the ice on the car roof had slid just enough toward the passenger side of the car it looked as if it would fall on Hubby's head at any moment. (I tested it with a hard shove before Hubby ever came outside. No movement)
As we drove away I thought for sure that the ice would at the least just slide off the car hood but it didn't budge. 6 miles at 55 mph to the interstate and it was still hanging on. As we rounded the on ramp and accelerated Hubby and I agreed it would probably fall off. Nope still on. We heard the roof snow move and I looked up into the rear view mirror to see it fly off and crash into the road behind us. Finally about 5 miles down the road at 70 mph we watched chunks of snow hover and fly off the car hood. It was like watching a scene out of the matrix movies. Hubby and I both gasped when the hovering object shot straight up and flew over the roof then we laughed out loud.
After Hubby's Dr appointment we shared Prayer, lunch and laughs with some fabulous friends we love so very much. Hubby had a wonderful visit and was a little more involved than times. He has hopes of doing some fishing with his friend as I do for him. We are also rolling the idea around in trying to take a mini vacation together. That would be so nice :)
Before we left we ran into an old friend we hadn't seen in such a long time. Sadly Hubby didn't remember her.
By the time we got into the car to get home I could tell Hubby was getting pretty tired. He slowed down in walking and talking and just wanted to go home. So home we went. It was a great day! :) ♥
Feb 3: Sleep day
Lewy communication can be a big problem and it sure can leave me scratching my head. .
Feb 4 After opening a bottle of water for Hubby, he asked me if my father still worked at the place where they bottle that water (Daddy overfilled Arizona Tea bottles) I said "No, He retired" Hubby said "He's going to college?" I repeated myself and Hubby just looked at me. All I could do was scratch my head LOL!
Feb 5: Another very quiet day. Hubby slept most of the day and just wandered around the house the rest of the time. When I went to bed and watched TV he snuggled as close as he could and just lay there happy and content. Me too :)
Feb 6: sleep seems to be the only thing going on in our lives lately.
Feb7: Another sleep day for Hubby. We have the pleasure of hosting our Church Youth Group once a month with Food, Bible Study and fellowship. I SO look forward to it. Hubby doesn't make much if any effort to associate so he stays in his room. A couple of times he has made an appearance but retreated to his room.
As he sleeps I Fondly remembered how we used to be so involved in our church activities and Youth groups. I recalled the time we drove the church van. We picked up so many children I started a roll and checked everyone on and off. Every child we picked up was accounted for. One day all children were present and accounted for, we drove away to take them to their respective homes . We drove about 1 block from the Church when I looked at Hubby and asked "Where are OUR children? We found all 3 of them them waiting for us on the Church steps ROFLOL!!!!
Friday, February 5, 2010
Hold on to your stomachs in these ups and downs
The other day Hubby had his Dr appt for medication review.
I appreciate the Dr we have that is handling this. What is very interesting is that the Dr visit is a tele-meds visit. We sit in a room with a social worker in front of a computer screen and the Dr, whom is in another town, talks with Hubby and with me about how Hubby is feeling and doing. I appreciate that the Dr is considerate of the fact that Hubby is in the room. We have run into our fair share of people even medical professionals that as soon as they see his Lewy Body diagnosis act as if he isn't in the room. So sad :(
The Dr has been working with us to wean Hubby back from so many meds. right now Hubby is at 12 diff meds and 2 diff eye drops. Not including asthma inhalers. Our progress is slow but that is fine with me. At the visit Dr considered my recommendation in not changing any meds right now. After running out and having to wait a long weekend to get the refills in the mail I was sure we had hit the rough patch I didn't want to stay in. Boy was I glad when the meds finally arrived and we got leveled out. Needless to say I was afraid of things getting and staying worse as a result of more medicine changes. I feel it's best to see how long we can stay where we are and not rock the boat. The waters have been smooth lately.
On the way home from the Dr we stopped and had lunch with some very dear to our heart friends. I time of prayers, some good food, fun conversation and laughs was just what our (my) heart needed. Hubby had been having some remarkably good days. I wish they could all be like that.
I wish all the things we planned were able to be our reality but unfortunately Hubby can not do the things he once did. He has not accepted that as fact yet but knows he has a problem. Before we left the restaurant Hubby started feeling bad and I could see a marked change in his demeanor and ability both physical and cognitive. He started shaking more and his walking difficulties increased as we were trying to leave. On the way out we ran into an old friend we hadn't seen in a while and that he knew well but I could tell from the look on his face and the way he tried to converse with her that he had no idea who she was.
She in turn was stunned to see the downturn Hubby had made. I assured he he was having some good days lately.
We arrived home and Hubby went to bed. the rapid fluctuations can leave me spinning to try and sort and catch up. He can go from having a decent conversation about something to complete incoherency in a matter of sentences.
That same night he told me he was cold. I told Hubby of course he would be cold. I would be cold running around in only my underclothes in the winter. I told Hubby to get his pajama pants and house shoes and housecoat on. He just kept looking at me like I was speaking a foreign language. I asked him if he wanted his housecoat and he finally answered and said yes, He wanted me to put my housecoat on. ( I was fully dressed) LOL! I reached over and handed him his housecoat and helped him put it on. He just laid down and slept the rest of the evening.
I want him to be up and going. I want him to engage in friends and family. I want him to get out and about. But do I want that for him or for me? He is most content staying home and avoiding the confusions of the world that seem to throw him off balance. Although he enjoyed his lunch with friends the social setting of the noise (even though it's a very small restaurant) of other patrons, the laughter of us. His inability to keep up with the conversation and the trouble with some of his food items took it's toll. It is a rare treat to go out. Only when we have a Dr appointment to go to do we even try. Sometimes the long term effects make it not worth it for me.
Hubby becomes more confused afterward.
The next day he slept most of the day.
He did ask me about a ceiling grate in our kitchen.
A logical subject about a real thing and looked at me and asked
"Did Kathy (that would be me) put that in there?"
I answered "Yes, I put it there"
He asked "Oh, you did? When did you do that?"
I answered "About a year ago"
He stated "Huh I never noticed it before"
Probably because it's only been there a year ;-) I didn't say it.
Yesterday started off badly with a missed trip to the bathroom. frustrated and embarrassed Hubby wanted nothing from the outside world including his aide. I just quickly changed the sheets, scrubbed the floor, helped hubby and made no incident of it. He stayed in bed the rest of the day.
Then last night he brought me a bottle of water to unscrew for him. He asked me if my father still worked at the place that fills those. (My father never filled those but he did overfill the Arizona tea bottles) I just answered that my father retired. Hubby looked at me in surprise and said "He's in College?" I have NO idea where that comment came from except that Lewy quite often has a way of twisting around words inside Hubby's head. I just repeated myself and once more Hubby looked at me as if I spoke a foreign language and was trying to confuse him. He took a sip of his water, placed it on his bed table and finally settled into bed.
Today he sleeps. He woke to complain about his back hurting, as always, and I prepared his favorite breakfast, Malt O Meal. No telling what the rest of the day will bring.
I appreciate the Dr we have that is handling this. What is very interesting is that the Dr visit is a tele-meds visit. We sit in a room with a social worker in front of a computer screen and the Dr, whom is in another town, talks with Hubby and with me about how Hubby is feeling and doing. I appreciate that the Dr is considerate of the fact that Hubby is in the room. We have run into our fair share of people even medical professionals that as soon as they see his Lewy Body diagnosis act as if he isn't in the room. So sad :(
The Dr has been working with us to wean Hubby back from so many meds. right now Hubby is at 12 diff meds and 2 diff eye drops. Not including asthma inhalers. Our progress is slow but that is fine with me. At the visit Dr considered my recommendation in not changing any meds right now. After running out and having to wait a long weekend to get the refills in the mail I was sure we had hit the rough patch I didn't want to stay in. Boy was I glad when the meds finally arrived and we got leveled out. Needless to say I was afraid of things getting and staying worse as a result of more medicine changes. I feel it's best to see how long we can stay where we are and not rock the boat. The waters have been smooth lately.
On the way home from the Dr we stopped and had lunch with some very dear to our heart friends. I time of prayers, some good food, fun conversation and laughs was just what our (my) heart needed. Hubby had been having some remarkably good days. I wish they could all be like that.
I wish all the things we planned were able to be our reality but unfortunately Hubby can not do the things he once did. He has not accepted that as fact yet but knows he has a problem. Before we left the restaurant Hubby started feeling bad and I could see a marked change in his demeanor and ability both physical and cognitive. He started shaking more and his walking difficulties increased as we were trying to leave. On the way out we ran into an old friend we hadn't seen in a while and that he knew well but I could tell from the look on his face and the way he tried to converse with her that he had no idea who she was.
She in turn was stunned to see the downturn Hubby had made. I assured he he was having some good days lately.
We arrived home and Hubby went to bed. the rapid fluctuations can leave me spinning to try and sort and catch up. He can go from having a decent conversation about something to complete incoherency in a matter of sentences.
That same night he told me he was cold. I told Hubby of course he would be cold. I would be cold running around in only my underclothes in the winter. I told Hubby to get his pajama pants and house shoes and housecoat on. He just kept looking at me like I was speaking a foreign language. I asked him if he wanted his housecoat and he finally answered and said yes, He wanted me to put my housecoat on. ( I was fully dressed) LOL! I reached over and handed him his housecoat and helped him put it on. He just laid down and slept the rest of the evening.
I want him to be up and going. I want him to engage in friends and family. I want him to get out and about. But do I want that for him or for me? He is most content staying home and avoiding the confusions of the world that seem to throw him off balance. Although he enjoyed his lunch with friends the social setting of the noise (even though it's a very small restaurant) of other patrons, the laughter of us. His inability to keep up with the conversation and the trouble with some of his food items took it's toll. It is a rare treat to go out. Only when we have a Dr appointment to go to do we even try. Sometimes the long term effects make it not worth it for me.
Hubby becomes more confused afterward.
The next day he slept most of the day.
He did ask me about a ceiling grate in our kitchen.
A logical subject about a real thing and looked at me and asked
"Did Kathy (that would be me) put that in there?"
I answered "Yes, I put it there"
He asked "Oh, you did? When did you do that?"
I answered "About a year ago"
He stated "Huh I never noticed it before"
Probably because it's only been there a year ;-) I didn't say it.
Yesterday started off badly with a missed trip to the bathroom. frustrated and embarrassed Hubby wanted nothing from the outside world including his aide. I just quickly changed the sheets, scrubbed the floor, helped hubby and made no incident of it. He stayed in bed the rest of the day.
Then last night he brought me a bottle of water to unscrew for him. He asked me if my father still worked at the place that fills those. (My father never filled those but he did overfill the Arizona tea bottles) I just answered that my father retired. Hubby looked at me in surprise and said "He's in College?" I have NO idea where that comment came from except that Lewy quite often has a way of twisting around words inside Hubby's head. I just repeated myself and once more Hubby looked at me as if I spoke a foreign language and was trying to confuse him. He took a sip of his water, placed it on his bed table and finally settled into bed.
Today he sleeps. He woke to complain about his back hurting, as always, and I prepared his favorite breakfast, Malt O Meal. No telling what the rest of the day will bring.
Tuesday, February 2, 2010
A week of smiles
Jan 25: Another sleep day for Hubby. I woke him to eat supper and as soon as he finished he went right back to sleep.
Jan26: Two of the grandsons were here and Hubby and I were playing with them. The youngest, aged 2, ran in and out of the bedroom where "PawPaw" was. Hubby, aka PawPaw, would reach out across the bed to Little One and say rawr. Little One would squeel with delight and run away only to come back for more. I decided to hide by the bed and scare him. Hubby agreed that would be fun. The baby came running in and I yelled RARW!. Not only did I scare the baby, I scared Hubby! We all just fell out laughing!
Jan 27: Busy with something in the kitchen I noticed Hubby standing in the washroom. I looked up to see him just standing there smiling at me :) What made this site even more fun is the fact that Hubby never dresses when he is at home. He only dresses if we need to go to the Dr. So he was standing in the washroom in his underpants and because of his muscle tone loss he has very skinny legs. When I saw him standing there I smiled back (who wouldn't) and asked him where his housecoat was. Hubby looked around and then at himself and said " I guess I forgot it".
Missed a day on my smiles because I've been sick but bless Hubby's heart
Jan 29: Hubby has been concerned about me because I have not been feeling well. In his effort to help me besides aking if I was ok he would bring to me whatever he needed done instead of just telling me what he needed. Believe it or not that IS a very sweet gesture :)
Jan 30: Hubby got me tickled by walking into the comp room and looking at me for a min then out, then a few mins later back in to look at me. He did this quite often throughout the evening. Never needing anything, not upset or anxious, just standing there looking at me. I was about to get a complex hmm :-/
Jan 31: KITTY ROUNDUP! I left my coat outside on the door step railing. Hubby opened the door to retrieve it. In the process the baby kittens shot in the house and he was trying to keep them out. (One got caught in the door and is OK) I chased them down while Hubby held the door. Put one out, one came in, over and over. Hubby and I started laughing and he said, "Those are fast little buggers, huh?" Huff, Puff, yes, they are :)
Feb 1: I can not say it but believe me, It was HILARIOUS!!! :) That was my public status but here is the whole story. Hubby requires assistance with some personal care things. Bathing, shaving, combing his hair, at times getting dressed. I always let him do as much as he can and give him the once over but when he feels he can not accomplish the task Hubby tells me he needs help. This day I was helping Hubby button his pants and zip them. As I started zipping Hubby gasped and got wide eyed. I went into a panic thinking I had just caused injury and was at a loss as how to proceed or retreat. Hubby busted out laughing at me. I smacked him a good one in play. He can be such a goofball!!
I am so happy that Hubby has had some wonderful days. I am trying to appreciate them all. Things have been on the upside of this Lewy roller coaster ride and I am truly grateful.
Jan26: Two of the grandsons were here and Hubby and I were playing with them. The youngest, aged 2, ran in and out of the bedroom where "PawPaw" was. Hubby, aka PawPaw, would reach out across the bed to Little One and say rawr. Little One would squeel with delight and run away only to come back for more. I decided to hide by the bed and scare him. Hubby agreed that would be fun. The baby came running in and I yelled RARW!. Not only did I scare the baby, I scared Hubby! We all just fell out laughing!
Jan 27: Busy with something in the kitchen I noticed Hubby standing in the washroom. I looked up to see him just standing there smiling at me :) What made this site even more fun is the fact that Hubby never dresses when he is at home. He only dresses if we need to go to the Dr. So he was standing in the washroom in his underpants and because of his muscle tone loss he has very skinny legs. When I saw him standing there I smiled back (who wouldn't) and asked him where his housecoat was. Hubby looked around and then at himself and said " I guess I forgot it".
Missed a day on my smiles because I've been sick but bless Hubby's heart
Jan 29: Hubby has been concerned about me because I have not been feeling well. In his effort to help me besides aking if I was ok he would bring to me whatever he needed done instead of just telling me what he needed. Believe it or not that IS a very sweet gesture :)
Jan 30: Hubby got me tickled by walking into the comp room and looking at me for a min then out, then a few mins later back in to look at me. He did this quite often throughout the evening. Never needing anything, not upset or anxious, just standing there looking at me. I was about to get a complex hmm :-/
Jan 31: KITTY ROUNDUP! I left my coat outside on the door step railing. Hubby opened the door to retrieve it. In the process the baby kittens shot in the house and he was trying to keep them out. (One got caught in the door and is OK) I chased them down while Hubby held the door. Put one out, one came in, over and over. Hubby and I started laughing and he said, "Those are fast little buggers, huh?" Huff, Puff, yes, they are :)
Feb 1: I can not say it but believe me, It was HILARIOUS!!! :) That was my public status but here is the whole story. Hubby requires assistance with some personal care things. Bathing, shaving, combing his hair, at times getting dressed. I always let him do as much as he can and give him the once over but when he feels he can not accomplish the task Hubby tells me he needs help. This day I was helping Hubby button his pants and zip them. As I started zipping Hubby gasped and got wide eyed. I went into a panic thinking I had just caused injury and was at a loss as how to proceed or retreat. Hubby busted out laughing at me. I smacked him a good one in play. He can be such a goofball!!
I am so happy that Hubby has had some wonderful days. I am trying to appreciate them all. Things have been on the upside of this Lewy roller coaster ride and I am truly grateful.
Saturday, January 30, 2010
A very, very mild taste of Lewy? BLUCK!!
The last few days I have had my fair share of an intestinal virus YUCK!
In his concern for me, Hubby has tried to be helpful to the best of his ability.
Instead of telling me what he has needed done like opening packages of chips or cola cans or dispensing his BC headache powder Hubby has gathered the things and brought them to me to do. Now that may sound strange but it truly is a sweet and helpful gesture. And I SO prefer it to him attempting to do it on his own. Those attempts most always result in a big mess for me to care for.
For the first few days I wasn't sure if I was getting sick or not. I felt OK just not quite right. Then I had my first bathroom run and it was downhill after that. The many trips have left me feeling weak and lethargic.
I tried to sit at my computer but because I have felt so badly any attempts to read have caused my eyes to hurt resulting in a nauseous feeling and headache. Listening has also been frustrating. The noise even from Hubby's television became a bother and since I had no interest in what he was watching and only half paying attention to it, the show wasn't making sense to me causing me annoyance. I just wanted to lay down and sleep and keep all the confusion at bay.
Food was a concern because I knew I would need to feed Hubby. The aromas were terrible and bless his heart for realizing I felt so badly. Hubby was easy to please with simple foods.
When I tried to talk to Hubby, as usual, he had a difficult time hearing/understanding what I said and asked me 'what?' more than once, actually 3 times (not unusual). In a moment of snit I loudly repeated myself in a gruff tone resulting in Hubby replying in a gruff tone followed by my immediate apology for being so snappy and his having to get the brunt end of my frustration. The balance went back and all was well again after that.
I went to bed pretty early and our son called. I must have been half asleep and half awake because I couldn't really remember if he called or not when I woke but as the morning wore on (and I had some coffee) I was able to recall the night easier.
So what does my illness have to do with anything?
I wondered if the way I was feeling could be anywhere close to what Hubby experiences with Lewy on a daily basis.
A loss of bowel and or bladder control. Close calls and or complete misses.
Reading frustrations. Hubby had an eye Dr appt that discovered beginning stages of glaucoma which can and are being treated with drops. They will do field vision testing in a few weeks. At the appt before last he was told his vision was actually 20/20. He always complains about not being able to see well and rubs his eyes. I wonder if much of the eye trouble is related to the way his brain often interprets what he sees.
Hearing problems.
Many many many, did I mention many?, times Hubby will say "What? after I say something to him. I can be standing right by him looking at him speaking in a normal tone when he will say "what?" I will admit this annoys me to no end but many times I have to chuckle because Hubby will repeat what he thought I said and it is so far from the original it HAS to make you laugh!
He used to watch the news all the time but never does anymore. He can't keep up with the fast pace of the information. We don't watch TV movies together because he can not keep up with the plot. I usually watch them late at night while he sleeps beside me and I stroke his hair. He keeps the western channel on and the rerun channel. Some shows he has on we would have never watched before but I don't believe he "watches" them. I think that is one of the 2 channels he knows he can turn the remote to, so there it stays.
I try to avoid news shows and violence shows. Hubby has a tendency to incorporate something he heard or saw into his conversations or believe it has happened or is happening. Believe it or not we do not watch much MASH either. War related.
I started a journal about Hubby and Lewy and I found this passage (one of many) the other day
"June 29, 2008
I don’t know why but I find it amusing that he incorporates the TV conversations in with his conversations. Like the other night I was flipping channels and had stopped on a show about how guns were made got bored and changed to the news and they were talking about Nelson Mandela. (Hubby) started telling me about how he needed to find his gun and clean it. I asked him what gun did he have. He said he got it a while ago. I asked where he got it and he said from that Mandela guy. It struck me as funny."
A well meaning and beloved family member told me I was wrong in not keeping his brain stimulated by keeping up with the news. As much as I appreciate the advise I assured family member that at this point in Hubby's illness he couldn't comprehend the news. I felt that keeping stressful things out of his environment would keep him from feeling that he needed to take measures in warding off the bad. In other words, I didn't want to be mistaken as a criminal and beat up or worse while I slept.
Maybe I am wrong but I don't want to risk finding out.
Weakness. Hubby has lost so much muscle tone due to inactivity that any attempt to do anything results in muscle soreness and inability. Even opening a bag of chips is difficult but he tries. We will not even discuss jar lids. ;-)
SLEEP. Hubby sleeps so much. I wondered if because his brain is slowly being killed by Lewy he stays sleepy or if he is trying to escape the confusion as I did in my sickness. I just wanted to sleep and make the confusion stop. Sadly though Hubby's REM Sleep Disorder prevents him from getting a good rest. He thrashes and fights all the time. The other night he did that ALL night. I don't know if staying up all night would have been better for him or not. I would have felt "safer". Yesterday while I was napping with Hubby he was dreaming and woke me as he swore a vulgarity and mumbled something incoherent. Jerked his covers off as if he was going to attack someone and beat his side table up. I thought he was going to break his lamp again. Nearly off the bed and in the floor I reached over and stroked his hair. Not too smart on my part as he turned in my direction to ward off the rear attack but quickly settled. WHEW! I don't know if I could have defended myself by retreating. ;-)
Food, as mentioned in an earlier blog is a challenge. The very odor of food was a bother to me in my illness. To Hubby finding foods he likes is difficult. Hubby complains that his "Taster" & "Smeller" are messed up. Hubby often smells things that I do not so if food doesn't smell right to him he wont eat it. His taster needs stimulated by lots of spices. Otherwise food is bland to Hubby and he doesn't like to eat. He has always enjoyed VERY spicy HOT foods so I make sure to keep the hot sauce handy.
I have always said I wish I knew how to get into Hubby's head to figure out what he was thinking and if what I felt during my measly illness is anything close I am sorry I said it. If any good comes out of my illness I hope it is that I will have a much greater compassion to Hubby's struggles as compassion has been bestowed upon me.
8 The LORD is compassionate and gracious,
slow to anger, abounding in love.
9 He will not always accuse,
nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
so great is his love for those who fear him;
12 as far as the east is from the west,
so far has he removed our transgressions from us.
In his concern for me, Hubby has tried to be helpful to the best of his ability.
Instead of telling me what he has needed done like opening packages of chips or cola cans or dispensing his BC headache powder Hubby has gathered the things and brought them to me to do. Now that may sound strange but it truly is a sweet and helpful gesture. And I SO prefer it to him attempting to do it on his own. Those attempts most always result in a big mess for me to care for.
For the first few days I wasn't sure if I was getting sick or not. I felt OK just not quite right. Then I had my first bathroom run and it was downhill after that. The many trips have left me feeling weak and lethargic.
I tried to sit at my computer but because I have felt so badly any attempts to read have caused my eyes to hurt resulting in a nauseous feeling and headache. Listening has also been frustrating. The noise even from Hubby's television became a bother and since I had no interest in what he was watching and only half paying attention to it, the show wasn't making sense to me causing me annoyance. I just wanted to lay down and sleep and keep all the confusion at bay.
Food was a concern because I knew I would need to feed Hubby. The aromas were terrible and bless his heart for realizing I felt so badly. Hubby was easy to please with simple foods.
When I tried to talk to Hubby, as usual, he had a difficult time hearing/understanding what I said and asked me 'what?' more than once, actually 3 times (not unusual). In a moment of snit I loudly repeated myself in a gruff tone resulting in Hubby replying in a gruff tone followed by my immediate apology for being so snappy and his having to get the brunt end of my frustration. The balance went back and all was well again after that.
I went to bed pretty early and our son called. I must have been half asleep and half awake because I couldn't really remember if he called or not when I woke but as the morning wore on (and I had some coffee) I was able to recall the night easier.
So what does my illness have to do with anything?
I wondered if the way I was feeling could be anywhere close to what Hubby experiences with Lewy on a daily basis.
A loss of bowel and or bladder control. Close calls and or complete misses.
Reading frustrations. Hubby had an eye Dr appt that discovered beginning stages of glaucoma which can and are being treated with drops. They will do field vision testing in a few weeks. At the appt before last he was told his vision was actually 20/20. He always complains about not being able to see well and rubs his eyes. I wonder if much of the eye trouble is related to the way his brain often interprets what he sees.
Hearing problems.
Many many many, did I mention many?, times Hubby will say "What? after I say something to him. I can be standing right by him looking at him speaking in a normal tone when he will say "what?" I will admit this annoys me to no end but many times I have to chuckle because Hubby will repeat what he thought I said and it is so far from the original it HAS to make you laugh!
He used to watch the news all the time but never does anymore. He can't keep up with the fast pace of the information. We don't watch TV movies together because he can not keep up with the plot. I usually watch them late at night while he sleeps beside me and I stroke his hair. He keeps the western channel on and the rerun channel. Some shows he has on we would have never watched before but I don't believe he "watches" them. I think that is one of the 2 channels he knows he can turn the remote to, so there it stays.
I try to avoid news shows and violence shows. Hubby has a tendency to incorporate something he heard or saw into his conversations or believe it has happened or is happening. Believe it or not we do not watch much MASH either. War related.
I started a journal about Hubby and Lewy and I found this passage (one of many) the other day
"June 29, 2008
I don’t know why but I find it amusing that he incorporates the TV conversations in with his conversations. Like the other night I was flipping channels and had stopped on a show about how guns were made got bored and changed to the news and they were talking about Nelson Mandela. (Hubby) started telling me about how he needed to find his gun and clean it. I asked him what gun did he have. He said he got it a while ago. I asked where he got it and he said from that Mandela guy. It struck me as funny."
A well meaning and beloved family member told me I was wrong in not keeping his brain stimulated by keeping up with the news. As much as I appreciate the advise I assured family member that at this point in Hubby's illness he couldn't comprehend the news. I felt that keeping stressful things out of his environment would keep him from feeling that he needed to take measures in warding off the bad. In other words, I didn't want to be mistaken as a criminal and beat up or worse while I slept.
Maybe I am wrong but I don't want to risk finding out.
Weakness. Hubby has lost so much muscle tone due to inactivity that any attempt to do anything results in muscle soreness and inability. Even opening a bag of chips is difficult but he tries. We will not even discuss jar lids. ;-)
SLEEP. Hubby sleeps so much. I wondered if because his brain is slowly being killed by Lewy he stays sleepy or if he is trying to escape the confusion as I did in my sickness. I just wanted to sleep and make the confusion stop. Sadly though Hubby's REM Sleep Disorder prevents him from getting a good rest. He thrashes and fights all the time. The other night he did that ALL night. I don't know if staying up all night would have been better for him or not. I would have felt "safer". Yesterday while I was napping with Hubby he was dreaming and woke me as he swore a vulgarity and mumbled something incoherent. Jerked his covers off as if he was going to attack someone and beat his side table up. I thought he was going to break his lamp again. Nearly off the bed and in the floor I reached over and stroked his hair. Not too smart on my part as he turned in my direction to ward off the rear attack but quickly settled. WHEW! I don't know if I could have defended myself by retreating. ;-)
Food, as mentioned in an earlier blog is a challenge. The very odor of food was a bother to me in my illness. To Hubby finding foods he likes is difficult. Hubby complains that his "Taster" & "Smeller" are messed up. Hubby often smells things that I do not so if food doesn't smell right to him he wont eat it. His taster needs stimulated by lots of spices. Otherwise food is bland to Hubby and he doesn't like to eat. He has always enjoyed VERY spicy HOT foods so I make sure to keep the hot sauce handy.
I have always said I wish I knew how to get into Hubby's head to figure out what he was thinking and if what I felt during my measly illness is anything close I am sorry I said it. If any good comes out of my illness I hope it is that I will have a much greater compassion to Hubby's struggles as compassion has been bestowed upon me.
Psalm 103:8-12 (New International Version)
8 The LORD is compassionate and gracious,
slow to anger, abounding in love.
9 He will not always accuse,
nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
so great is his love for those who fear him;
12 as far as the east is from the west,
so far has he removed our transgressions from us.
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