zoohouse
Senior member
- Joined
- Jan 14, 2013
- Messages
- 959
- Reason
- CALS
- Diagnosis
- 07/2012
- Country
- CA
- State
- B.C.
- City
- Salmon Arm
It has been over 2 months since I last visited the forum and I see that we have lost so many more of our dear warriors. I was having some difficulty with the losses, and then my own body gave out on me. I have been Tim's sole care giver since he was diagnosed in 2012, but have been blessed with all the very best equipment to help me with his care. I also had many church family come with regular meals and help for one day a week.
But alas my aging body started to wear out and 3 months ago I developed a very severe tendonitis in my right shoulder with a large calcium deposit that was displacing the tendon and giving me almost constant searing pain that made it impossible for me to do Tim's care. I had to hire private care to come in, and that began a whole new saga. I found the care mostly substandard and even dangerous at times, and Tim's condition started to deteriorate.
Finally Community Care got involved and decided that he qualified for palliative care in the home and they started covering the cost. We have a program here called the CSIL program that gives you funding to train and hire your own care givers. Well, it was implemented in record time, literally and I started to gather and teach our team. I have funding for 490 hours a month for care which is more than I need. My shoulder had a miraculous recovery (seriously, after my pastor prayed over it) and 3 weeks after one X-ray the calcium had totally absorbed. The radiologist, physiotherapist and my physician had never in their years seen such a thing.
But then I started to have bouts of tendonitis in my other joints where I was unable to open or close my hands, or I had to keep one or the other arm completely straight or I would lose the feeling in it. This has continues ever since, with one week being the longest time without one of my fingers, hands, wrists or knees being painful and swollen. Alas our pastor came over and prayed over both of us but I guess it is not his will at this time. But we have supper great care givers that have become like family to us, that come every day except Saturday which is OUR day where we get to be alone together. Usually my hands are both working so I can manage on my own, and by Sunday they are swollen and painful again, but we wouldn't give OUR day up for the world.
Tim is now having difficulty making a seal with his sip and puff ventilator, so by the afternoon I put him on his nasal pillows on biped, and then his face mask for the night. He is getting tired much more quickly now, and finds a lot of noise and movement around him extremely nauseating. I think he may have a bowel that is twisting on him these days as he developed nausea with salivating and pain in his lower abdomen, and only able to pass mucous from his rectum. I have been sucking everything out of his stomach and giving him an antacid with gravel, but last week that didn't even help. Thankfully I have IV equipment and solutions here and some IV medications from the last time he got sick, so started an IV and gave him a really good IV antiemetic (for vomiting and nausea) and a whiff of Hydromorphine for the pain. He dropped off for about 15 minutes and woke up completely pain free with no nausea. I
f the pain had continued I would have brought him to the hospital in case he needed an antibiotic, but aside from that there was nothing else to be done. He has been a lot better the last week, and in the last month 4 of his brothers have come and visited him for all over the States, and 3 of his 4 kids visited from Texas. Hopefully his oldest daughter will be getting here soon, as he would like to see her before he goes.
Sadly he not tolerating our outings as the least bit of chill or wind takes it out of him. We went up to our fishing lake with our best friends and his kids, and we nearly lost him. He was doing well, and he was all bundled up for warmth, and my girlfriend and I decided to canoe to the other side of the small lake to do some fishing. After about 45 minutes we could hear them screaming my name to hurry and come back. My friends husband was in his little motorized fishing boat near us and we both took of back to Tim. Trish and I paddled so hard that we beat the motor boat back. Trish is also a nurse and we were up to Tim quickly and discovered that he was losing the use of the muscles in his mouth from breathing in the cool air through his ventilator and was unable to make a seal on his mouth piece to inflate his lungs.
He was just getting enough in to maintain consciousness, and thankfully I had thought to bring his nasal pillows along with an ambubag (it is used in hospitals to assist breathing) I brought him into the Van and heated it up till it was nearly a sauna inside. I started stripping off all his blankets so the heat could get to him, and then almost started stripping down my clothes so I didn't die of heat stroke. 15 minutes later he was all warmed up and chatting up a storm. When we got home we had 15 perch for me to filet and we had a feast. Tim's kids had never had fish that they had caught themselves and loved it.
Our garden is spectacular, and Tim can see red House finches, Chickadees,etc. visiting the bird seed feeder, Pileated Wood Peckers, Nuthatches, and Flickers on the suet block feeder, and Humming birds on the feeder all out of the same window that faces our water fall feature. We are blessed for sure, but know that our time together will come to an end soon, and I hate the thought.
Take care friends, and I hope that this missive finds you all well, or as well as can be.
Paulette
But alas my aging body started to wear out and 3 months ago I developed a very severe tendonitis in my right shoulder with a large calcium deposit that was displacing the tendon and giving me almost constant searing pain that made it impossible for me to do Tim's care. I had to hire private care to come in, and that began a whole new saga. I found the care mostly substandard and even dangerous at times, and Tim's condition started to deteriorate.
Finally Community Care got involved and decided that he qualified for palliative care in the home and they started covering the cost. We have a program here called the CSIL program that gives you funding to train and hire your own care givers. Well, it was implemented in record time, literally and I started to gather and teach our team. I have funding for 490 hours a month for care which is more than I need. My shoulder had a miraculous recovery (seriously, after my pastor prayed over it) and 3 weeks after one X-ray the calcium had totally absorbed. The radiologist, physiotherapist and my physician had never in their years seen such a thing.
But then I started to have bouts of tendonitis in my other joints where I was unable to open or close my hands, or I had to keep one or the other arm completely straight or I would lose the feeling in it. This has continues ever since, with one week being the longest time without one of my fingers, hands, wrists or knees being painful and swollen. Alas our pastor came over and prayed over both of us but I guess it is not his will at this time. But we have supper great care givers that have become like family to us, that come every day except Saturday which is OUR day where we get to be alone together. Usually my hands are both working so I can manage on my own, and by Sunday they are swollen and painful again, but we wouldn't give OUR day up for the world.
Tim is now having difficulty making a seal with his sip and puff ventilator, so by the afternoon I put him on his nasal pillows on biped, and then his face mask for the night. He is getting tired much more quickly now, and finds a lot of noise and movement around him extremely nauseating. I think he may have a bowel that is twisting on him these days as he developed nausea with salivating and pain in his lower abdomen, and only able to pass mucous from his rectum. I have been sucking everything out of his stomach and giving him an antacid with gravel, but last week that didn't even help. Thankfully I have IV equipment and solutions here and some IV medications from the last time he got sick, so started an IV and gave him a really good IV antiemetic (for vomiting and nausea) and a whiff of Hydromorphine for the pain. He dropped off for about 15 minutes and woke up completely pain free with no nausea. I
f the pain had continued I would have brought him to the hospital in case he needed an antibiotic, but aside from that there was nothing else to be done. He has been a lot better the last week, and in the last month 4 of his brothers have come and visited him for all over the States, and 3 of his 4 kids visited from Texas. Hopefully his oldest daughter will be getting here soon, as he would like to see her before he goes.
Sadly he not tolerating our outings as the least bit of chill or wind takes it out of him. We went up to our fishing lake with our best friends and his kids, and we nearly lost him. He was doing well, and he was all bundled up for warmth, and my girlfriend and I decided to canoe to the other side of the small lake to do some fishing. After about 45 minutes we could hear them screaming my name to hurry and come back. My friends husband was in his little motorized fishing boat near us and we both took of back to Tim. Trish and I paddled so hard that we beat the motor boat back. Trish is also a nurse and we were up to Tim quickly and discovered that he was losing the use of the muscles in his mouth from breathing in the cool air through his ventilator and was unable to make a seal on his mouth piece to inflate his lungs.
He was just getting enough in to maintain consciousness, and thankfully I had thought to bring his nasal pillows along with an ambubag (it is used in hospitals to assist breathing) I brought him into the Van and heated it up till it was nearly a sauna inside. I started stripping off all his blankets so the heat could get to him, and then almost started stripping down my clothes so I didn't die of heat stroke. 15 minutes later he was all warmed up and chatting up a storm. When we got home we had 15 perch for me to filet and we had a feast. Tim's kids had never had fish that they had caught themselves and loved it.
Our garden is spectacular, and Tim can see red House finches, Chickadees,etc. visiting the bird seed feeder, Pileated Wood Peckers, Nuthatches, and Flickers on the suet block feeder, and Humming birds on the feeder all out of the same window that faces our water fall feature. We are blessed for sure, but know that our time together will come to an end soon, and I hate the thought.
Take care friends, and I hope that this missive finds you all well, or as well as can be.
Paulette
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