Sunday, February 26, 2012
Questions
I have some questions for you. How many of you have your dog (or cat) sleep on the bed with you? Does he/she take his half out of the middle? Now the big question. How many of you leave the bathroom door ajar so the dog can get in and check on the water temperature? Or let the dog share the shower with you. That soapy water sure tastes good. Now you don't have to use your name in answering these questions. I know others spoil their pets so this is the time to confess.
Sunday, February 19, 2012
How was your Valentine day
Our day started out great. Dave was in the kitchen fixing his breakfast so naturally Quincy was there too, hoping it was a pill day. (It wasn't). Caregiver Cindy was giving me my breakfast as I sat in my usual spot in the kitchen facing the front window. Our great watchdog was not interested in what was going on outside, and we were not very observant.
Then the front door opened. In came our three grandsons bearing Valentines they had made. As she does every year, Mom Cindy had found ideas for each boy to make. On Sunday we had seen a preview, each boy had picked something different and suitable for their age level and interest. Perhaps the choices had been guided by Mom. Anyway after they came and delivered their Valentine they pointed out the front window. Much to our surprise they had hung Valentine ornaments on the trees out in front. Now we have hearts instead of leaves thanks to Cindy. The boys and Todd could not get over the fact we had not noticed they were out in front. They headed off to school and we enjoyed a wonderful start to our day.
Then the front door opened. In came our three grandsons bearing Valentines they had made. As she does every year, Mom Cindy had found ideas for each boy to make. On Sunday we had seen a preview, each boy had picked something different and suitable for their age level and interest. Perhaps the choices had been guided by Mom. Anyway after they came and delivered their Valentine they pointed out the front window. Much to our surprise they had hung Valentine ornaments on the trees out in front. Now we have hearts instead of leaves thanks to Cindy. The boys and Todd could not get over the fact we had not noticed they were out in front. They headed off to school and we enjoyed a wonderful start to our day.
Monday, February 13, 2012
Quincy Loves
One of the things I miss is petting Quincy. He does not understand why I don't do anything when he is next to me on the bed. We have just found a way to satisfy both of us.
First I need to tell you how our day begins. Dave gets up first and showers and dresses. When he is finished he gets a "pretending to be asleep" Quincy off the bed. If Dave does not get him down Quincy will lay there and cry. Yes, I said lay there not sit there. Since his back trouble we are happy that he will not jump down on the hardwood floors.
The two of them head for the kitchen where Dave keeps track of me on the baby monitor and Quincy expects to be fed first. He eats his dry food while Dave fixes his own breakfast. Then Quincy gets very insterested in what Dave is doing. Quincy takes a pill every other day and hopes each day is pill day. At first he would eat it with his food but soon he was leaving it in his bowl. Dave tried various ways to get the pill in Quincy and each one worked for few days. Now Quincy waites for his scrambled egg with the hidden pill.
What does all this have to do with getting Quincy's loves? Hang in there, I am getting there. After all that one of my caregivers shows up. Please don't tell Quincy that they don't come just to see him. After they say a proper hello first to Quincy, then to Dave, she will come in to get me. But she does not come unescorted. Now while she doing some preparation to get me up Quincy has his time. He knows that I will have my leg out to rub his head with particular attention to his ears. He does return the love by licking my feet. Sometimes he a little scratching with his teeth. That really tickles. Now he will let me get close to him in my chair so I can give foot pets. That is a mixed blessing, I do like being able to pet him and he likes it too. Now there is a small problem, when am I getting close to him to pet him and when does he move to let me get by. Before I would say beep beep and he would move. Now I will have to get something programmed in my computer.
Both of us like the chance to get some loving so we will figure out how to tell the difference between loving time and get out of the way time. Now if you are wondering, Quincy is not spoiled. He is convinced he is a "people" and expects to be treated as such.
First I need to tell you how our day begins. Dave gets up first and showers and dresses. When he is finished he gets a "pretending to be asleep" Quincy off the bed. If Dave does not get him down Quincy will lay there and cry. Yes, I said lay there not sit there. Since his back trouble we are happy that he will not jump down on the hardwood floors.
The two of them head for the kitchen where Dave keeps track of me on the baby monitor and Quincy expects to be fed first. He eats his dry food while Dave fixes his own breakfast. Then Quincy gets very insterested in what Dave is doing. Quincy takes a pill every other day and hopes each day is pill day. At first he would eat it with his food but soon he was leaving it in his bowl. Dave tried various ways to get the pill in Quincy and each one worked for few days. Now Quincy waites for his scrambled egg with the hidden pill.
What does all this have to do with getting Quincy's loves? Hang in there, I am getting there. After all that one of my caregivers shows up. Please don't tell Quincy that they don't come just to see him. After they say a proper hello first to Quincy, then to Dave, she will come in to get me. But she does not come unescorted. Now while she doing some preparation to get me up Quincy has his time. He knows that I will have my leg out to rub his head with particular attention to his ears. He does return the love by licking my feet. Sometimes he a little scratching with his teeth. That really tickles. Now he will let me get close to him in my chair so I can give foot pets. That is a mixed blessing, I do like being able to pet him and he likes it too. Now there is a small problem, when am I getting close to him to pet him and when does he move to let me get by. Before I would say beep beep and he would move. Now I will have to get something programmed in my computer.
Both of us like the chance to get some loving so we will figure out how to tell the difference between loving time and get out of the way time. Now if you are wondering, Quincy is not spoiled. He is convinced he is a "people" and expects to be treated as such.
Monday, February 6, 2012
two months
It has been two months since I got my tracheotomy, and along with the changes to our lifestyle, there is a lot to think about. If you had asked me ten years ago if I would consider being on life support my answer would have been a very definate NO. Five years ago I would have been unsure. As I needed the Bipap more and more I started leaning towards Yes. Here I am today happy that I made the choice I did.
A great many conversations had set the stage for this decision. During the quarterly ALS clinics we always met with the lung doctor, Dr. Libby, and as my ability to breath without the Bipap decreased the question asked was did I want a tracheotomy. He was good at laying out the possible problems and the life style changes for both Dave and myself, not to be discouraging but rather to educate us. There are several things to consider. Often the surgery and recovery time will speed up the muscle loss. The need for 24 hour care is huge and something that could be a huge burden even with my long term care insurance. Another thing that has to be considered is that I will die of something other than ALS. One of my concerns was could I decide to turn off the vent when I was no longer able to go out and about. I was assured that it is not an issue to refuse or discontinue medical intervention.
After all these discussions it was much easier to make the series of decisions that led to the trach. First decision was do they take out the inflamed gall bladder or just make me comfortable and let nature take its course? That was an easy yes, there were too many unfinished things. Even the warning that I could very easily end up with a trach did not deter me. One of the really good things was Dr. Libby had hospital duty that week so he could talk with us knowing our feeling. He could be blunt in telling us the high probability that I would end up with a trach and on a ventilator.
I guess the question now is would I do it again. The answer is yes. As I said above this issue had been completely explored and thought out. As long as I could continue to be in my chair and go out and cause trouble I wanted a trach. That remains. Part of the mental image of someone on life support in lying in a hospital bed, hooked up to various machines and non-responive. That is not for me. I can be hooked up to a machine and still go to the same places. Part of the reason we are comfortable with a machine helping me breath is long use of Bipap. Technically I have been on life support since I needed Bipap 24/7. One difference now is that we take a suction machine everywhere I go to keep my lungs clear.
Another issue to consider is financial burden. We each have long term care insurance and mine covers the bulk of the expense. Once everything settled down Dave became comfortable handling nights. Then came the question of how much time we wanted outside care and how much we were comfortable spending. Without the insurance it would be much harder on Dave and a greater financial hit.
Even though there have been some rough nights I am happy I did it. Most of the time Dave is too, now that I usually sleep all night. We have 3 excellent caregivers regularly here each week so now the focus turns to Dave. We need to give him some time away. He had been going to see his Dad about every six weeks but that is an area of responsibility and not a break. Talking with our caregivers about their schedules we now know almost any night could be covered. He wants to go to his 50th class reunion in June, but he also needs at least a short break prior to that.
Rather a long winded post but there have been many things to think about. Now I am ready for some fun.
A great many conversations had set the stage for this decision. During the quarterly ALS clinics we always met with the lung doctor, Dr. Libby, and as my ability to breath without the Bipap decreased the question asked was did I want a tracheotomy. He was good at laying out the possible problems and the life style changes for both Dave and myself, not to be discouraging but rather to educate us. There are several things to consider. Often the surgery and recovery time will speed up the muscle loss. The need for 24 hour care is huge and something that could be a huge burden even with my long term care insurance. Another thing that has to be considered is that I will die of something other than ALS. One of my concerns was could I decide to turn off the vent when I was no longer able to go out and about. I was assured that it is not an issue to refuse or discontinue medical intervention.
After all these discussions it was much easier to make the series of decisions that led to the trach. First decision was do they take out the inflamed gall bladder or just make me comfortable and let nature take its course? That was an easy yes, there were too many unfinished things. Even the warning that I could very easily end up with a trach did not deter me. One of the really good things was Dr. Libby had hospital duty that week so he could talk with us knowing our feeling. He could be blunt in telling us the high probability that I would end up with a trach and on a ventilator.
I guess the question now is would I do it again. The answer is yes. As I said above this issue had been completely explored and thought out. As long as I could continue to be in my chair and go out and cause trouble I wanted a trach. That remains. Part of the mental image of someone on life support in lying in a hospital bed, hooked up to various machines and non-responive. That is not for me. I can be hooked up to a machine and still go to the same places. Part of the reason we are comfortable with a machine helping me breath is long use of Bipap. Technically I have been on life support since I needed Bipap 24/7. One difference now is that we take a suction machine everywhere I go to keep my lungs clear.
Another issue to consider is financial burden. We each have long term care insurance and mine covers the bulk of the expense. Once everything settled down Dave became comfortable handling nights. Then came the question of how much time we wanted outside care and how much we were comfortable spending. Without the insurance it would be much harder on Dave and a greater financial hit.
Even though there have been some rough nights I am happy I did it. Most of the time Dave is too, now that I usually sleep all night. We have 3 excellent caregivers regularly here each week so now the focus turns to Dave. We need to give him some time away. He had been going to see his Dad about every six weeks but that is an area of responsibility and not a break. Talking with our caregivers about their schedules we now know almost any night could be covered. He wants to go to his 50th class reunion in June, but he also needs at least a short break prior to that.
Rather a long winded post but there have been many things to think about. Now I am ready for some fun.
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