Dec 9, 2013
December 9 - Back on Hospice
Gary is back on Hospice, and he is getting steadily worse. He still knows who we are, but is rapidly losing the ability to do anything at all for himself, and doesn't walk more than 10 steps with two people helping. I've been trying to convince family members to come see him while he will still know them, and is aware enough to know they're visiting. The dementia is taking a stronger hold, and the infections set him back. He's hard to keep hydrated and his appetite is down by a lot, so keeping weight on him is a challenge. We're keeping him home with people coming to the house when we can't be there, and Hospice is sending a nurse once a week minimum, plus nurse assistants 3 days a week to help with personal care--showering, etc, and he'll be getting massage therapy once a week. We've asked for any additional services we can get him to help him stay comfortable.
Nov 22, 2013
November 16-22: Turning Point - Hospitalization
Nov 16, Saturday: Gary woke up with labored breathing, completely disoriented with a fever this morning. We're very thankful for the great diagnostic care and very attentive ER doctor who helped us today. Gary is resting comfortably under observation tonight after a breathing treatment and two doses of IV antibiotics. Day turned out okay.
Nov 18, Monday: Grateful for prayers and antibiotics because both are working well for Gary. He was looking and behaving more alert today than he has in a the past few days. He's been diagnosed with a UTI, bronchitis and pre-pneumonia. I took the day off and got antibiotics to ward off my sinus infection, too. Starting to feel them work already. Hooray!!
Nov 19, Tuesday: Thankful for the experience and knowledge I have accumulated throughout Gary's illness. It allows me to understand and most efficiently use his benefits, and to break through the medical hierarchy and politics to get doctors and therapists to cooperate in Gary's best interest in spite of their egos and frequent tunnel vision. You simply can't believe how hard or how often I have to press for what should be the most common sense approach! It baffles the mind!!
Nov 20, Wednesday: Hard to find something to be thankful for today as it was a very hard day of Gary challenges. Another uphill battle. But, I am thankful that the Director of Case Management and the charge nurse have responded to my cries for help and tomorrow may be a better day. No guarantees, but it's a start.
Nov 21, Thursday: Last night I was dog tired, so neglected to keep up with my posting...yet, I was very thankful that Gary had a much better day. He was up out of bed with me for 3 hours, and then walked a short lap with the Physical Therapist, proving that he wasn't bedbound, as he was assessed the day before. Way to go, Gary!
This quote from LBDA means so much right now...
“You had many more years,” he said.
“I didn’t want them.”
“But they wanted you. Time is not something you give back. The very next moment may be an answer to
your prayer. To deny that is to deny the most important part of the future.”
“What’s that?”
“Hope.”
― Mitch Albom, The Time Keeper
Nov 22, Friday: Gary's coming home tonight! He was qualifed for and accepted to inpatient rehab, but we and Gary opted for home and we'll see how it goes. Creekside Home Health Care will be starting back up on Saturday, and we're regular frequent fliers with them, so the therapists know exactly how to help Gary get as close to pre-hospitalization status as possible.
Nov 18, Monday: Grateful for prayers and antibiotics because both are working well for Gary. He was looking and behaving more alert today than he has in a the past few days. He's been diagnosed with a UTI, bronchitis and pre-pneumonia. I took the day off and got antibiotics to ward off my sinus infection, too. Starting to feel them work already. Hooray!!
Nov 19, Tuesday: Thankful for the experience and knowledge I have accumulated throughout Gary's illness. It allows me to understand and most efficiently use his benefits, and to break through the medical hierarchy and politics to get doctors and therapists to cooperate in Gary's best interest in spite of their egos and frequent tunnel vision. You simply can't believe how hard or how often I have to press for what should be the most common sense approach! It baffles the mind!!
Nov 20, Wednesday: Hard to find something to be thankful for today as it was a very hard day of Gary challenges. Another uphill battle. But, I am thankful that the Director of Case Management and the charge nurse have responded to my cries for help and tomorrow may be a better day. No guarantees, but it's a start.
Nov 21, Thursday: Last night I was dog tired, so neglected to keep up with my posting...yet, I was very thankful that Gary had a much better day. He was up out of bed with me for 3 hours, and then walked a short lap with the Physical Therapist, proving that he wasn't bedbound, as he was assessed the day before. Way to go, Gary!
This quote from LBDA means so much right now...
“You had many more years,” he said.
“I didn’t want them.”
“But they wanted you. Time is not something you give back. The very next moment may be an answer to
your prayer. To deny that is to deny the most important part of the future.”
“What’s that?”
“Hope.”
― Mitch Albom, The Time Keeper
Nov 22, Friday: Gary's coming home tonight! He was qualifed for and accepted to inpatient rehab, but we and Gary opted for home and we'll see how it goes. Creekside Home Health Care will be starting back up on Saturday, and we're regular frequent fliers with them, so the therapists know exactly how to help Gary get as close to pre-hospitalization status as possible.
Aug 5, 2013
Day 5 after being Kicked off Hospice by Medicare
Gary was kicked off Hospice last Tuesday, so I went aggressive because he's been saying he's ready to get moving. So we moved him to a HealthSouth Desert Canyon acute rehab hospital last Wednesday. After the last horrible experience, with a "skilled" facility, none of us are willing to compromise his safety even if the place is safe, so we're tag-teaming his waking hours with each of us being with him in 4 or 5 hour shift throughout the day until he is discharged. The timing was perfect as Traci and Sami are both between commitments for a short time, anyway, then we can work his new routine around ours as school starts, etc. He's really doing very well! He will still be between wheelchair and walker, but he's regaining leg strength and is re-learning how to do some of his own dressing and grooming after his long therapy-less hospice hiatus, and the speech therapist is hooking us up with a Dynavox device to help him work through the vocal changes he's experiencing and maybe be a little less frustrated. We'll learn about how that will work, tomorrow. Finally some positive progress to a better plateau!
Jul 16, 2013
Documenting Gary's Decline - Trying Desperately to Keep Hospice's Assistance
Note to Gary's Hospice nurse, trying to document decline and keep him on Hospice care in spite of Medicare's new guidelines for diagnoses that ultimately kicked him off:
I just wanted to document some of my text messages to you, and add to them in an e-mail to contribute to the record of Gary's decline. I'm hoping you and the doctors have made the opportunity to become more familiar with Lewy Body Dementia? I've attached a helpful brochure that shows more detail on the nature of his disease. This brochure should help you immensely. It even covers his constant constipation. He has sincerely experienced all of these symptoms over time, including sensitivity to medications, as in his adverse reactions to Risperdal and Seroquel. Thankfully, the Zyprexa continues to agree with him.
I have several examples below, and will continue to document with you to assist in his care:
On Friday the 12th of July in the evening, Gary told me he hadn't spoken to our daughter Sami in a couple days and she had called and spoken to him at about 1 that afternoon. Our daughter Samantha is the absolute apple of his eye. He's never forgotten her visit or phone call before. I was deeply saddened at this development because of what it means for the progression of his disease process. He had forgotten who I was about a month ago, though I'd been sitting with him for over an hour when that occurred, but this was the first time involving our daughter.
On Saturday the 13th, Gary had spaghetti for dinner and was not clearing his mouth before each bite. He could not cut it enough to get it on his fork. His belief in his abilities is greater than his ability. For cutting his spaghetti I'm meaning he couldn't even cut it with his fork.
Gary's fluctuating cognition and abilities are caused by his disease. His decreasing ability to follow instructions on transfers is caused by it also. I know you said you have watched his transfers. As you've witnessed, it is very difficult to move him, because most of the time he has extreme difficulty coordinating his movements to assist, and most especially in the evenings due to his sundowning that's only being combatted by his medications. Even helping to shift his weight in bed, on a recliner, or in the seat of a vehicle (as Sami and I experienced on Saturday the 6th of July when we brought him home for a visit) is impossible for him. You have to make it happen for him. Also on that visit, we had to remind him several times to stay seated in his recliner when attempting to watch TV for an extended period of time. He would tell me he was going to get up and walk around, which we both know he hasn't been able to do since he's been on Hospice, but he can never remember that, and has no common sense or wisdom.
He has no improvement in any area except he is putting some weight back on. Everything else is getting worse. Have you also considered that he could be losing his ability to understand his appetite just as he can't correctly judge the size of a bite or the wisdom of continuing to stuff his mouth when he hasn't swallowed yet? I can't begin to tell you how many times I've had to remind him to swallow before taking another bite, or watched him hold fluids in his mouth for an extended period of time as he figures out how to swallow it.
He was delusional on Sunday night, the 14th, confusing his folded newspaper with his glasses case when unable to get his glasses into his shirt pocket. He also could not control his facial muscles enough to keep his mouth closed all evening. I also gave him a manicure that night, and he couldn't follow my instructions to wash his hands including under his nails. He would just sit with his hands near the faucet and I had to scrub and push his hands under the water to rinse.
We both know his decreased incidence of falls is us and the facility making changes--keeping him from being alone in his room, and constantly staying on top of him to remain seated or laying down. The fall prevention has nothing at all to do with improvements in Gary's cognition, common sense, or abilities.
In order to remove him from Hospice when his diagnosis is Lewy Body, you'd have to show his dementia is not getting worse, correct? When we talk this week, let's discuss what will be considered decline for Lewy Body Dementia. I firmly believe that over the next few weeks, you'll get the best indications of Gary's fluctuating condition if you are able to visit at different times of day. He is nearly always most confused and delusional toward the end of the day, and you'd also catch more of his swelling issues toward the end of the day. Both his ankles, and especially his left ankle and foot, are swollen every day. You and Dr. Singh aren't seeing it because you are there early in the day.
When the doctor re-evaluates him to continue on Hospice, they will have to take the fluctuations into account, and not just evaluate based on a single, one-shot visit. There is no way Gary's dementia is improving and I will continue to help you document decline as we progress through each benefit period.
Based on everything I share with you here and over the coming weeks, I will not ever accept that Gary is improving and should therefore be removed from Hospice. He is terminal. Nothing will change that. Changes in his care routine and methods should not play against him in his Hospice renewal.
I just wanted to document some of my text messages to you, and add to them in an e-mail to contribute to the record of Gary's decline. I'm hoping you and the doctors have made the opportunity to become more familiar with Lewy Body Dementia? I've attached a helpful brochure that shows more detail on the nature of his disease. This brochure should help you immensely. It even covers his constant constipation. He has sincerely experienced all of these symptoms over time, including sensitivity to medications, as in his adverse reactions to Risperdal and Seroquel. Thankfully, the Zyprexa continues to agree with him.
I have several examples below, and will continue to document with you to assist in his care:
On Friday the 12th of July in the evening, Gary told me he hadn't spoken to our daughter Sami in a couple days and she had called and spoken to him at about 1 that afternoon. Our daughter Samantha is the absolute apple of his eye. He's never forgotten her visit or phone call before. I was deeply saddened at this development because of what it means for the progression of his disease process. He had forgotten who I was about a month ago, though I'd been sitting with him for over an hour when that occurred, but this was the first time involving our daughter.
On Saturday the 13th, Gary had spaghetti for dinner and was not clearing his mouth before each bite. He could not cut it enough to get it on his fork. His belief in his abilities is greater than his ability. For cutting his spaghetti I'm meaning he couldn't even cut it with his fork.
Gary's fluctuating cognition and abilities are caused by his disease. His decreasing ability to follow instructions on transfers is caused by it also. I know you said you have watched his transfers. As you've witnessed, it is very difficult to move him, because most of the time he has extreme difficulty coordinating his movements to assist, and most especially in the evenings due to his sundowning that's only being combatted by his medications. Even helping to shift his weight in bed, on a recliner, or in the seat of a vehicle (as Sami and I experienced on Saturday the 6th of July when we brought him home for a visit) is impossible for him. You have to make it happen for him. Also on that visit, we had to remind him several times to stay seated in his recliner when attempting to watch TV for an extended period of time. He would tell me he was going to get up and walk around, which we both know he hasn't been able to do since he's been on Hospice, but he can never remember that, and has no common sense or wisdom.
He has no improvement in any area except he is putting some weight back on. Everything else is getting worse. Have you also considered that he could be losing his ability to understand his appetite just as he can't correctly judge the size of a bite or the wisdom of continuing to stuff his mouth when he hasn't swallowed yet? I can't begin to tell you how many times I've had to remind him to swallow before taking another bite, or watched him hold fluids in his mouth for an extended period of time as he figures out how to swallow it.
He was delusional on Sunday night, the 14th, confusing his folded newspaper with his glasses case when unable to get his glasses into his shirt pocket. He also could not control his facial muscles enough to keep his mouth closed all evening. I also gave him a manicure that night, and he couldn't follow my instructions to wash his hands including under his nails. He would just sit with his hands near the faucet and I had to scrub and push his hands under the water to rinse.
We both know his decreased incidence of falls is us and the facility making changes--keeping him from being alone in his room, and constantly staying on top of him to remain seated or laying down. The fall prevention has nothing at all to do with improvements in Gary's cognition, common sense, or abilities.
In order to remove him from Hospice when his diagnosis is Lewy Body, you'd have to show his dementia is not getting worse, correct? When we talk this week, let's discuss what will be considered decline for Lewy Body Dementia. I firmly believe that over the next few weeks, you'll get the best indications of Gary's fluctuating condition if you are able to visit at different times of day. He is nearly always most confused and delusional toward the end of the day, and you'd also catch more of his swelling issues toward the end of the day. Both his ankles, and especially his left ankle and foot, are swollen every day. You and Dr. Singh aren't seeing it because you are there early in the day.
When the doctor re-evaluates him to continue on Hospice, they will have to take the fluctuations into account, and not just evaluate based on a single, one-shot visit. There is no way Gary's dementia is improving and I will continue to help you document decline as we progress through each benefit period.
Based on everything I share with you here and over the coming weeks, I will not ever accept that Gary is improving and should therefore be removed from Hospice. He is terminal. Nothing will change that. Changes in his care routine and methods should not play against him in his Hospice renewal.
Apr 12, 2013
Day 6 on Hospice
Gary is on Hospice now. Fell and fractured his left hip socket and pelvis on March 23. Nearly lost him last week after a skilled nursing facility screwed him up badly. He had an infection from catheters they kept putting back in because they wouldn't give him the opportunity to relieve himself...kept trying to get him to go in a urinal, which is not possible with his dementia confusing him along with the pain from the fractures. The facility messed up his medicine...ongoing list of neglect. NEVER detected a fever until I found it the Friday night before I busted him out of there.
As of today, he's rebounding a bit, but in a lot of pain...antibiotics and correct medication dosages have started to kick in. He's back in his safe zone at Vintage Park Memory Care until we can get him home. Couldn't get him back at that wonderful place, though unless he was eligible for Hospice and they could get a Hospice waiver for his care because he is bed-bound. So sad...he's gone downhill so fast. Second fall since January. First one fractured a vertebrae.
As of today, he's rebounding a bit, but in a lot of pain...antibiotics and correct medication dosages have started to kick in. He's back in his safe zone at Vintage Park Memory Care until we can get him home. Couldn't get him back at that wonderful place, though unless he was eligible for Hospice and they could get a Hospice waiver for his care because he is bed-bound. So sad...he's gone downhill so fast. Second fall since January. First one fractured a vertebrae.
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