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...

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.

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...