Living with Lewy

H. Lee did not regain functionality since early August. He remained incontinent, confused and agitated. I tried every trick in my book to bring him back, but nothing worked this time. He didn’t know my name but knew that he liked me! I could no longer care for him 24/7 alone. Tried using some caretakers to give me a break but that wasn’t enough. And is very expensive! No more than 2 hrs sleep at a time for weeks on end takes it toll, as does being confined in the apt. After meeting with his palliative care team, whose testing really showed his massive decline and who recommended hospice care, I decided H. Lee would be better cared for in the Harry’s Haven Memory Care unit at The Wasserman Campus/Motion Picture Hospital. Fortunately for us a bed became available and he was transferred there last week. (We have been on their waiting list for years). I cannot visit him for another week. He had to have a 5 day Covid confinement then it’s two weeks to get the patient into their routine before visitors are allowed . Our 26 th Wedding Aniversary came and went during this period. Don’t know how to be wife/visitor! Will he even know who I am? Very hard times! But I am fortunate in my chosen fam and friends. Had to move out of the apt. But I have a soft and gentle landing with a lovely girlfriend in her cozy home a block from the beach where I can relax, recover and replenish. I’m 30 mins from H. Lee, who by all accounts is settling in well. I’m grateful for the extra time we had together and the extra memories we were able to make this last year and a half. Some fun was had although it became too difficult to take him out. These are the last pics of us together at our afternoon drinking and dancing events by the beach! We have wonderful memories!

ʀᴏʙɪɴ ᴡɪʟʟɪᴀᴍs ᴛᴏᴏᴋ ʜɪs ᴏᴡɴ ʟɪғᴇ ʙᴇᴄᴀᴜsᴇ ʜᴇ ᴡᴀs ᴅɪᴀɢɴᴏsᴇᴅ ᴡɪᴛʜ ʟᴇᴡʏ ʙᴏᴅʏ ᴅᴇᴍᴇɴᴛɪᴀ.

ʙʀᴜᴄᴇ ᴡɪʟʟɪs ᴊᴜsᴛ ʟᴇᴀʀɴᴇᴅ ᴛʜᴀᴛ ʜɪs ɪʟʟɴᴇss ɪs ғʀᴏɴᴛᴏᴛᴇᴍᴘᴏʀᴀʟ ᴅᴇᴍᴇɴᴛɪᴀ (ғᴛᴅ) ᴀɴᴅ ʟᴇᴡʏ ʙᴏᴅʏ ᴅᴇᴍᴇɴᴛɪᴀ.

ᴏɴᴇ ᴏғ ᴛʜᴇ ʜᴀʀᴅᴇsᴛ ᴛʜɪɴɢs ᴛᴏ ᴘʀᴏᴄᴇss ɪs ᴛʜᴇ sʟᴏᴡ ᴄʜᴀɴɢᴇ ɪɴ ᴛʜᴇ ᴏɴᴇ ʏᴏᴜ ʟᴏᴠᴇ. ʙᴇᴄᴏᴍɪɴɢ ᴀ ᴄᴏᴍᴘʟᴇᴛᴇʟʏ ᴅɪғғᴇʀᴇɴᴛ ᴘᴇʀsᴏɴ. ᴇᴠᴇʀʏᴛʜɪɴɢ ᴄʜᴀɴɢᴇs.

ᴊᴜsᴛ sᴏ ʏᴏᴜ ᴋɴᴏᴡ... ɪᴛ’s ᴄᴀʟʟᴇᴅ ᴛʜᴇ ʟᴏɴɢ ɢᴏᴏᴅʙʏᴇ. ʀᴀᴘɪᴅʟʏ sʜʀɪɴᴋɪɴɢ ʙʀᴀɪɴ ɪs ʜᴏᴡ ᴀ ᴅᴏᴄᴛᴏʀ ᴅᴇsᴄʀɪʙᴇᴅ ɪᴛ.

ᴀs ᴛʜᴇ ᴘᴀᴛɪᴇɴᴛ's ʙʀᴀɪɴ sʟᴏᴡʟʏ ᴅɪᴇs, ᴛʜᴇʏ ᴄʜᴀɴɢᴇ ᴘʜʏsɪᴄᴀʟʟʏ ᴀɴᴅ ᴇᴠᴇɴᴛᴜᴀʟʟʏ ғᴏʀɢᴇᴛ ᴡʜᴏ ᴛʜᴇɪʀ ʟᴏᴠᴇᴅ ᴏɴᴇs ᴀʀᴇ ᴀɴᴅ ʙᴇᴄᴏᴍᴇ ʟᴇss ᴛʜᴇᴍsᴇʟᴠᴇs.
ᴘᴀᴛɪᴇɴᴛs ᴄᴀɴ ᴇᴠᴇɴᴛᴜᴀʟʟʏ ʙᴇᴄᴏᴍᴇ ʙᴇᴅʀɪᴅᴅᴇɴ, ᴜɴᴀʙʟᴇ ᴛᴏ ᴍᴏᴠᴇ ᴀɴᴅ ᴜɴᴀʙʟᴇ ᴛᴏ ᴇᴀᴛ ᴏʀ ᴅʀɪɴᴋ ᴏʀ ᴛᴀʟᴋ ᴛᴏ ᴛʜᴇɪʀ ʟᴏᴠᴇᴅ ᴏɴᴇs.

It’s a cruel disease.

Not going to do the Urolyft procedure. H. Lee isn’t actually retaining enough urine to warrant it. The exam messed him up enough! The pain first then the infection! His functionality plummeted. We will monitor and catheter if necessary. He remains super confused and still in diapers. Can feed himself though. We did go downstairs to the restaurant for dinner last night and took a short walk around the grounds. Gait and balance ok but he is super sensitive to sounds, the wind and hallucinating a bit so he doesn’t really want to leave the apartment. He is frightened by noises and random visuals I don’t really see. He did have physical therapy yesterday - in the apartment. I’m in the trenches here once more. Tough going right now but I’m ever hopeful for improvement. One day at a time as the saying goes.