Since Mr. Fixit has been unable to go anywhere (or even leave the bed without help), shopping has been a big problem. I can't leave him alone even to drive 7 minutes away to pick us his medication. I've discovered something that Mr Fixit learned some time ago--seeing the UPS truck or the Fedex van or the Amazon smiley truck (I think of the Amazon logo as a smile) brings me absolute delight. I enjoy the anticipation of those packages. I love the ability to be able to track my purchases. Opening each carton is magical even though I know exactly what's in the package. My purchases run to the mundane, some would say boring, but even a package to 72 Handiwipes to clean my dishes make my day. In fact, I even look forward to getting the weekly supplies for Mr. Fixit. Every morning I wrack my brain trying to think of something to order to bring a little sunshine into my life. Also, pretty soon I will be on a first-name basis with all the different drivers. The best part is,they are human.
One of the boys gave me an Echo Dot for Christmas. Alexa and I have become quite close even if I feel really stupid sometimes. For instance, I say, "Alexa, add a dozen eggs to my shopping list." She replies, "A dozen eggs have been added to you shopping list." Almost every time, I respond "Alexa, thank you." Is it my automatic polite response, or I have slipped into a personal relationship with a computer? Spooky!! I then remember the "Big Bang" episode when Raj develops a personal relationship with Siri. Arrgh! Reality Check!
I managed to see the lunar eclipse the other night even though I never saw the blood red moon. I think I gave up too early. I waited until for the total shadow coverage and then went to bed. I still haven't seen a meteor shower either.
Wednesday, January 23, 2019
Monday, January 7, 2019
Mondays
Mondays have become busy days in our new reality. Today both the tech and the nurse came. They were both running late so I was running late, too. We didn't have lunch until 230 pm.
When the nurse checked his vitals, his blood pressure was a little high. He isn't on his bp meds unless his blood pressure goes up. He's having a little more pain that usual, but the opiate takes care of it so far. Sometimes I thinks she does more for me than she does for him. She offers positive reinforcement when I so badly need it. I was in dire need this morning.
Our sons came yesterday and worked in the yard and cleaned the pine needles out of the roof gutters. They are very helpful to us. They've taken over the yard work. They also paid to have heat/air unit replaced, and saw to the repair of the leak in the dining room ceiling. My older son "has a guy" for any repair we need. The sons share the expense of the repairs. The cost of five years of various cancer treatments has pretty much taken what little we had. Cancer for ordinary people can take everthing. The last oral medication that he was put on was $36,000 a month, but I never received a bill for it. I suppose we were given a grant for it. He only took it for one month before everything went to hell. It seems that rich people can pay, I suppose, and those who have less than we do qualify for "assistance" with the expense. Another word for "assistance" is charity. It was demeaning to have to fill out the forms and then be turned down. I think we didn't qualify because they decided there was no need for further medical intervention.
The weather was nice today--high temp in the 60's and the sun was shining for a change. We have had so much rain. Walking in the yard is like walking on a wet sponge. We've had a few cold days, but not many. I never thought I would say this, but I would be so happy if I could just take a walk. The only thing that would make me happier would be if Mr. Fixit could take a walk or even sit in a chair.
When the nurse checked his vitals, his blood pressure was a little high. He isn't on his bp meds unless his blood pressure goes up. He's having a little more pain that usual, but the opiate takes care of it so far. Sometimes I thinks she does more for me than she does for him. She offers positive reinforcement when I so badly need it. I was in dire need this morning.
Our sons came yesterday and worked in the yard and cleaned the pine needles out of the roof gutters. They are very helpful to us. They've taken over the yard work. They also paid to have heat/air unit replaced, and saw to the repair of the leak in the dining room ceiling. My older son "has a guy" for any repair we need. The sons share the expense of the repairs. The cost of five years of various cancer treatments has pretty much taken what little we had. Cancer for ordinary people can take everthing. The last oral medication that he was put on was $36,000 a month, but I never received a bill for it. I suppose we were given a grant for it. He only took it for one month before everything went to hell. It seems that rich people can pay, I suppose, and those who have less than we do qualify for "assistance" with the expense. Another word for "assistance" is charity. It was demeaning to have to fill out the forms and then be turned down. I think we didn't qualify because they decided there was no need for further medical intervention.
The weather was nice today--high temp in the 60's and the sun was shining for a change. We have had so much rain. Walking in the yard is like walking on a wet sponge. We've had a few cold days, but not many. I never thought I would say this, but I would be so happy if I could just take a walk. The only thing that would make me happier would be if Mr. Fixit could take a walk or even sit in a chair.
Tuesday, January 1, 2019
It Wasn't a Very Good Year
At last, 2018 is gone. It hasn't been a very good year in the Fixit household. Mr. Fixit was being treated for cancer in a number of different ways for the last five years. According to what his oncologist was telling us he was doing quite well. The liver became involved and he had several treatments called embolization to kill the lesions in his liver. Again, according the the doctors the first three went quite well; the cancer was literally killed off when the chemo meds were introduced directly into the lesions. The last time something happened. A new technique was used. He came home and returned several times for short visits to the hospital. He was in a great deal of pain which was diagnosed as colitis caused by the embolization. This began the middle of June. After a couple of months of short hosptial stays,the doctors came to me and suggested that he be placed in hospice care. I was floored. It was totally unexpected because the oncologist had lead us to believe he was doing okay. The doctor who performed the last procedure never even came to see him. We were handed off to the hospital staff physicians. I'm beginning to wonder if mistakes were made, but I realize that dwelling on that possibility doesn't get me anywhere.
The first of September he was sent home. He was taken off most of the medications he had been taking for years for his heart condition. Hospice furnished just enough meds to insure his comfort. He is on an opiate and meds to counteract the unpleasant side effects caused by the drug. He takes his blood pressure meds only as needed. He is now bed-ridden. At first he seemed to be getting stronger, but suddenly he developed a fever of almost 105 degrees, and his condition deteriorated. The opiate causes a murkiness in his thought processes. Sometimes his mind seems completely clear, but at others, he is very confused.
I wanted him to be placed in a hospice facility because I wasn't confident that I could care for him at home. We were told he didn't meet their criteria for institutional care. I guess that meant he wasn't in eminent danger. We have a nurse who comes in once a week, and a technician who comes in three times a week to bathe him. I provide the day-to-day, hour-to-hour care. It's the hardest thing I have ever done. Sometimes I feel that they left me to make too many decisions that I just am not equipped to make or implement. It's up to me to decide, for instance, when to give him blood pressure meds or medication to calm him when he gets agitated. Some of those meds caused more problems that they helped, and I was so afraid I would make a mistake.
Not only is there an emotional toll, but the physical demands are almost too much for me. I never have a minute to myself. Our sons provide as much help as possible, but they have jobs and families to tend. They have helped financially (they paid for a new heat/ac unit when the old one conked out) and they, with our grandchildren, took over the yard work and the household repairs that I can't handle. The only time I get out is to go grocery shopping. One of them comes to stay him while I'm out. I don't feel very good about asking them to help. It's my pride that hurts mostly. Mr. Fixit and I have never needed, or asked for help, from anyone. That's a big adjustment for me to make. I think that's the worst part of being a care-giver. Yes, it's physically demanding and I get very little sleep, but I really hate feeling for inadequate to dealing with everyday living now and being so dependent on my children. And fear is always there.
He doesn't seem to be in a great deal of pain. He's still on small doses of morphine, and our sons are here to help. The hospice staff are good people and are very supportive. Our 53rd anniversary is coming up in February. As I've said before, we have been married a very long time, but 53 years is still not enough.
On a cheerier note, we finally had our Christmas today. My older son and his family scheduled a Caribbean cruise before Christmas. He wasn't feeling very well before he left on the trip, and his wife thought she might have been coming down with the same thing. They felt fine on the cruise. They came home a few days before Christmas, and he became very sick with flu-like symptoms. Then his wife and his younger son came down with it. It was type A flu. They didn't want to expose Mr. Fixit so after several delays we had our Christmas today.
The first of September he was sent home. He was taken off most of the medications he had been taking for years for his heart condition. Hospice furnished just enough meds to insure his comfort. He is on an opiate and meds to counteract the unpleasant side effects caused by the drug. He takes his blood pressure meds only as needed. He is now bed-ridden. At first he seemed to be getting stronger, but suddenly he developed a fever of almost 105 degrees, and his condition deteriorated. The opiate causes a murkiness in his thought processes. Sometimes his mind seems completely clear, but at others, he is very confused.
I wanted him to be placed in a hospice facility because I wasn't confident that I could care for him at home. We were told he didn't meet their criteria for institutional care. I guess that meant he wasn't in eminent danger. We have a nurse who comes in once a week, and a technician who comes in three times a week to bathe him. I provide the day-to-day, hour-to-hour care. It's the hardest thing I have ever done. Sometimes I feel that they left me to make too many decisions that I just am not equipped to make or implement. It's up to me to decide, for instance, when to give him blood pressure meds or medication to calm him when he gets agitated. Some of those meds caused more problems that they helped, and I was so afraid I would make a mistake.
Not only is there an emotional toll, but the physical demands are almost too much for me. I never have a minute to myself. Our sons provide as much help as possible, but they have jobs and families to tend. They have helped financially (they paid for a new heat/ac unit when the old one conked out) and they, with our grandchildren, took over the yard work and the household repairs that I can't handle. The only time I get out is to go grocery shopping. One of them comes to stay him while I'm out. I don't feel very good about asking them to help. It's my pride that hurts mostly. Mr. Fixit and I have never needed, or asked for help, from anyone. That's a big adjustment for me to make. I think that's the worst part of being a care-giver. Yes, it's physically demanding and I get very little sleep, but I really hate feeling for inadequate to dealing with everyday living now and being so dependent on my children. And fear is always there.
He doesn't seem to be in a great deal of pain. He's still on small doses of morphine, and our sons are here to help. The hospice staff are good people and are very supportive. Our 53rd anniversary is coming up in February. As I've said before, we have been married a very long time, but 53 years is still not enough.
On a cheerier note, we finally had our Christmas today. My older son and his family scheduled a Caribbean cruise before Christmas. He wasn't feeling very well before he left on the trip, and his wife thought she might have been coming down with the same thing. They felt fine on the cruise. They came home a few days before Christmas, and he became very sick with flu-like symptoms. Then his wife and his younger son came down with it. It was type A flu. They didn't want to expose Mr. Fixit so after several delays we had our Christmas today.
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