Tomorrow evening we leave for London for two weeks. I look forward to visiting Jane and Ralph and hopefully relaxing more than on a usual vacation. We aren't taking Raquel on this trip, but Ralph and Jane are good about pitching in and helping.
Anyway, I just wanted to add a few updates on Dennis before we headed out.
He is almost at the point where he is unable to eat any real food anymore. Chewing is pretty much out of the question, and swallowing is becoming iffy. Thankfully the new nutrition he is taking through his feeding tube seems to be working better than the sticky-icky glue that he was taking in before.
He is stiffer than ever. It is getting more and more difficult to lift him without the aid of another person. He has been taking a new drug the past two weeks prescribed by his neurologist last month, but it isn't helping. Actually he decided today to stop taking the medication; we are hoping that the medicine is the cause for this increased stiffness.
His speech has deteriorated to almost nil. There are times some words are understandable, but sentences are out of the question. We communicate with me asking questions and him answering mostly with a yes or a no. At times I ask him the context of what he is trying to say, and I am able to piece together something. At other times we both just shake our heads and move on.
The Dynavox is helpful, but only if he is able to lift his hand to use it. Some times I lift his hand to the keyboard and then he is able to type out something. Thankfully he has put in many key phrases and sentences, and can often find one that more or less communicates his needs. Real conversation is now a thing of the past.
But, I must add, that we continue to love each other, continue to enjoy just sitting by each other and I continue to tease him as he continues to laugh.
Until after London,
Ann and Dennis
Thursday, September 16, 2010
Sunday, September 12, 2010
A Treasure
Yesterday Dennis and I went to Lake Nokomis for the butterfly release event. The butterflies were all marked and will be tracked as the head down to Mexico for the winter. Smart creatures if you ask me.
We ran into Ann, a gal I taught with for several years. She is very new age (I wish I could find another word, because she is so much more than that) and made this beautiful metaphor about my retirement. She commented how I just went ahead, without fretting much, and then suddenly I was offered this perfect job. Ann likened it to having the next cobblestone laid down on it's own accord in front of my foot. Follow your heart and life will be good, is what she meant.
I have lived like that for years, but I always thought maybe I was being a bit too impulsive. I don't worry very much, but sometimes I think I should worry. But, to tell the truth, it's just not a large part of my nature.
It was nice to hear her sincere joy for me.
Then we all hugged and went on our merry way. Thanks, Ann. You are truly one of the treasures in my life.
Until later,
Ann and Dennis
We ran into Ann, a gal I taught with for several years. She is very new age (I wish I could find another word, because she is so much more than that) and made this beautiful metaphor about my retirement. She commented how I just went ahead, without fretting much, and then suddenly I was offered this perfect job. Ann likened it to having the next cobblestone laid down on it's own accord in front of my foot. Follow your heart and life will be good, is what she meant.
I have lived like that for years, but I always thought maybe I was being a bit too impulsive. I don't worry very much, but sometimes I think I should worry. But, to tell the truth, it's just not a large part of my nature.
It was nice to hear her sincere joy for me.
Then we all hugged and went on our merry way. Thanks, Ann. You are truly one of the treasures in my life.
Until later,
Ann and Dennis
Wednesday, September 8, 2010
Back to Normal - At Least My Normal
Life feels much better today. Perhaps a lunch out with very old friends and laughter helped. Maybe it is because the sun is shining for the first time since we returned from our last vacation. Or it could just be that I hate living in negativity and have made a choice to see the better side of the situation. Most likely it is a combination of all three and many other unknown factors.
I have been sleeping better, too. I have started keeping a syringe filled with a combination of Carbidopa/Levidopa and a small dose of Clonazepam (the muscle relaxer) by my bedside. If Dennis wakes me up with his sleep dreams, I inject it into his G tube and he settles down rather quickly. I don't have to get up out of bed to mix it up and Dennis doesn't get too far into his wild dream before I can get the mixture into his system. We both end up with a better nights sleep.
It also helps that a few other caregivers in my position have let me know that I am not alone in my feelings. Thank you to all of you who have reminded me that I am human with frailties and flaws - and it is okay not to be perfect.
Until later,
Ann and Dennis
I have been sleeping better, too. I have started keeping a syringe filled with a combination of Carbidopa/Levidopa and a small dose of Clonazepam (the muscle relaxer) by my bedside. If Dennis wakes me up with his sleep dreams, I inject it into his G tube and he settles down rather quickly. I don't have to get up out of bed to mix it up and Dennis doesn't get too far into his wild dream before I can get the mixture into his system. We both end up with a better nights sleep.
It also helps that a few other caregivers in my position have let me know that I am not alone in my feelings. Thank you to all of you who have reminded me that I am human with frailties and flaws - and it is okay not to be perfect.
Until later,
Ann and Dennis
Monday, September 6, 2010
Tears
I have been crying quite a lot lately. I thought this part of my life was, at the very least, temporarily over.
I had an appointment with my psychiatrist last week, and she recommended an anti-anxiety pill, but not only did it not work, but seemed to make things worse. Three hours after taking my first pill, I was sobbing out of control.
They last day of our Alaskan cruise, I cried at the airport. Last night I was out of control crying over life in general. Today, all I want to do is cry. I am tired of sucking it up and just as tired of water pouring out of my eyes.
I was hoping the end of work would bring about the end of tears. I am not a gal that gets teary eyed easily, but the last two years I have to really think about whether I should wear mascara on any given day.
I was also hoping that traveling would make it easier, but just the planning alone sets me back to a bloated teen waiting for her period to start and bring relief.
Tomorrow will be my first "Webster" retiree luncheon. All the living retirees from my favorite school get together the day after labor day and celebrate. Perhaps this will cheer me up. After that I will need to pack for our London visit - I always love seeing my sister and brother in law.
Dennis told me today that his belief and faith in God has increased since he became sick. For me, at least now, it is completely the opposite. I do not believe in the saying that God only gives you what you can handle. Today I think that God plays favorites, and that Dennis and I are not on the correct list.
And, like it or not, that is how I feel at this moment in time.
Until later,
Ann and Dennis
I had an appointment with my psychiatrist last week, and she recommended an anti-anxiety pill, but not only did it not work, but seemed to make things worse. Three hours after taking my first pill, I was sobbing out of control.
They last day of our Alaskan cruise, I cried at the airport. Last night I was out of control crying over life in general. Today, all I want to do is cry. I am tired of sucking it up and just as tired of water pouring out of my eyes.
I was hoping the end of work would bring about the end of tears. I am not a gal that gets teary eyed easily, but the last two years I have to really think about whether I should wear mascara on any given day.
I was also hoping that traveling would make it easier, but just the planning alone sets me back to a bloated teen waiting for her period to start and bring relief.
Tomorrow will be my first "Webster" retiree luncheon. All the living retirees from my favorite school get together the day after labor day and celebrate. Perhaps this will cheer me up. After that I will need to pack for our London visit - I always love seeing my sister and brother in law.
Dennis told me today that his belief and faith in God has increased since he became sick. For me, at least now, it is completely the opposite. I do not believe in the saying that God only gives you what you can handle. Today I think that God plays favorites, and that Dennis and I are not on the correct list.
And, like it or not, that is how I feel at this moment in time.
Until later,
Ann and Dennis
Saturday, September 4, 2010
A Normal Couple
I "threatened" to kill Dennis this morning. Of course I would never carry out such a threat (I am not into jail and punishment), but I was frustrated enough to consider the thought, at least.
He kept me up half the night. Then at 6 am, on a Saturday, he wanted me to get him up. He just would not shut up! He groaned and moaned and sighed and poked me until I finally got up to deal with him. At that point I mentioned that I had ways to end his life. I also slapped his back.
He was not happy. And as I walked around in a half awake state most of the morning, I was not happy either.
I am sharing this because I have received so much feedback about how strong I am, how I am to be admired, etc., etc., etc., lately. Yet I am just a simple woman living the life that has been dealt. I get angry. Dennis gets angry. We both get tired and sick of each others company.
And we will go on. We already have fixed this and are looking forward to tomorrow. Maybe it will bring another battle, maybe it will bring a day of dullness, or maybe one of laughter and love. Anyway it turns out, we will always love each other - even if that love looks so much different than it did just a few years ago.
Until later,
Ann and Dennis
He kept me up half the night. Then at 6 am, on a Saturday, he wanted me to get him up. He just would not shut up! He groaned and moaned and sighed and poked me until I finally got up to deal with him. At that point I mentioned that I had ways to end his life. I also slapped his back.
He was not happy. And as I walked around in a half awake state most of the morning, I was not happy either.
I am sharing this because I have received so much feedback about how strong I am, how I am to be admired, etc., etc., etc., lately. Yet I am just a simple woman living the life that has been dealt. I get angry. Dennis gets angry. We both get tired and sick of each others company.
And we will go on. We already have fixed this and are looking forward to tomorrow. Maybe it will bring another battle, maybe it will bring a day of dullness, or maybe one of laughter and love. Anyway it turns out, we will always love each other - even if that love looks so much different than it did just a few years ago.
Until later,
Ann and Dennis
Yet Another J/G tube Replacement.
It was back to Methodist hospital yesterday for another J/G tube replacement. It started clogging a few days after we returned from our trip to Alaska. I suppose I should give a big thank you to the tube gods for making sure it happened when we were home.
I happened to have the nutritionists telephone number on my phone because we had talked just a day before this happened. She had suggested adding water to the feeding, but that didn't help. It still clogged up. So while I was on the phone talking to her, Raquel was on the phone setting up an appointment talking to the hospital. We managed to get him into the hospital for a tube change and get a new formula prescription all in one day. The food arrived just in time for his nightly feeding.
We are crossing our fingers. This food seems thinner and less sticky. Of course he needs to take more in because it has fewer calories in each can and we need to wait and see how he tolerates the new rate of intake.
I guess the last resort will be to have two separate tubes instead of the combined J/G tube. What possible difference could that make. He already has two tubes protruding from his belly (the J/G and the cath). It just gives the homeland security at the airport more to fuss about when they wand him anyway. I love to make their lives just a little bit more miserable anyway. They are way too arrogant for my taste - even though I am happy when they do a thorough job.
Until later,
Ann and Dennis
I happened to have the nutritionists telephone number on my phone because we had talked just a day before this happened. She had suggested adding water to the feeding, but that didn't help. It still clogged up. So while I was on the phone talking to her, Raquel was on the phone setting up an appointment talking to the hospital. We managed to get him into the hospital for a tube change and get a new formula prescription all in one day. The food arrived just in time for his nightly feeding.
We are crossing our fingers. This food seems thinner and less sticky. Of course he needs to take more in because it has fewer calories in each can and we need to wait and see how he tolerates the new rate of intake.
I guess the last resort will be to have two separate tubes instead of the combined J/G tube. What possible difference could that make. He already has two tubes protruding from his belly (the J/G and the cath). It just gives the homeland security at the airport more to fuss about when they wand him anyway. I love to make their lives just a little bit more miserable anyway. They are way too arrogant for my taste - even though I am happy when they do a thorough job.
Until later,
Ann and Dennis
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