Living with Lewy

Living with Lewy My husband H. Lee Peterson was diagnosed with Lewy Body Dementia over 5 years ago.

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 ...
02/14/2025

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.

Elle & Varun visited from Texas - so we all went to see H. Lee, who was very pleased despite not knowing our names! I’m ...
11/23/2024

Elle & Varun visited from Texas - so we all went to see H. Lee, who was very pleased despite not knowing our names! I’m becoming visitor wife and no longer crying my heart out in the car after every visit.

10/29/2024
Together again!  I miss him so much!
10/19/2024

Together again! I miss him so much!

H. Lee did not regain functionality since early August.  He remained incontinent, confused and agitated.  I tried every ...
10/06/2024

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 ɪʟ...
10/06/2024

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.

There is humor everywhere!
08/03/2024

There is humor everywhere!

08/03/2024

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.

07/30/2024

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.

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Oxnard, CA

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