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 Mom is almost free 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Mom is almost free
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.


Wed Jun 13, 2012 6:18 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Mom is almost free
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

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jun 13, 2012 6:44 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom is almost free
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

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Jun 13, 2012 6:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Mom is almost free
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

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jun 13, 2012 8:42 pm
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: Mom is almost free
How wonderful to be there and have such a loving experience. Prayers for you and your Dad.

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Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago


Wed Jun 13, 2012 8:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom is almost free
I pray the transition goes peacefully. You are an awesome caregiver and your mother is blessed to have you.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jun 13, 2012 9:31 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Mom is almost free
Both your parents are so lucky to have you with them! So glad your mom is peaceful.
Sending big hugs, and strength!
~heidi


Wed Jun 13, 2012 9:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom is almost free
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


Wed Jun 13, 2012 10:07 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Mom is almost free
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.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Wed Jun 13, 2012 11:23 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mom is almost free
Hugs.

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

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jun 14, 2012 2:10 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Mom is almost free
She will never be far from you. May you hear the angels sing in welcome. God be with you all.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Thu Jun 14, 2012 9:18 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom is almost free
May your Mom's passing be peaceful and you will carry her in your heart forever !

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Irene Selak


Thu Jun 14, 2012 10:01 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Mom is almost free
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.


Sat Jun 16, 2012 9:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom is almost free
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!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jun 16, 2012 11:52 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Mom is almost free
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

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jun 17, 2012 7:10 am
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