Doctor visit for Hospice re-certification went very well. No issues continuing Hospice care at all. He is fairly certain Gary also has an anoxic brain injury from low oxygen when he was sick in November. It fits his rapid decline and newer symptoms. He did some therapy on Gary's right arm to relieve rigidity and stiffness, and is coming back on Tuesday to work on his left arm and train us how to work with it so his arms don't become locked in curls (they have been getting stiffer and stiffer over the past week). GREAT guy. He hates skilled nursing facilities, too. We're well supported with him and Gary's new nurse. They really listen and care.
The Tuesday BM medication apparently helped internally more than it appeared to from an activity perspective. His bowel sounds have become more normal again. Hopefully he'll stay in better shape there. I'll opt for inpatient assistance if it diminishes again, because it is so uncomfortable for him and also hard on us from a care perspective. I've added acidopholus to his daily regimen, and Activia, to see if that will help, also.
Lung sounds diminished, still high heart rate, and blood pressure was low (low number was 58).
Keeping him hydrated and taking in a good amount of calories is going to be challenging.
Jan 23, 2014
Jan 22, 2014
January 22 - Crushing All Pills & BM Intervention
Visit with Patty Jo, Johnny and Joanie (Gary's sisters and brother-in-law) went well, though would have been just THAT much better if the Chargers had made it into the playoffs, but we recovered from that. JJ and Jerry came last Saturday and that was an awesome visit as well.
Medically, Gary is no longer able to swallow any pills at all. The nurse heard me about his continued increasing need for pain management and started him on Fentanyl pain patches that we only have to change every 3 days. We started that last Tuesday. Within 24 hours it was like Gary bounced back 3-4 weeks, became more talkative, alert and responsive. In the meantime, consitpation has become more and more of an issue and Gary can't go at all anymore unless he gets a suppository to boost the 2x/day, Senna and Lactulose and prune juice he's already getting daily. Yesterday we received a 10oz dose of magnesium citrate we had him drink that should have worked within 3 hours to clean out his system and that was ineffective in helping to move things more, or more comfortable, which was very surprising, actually. The doctor is coming tomorrow to re-certify Gary for his next 60 days of Hospice. They were batting around a hospice inpatient unit stay on Monday, and with the outcome from yesterday, the likelihood of him being moved there by Friday to help him get things moving is pretty high. Constipation is a classic complication of this disease and we now have so many more catch-22 issues. The high calorie drinks, and of course, the increased doses of pain medication that have been keeping him comfortable, are also adding to the constipation conundrum.
In the meantime, after all the activity yesterday with trying to get things moving, he's shutting down again. Gone back into his shell of unresponsiveness, rarely reacting or responding and back to staring past us. Only person he really made eye contact with last night was Sami. He was in the same shape this morning. It was so great to have even a small part of Gary back over the last 7 days. He was even almost smiling...what he couldn't do with his mouth was at least coming through in his eyes.
The ups and downs of this disease are brutal and harsh.
Medically, Gary is no longer able to swallow any pills at all. The nurse heard me about his continued increasing need for pain management and started him on Fentanyl pain patches that we only have to change every 3 days. We started that last Tuesday. Within 24 hours it was like Gary bounced back 3-4 weeks, became more talkative, alert and responsive. In the meantime, consitpation has become more and more of an issue and Gary can't go at all anymore unless he gets a suppository to boost the 2x/day, Senna and Lactulose and prune juice he's already getting daily. Yesterday we received a 10oz dose of magnesium citrate we had him drink that should have worked within 3 hours to clean out his system and that was ineffective in helping to move things more, or more comfortable, which was very surprising, actually. The doctor is coming tomorrow to re-certify Gary for his next 60 days of Hospice. They were batting around a hospice inpatient unit stay on Monday, and with the outcome from yesterday, the likelihood of him being moved there by Friday to help him get things moving is pretty high. Constipation is a classic complication of this disease and we now have so many more catch-22 issues. The high calorie drinks, and of course, the increased doses of pain medication that have been keeping him comfortable, are also adding to the constipation conundrum.
In the meantime, after all the activity yesterday with trying to get things moving, he's shutting down again. Gone back into his shell of unresponsiveness, rarely reacting or responding and back to staring past us. Only person he really made eye contact with last night was Sami. He was in the same shape this morning. It was so great to have even a small part of Gary back over the last 7 days. He was even almost smiling...what he couldn't do with his mouth was at least coming through in his eyes.
The ups and downs of this disease are brutal and harsh.
Jan 9, 2014
January 9 - Rallying for a Visit
Yesterday was an exceptional day, and we think he may be rallying for his sisters' visits this weekend. He suddenly was so on top of it, was able to generate enough volume to call me by name into the bedroom from the living room. Very articulate and was actually hungry and thirsty for the first time in weeks, and picky about what he was watching on TV. His vision was better because he was also waving us into the bedroom from the kitchen. His body is having a lot of trouble regulating his temperature. Cold and clammy one minute, low grade fever a few minutes later. It would be great for us and him if this could last even for a couple days. He did say good morning to me this morning, so maybe today will be a good one, too.
We're likely grasping at straws for small rays of sunshine here...but we're taking it moment by moment on this emotional rollercoaster.
Nurse is coming back today to check on him again.
We're likely grasping at straws for small rays of sunshine here...but we're taking it moment by moment on this emotional rollercoaster.
Nurse is coming back today to check on him again.
Jan 7, 2014
January 7 - Adding Morphine and Mucinex
Nurse came a day early yesterday at my request because Gary has now developed chest congestion on top of all the other complications. They delivered liquid mucinex for that yesterday, and, due to him now often having trouble swallowing pill medication, he is now taking liquid morphine as needed for shortness of breath and pain vs. Lortab for the break-through pain. So he's on time-release morphine plus liquid morphine as-needed. He rested very comfortably last night after dosing him with the mucinex, giving a breathing treatment and the liquid morphine. His pulse came down to normal and he was able to rest his head, which is now very rare.
Nurse comes once a week or more, and CNA's are coming 3 times a week for bathing and personal care. I have upped the caregivers to at least 4 days a week, 10 hours per day to assist us, and I'll likely up it to 10 hours a day at least 6 days a week, starting next week.
Still losing weight and not eating much at all--with the high-calorie nutrition drinks, we're only managing to get about 800 calories or so in every day before he refuses to eat. Moving him is becoming more and more of a challenge, and he's extremely slumped over whenever he's in a seated position, so we're about down to him staying in the hospital bed only, for comfort. We're completely set up with the DirecTV in the bedroom, though he doesn't focus on that much anymore, either.
He does know the Chargers are in the playoffs. Patty Jo, Johnny and Joanie are all coming this weekend...will be here Friday about Noon, and will spend the weekend. Staying at the Fiesta, but visiting and watching the Charger game with us, etc.
We're holding it together...Hospice is here for us whenever we need them if Gary goes into crisis. They have been VERY responsive and supportive to all our needs.
Nurse comes once a week or more, and CNA's are coming 3 times a week for bathing and personal care. I have upped the caregivers to at least 4 days a week, 10 hours per day to assist us, and I'll likely up it to 10 hours a day at least 6 days a week, starting next week.
Still losing weight and not eating much at all--with the high-calorie nutrition drinks, we're only managing to get about 800 calories or so in every day before he refuses to eat. Moving him is becoming more and more of a challenge, and he's extremely slumped over whenever he's in a seated position, so we're about down to him staying in the hospital bed only, for comfort. We're completely set up with the DirecTV in the bedroom, though he doesn't focus on that much anymore, either.
He does know the Chargers are in the playoffs. Patty Jo, Johnny and Joanie are all coming this weekend...will be here Friday about Noon, and will spend the weekend. Staying at the Fiesta, but visiting and watching the Charger game with us, etc.
We're holding it together...Hospice is here for us whenever we need them if Gary goes into crisis. They have been VERY responsive and supportive to all our needs.
Jan 1, 2014
Preview: Our Story (Beginning Symptoms)
Gary is 70, officially diagnosed with Lewy Body Dementia in September, 2012, though in retrospect, we now know symptoms first started rearing their ugly head as far back as 2003. The severe symptoms started revealing themselves in Nov/Dec 2011, starting with sleeping problems--the kind that can't be explained...getting up in the middle of the night and not being able to figure out how to lay back down on the mattress. I'd wake up in the middle of the night with Gary sleeping across my body, head or feet at a right angle to me with either laying across my legs, or to him climbing out of bed over top of me. Bizarre, like in a bad dream that neither one of us could make sense of the next morning.
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