Tuesday, February 9, 2010
Week of sleep 2/1 - 2/7
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! :) ♥
Lewy communication can be a big problem and it sure can leave me scratching my head. .
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.
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