On Monday evening my mom took her meds with a little thickened water, and after that, she stopped responding. On Tuesday morning when her caregiver tried to wake her, she still wouldn't respond. She was unresponsive all day and did no eating or drinking yesterday. She's opened her eyes a few times, has mumbled a few words, and has nodded slightly in response to questions, but otherwise, she is asleep. Today is the same as yesterday. I was on a school trip at the coast with another teacher and 10 high school students when I was woken by the caregiver early yesterday morning. I packed up, ate breakfast, and left for home, arriving just before noon. I stayed there the rest of the day, overnight, and just came home this afternoon for a quick shower before I return to her. Her assisted living facility is feeding me in her room which is so kind of them. She is on morphine every hour and Tylenol suppositories every 4 hours to keep her fever down. It's been 99-102, up and down, since Monday evening. She's also on oxygen for comfort only. She registers pain by scowling and groaning when she is re-positioned, which they do every two hours. They've started giving her morphine 15 minutes before turning her.

Today the hospice nurse checked her feet for mottling, her heart rate, her lungs, and her blood pressure. There is fluid in her lungs. Her heart rate is fast, but her blood pressure is still good, and she has no mottling yet. She told us that when her fever and heart rate go down, and we begin to see the mottling in her extremities, death will be very near. She says it's not happening today yet but could happen tomorrow or at least within a week.

My dad is struggling quite a bit with this turn of events. It didn't help that he couldn't sleep at all last night. We brought in 2 cots, but he couldn't get comfortable in his. My husband is bringing a recliner in for him this evening. I'll be staying with them in her room again.

As hard as this is, I also want to tell you that I find it a beautiful experience to be able to love her through this. I'm giving her foot rubs, swabbing her mouth, playing music for her, talking with her, holding her hand, and just feeling so blessed to have had her for a mother. The grief is there, and I expect it will come like a torrent when this is all over, but it's going to be O.K. I'm going to be O.K.

your mom is so lucky to have you.. will be thinking of you and your family.. hope your dad can get settled comfortably tonight in the recliner.. how sweet of your hubby to bring that over..
so glad your mom is not having much pain and they are there to help with any she has...
wishing you and your family the best...
cindi

My thoughts and prayers are with ye at this difficult time. It sounds like your Mom is very peaceful and that she could not have better care. May God give you all the strength that you will undoubtedly need at this time, and I am sending angels ye're way. God bless,
Ger xx

Sending you a big, gigantic hug. I'm glad you are able to be with her through her final hours and days - it must be very comforting for her. Lynn

How wonderful to be there and have such a loving experience. Prayers for you and your Dad.

I pray the transition goes peacefully. You are an awesome caregiver and your mother is blessed to have you.

Both your parents are so lucky to have you with them! So glad your mom is peaceful.
Sending big hugs, and strength!
~heidi

Sandwich Mom,
It seems that your mother's passing will be very peaceful and surrounded by her loving family. You are continuing to do a great job in caring for your dear mother.
Robin

Diana,
I am thinking of you, your dad, your mom and all who love your mom. I know your mom is proud of you and grateful, just as you are grateful for her. Hugs and prayers for peace are sent your way. Take care.

Hugs.

The world is a richer place to have people like you in it. Thank you.

She will never be far from you. May you hear the angels sing in welcome. God be with you all.

May your Mom's passing be peaceful and you will carry her in your heart forever !

Thank you, everyone, for your kind words. Mom's battle finally ended yesterday afternoon (June 15) at 1:06 p.m. She was 68 years old. My dad, aunt, and I were with her and loving on her until her last breath. I ended up sleeping in her room three nights. I can't say enough about how wonderful her facility was during that time--bringing us trays of food and drinks, letting us use her shower in the morning, even giving us hugs. When children visited, they gave them cupcakes. They said they were just so grateful that we were all there for her because too many of their residents die alone. They and hospice prepared us well to know what to expect at the end. She wasn't able to open her eyes or respond at all by Thursday, but we still talked to her, read to her, played music and sang to her until the very end. Her main daytime caregiver sobbed when she found out Mom died. I'm a little concerned about my dad, but he's handling it better than I expected he would. Now that Mom is free, I can give Dad more attention. I haven't yet finished her obituary, but when I do, I'll post it. We donated her brain to Oregon Health Sciences University, and I'll also post what we learn from that.

Timeline: Symptoms showing in 2007--physical and cognitive, but we attributed them to all sorts of other causes, not putting them together nor realizing how serious it was. I realized something was very wrong June 2009 after spending an entire weekend with her. Began with a sleep specialist thinking it was sleep apnea. Although diagnosed with sleep apnea, she didn't improve with treatment. Finally diagnosed with probable Lewy Body Dementia by OHSU in May 2010. Dad was unable to care for her at home anymore and moved her into assisted living facility September 2011. In addition to frequent falls, she had begun leaving the house in the middle of the night. At that point she could still talk but often didn't make sense. She could walk while holding someone's arm. She needed help with bathing, dressing, and toileting and was just beginning to become incontinent. She had a good appetite. By January 2012 she was often in a wheelchair and was just beginning to have trouble swallowing (coughing with liquids). She often needed help getting food to her mouth. She was completely incontinent unless caregivers happened to get her on the toilet on time. She developed a respiratory infection with a fever in February 2012 with some fluid in the lungs, and I don't believe she ever completely recovered from that. She was on pureed foods by May, eating only about half. She had a UTI in May and received antibiotics for that. On Monday, June 11, she stopped taking in food and water and stopped responding except for occasional nodding. She lived 3 1/2 more days after that, but she didn't respond at all or open her eyes after the second day. Her passing was as peaceful as could be expected.

God bless you and your family in your time of grief. It sounds like your mother's passing was the best you could have hoped for under the circumstances. You've done a great job! Thanks for sharing with us. Hugs!

So young, my heart goes out to you and your Dad. Passing is the only way to be free from this horrible disease. It's going to be difficult as you go forward but remember your Mom is no longer suffering, she's in a better place.
Fondly,
Gerry