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. 

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:

Who Cares For The Caregiver?

 

His pain, agitation and anxiety are mine. There is no separation. We are the same person.

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.

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... :-(

Lucidity Fluctuations Continue - Relieved of Some Guilt

Good visits today with both our daughter and me. She popped popcorn and took it in to him today, and he was so happy to have it!  Ate the entire bag! Last Thursday when he had his other highly lucid day, munching up on Lays, he asked about popcorn, and they aren't allowed to microwave popcorn because of a bad incident where an unattended bag caught on fire.  (Oops!)  So Gary was bummed he couldn't have any that night, so our daughter surprised him with it today.

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...

The Rally/Surge is Gone - Hoping Temporarily

After 10 solid months of decline and complete dependence for all ADL's (Activities of Daily Living) Wednesday, Thursday and Friday this week, we had a wonderful honeymoon of alertness that peaked between Thursday evening and Friday with my husband pressing his own call button, feeding himself dinner and drinking coffee on his own on Thursday night, then feeding himself breakfast and reading the paper on Friday morning. Then between Friday at lunch and Saturday at lunch, he gradually became a complete feeder again, and when I arrived at 1pm yesterday, he was back in his coma sleep, completely unrousable through and after 7pm, when I finally left. It was wonderful while it lasted. Complicating things, it coincided with a move from an acute wing at his facility, into the Memory Care. The staff at the Memory Care was taking his increased cognition and activity level at face value, thinking that was his current status...I repeatedly told all shifts I could be in contact with that this was temporary. They couldn't believe it yesterday when he slipped back into unresponsiveness. Now they fully understand...

Improved Environment, Attention and A Great Day 2 in the Memory Care Unit!

He is flourishing these past 2 days with the increased staff care, attention and better environment in the memory care unit! Miraculously, either due to the Namenda reduction, or environment and maybe just the Lewy Body letting go for a moment, he's fed and hydrated himself at dinner, and used the call button earlier in the day!  However it's happening, we'll take it! This may be his last surge before leaving us, but I am thankful for every second of it! So nice to see him again and enjoy his wit and company. We have missed him so!

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...

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!

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!

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. 

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.

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.

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.

June 5 - Beard Trim

Gary's still on his game sometimes...I started to trim his beard and mustache tonight, and I said, "I hope I'm trimming it the way you like it." He replies, "That's why I've got my eyes closed." Turned out very good though, don't you think? He did approve when I was done, though he also commented on how thin his hair is now--but I was also so pleased he was aware enough to make that observation! It's the small stuff that counts in life!

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.

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.

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...

May 20 - Scary Day

HARSH shape today. Last night Gary was up late enjoying an ice cream sandwich and chatting. This morning, extremely severe rigidity and can't respond at all, and can hardly open his eyes, though we know he's awake. I think he's paying for 2 10-12 hour days of awareness in a row, but his respirations have dropped. Pulse and BP seem to be hanging in. Again, nearly 70 lb. weight loss since November, completely bedridden. Up til 2 days ago, sleeping 20-23 hours a day, then the 2 day surge, and now this, and we're not able to get him to even try to swallow any medication at all today. No medication changes caused this. I am firm on that. He is home with Hospice assistance, with me, our adult daughters and one excellent regular caregiver who we consider part of our family now.Can never tell...so devastated this morning, but he seems stable for the moment. Just never know what to think and the uncertainty is terrifying!

May 3 - Feverish/Confused Day

Gary is running another mystery fever today. Still isn't presenting on his forehead and barely on his temple. With his poor circulation and extreme weight loss from his decline, no part of him is the same temperature simultaneously anymore. He's not hungry, though I did get a nutritional drink into him, along with applesauce for his meds, plus his prune juice cocktail and some cranberry water.

He's staring a lot today and having a hard time responding. Picks at his sheets a lot and has repeated this morning, again, that he needs to "get up and get out of here", though he hasn't walked, even with assistance, since mid-November.

Gary continued to be quiet and in a fitful sleep for the rest of the day. It is so frightening to see such a strong man look and behave so weak and be in such a fragile state.

May 2 - Pain Management

About 3 months ago Gary was put on a Fentanyl patch at 25 mcg, with liquid morphine available for breakthrough pain. When he needed the morphine often, Hospice then moved him to a subcutaneous Fentanyl pump, which allowed much better absorption with his weight loss, and also allowed for better dose management. They actually started him at 50mcg and it had the effect of lethargy and unresponsiveness, knocking him down each time the pump dosed him. They dropped it to 37.5mcg which worked well for the past couple months, then in the last 3 weeks Gary's pain his increased tremendously with the deterioration of his left arm and leg, so it's been stepped up to 47.5, then 60mcg. The pump also allows for "bolus" doses for breakthrough pain at 20mcg every 15 minutes as needed.

Medication adjustments, including pain meds, have put Gary through episodes of unresponsiveness and for the most part, he has returned from them, though not always up to his previous level. Any medication changes can cause drastic differences in mood, lucidity and appetite for Gary. Today, Hospice wanted to increase Gary from his 60mcg dose to 90. I pushed back for 75, so we can see how he responds to less, then step it up, rather than knock him down too hard too fast. In addition, the bolus doses were increased to 30mcg every 15 minutes.