Nov 20, 2014
Day 20 - 3 Hours of Quality Time and Companionship
Spent 3 hours with Gary after work today. At dinner he passed on
pork stir fry for a couple small slivers of Domino's pizza, and seemed
to enjoy them. We watched a little Thursday Night Football, then when I
left he had fallen asleep. Came home and caught up on American Horror
Story and then watched the Scandal fall finale with Sami. Great wrap up
to a good day.
Nov 19, 2014
Thankful for Good Friends Posting Helpful Research - Nov 19
So thankful for good friends who try to encourage, and prompt discussions about needed changes to our Medicare hospice benefits from end-of-life patients. This article was posted on November 17 by the National Hospice and Palliative Care Organization.
More Research Validates the Benefits of Hospice; What Will It Take to Change End-of-Life Care in America?
This research is promising for cancer patients, however, dementia continues to be a constant challenge with CMS, and hospice follows suit. I wonder how long until lawsuits come up for CMS' discrimination against dementia patients? We are unbelievably constantly at risk of being kicked off because he is dementia even in his current state of being extremely underweight and not improving...but simply being momentarily stable. Also...medications that have been covered for a year, that assist with symptoms directly related to his decline, are suddenly being excluded, meaning we will have to pay for them outside Hospice, on Gary's Medicare Part D drug coverage. Unbelievable.
The other piece that plagues us under the Hospice umbrella is that NO meds have been specifically proven to help for Lewy Body Dementia, so all are at risk of being experimented with for gradual dose reduction at any time, even in his fragile state. There is no hospice exception for these reductions. So unfair. If you can prove they have benefit in your case and you are on hospice, there should be exceptions for hospice patients...instead, reductions must be tried simply because nothing that happened prior to admission in your current facility counts. This is so unjust!
Nov 18, 2014
Day 18 - A Peaceful Evening after an Agitated Day
Happy Tuesday. Good day at work, then off to see Gary, who was
very deeply asleep after an apparently highly anxious day. Sat with him
for a while, visited with the staff, then left to go home. Glad he was
so relaxed since the last few days we've seen him have been
semi-anxious. Good to see him resting peacefully.
Nov 17, 2014
Changing it up with a New Work Schedule Allows Earlier SNF Visits - Nov 17
It's a Monday...what can I say. I'm very fortunate to be allowed to telecommute in my job 95% of the time, but there are challenges 6 months out of the year when Nevada changes to daylight savings time and Arizona doesn't. So, I have tried something new this year and am still enjoying my new 7-4
schedule to stay in sync with my Arizona co-workers since the time
change. Snagging prime parking spaces and missing all the traffic before
all the Vegas employees come in isn't shabby, either...plus having more
evening left after the time change doesn't suck. Feels like a crazy
world with my phone, work laptop and Jeep clock in AZ and the rest of my
life in NV, but crazily, it's kind of all settling in by week 3. This is also very helpful to get to see Gary earlier in the evenings!
Nov 16, 2014
Nov 16 - Caregiver Recharge
Took a full day off to stay home all day today to help myself
feel better grounded, and felt completely guilty for it. I did get
caught up on a lot of things I needed to do around the house,
though...like have clean clothes, cook a real brunch and dinner for me
and Sami, plus hospice's art therapist visited for the first time in a
month and started us on a self-designed sewing/needlepoint project.
Never done anything like this before...latchhook is the closest I've
done. This will be interesting!
A Plea for Input from my Support Group
I posted this in my online support group on my depressed Sunday off from visiting my husband and received so much support and empathy from my caregiving friends:
Sorry for the length of this: I don't even know how to express this because it feels awful. My two adult daughters and I have been standing tirelessly by my husband throughout his illness, which became severe starting early 2012 and has been a rapid, evil decline. He was separated from us for 9 months in 2013 because of injuries/recoveries from falls. We were desperate to get him home then...I gutted and remodeled our bathroom so he could come home, and we were successful with his care at home for 9 months from Sept '13 through June '14.
Sorry for the length of this: I don't even know how to express this because it feels awful. My two adult daughters and I have been standing tirelessly by my husband throughout his illness, which became severe starting early 2012 and has been a rapid, evil decline. He was separated from us for 9 months in 2013 because of injuries/recoveries from falls. We were desperate to get him home then...I gutted and remodeled our bathroom so he could come home, and we were successful with his care at home for 9 months from Sept '13 through June '14.
His care became very intense, so we moved him to SNF 6/30. We've been
visiting him regularly from July 'til now, but suddenly it seems we have
all reached a burn-out point. Our oldest daughter (due to a new
relationship) now only goes to see him once a week. I go only
every-other day at best over the past couple weeks. Our youngest, 19 and
a dedicated nursing student, only gets there every couple days, also.
We love him and miss the old him. He's well cared for in his memory care unit, but bedridden and miserable, minutes from bedsores, in and out of sleep, in and out of agitation and grouchiness, and personally, I'm almost feeling after 3 years of advocacy, there's nothing left for me to do for him. I'm broken. I don't want to be shutting down, but I feel I am. I need time to myself, I need to clean my house, I need to have a life, too! I know I can't be the only one to reach this point, can I? I feel worse, though, that I and his daughters seem to all be "moving on" nearly at the same time! I'm so sad, I just want to sleep all the time and I feel so very alone...
Among the responses I received from many supportive and empathetic LBD sufferers and caregivers was this helpful link:
We love him and miss the old him. He's well cared for in his memory care unit, but bedridden and miserable, minutes from bedsores, in and out of sleep, in and out of agitation and grouchiness, and personally, I'm almost feeling after 3 years of advocacy, there's nothing left for me to do for him. I'm broken. I don't want to be shutting down, but I feel I am. I need time to myself, I need to clean my house, I need to have a life, too! I know I can't be the only one to reach this point, can I? I feel worse, though, that I and his daughters seem to all be "moving on" nearly at the same time! I'm so sad, I just want to sleep all the time and I feel so very alone...
Among the responses I received from many supportive and empathetic LBD sufferers and caregivers was this helpful link:
Who Cares For The Caregiver?
His pain, agitation and anxiety are mine. There is no separation. We are the same person.
Nov 15, 2014
Time With our Daughers Plus a Nice Visit on Day 15
Saturday! My favorite day of the week! Met our oldest daughter and had a wonderful brunch at Brio, then
shopped together for a bit (Old Navy). Had a long afternoon/evening
visit with Gary, then welcomed our youngest college sophomore home as a fully initiated Alpha Gamma Delta girl! A fun relaxing weekend day!
Nov 10, 2014
Nov 10 - Divorce Anulled Overnight
Was happy to get to Gary just before dinner tonight and find out
that we are happily married again. WHEW! I arrived Sunday afternoon and
discovered I was his ex-wife and we had been divorced for quite some
time because I had "given up" on him a long time ago. Apparently all our
reassurances that wasn't true helped, because our divorce was annulled
overnight.
Nov 9, 2014
Nov 9 - Safely Home after my Respite Weekend
Grateful for a safe drive home...and thanks to my oldest daughter and her boyfriend for keeping our baby girl company on Saturday night, and for giving her a great send-off for her
CRUSH sorority/fraternity prom while I took a short break in St. George with my sister!
Also thankful for a great afternoon meeting today, working through
strategic medical thinking with Gary's hospice reflexologist. Now home,
relaxing, unpacking and getting ready for my week...PUSH...only 2 weeks
'til Thanksgiving break!!
Another Setback in Support - Medicare Dictating Changes in Hospice Medication Coverages
Hospice contacted me Friday and notified me that my husband's Albuterol Sulfate for his nebulizer breathing treatments 2x/day, and his Lactulose for assistance with bowel movements (which he only has every 4-7 days WITH Lactulose included in his constipation regimen) are both no longer covered under the Medicare Hospice changes! At least I was notified in time to plan for his 2015 Part D drug plan during open enrollment, thank goodness. But seriously...both are excluded now after 11 months of them being included, because Medicare is becoming so strict about Hospice medications ONLY being related 100% to the primary terminal diagnosis. So his Aspiration and COPD complications get left behind along with his constipation complications that have led to an obstruction WITH Lactulose while on Hospice...UNFAIR and ridiculously short-sighted!! Tripping over dollars to save dimes...so typical!!
Calling and writing our congressional representatives would contribute to a potential long-term solution, but in the short term, as advocates, we need to point out every tiny sign of decline that could help hospices recognize and keep within the stricter limitations of the changing guidelines.
Calling and writing our congressional representatives would contribute to a potential long-term solution, but in the short term, as advocates, we need to point out every tiny sign of decline that could help hospices recognize and keep within the stricter limitations of the changing guidelines.
Nov 8, 2014
Nov 7 & 8 - A Wonderful Break to St. George/Zion National Park with my Sister!
Safe travels up to St. George to visit my sister, complete with an afternoon jaunt to Zion National Park for lunch and a
tour. Now off to dinner on the town. A much needed break from my
routine!
Nov 5, 2014
Day 5 - Catching Up on Overdue Auto Maintenance
Nov 5 - Day 5 became car day. Oil changed, tires rotated and annoying tire
inflation light OFF from the recent rapid temperature drop. I HATE
that... Priced tires for my youngest daughter's car and they will be installed on Saturday morning. Feels good and I am
grateful to have car maintenance issues off my list for a brief moment.
Nov 4, 2014
Holding Hands - Day 4
Tonight I am grateful for a productive day at work, and for my
visit with Gary this evening at the nursing facility. Though he was very quiet and sleepy, and
didn't eat much, he still sought out my hand to hold when I told him I
loved him and missed him at home. Priceless.
Nov 3, 2014
Day 3 - Progress With Agitation Relief
Thankful for a couple milestones today on the challenging road of skilled nursing /hospice politics:
The first is the facilities documentation was finally solid enough that we got the attention of the hospice nurse practitioner that Gary's been having more frequent and intense episodes of agitation that have required doses of Klonopin (clonazepam) to relieve. This is a result of me and my family pressing for his safety and comfort with the nursing facility staff, enough to get their attention and document his agitation and restlessness to help keep him comfortable.
Second milestone is, not only did I receive a call from the hospice nurse practitioner asking my consent to increase Gary's Klonopin availability to 3x/day from 1x/day, but 45 minutes later, the facility also called me to double-check they had my consent. Breakthrough monitoring on behalf of both entities!
So thankful for the progress we've made!
The first is the facilities documentation was finally solid enough that we got the attention of the hospice nurse practitioner that Gary's been having more frequent and intense episodes of agitation that have required doses of Klonopin (clonazepam) to relieve. This is a result of me and my family pressing for his safety and comfort with the nursing facility staff, enough to get their attention and document his agitation and restlessness to help keep him comfortable.
Second milestone is, not only did I receive a call from the hospice nurse practitioner asking my consent to increase Gary's Klonopin availability to 3x/day from 1x/day, but 45 minutes later, the facility also called me to double-check they had my consent. Breakthrough monitoring on behalf of both entities!
So thankful for the progress we've made!
Nov 2, 2014
Thankful for Our Empathetic Hospice Volunteer/Friend on Day 2
Thankful for a good visit with Gary today, and for the wonderful, empathetic conversation with Gary's volunteer reflexology therapist from hospice. We are so thankful she found Gary in the inpatient unit in March, continued to treat him in our home, and now works with him at the Veterans Home. She has helped him so very much with the relaxing therapy regimen she provides him every Sunday. She also helps me tremendously with her understanding of what we're experiencing since her husband was also afflicted with Lewy Body Dementia. She is a ray of light for us.
Nov 1, 2014
Day 1 of 30 Days of Thankfulness 2014
Last year throughout November, I posted a personal daily message of gratitude to friends and family. This year, I carry on that tradition, and am thankful to also share these messages with you.
Day 1 of November Thankfulness: Sincere thanks to our friends and family. For those who aren't certain how to help us get through our difficult times with Gary...just check in on us every once in a while to make sure we're okay. It's so wonderful knowing you're still there, available to listen and help when we might need you. Thanks for sticking with us through this long illness and our trials.
Oct 3, 2014
Unexpectedly High Weight Loss - Harsh Reality Check
Went to spend my evening with Gary last night. I arrived in the middle of dinner, to our youngest daughter assisting him. He ate 100% of his dinner...feeding himself a lot of it. We're still experiencing random high levels of lucidity ranging down to coma sleeps. In the midst of us sitting there, his main evening caregiver asks me if 115 pounds sounds about right in relation to his last weigh-in.
I am initially shocked to hear this number, though I have seen him with his shirt off earlier in the week, and all ribs, his spine and the concave areas under his collar bone are very prominent. So recovering mentally and putting this into perspective, I answer that, yes, 115 is probably highly likely based on his Sept 5 previous weight of 126. Discussing it further with her, it's probably the most accurate weight we've had since admission, because she weighed him with a lift with just him and no wheelchair to subtract or pump mistakenly left in the chair with him, that easily adds 1.5 lbs. What a shock, though, overall, considering he's been eating more these past two weeks since his move to the Memory Care unit.
Depressingly, what this is telling me is that he is no longer absorbing nutrients from his food and is losing ground in spite of eating. I was hopeful his increased intake (including the fun popcorn snacks we bring that I posted about Monday) might be helping him gain some ground or offset some of the meals he misses when in his coma sleeps, but not so.
Add to that the fact that we decided to confirm his weight before bed, to compare the hoyer lift weight to an actual scale. We prepare a 3-person plan to put him in the pre-weighed transport chair, connecting his tank oxygen in a cart and carry his CADD pump, plus keep him upright, while pushing him out to the scale. Because he's sitting up to transfer, he rapidly becomes nauseated and sick to his stomach, losing part of his dinner because he ate too much and his body is rejecting it. So very sad. He is alert and speaking to us during this entire process. His stomach calms down, we make the transfer and take him out. The scale weight is 117, but with the big meal and all the fluids he took in at dinner, we guess he's about 116...still a 10 pound drop in less than 30 days.
Frightening and discouraging. Even though we have been on Hospice for 10 months, the shock of each step and phase is so real and brings a new sense of finality. How much more can he lose and still survive? 115 pounds is SO light on his 6' frame... :-(
I am initially shocked to hear this number, though I have seen him with his shirt off earlier in the week, and all ribs, his spine and the concave areas under his collar bone are very prominent. So recovering mentally and putting this into perspective, I answer that, yes, 115 is probably highly likely based on his Sept 5 previous weight of 126. Discussing it further with her, it's probably the most accurate weight we've had since admission, because she weighed him with a lift with just him and no wheelchair to subtract or pump mistakenly left in the chair with him, that easily adds 1.5 lbs. What a shock, though, overall, considering he's been eating more these past two weeks since his move to the Memory Care unit.
Depressingly, what this is telling me is that he is no longer absorbing nutrients from his food and is losing ground in spite of eating. I was hopeful his increased intake (including the fun popcorn snacks we bring that I posted about Monday) might be helping him gain some ground or offset some of the meals he misses when in his coma sleeps, but not so.
Add to that the fact that we decided to confirm his weight before bed, to compare the hoyer lift weight to an actual scale. We prepare a 3-person plan to put him in the pre-weighed transport chair, connecting his tank oxygen in a cart and carry his CADD pump, plus keep him upright, while pushing him out to the scale. Because he's sitting up to transfer, he rapidly becomes nauseated and sick to his stomach, losing part of his dinner because he ate too much and his body is rejecting it. So very sad. He is alert and speaking to us during this entire process. His stomach calms down, we make the transfer and take him out. The scale weight is 117, but with the big meal and all the fluids he took in at dinner, we guess he's about 116...still a 10 pound drop in less than 30 days.
Frightening and discouraging. Even though we have been on Hospice for 10 months, the shock of each step and phase is so real and brings a new sense of finality. How much more can he lose and still survive? 115 pounds is SO light on his 6' frame... :-(
Sep 29, 2014
Lucidity Fluctuations Continue - Relieved of Some Guilt
Pleased as punch, and was absolutely as lucid as his eyes look in this picture.
Since he was so aware, I decided to go ahead and ask about how he feels being in the facility vs. being at home. He came out and said he is happy to stay there because he doesn't want to be a burden to us. He also let me know he likes the memory care and his new room and caregivers much more than his old room that had only a couple attentive caregivers. I was so thankful to hear both of these nuggets of information from him. So blessed to have these moments. I now am relieved of the guilty burden of deciding to move him out of our home. Now I can truly free my mind and just enjoy every second of his company we have remaining...guilt-free. A wonderful day all around...
Sep 28, 2014
Conundrum of End-of-Life Care in a Skilled Nursing Facility
I have had the opposite ends of both spectrums in my husband's skilled nursing facility for his end of life care. He was first in an acute wing, and they would leave him alone too much, not checking to see if he's awake so he would miss opportunities to be out in his geri chair and would miss potential to eat anything at all on many days. The first 60 days, they had little documentation of lucidity because of this, so they started ripping his cognitive meds away because the nurse practitioner had no record of him being conscious--even though we were reporting any lucidity when we visited, it wasn't being documented.
This week we moved him to the memory care unit (my daughter pulled me out of the weeds and suggested this, and thank goodness she did). However, the first day he spent 9 hours in the geri chair because he had an unusually alert day, and the staff of the new unit didn't know how long he'd been up in the old unit. I've now made a visit or phone call to each shift (except nights) explaining how he's normally been, and how easily he is over-stimulated and they seem to be listening. Problem was...he was so alert the first 3 days, they couldn't imagine him being comatose. Well...yesterday it all caught up to him and he was unrousable from after lunch around 1 to after I left at 7p. They were astonished, but understood now that I was serious about him usually sleeping, unable to be awakened, 20+ hours a day. They did actually go back and read his chart from the other unit, also. They are empathetic to the emotional rollercoaster this surge of activity put us through at that same time they are amazed at his wide-swinging changes in capabilities.
What I have done to try to break through these barriers, if you don't get anywhere with the staff or charge nurses, go to the nurse manager or director of nursing with your concerns. I've gone as far as the administrator. Also request your hospice nurse to educate the charge nurses and nurse manager and/or director of nursing to have them communicate down to the front-line care staff about end-of-life status. The facility's social worker may be able to help you make some headway, also.
Historically now, throughout my husband's care, the best care he's received has been in assisted living memory care, or in skilled nursing memory care. Special individuals take on memory care...often those who have experienced a loved-one with a memory problem. If members of the medical community don't choose to work with geriatric/dementia care, they are extremely difficult to educate and work with.
This week we moved him to the memory care unit (my daughter pulled me out of the weeds and suggested this, and thank goodness she did). However, the first day he spent 9 hours in the geri chair because he had an unusually alert day, and the staff of the new unit didn't know how long he'd been up in the old unit. I've now made a visit or phone call to each shift (except nights) explaining how he's normally been, and how easily he is over-stimulated and they seem to be listening. Problem was...he was so alert the first 3 days, they couldn't imagine him being comatose. Well...yesterday it all caught up to him and he was unrousable from after lunch around 1 to after I left at 7p. They were astonished, but understood now that I was serious about him usually sleeping, unable to be awakened, 20+ hours a day. They did actually go back and read his chart from the other unit, also. They are empathetic to the emotional rollercoaster this surge of activity put us through at that same time they are amazed at his wide-swinging changes in capabilities.
What I have done to try to break through these barriers, if you don't get anywhere with the staff or charge nurses, go to the nurse manager or director of nursing with your concerns. I've gone as far as the administrator. Also request your hospice nurse to educate the charge nurses and nurse manager and/or director of nursing to have them communicate down to the front-line care staff about end-of-life status. The facility's social worker may be able to help you make some headway, also.
Historically now, throughout my husband's care, the best care he's received has been in assisted living memory care, or in skilled nursing memory care. Special individuals take on memory care...often those who have experienced a loved-one with a memory problem. If members of the medical community don't choose to work with geriatric/dementia care, they are extremely difficult to educate and work with.
Sep 27, 2014
The Rally/Surge is Gone - Hoping Temporarily
Sep 25, 2014
Improved Environment, Attention and A Great Day 2 in the Memory Care Unit!
Sep 24, 2014
Namenda Reductions and a Hopeful Move to Memory Care
My husband is now down 65 lbs. on a 6' frame (below 125) since Nov 2013. For the past 6 months he's been extremely unresponsive, in and out of coma-like states and completely reliant on caregivers for all needs. Due to Medicare's CMS regulations for skilled nursing facilities, they've been dropping his Namenda doses, and starting this past Tuesday, he is no longer on Namenda. The first 2 dosage drops resulted in increased tremors, muscle spasms and hallucinations, which was causing me concern that his life without Namenda would have disastrous results. We aren't sure what will happen, but are hopeful for the best...
Today, the day after his Namenda completely stopped, he was transferred into the memory care unit at his nursing facility, from an acute wing, to the bright, cheerful room in this photo. This move was from a very small room that resembled a large closet on his side, where his roommate wouldn't share the light and the staff left him alone most of the time. New room is a wonderful improvement in atmosphere...hopeful the care will improve and be more empathetic to his end-of-life and his dementia symptoms, which seem to have been discounted on the acute unit.
We'll see...
Today, the day after his Namenda completely stopped, he was transferred into the memory care unit at his nursing facility, from an acute wing, to the bright, cheerful room in this photo. This move was from a very small room that resembled a large closet on his side, where his roommate wouldn't share the light and the staff left him alone most of the time. New room is a wonderful improvement in atmosphere...hopeful the care will improve and be more empathetic to his end-of-life and his dementia symptoms, which seem to have been discounted on the acute unit.
We'll see...
Aug 25, 2014
2nd Care Planning Meeting in 3 weeks...
Today's meeting was about Gary's decline. It was all business, all non-empathetic, and all about cutting back on Gary's tried and true cognitive medication regimen that it took us 2 years to balance. Now that he's in a facility, he's become the victim of Medicare's regulations for "gradual dose reductions". He is in full decline and likely won't outlive the completion of these experiments. Hospice has been my ally in keeping him on these meds so far, for his cognitive comfort and stability. This Nurse Practitioner is now going to mix it all up and play god with Gary's cognition. Gary is on Namenda XR 28mg, and 13.3mg Exelon patches. They are starting with his Namenda XR down to Namenda IR 20mg (10mg 2x/day) for two weeks. That change was going to have to occur anyway, because the manufacturer has his Namenda XR on backorder right now. He will be taken down to 10mg (5mg 2x/day) for two weeks, then completely off for two weeks.
I'm hoping to find a way to leave his Exelon alone. He's already had that dose dropped in the past, and it turns him into a vegetable. We have a potential 6 weeks before the Exelon reduction would have to begin...it buys me time to find a way to convince them to keep him steady and let him pass away comfortably. I also know I've read, and need to find, the clinical studies that show when you drop the Exelon, if you find the reaction to be adverse and you re-start it, most times the patient never returns to their previous level of cognition. Gary isn't strong enough to get through that at this late-stage, and he is SO very sensitive to medication changes!
I feel it is no coincidence that just yesterday, the nurses were having difficulty figuring out his CADD pump to dose him with a boost of Fentanyl, and he clearly stated to me and my girls, "No Experimentation". He has obviously overheard this Nurse Practitioner, the Nurse Manager, Director of Nursing, and potentially his Hospice Nurse, discussing the dose potential dose reductions. He hated having his medications changed.
He's declining because of the dementia! There have been no medication changes except for pain management increases during his entire decline. LEAVE HIM ALONE!
I'm hoping to find a way to leave his Exelon alone. He's already had that dose dropped in the past, and it turns him into a vegetable. We have a potential 6 weeks before the Exelon reduction would have to begin...it buys me time to find a way to convince them to keep him steady and let him pass away comfortably. I also know I've read, and need to find, the clinical studies that show when you drop the Exelon, if you find the reaction to be adverse and you re-start it, most times the patient never returns to their previous level of cognition. Gary isn't strong enough to get through that at this late-stage, and he is SO very sensitive to medication changes!
I feel it is no coincidence that just yesterday, the nurses were having difficulty figuring out his CADD pump to dose him with a boost of Fentanyl, and he clearly stated to me and my girls, "No Experimentation". He has obviously overheard this Nurse Practitioner, the Nurse Manager, Director of Nursing, and potentially his Hospice Nurse, discussing the dose potential dose reductions. He hated having his medications changed.
He's declining because of the dementia! There have been no medication changes except for pain management increases during his entire decline. LEAVE HIM ALONE!
Aug 24, 2014
How CMS Regulations May Cause Needless Suffering
I'm going to get on my soapbox here, saying I'm going to be actively involved in Lewy Body support groups online, and also become an advocate and volunteer for Lewy Body Dementia Association after my husband passes. I am driven...
There is so much to be done out there...including advocating for changes in Medicare's blanket CMS regulations for facility and Hospice end-of-life dementia "gradual dose reductions" that have the potential to put patients on needless rollercoasters of medication changes at their most fragile time, even though that medication has been proven to work for them on an individual basis. I firmly believe in cognitive comfort care in addition to physical comfort.
As my end-stage husband said in his first lucid moment in 7 days today, "No experimentation." As if he had a premonition that this week the facility will be forced to disregard any lucid moments and potentially take them away through dose reductions of his cognitive meds, though they are working. He's not even on any antipsychotics! I say, leave him alone and let him continue his dying process peacefully without the looming rollercoaster stress the medication reductions are going to cause him. We worked and have been very successful at having him stable, but the regulations treat people like a number, and not on a case-by-case basis, so it causes needless cognitive suffering. AND, Sometimes the regulations actually cause overmedication, when you have to give your loved one a drug at their anxious time of day to prevent them from sliding out of bed undetected because bed pads and clip alarms are against the rules, regardless of the fact that your loved one can't call out for help or press a call button.
The whole system is completely disjointed and over-regulated because of bad facilities and the poor judgment of bad doctors and nurses--not taking good facilities and staff, or the needs of the individual into account. Also, I feel a good preventative effort to this issue would be to better education doctors about how Hospice works, to build awareness of how medications they prescribe that aren't "designed" for Lewy Body can ultimately end up backfiring at end of life for their patients when they have to be ripped away due to the rules.
There is so much to be done out there...including advocating for changes in Medicare's blanket CMS regulations for facility and Hospice end-of-life dementia "gradual dose reductions" that have the potential to put patients on needless rollercoasters of medication changes at their most fragile time, even though that medication has been proven to work for them on an individual basis. I firmly believe in cognitive comfort care in addition to physical comfort.
As my end-stage husband said in his first lucid moment in 7 days today, "No experimentation." As if he had a premonition that this week the facility will be forced to disregard any lucid moments and potentially take them away through dose reductions of his cognitive meds, though they are working. He's not even on any antipsychotics! I say, leave him alone and let him continue his dying process peacefully without the looming rollercoaster stress the medication reductions are going to cause him. We worked and have been very successful at having him stable, but the regulations treat people like a number, and not on a case-by-case basis, so it causes needless cognitive suffering. AND, Sometimes the regulations actually cause overmedication, when you have to give your loved one a drug at their anxious time of day to prevent them from sliding out of bed undetected because bed pads and clip alarms are against the rules, regardless of the fact that your loved one can't call out for help or press a call button.
The whole system is completely disjointed and over-regulated because of bad facilities and the poor judgment of bad doctors and nurses--not taking good facilities and staff, or the needs of the individual into account. Also, I feel a good preventative effort to this issue would be to better education doctors about how Hospice works, to build awareness of how medications they prescribe that aren't "designed" for Lewy Body can ultimately end up backfiring at end of life for their patients when they have to be ripped away due to the rules.
Aug 22, 2014
Facility/Hospice Frustrations
I'm really feeling vulnerable today and I'm so frustrated. For many reasons: emotions of seeing daily end-stage deterioration, caregiver stress-relief, the previous time management burden of running a mini-skilled nursing facility at home with my daughters...we moved my husband to a nursing facility on June 30 after 9 months of caring for him at home in a fully bedridden state. Since he's been in the facility, pain management that should be so simple and just empathetically understood, has become a battle of wills and philosophies buried under rules and regulations, rather than about Gary's comfort.
The longer he is there, the more I get the impression I am perceived as the emotionally compromised wife, instead of a caring advocate. I am spoken to condescendingly when I ask for boluses on his subcutaneous CADD pump, or ask to keep the pump out of his bed where he could reach and compromise it--looked at like I'm being unreasonable that the pump shouldn't be in bed with him, and that his partial bed rails should be kept up for safety.
Today I'm being asked to participate in a team meeting, in 3 days, in the Administrator's office, and I have no idea what it's about. I've been waiting on a call from my Hospice nurse since yesterday, which would even give me some clue about why the meeting has been called so I can plan to be absent from my full-time job to attend.
This may not be the case, but there are many times I can't help but feel the facility staff and Hospice providers might be whispering about what I may not understand behind my back. What they fail to understand is that we've been dealing with this disease and decline for over 2.5 years, through multiple facilities and settings, so have a complete understanding. We aren't rookies, and they just don't give us credit for having a full understanding of all the cards on the table. The aggravation of all this gives me knots in my stomach and heartburn sometimes!
The longer he is there, the more I get the impression I am perceived as the emotionally compromised wife, instead of a caring advocate. I am spoken to condescendingly when I ask for boluses on his subcutaneous CADD pump, or ask to keep the pump out of his bed where he could reach and compromise it--looked at like I'm being unreasonable that the pump shouldn't be in bed with him, and that his partial bed rails should be kept up for safety.
Today I'm being asked to participate in a team meeting, in 3 days, in the Administrator's office, and I have no idea what it's about. I've been waiting on a call from my Hospice nurse since yesterday, which would even give me some clue about why the meeting has been called so I can plan to be absent from my full-time job to attend.
This may not be the case, but there are many times I can't help but feel the facility staff and Hospice providers might be whispering about what I may not understand behind my back. What they fail to understand is that we've been dealing with this disease and decline for over 2.5 years, through multiple facilities and settings, so have a complete understanding. We aren't rookies, and they just don't give us credit for having a full understanding of all the cards on the table. The aggravation of all this gives me knots in my stomach and heartburn sometimes!
Jul 26, 2014
16 Months of Upswings and Downturns
Every
stage of this disease is temporary. What doesn't work well at one stage may work well the next. Keep an open mind, open heart, and
positive attitude and the best alternatives will present themselves as
you go along. Keep the faith! I'm going into my 3rd year of crisis mode,
now in the final stages. Everything happens for a reason when you are
able to look back on it.
In March 2013, my Gary fell and fractured his left hip and pelvis. After they decided they would not do surgery, he was transferred to a rehab facility...the only one that would take him...he was there for 10 days. They made an error when recording his medications from the hospital and lowered the dose of his Exelon patch by 2/3, from 13.3mg/day down to 4.6mg/day, left him on his own for hydration, dropped trays in front of him to feed himself when he dropped from solid food to purée in 5 days. I noticed the decline, caught and had them correct the medication error, found 2 awful bedsores on his heels and called Hospice. They accepted him immediately, transferred him back to the memory care facility who knew him, and he was touch and go for 2 weeks.
There is always hope! After that horrid stay, I never thought Gary would walk again, or be off a catheter, but both happened. It is truly amazing what the elderly can bounce back from. That first facility was responsible for nearly killing him, but he recovered, was off Hospice in just over 90 days, and was able to be rehabbed to functionally participate in his care, which enabled us to bring him home after I had our bathroom remodeled to be fully accessible with a roll-in shower. We enjoyed 7 months of upswing after that horrible trauma in that facility, back up to walking on a cane with assistance and feeding himself almost independently. That was such a wonderful honeymoon of borrowed time for him, me, and our 2 adult daughters. It was quite a journey and it was so awful that much of his pain and suffering could definitely have been avoided.
We kept him home for just over 9 months Our current situation is Gary was hospitalized for infections in November. He was home from the hospital in time for Thanksgiving, but then began his current spiral of decline with rapid weight loss and signs of brain damage from low oxygen levels they missed in that November Hospital stay. He became incontinent over about 3 weeks and has been fully bedridden since that hospital stay. He's now been on Hospice since December 4 and we have confirmed weight loss of over 60 pounds.
Last month, mid June, he started showing signs he didn't know where he was anymore. At that point, me and my adult daughters came to the conclusion that his quality of life would be the same whether he was home or not, and we were so exhausted. We'd been running our own nursing facility, staffing it with us, plus a 40 hour per week caregiver, and Hospice had provided nursing aids for bathing. At the point we moved him, I know he wouldn't have wanted to be a burden, and he likely would have scolded us for keeping on as long as we had.
In March 2013, my Gary fell and fractured his left hip and pelvis. After they decided they would not do surgery, he was transferred to a rehab facility...the only one that would take him...he was there for 10 days. They made an error when recording his medications from the hospital and lowered the dose of his Exelon patch by 2/3, from 13.3mg/day down to 4.6mg/day, left him on his own for hydration, dropped trays in front of him to feed himself when he dropped from solid food to purée in 5 days. I noticed the decline, caught and had them correct the medication error, found 2 awful bedsores on his heels and called Hospice. They accepted him immediately, transferred him back to the memory care facility who knew him, and he was touch and go for 2 weeks.
There is always hope! After that horrid stay, I never thought Gary would walk again, or be off a catheter, but both happened. It is truly amazing what the elderly can bounce back from. That first facility was responsible for nearly killing him, but he recovered, was off Hospice in just over 90 days, and was able to be rehabbed to functionally participate in his care, which enabled us to bring him home after I had our bathroom remodeled to be fully accessible with a roll-in shower. We enjoyed 7 months of upswing after that horrible trauma in that facility, back up to walking on a cane with assistance and feeding himself almost independently. That was such a wonderful honeymoon of borrowed time for him, me, and our 2 adult daughters. It was quite a journey and it was so awful that much of his pain and suffering could definitely have been avoided.
We kept him home for just over 9 months Our current situation is Gary was hospitalized for infections in November. He was home from the hospital in time for Thanksgiving, but then began his current spiral of decline with rapid weight loss and signs of brain damage from low oxygen levels they missed in that November Hospital stay. He became incontinent over about 3 weeks and has been fully bedridden since that hospital stay. He's now been on Hospice since December 4 and we have confirmed weight loss of over 60 pounds.
Last month, mid June, he started showing signs he didn't know where he was anymore. At that point, me and my adult daughters came to the conclusion that his quality of life would be the same whether he was home or not, and we were so exhausted. We'd been running our own nursing facility, staffing it with us, plus a 40 hour per week caregiver, and Hospice had provided nursing aids for bathing. At the point we moved him, I know he wouldn't have wanted to be a burden, and he likely would have scolded us for keeping on as long as we had.
This move to the Veteran's Home is the
first time it's made sense to utilize Veteran's services for his care. They
are working so hard to understand his needs and allow us to be
daughters and a wife again, vs. full-time caregivers. The transition has
been very emotional and a test of trust after we had issues with so
many bad facility experiences, but I feel this may work out now. So hard
to get over skepticism and the hurdle of the lack of LBD knowledge, but
he has the full spectrum of symptoms and is a wonderful learning
experience for their staff. They are literally blown away, as we used to
be, that he goes for days in a coma sleep, then wakes up and is quite
lucid and active for a day when they thought he would never respond
again. It truly is amazing when he is able to do that, but the rebounds
are getting farther apart and shorter in duration. He will serve to
educate for others who come after him. Of course, upon admission we had a
very hard time getting them to believe he needed bed rails and mats on
the floor for bed safety. 5 days later they thanked me for the
precautions.
The miracle is he's still here. No one has expected him to hold on this long. though he doesn't know where he is now, he still knows who we are and sometimes recalls our visits. Every day is a miracle and we are grateful for any spec of a lucid moment. Bless his heart as he continues on in these final days and weeks.
I had posted this on a Carer support site on Facebook and realized it would be a useful update and synopsis for others. I just hope our story, and this Blog, is helpful to many.
I had posted this on a Carer support site on Facebook and realized it would be a useful update and synopsis for others. I just hope our story, and this Blog, is helpful to many.
Hallucination Note
One
of the first hallucinations I caught my husband in was of our oldest
daughter standing next to him and she lived 1,500 miles from us at the
time. Now that he is end-stage, he has spoken of seeing his mother, but
Hospice tells me that is common as the end nears, so in my mind is
different from the earlier hallucinations...most of which were miniature
people.
Guilt
I
can tell others I communicate with in online support groups to not feel guilt but then it is actually a mutual effort for me to also work on having no guilt because I just put my husband in a home on June 30 and
am adjusting, myself. The first two weeks were total depression and
loss of his presence. Last week was a little better. This week the
facility is getting a much better grasp on his care and pain management,
which is helping me feel less guilty and get a grip on the fact that
his quality of life will be the same in either place now, because he
doesn't even ask about home at all.
It only took 4 weeks for a cognitive decline from June 4 when he was asking to return home less than 12 hours after admission for a Hospice inpatient respite stay; and when he was admitted to the nursing facility and hasn't even asked about home. RAPID and drastic change. For me, that's the only part that makes this a bit easier...that he isn't constantly begging to come back home, and yet that decline is depressing all by itself.
It only took 4 weeks for a cognitive decline from June 4 when he was asking to return home less than 12 hours after admission for a Hospice inpatient respite stay; and when he was admitted to the nursing facility and hasn't even asked about home. RAPID and drastic change. For me, that's the only part that makes this a bit easier...that he isn't constantly begging to come back home, and yet that decline is depressing all by itself.
Jul 19, 2014
He Doesn't Know I'm Here
I came at 1 p.m. today to see my
husband. He was awake for about 10 minutes. It's almost 5 p.m. now and
nothing. Not even able to rouse him for a sip of water. So hard to
believe he is this far down.
Jul 17, 2014
Advocating for In-Home Assistance for a Loved One with Dementia/LBD
Let's be realistic...anyone with any form of dementia can use in-home assistance as soon as possible. Here are a few ideas to help you get the assistance started when you are on Medicare.
Don't be surprised if you find challenges with getting therapists to agree to work with dementia, because there are a lot of therapists out there who seem to view dementia patients as unsalvagable, which is very sad. If that is the case, advocate by making phone calls to other agencies and interviewing their views on therapies until you find an agency who is supportive.The consequences of not fighting to show improvement for Home Health results in your loved one being considered "stable", which then disqualifies you for assistance. Throughout my husband's care, I wouldn't allow Home Health to drop us because I would call attention to every little improvement I could see to help them document it for Medicare coverage. I also became very familiar with the administrator at the Home Health we used, and I was able to press for care much longer than we would have gotten it otherwise. If a therapist gave up on him, I would point out how much progress he'd made, discuss the potential for greater progress, and they would ask other, more dementia-tolerant therapists on their staff to treat my husband so he would be allowed every opportunity to continue to improve.
On the flip side of Medicare Home Health certification requirements, Hospice can only come into play if your loved one shows decline and a doctor certifies they have less than 6 months. Hospice care is the "cadillac" of care when you are out of treatment options for your terminal illness. It can be difficult to come to grips with a transition to Hospice, but their palliative care is an absolute godsend for medical assistance for both loved one and caregiver. Because I advocated to call attention to status improvements for Home Health, we were ultimately able to transition straight from Home Health into Hospice services with no interruption in the nursing support we desperately needed. Now I advocate by noting every decline symptom with Hospice to assist with their recertifications with Medicare.
It's a battle, but a battle worth fighting. Being a strong advocate is mandatory at EVERY stage of this disease, whether fighting to stay on Home Health by calling attention to improvement...fighting for proper care and POA communication in a hospital setting...pointing out every tiny bit of decline for a Hospice...or advocating for oxygen flow continuation and pain management continuation in my husband's current setting, with Hospice at my side.
If your loved one isn't
currently in a state of definite
decline, I would ask your doctor about referring you to Home Health for
help. If they don't require skilled nursing assistance, your doctor can ask for Home
Health to provide just the services they would respond best to. If they have
any swallowing or speech changes, see if your doctor would recommend a
speech evaluation. If they are having mobility challenges, a physical therapy evaluation can be ordered. If problems with feeding themselves,
dressing or other grooming or coordination activities such as writing
and dexterity, an occupational therapy evaluation can be ordered.
Don't be surprised if you find challenges with getting therapists to agree to work with dementia, because there are a lot of therapists out there who seem to view dementia patients as unsalvagable, which is very sad. If that is the case, advocate by making phone calls to other agencies and interviewing their views on therapies until you find an agency who is supportive.The consequences of not fighting to show improvement for Home Health results in your loved one being considered "stable", which then disqualifies you for assistance. Throughout my husband's care, I wouldn't allow Home Health to drop us because I would call attention to every little improvement I could see to help them document it for Medicare coverage. I also became very familiar with the administrator at the Home Health we used, and I was able to press for care much longer than we would have gotten it otherwise. If a therapist gave up on him, I would point out how much progress he'd made, discuss the potential for greater progress, and they would ask other, more dementia-tolerant therapists on their staff to treat my husband so he would be allowed every opportunity to continue to improve.
On the flip side of Medicare Home Health certification requirements, Hospice can only come into play if your loved one shows decline and a doctor certifies they have less than 6 months. Hospice care is the "cadillac" of care when you are out of treatment options for your terminal illness. It can be difficult to come to grips with a transition to Hospice, but their palliative care is an absolute godsend for medical assistance for both loved one and caregiver. Because I advocated to call attention to status improvements for Home Health, we were ultimately able to transition straight from Home Health into Hospice services with no interruption in the nursing support we desperately needed. Now I advocate by noting every decline symptom with Hospice to assist with their recertifications with Medicare.
It's a battle, but a battle worth fighting. Being a strong advocate is mandatory at EVERY stage of this disease, whether fighting to stay on Home Health by calling attention to improvement...fighting for proper care and POA communication in a hospital setting...pointing out every tiny bit of decline for a Hospice...or advocating for oxygen flow continuation and pain management continuation in my husband's current setting, with Hospice at my side.
Jul 9, 2014
Medicare Hospice and Home Health Discussion
On Hospice, the initial benefit period is 90 days, then
after that benefit periods are only 60 days long. If you are caring for your loved one at home, you are qualified for 5 days of respite in each benefit period. I have always selected a Hospice provider who has their
own inpatient units, and that's the only place I would allow them to
take our Gary for his respite stays. No outside facilities were allowed because of repeated bad care experiences.
To be qualified for Hospice, you must have a life expectancy of less than 6 months, and must continue to show decline each benefit period to be recertified on Hospice. If you stabilize, their service will be discontinued, no matter that you sill have a terminal disease. You must have nearly all 7 symptoms of end-stage dementia on the FAST scale to be Hospice qualified with dementia as your only terminal diagnosis. Multiple diagnoses can be used, but the primary diagnosis dictates which medications Hospice will pay for and which will be excluded. The horror is if services start, then you stabilize at some point in your decline and they kick you off, still terminal, but now stable, which makes you ineligible for Hospice services. When you are stable, you are also not qualified for Home Health, because in that situation, you must be improving to receive those benefits. Many dementia patients and carers get caught in that awful limbo of stability with no support, which means no in-home skilled care and no respite unless all paid for out-of-pocket despite having a terminal illness and needing a medical transport to get to appointments. Our system desperately needs an overhaul!! LBD is SUCH a difficult primary Hospice diagnosis because of the cognitive and behavioral fluctuations.
We were kicked off Hospice last July and had to fight for rehab so Gary would be showing improvement for us to have Home Health help at home. I was able to advocate enough to keep it going until he had to be hospitalized in November for a sudden bout of infections that started at Adult Day Care. He qualified for Hospice again starting in December, and we kept noting and pointing out all signs of decline to keep Hospice involved in his care. Hospice would miss many signs if we don't advocate for him. It is exhausting. You leave Hospice and the basic needs, which would keep your loved one maintaining a comfortable stability are kept out of your reach unless you pay on your own because Medicare has stacked the red tape so high to get them. The fight for a hospital bed with an air mattress for bed sore prevention is monumental and nearly insurmountable without multiple letters of explanation from doctors and therapists. An oxygen concentrator requires a sustained reading below 88% blood oxygen for several minutes within a 24 hour period even if you had a lifetime certification for it before Hospice admission. Medicare considers you to be "recovered' if you are kicked off Hospice services, so you must scratch your way back to get back items you had proven were needed in the past! Beyond ridiculous!!
The attitude of Hospice when kicking you off is, "This is a good thing because they are doing better!" No, it's hell for the carer and patient because you have to fight so hard for basic needs and to keep them out of the hospitals that will kill them with their medication adjustments upon admission, and they aren't ever getting "better"! It is all decline, just sometimes imperceptible to untrained and inexperienced medical personnel who don't listen to advocates. This has been the most stressful, exhausting experience of my life and I have become an impatient, and often sarcastic, advocate because of all the continuous battles I've been forced to engage in. Still ongoing even though we're end-stage. Common sense and simple care logic are NOT empathetic medical traits, they have to be taught over and over again, in every single setting, and with every new medical encounter. For example, urine retention is ALWAYS met with a permanent or straight catheter intervention. Straight caths cause infections more frequently than retention, and a permanent catheter WILL BE PULLED OUT by a dementia patient. The medical community doesn't think in terms of individual circumstances and past experiences, and they love to try and trump the advocate. This constant battle has become my definition of absolute insanity!
To be qualified for Hospice, you must have a life expectancy of less than 6 months, and must continue to show decline each benefit period to be recertified on Hospice. If you stabilize, their service will be discontinued, no matter that you sill have a terminal disease. You must have nearly all 7 symptoms of end-stage dementia on the FAST scale to be Hospice qualified with dementia as your only terminal diagnosis. Multiple diagnoses can be used, but the primary diagnosis dictates which medications Hospice will pay for and which will be excluded. The horror is if services start, then you stabilize at some point in your decline and they kick you off, still terminal, but now stable, which makes you ineligible for Hospice services. When you are stable, you are also not qualified for Home Health, because in that situation, you must be improving to receive those benefits. Many dementia patients and carers get caught in that awful limbo of stability with no support, which means no in-home skilled care and no respite unless all paid for out-of-pocket despite having a terminal illness and needing a medical transport to get to appointments. Our system desperately needs an overhaul!! LBD is SUCH a difficult primary Hospice diagnosis because of the cognitive and behavioral fluctuations.
We were kicked off Hospice last July and had to fight for rehab so Gary would be showing improvement for us to have Home Health help at home. I was able to advocate enough to keep it going until he had to be hospitalized in November for a sudden bout of infections that started at Adult Day Care. He qualified for Hospice again starting in December, and we kept noting and pointing out all signs of decline to keep Hospice involved in his care. Hospice would miss many signs if we don't advocate for him. It is exhausting. You leave Hospice and the basic needs, which would keep your loved one maintaining a comfortable stability are kept out of your reach unless you pay on your own because Medicare has stacked the red tape so high to get them. The fight for a hospital bed with an air mattress for bed sore prevention is monumental and nearly insurmountable without multiple letters of explanation from doctors and therapists. An oxygen concentrator requires a sustained reading below 88% blood oxygen for several minutes within a 24 hour period even if you had a lifetime certification for it before Hospice admission. Medicare considers you to be "recovered' if you are kicked off Hospice services, so you must scratch your way back to get back items you had proven were needed in the past! Beyond ridiculous!!
The attitude of Hospice when kicking you off is, "This is a good thing because they are doing better!" No, it's hell for the carer and patient because you have to fight so hard for basic needs and to keep them out of the hospitals that will kill them with their medication adjustments upon admission, and they aren't ever getting "better"! It is all decline, just sometimes imperceptible to untrained and inexperienced medical personnel who don't listen to advocates. This has been the most stressful, exhausting experience of my life and I have become an impatient, and often sarcastic, advocate because of all the continuous battles I've been forced to engage in. Still ongoing even though we're end-stage. Common sense and simple care logic are NOT empathetic medical traits, they have to be taught over and over again, in every single setting, and with every new medical encounter. For example, urine retention is ALWAYS met with a permanent or straight catheter intervention. Straight caths cause infections more frequently than retention, and a permanent catheter WILL BE PULLED OUT by a dementia patient. The medical community doesn't think in terms of individual circumstances and past experiences, and they love to try and trump the advocate. This constant battle has become my definition of absolute insanity!
Jun 14, 2014
Insights From Our Medication Journey
Gary's
nights and days were completely reversed before he was first diagnosed.
We got him turned around in a stay at a geriatric psych ward. Without the
intervention of that hospital stay, it was impossible to keep him awake
during the day. We also had to admit him for his safety because he was wandering alone
around the house at night when weren't able to monitor his activities,
and it was dangerous for him. He had no memory of what he would do at
night and we would find things rearranged, tipped over and broken. It
was quite difficult.
During his first of two geri-psych admissions, they tried night/drowsy medications including Trazodone and Clonazepam, which are still in his regimen in his late stage. Trazodone was started in low doses and has worked well for him. It is now our anti-anxiety go-to medication between 25 and 50mg. Exelon patch (cholinesterase inhibitor) and Namenda, moving up to Namenda XR (designed for alzheimers) have helped Gary still have hours of good cognition. Of course, over time, many adjustments have been made, but that initial stay at least put us on a survival track without me personally having to struggle through the experimentation in an uncontrolled environment.
Antipsychotics have all had horrible short or long-term side effects. Quetapine is generic for Seroquel. It was tried first, and he didn't react well at all--it caused double hallucinations compared to his baseline. Risperdal was one of the initial medications that stuck, which is now on his allergy list after it ultimately locked him up 6 months after it was started. When Risperdal was stopped, Zyprexa was started in his second geri-psych stay, and that worked for nearly a year until it made him too rigid.
One of the challenges of those geri-psych stays was getting the hospital psychiatrist to keep any medications that would cause drowsiness held for only night dosing. You would think that since one of the main issues that brought us to admit him was nighttime sleeplessness, and his primary physician was saying no naps after 1 p.m., the psychiatrist would pick up on the fact that a drowsy medication shouldn't be given at 2 p.m., but not so. You even have to advocate for common sense.
Lorazepam is one of the medications that caused my husband to require hospitalization at the same time the Risperdal was discontinued. Since then, I have asked everyone to carefully consider any medication changes and definitely suggest that any antipsychotic or medication that affects receptors in the brain be steered away from. Our geriatric dementia primary care doctor, who we were very fortunate to find in 2012 through his geri-psych stay, was very careful to use only medications that were less likely to cause any changes to the already limited functioning in Gary's brain. Preserve what was/is still working. Though the receptors in the brain may be interrupted at times, they are still functioning, which is why LBD has such extreme ups and downs.
Pain medications can also cause unexpected reactions. After a compression at T11 then a fractured left hip and pelvis, our pain med progression has been: Tylenol, Hydrocodone 5/325 and 10/325, liquid morphine plus MS Contin (time release morphine), the step up to 25mcg Fentanyl patch, now Fentanyl subcutaneous starting at 37.5mcg...now up to 75mcg plus up to 120mcg additional boluses each hour. Vicodin was an agitator and hallucinogen for Gary. He can't take any ibuprofen related meds because he is on blood thinners already for history of DVT/Embolism. Naproxen often causes confusion in the elderly so we have also steered clear of that.
When initially hospitalized, Gary could still do things around the house at that point, but the sun-downing at night with all the wandering and confusion was such an alter ego we needed the intervention. It became quite unmanageable. Before his stay I had no idea there were such units to assist. It did ultimately make a huge difference in giving us both back a better quality of life that was much more functional for at least a short time until the two catastrophic falls occurred.
Advice to anyone who thinks they may be dealing with LBD--Caution with ANY antipsychotic such as Seroquel, Zyprexa, Risperdal and especially not Haldol. All can cause deadly side effects and must be monitored closely. Our ultimate best solution ended up being no antipsychotics and increasing to Namenda XR instead of twice/day Namenda. The hallucinations are still mostly under control with minimal breakthroughs, and we still have the cognitive benefits. This route was the result of recommendations from Gary's Cleveland Clinic Neurologist and his geriatric internal medicine doctor that both specialize in dementias.
During his first of two geri-psych admissions, they tried night/drowsy medications including Trazodone and Clonazepam, which are still in his regimen in his late stage. Trazodone was started in low doses and has worked well for him. It is now our anti-anxiety go-to medication between 25 and 50mg. Exelon patch (cholinesterase inhibitor) and Namenda, moving up to Namenda XR (designed for alzheimers) have helped Gary still have hours of good cognition. Of course, over time, many adjustments have been made, but that initial stay at least put us on a survival track without me personally having to struggle through the experimentation in an uncontrolled environment.
Antipsychotics have all had horrible short or long-term side effects. Quetapine is generic for Seroquel. It was tried first, and he didn't react well at all--it caused double hallucinations compared to his baseline. Risperdal was one of the initial medications that stuck, which is now on his allergy list after it ultimately locked him up 6 months after it was started. When Risperdal was stopped, Zyprexa was started in his second geri-psych stay, and that worked for nearly a year until it made him too rigid.
One of the challenges of those geri-psych stays was getting the hospital psychiatrist to keep any medications that would cause drowsiness held for only night dosing. You would think that since one of the main issues that brought us to admit him was nighttime sleeplessness, and his primary physician was saying no naps after 1 p.m., the psychiatrist would pick up on the fact that a drowsy medication shouldn't be given at 2 p.m., but not so. You even have to advocate for common sense.
Lorazepam is one of the medications that caused my husband to require hospitalization at the same time the Risperdal was discontinued. Since then, I have asked everyone to carefully consider any medication changes and definitely suggest that any antipsychotic or medication that affects receptors in the brain be steered away from. Our geriatric dementia primary care doctor, who we were very fortunate to find in 2012 through his geri-psych stay, was very careful to use only medications that were less likely to cause any changes to the already limited functioning in Gary's brain. Preserve what was/is still working. Though the receptors in the brain may be interrupted at times, they are still functioning, which is why LBD has such extreme ups and downs.
Pain medications can also cause unexpected reactions. After a compression at T11 then a fractured left hip and pelvis, our pain med progression has been: Tylenol, Hydrocodone 5/325 and 10/325, liquid morphine plus MS Contin (time release morphine), the step up to 25mcg Fentanyl patch, now Fentanyl subcutaneous starting at 37.5mcg...now up to 75mcg plus up to 120mcg additional boluses each hour. Vicodin was an agitator and hallucinogen for Gary. He can't take any ibuprofen related meds because he is on blood thinners already for history of DVT/Embolism. Naproxen often causes confusion in the elderly so we have also steered clear of that.
When initially hospitalized, Gary could still do things around the house at that point, but the sun-downing at night with all the wandering and confusion was such an alter ego we needed the intervention. It became quite unmanageable. Before his stay I had no idea there were such units to assist. It did ultimately make a huge difference in giving us both back a better quality of life that was much more functional for at least a short time until the two catastrophic falls occurred.
Advice to anyone who thinks they may be dealing with LBD--Caution with ANY antipsychotic such as Seroquel, Zyprexa, Risperdal and especially not Haldol. All can cause deadly side effects and must be monitored closely. Our ultimate best solution ended up being no antipsychotics and increasing to Namenda XR instead of twice/day Namenda. The hallucinations are still mostly under control with minimal breakthroughs, and we still have the cognitive benefits. This route was the result of recommendations from Gary's Cleveland Clinic Neurologist and his geriatric internal medicine doctor that both specialize in dementias.
Jun 5, 2014
June 5 - Beard Trim
Jun 4, 2014
June 4 - Hospice, Decline and Medication Reflections
Hospice
is so very helpful. After a double infection in November, 2013, our Gary's been on
Hospice in decline since the first week of December. As of this point, he's down at least
75 pounds, so almost 1/2 his weight from a pretty fit 186 at 6' tall. He
is fully bedridden and 100% dependent. He has lost all remaining independent
abilities between December and January. It's been so sad. I'm totally
with you on the second guessing. I've reviewed this entire movie in my head since
Feb of 2012 when I first caught him hallucinating, several times. There
are no easy choices. At some point it just becomes the lesser of all the
evils presented.
All meds have continued because we are fighting for comfort, including cognitive comfort. If we only have 8 hours of lucidity total a week, that is enough to continue. Gary is still on Coumadin (paid for by me) to prevent clotting because he has a history of clotting with DVT and embolism and that would cause unnecessary suffering, though hospice is covering monitoring his INR levels. He has a nebulizer with albuterol for respiratory comfort due to aspiration issues. He is still on Trazodone, Exelon 13.3mg patch, Namenda XR, Clonazepam, and then Fentanyl subcutaneous pump currently set at 75mcg/hour with 30mcg bolus doses available every 15 minutes, all of which are covered by hospice. I don't accept less than full comfort in all areas, as his advocate, and all these medications are justifiable for comfort. I don't allow doctors to push me in a corner on meds. We have been through too much, Gary has suffered from it and I have the proof to show the hospice doctors if they question me.
Neurological pain is one of his issues because of the changes to so many body functions. I can't imagine an advanced LBD patient not being in pain with all the systems that are affected. They just can't express it and it comes out as agitation, anxiety, and other symptoms. A lot of symptoms resolved once we got pain managed better.
Gary is fighting demons of anoxic brain damage layered over Lewy along with the infections, so continuing the meds I've mentioned is helping to keep him cooperative and less anxious. If something like kidney failure or another infection comes along, I'm not sure we'll be giving any further treatment or preventative measures to prolong life.
All meds have continued because we are fighting for comfort, including cognitive comfort. If we only have 8 hours of lucidity total a week, that is enough to continue. Gary is still on Coumadin (paid for by me) to prevent clotting because he has a history of clotting with DVT and embolism and that would cause unnecessary suffering, though hospice is covering monitoring his INR levels. He has a nebulizer with albuterol for respiratory comfort due to aspiration issues. He is still on Trazodone, Exelon 13.3mg patch, Namenda XR, Clonazepam, and then Fentanyl subcutaneous pump currently set at 75mcg/hour with 30mcg bolus doses available every 15 minutes, all of which are covered by hospice. I don't accept less than full comfort in all areas, as his advocate, and all these medications are justifiable for comfort. I don't allow doctors to push me in a corner on meds. We have been through too much, Gary has suffered from it and I have the proof to show the hospice doctors if they question me.
Neurological pain is one of his issues because of the changes to so many body functions. I can't imagine an advanced LBD patient not being in pain with all the systems that are affected. They just can't express it and it comes out as agitation, anxiety, and other symptoms. A lot of symptoms resolved once we got pain managed better.
Gary is fighting demons of anoxic brain damage layered over Lewy along with the infections, so continuing the meds I've mentioned is helping to keep him cooperative and less anxious. If something like kidney failure or another infection comes along, I'm not sure we'll be giving any further treatment or preventative measures to prolong life.
Jun 1, 2014
It's June 1 and Gary's still here!
We didn't expect him to make it past Christmas, and we are so grateful and also amazed. He is still losing weight, is on a good amount of continuous pain meds...a subcutaneous Fentanyl pump getting 75 mcg/hour. He changes demeanor and capabilities by the moment now and is having more frequent episodes of high anxiety where you can't reason with him. The doctors and nurses at hospice speak very highly of the care we give him, and some have told me personally they would hope for someone like me to advocate for them if they were ever in Gary's condition. That really makes me feel like the hard work and stress are truly necessary and appreciated. I am so thankful we've been able to keep him home all this time and I could never do that without Hospice at this point. Don't mind saying we are all tired and worn down a bit, but the precious moments we get with Gary are priceless.
He wouldn't still be here if he weren't home. He tracks and wants to know who's coming when each day and when each of us will be home. Have to repeat it sometimes, but he's still the Dad and husband watching over his flock in that way. He is hallucinating more and now they are full-sized people (were always miniature people before). Saw his Mom last week. First time he mentioned her since this all started and he told our caregiver, not us, so I know that was very real to him.
He has to be under 110 lbs. now from his November starting point of a healthy 186. His dominant right arm bicep measurement is down to 24cm from a previous measurement of 26.5cm on his 6' frame. So thin and frail looking, but he can still be surprisingly strong.
He wouldn't still be here if he weren't home. He tracks and wants to know who's coming when each day and when each of us will be home. Have to repeat it sometimes, but he's still the Dad and husband watching over his flock in that way. He is hallucinating more and now they are full-sized people (were always miniature people before). Saw his Mom last week. First time he mentioned her since this all started and he told our caregiver, not us, so I know that was very real to him.
He has to be under 110 lbs. now from his November starting point of a healthy 186. His dominant right arm bicep measurement is down to 24cm from a previous measurement of 26.5cm on his 6' frame. So thin and frail looking, but he can still be surprisingly strong.
May 29, 2014
May 29 - Hospice Recertification - 3rd 60-Day Benefit Period
It sounds horrible, doesn't it? Hoping your loved one will continue to
qualify for hospice, when you should be hoping for recovery or some type
of improvement? But the honest truth is hospice care and the 24/7
availability of doctors is what allows us to care for Gary at home, and it's what's keeping him comfortable with well-managed pain, and alive. He requires a medical transport to be moved to care, unless it can be provided at home. He's too fragile and has lost too much weight to withstand
transfers in and out of our Jeep SUV or a normal car. Their care is what
allows us to manage Gary's daily changes, manage his pain, and they
provide his hospital bed, air mattress for bed sore prevention, oxygen
machine with humidifier, all his medications and incontinence supplies. Last summer when he was kicked off hospice, we had to fight for just oxygen and a hospital bed, and that was before he was 100% bedridden and had lost almost 1/2 his body weight. Without those key elements being covered, we would be forced to institutionalize him again, and his condition would decline because Nevada skilled nursing facilities don't provide air mattresses to prevent bed sores. He was nearly killed by a nursing home in April 2013 by their medication errors, lack of knowledge with his Lewy Body medication sensitivity, and their incompetence with his bladder complications. I can't relive that again, and he wouldn't be likely to survive that again.
Our appointment is at 3 today to meet the Nurse Practitioner, Rose, who will recertify Gary for his 3rd Medicare benefit period on this, his second round of hospice. I have a huge fear (irrational, yet logic-driven) of him being kicked off hospice by Medicare because he's become too stable. This is a reality, no matter how bedridden he is, because our healthcare system has no room for stable patients. You can be in decline and be on hospice, or you can be improving and have home health assistance and care, but you cannot be stable. In stability, you have no support from Medicare. Our Social Worker didn't help my worries at all, this past Saturday, when she told me dementia patients are more and more challenging to recertify for hospice because it is such a gray and slow-progressing disease in comparison to other terminal conditions.
Rose is the one who recertified Gary last time, so she is at least familiar with Gary's previous condition at the beginning of his current benefit period in April. It has been 60 days since she last saw him, so I walk in to meet her after a partial day at work, hopeful she will see as much decline as we believe we have experienced. I came home armed for bear with a list of changes. She had her own list, but she did tell me my list made it easier for her to write up and justify to Medicare. We've seen more weight loss...total tally down about 75 pounds since December 4. His swallowing is getting worse, he is more agitated and harder to reason with in the late afternoon, sometimes picking apart his diaper and incontinence pad as well as stripping the sheets off the bed around him. He's hallucinating more, eating less, drinking less. His teeth are moving. His left side is shrinking faster than his right. He runs random fevers, only on his core. His forehead, temples, arms and legs will all be cool at 97 or 98 and his core will be at nearly 103. She had NONE of this in her notes. She had only documented his weight loss and his left arm as of the time I walked in the door, and she'd been with him for at least 20 minutes.
We passed. He has been recertified with my advocacy. Rose was very helpful, very understanding. She discussed all the changes I presented her, and let me know they helped her tremendously. Told me to continue to document everything I notice so we can help them to help us keep him certified. I will definitely do that. I will not stop. He can't afford to be without their valuable assistance, and neither can I. The supplies alone would run us over $300 a month, not even counting medications. Not having hospice help right now is unimaginable.
The fact that I have to even think about this and live in fear, is inexcusable. Shame on our healthcare system for how we treat our seniors without advocates. He wouldn't be alive if he didn't have me to advocate to save his necessary care and keep it in place, or if he had stayed in that awful facility over a year ago. What do other seniors do? Many lose their hospice care or never even get on it because they don't have a younger spouse who can understand and advocate their way through the system to protect them when they can't defend themselves. For the record, both times we've obtained hospice it has been because I recognized the need and requested evaluations. So very sad and so much extra pressure on me and my family.
But thank goodness we're good for another 60 days...
Our appointment is at 3 today to meet the Nurse Practitioner, Rose, who will recertify Gary for his 3rd Medicare benefit period on this, his second round of hospice. I have a huge fear (irrational, yet logic-driven) of him being kicked off hospice by Medicare because he's become too stable. This is a reality, no matter how bedridden he is, because our healthcare system has no room for stable patients. You can be in decline and be on hospice, or you can be improving and have home health assistance and care, but you cannot be stable. In stability, you have no support from Medicare. Our Social Worker didn't help my worries at all, this past Saturday, when she told me dementia patients are more and more challenging to recertify for hospice because it is such a gray and slow-progressing disease in comparison to other terminal conditions.
Rose is the one who recertified Gary last time, so she is at least familiar with Gary's previous condition at the beginning of his current benefit period in April. It has been 60 days since she last saw him, so I walk in to meet her after a partial day at work, hopeful she will see as much decline as we believe we have experienced. I came home armed for bear with a list of changes. She had her own list, but she did tell me my list made it easier for her to write up and justify to Medicare. We've seen more weight loss...total tally down about 75 pounds since December 4. His swallowing is getting worse, he is more agitated and harder to reason with in the late afternoon, sometimes picking apart his diaper and incontinence pad as well as stripping the sheets off the bed around him. He's hallucinating more, eating less, drinking less. His teeth are moving. His left side is shrinking faster than his right. He runs random fevers, only on his core. His forehead, temples, arms and legs will all be cool at 97 or 98 and his core will be at nearly 103. She had NONE of this in her notes. She had only documented his weight loss and his left arm as of the time I walked in the door, and she'd been with him for at least 20 minutes.
We passed. He has been recertified with my advocacy. Rose was very helpful, very understanding. She discussed all the changes I presented her, and let me know they helped her tremendously. Told me to continue to document everything I notice so we can help them to help us keep him certified. I will definitely do that. I will not stop. He can't afford to be without their valuable assistance, and neither can I. The supplies alone would run us over $300 a month, not even counting medications. Not having hospice help right now is unimaginable.
The fact that I have to even think about this and live in fear, is inexcusable. Shame on our healthcare system for how we treat our seniors without advocates. He wouldn't be alive if he didn't have me to advocate to save his necessary care and keep it in place, or if he had stayed in that awful facility over a year ago. What do other seniors do? Many lose their hospice care or never even get on it because they don't have a younger spouse who can understand and advocate their way through the system to protect them when they can't defend themselves. For the record, both times we've obtained hospice it has been because I recognized the need and requested evaluations. So very sad and so much extra pressure on me and my family.
But thank goodness we're good for another 60 days...
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