Living with Lewy

We were so happy!
Haven’t posted for a while as I’ve been getting used to visitor wife role, advocating for H. Lee at the memory care home, dealing with my loss and grief and trying to find myself. I’m not randomly bursting into tears anymore - popwhich is an improvement. Although I do still tear up. Have a referral for therapy that I have to take advantage of. I’ve been catching up on my own medical stuff (ignored these last couple years) and trying to take good care of myself. Sleeping. Hot salt baths. Walking. Hydrating. Healthy shakes. Juicing. Good food. Less drinking. ……. Really! A lot less. Weekends not daily and less at weekends too. My weight is good. Always has been luckily but I do need to do more to maintain my muscle strength and core. Visiting H most weeks Wed or Thur. I take him a great lunch and we go outside to eat it then take a walk around the grounds. He is obliviously happy. Talks a lot of gibberish but there are still moments where he is present. He is shuffling a bit. Doesn’t get enough exercise and he pitches forward sometimes. His body is finally being cared for properly - grooming is being done regularly although I always take my kit to shave his head, do the nasal/ear hair thing, cut his nails if needed. And I get in a good teething brushing. Although the dental hygiene is better is does need more attention. So we are settling into a new routine. He doesn’t know who I am. Doesn’t know my name. I no longer ask him as it frustrates him when he cannot remember. But on a good day his face lights up when he sees me! I’ll take it! His functionality is stable at the level he is now. He can feed himself. But needs help dressing and bathing and toileting. Spatial awareness isn’t good so he will sit down and miss the chair, that sort of thing. He has a caretaker as well as a nurse assigned daily to get him safely through the day. We are lucky to have Harry’s Haven.

There is humor everywhere!

H remains at low functionality but no more pain so he is more comfortable. Had a caretaker yesterday for the first time. She gave me mad tips on handling diapers, took him for a walk, gave him lunch and watched Olympics with him so I got a much needed break. Caretakers are expensive so must use sparingly but this weekend we ended up in ER all Sunday after a most psychotic Saturday night as H Lee got a roaring UTI from the Urologists probing Thursday. I called 911 Sunday morning. So I was just exhausted. Better sleep last night. Not sure about him having this procedure. I’m going to wait to see how he is after the infection clears up. The procedure will knock him back down again. Going to talk with his GP and Palliative Care team for advice on moving forward. Decisions decisions decisions.