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 Are we in the final stage? 
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Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Re: Are we in the final stage?
Hi Allison,

(and Sandwich Mom and Liz),

Our stories are so similar and I just joined the forum myself. My mom is also relatively young (70) and had a rapid decline almost overnight this past March. We had seen the beginnings of it after surgery last August '11 but she rallied and was able to continue to live at home until her rapid decline last month.

Just as you mentioned Allison, my mom also had signs of the sleep disorder for years - yelling out and thrashing in her sleep.

Just as you mentioned Liz, my mom also has a history of mental health issues (mainly depression) and I think became dependent on Oxycontin since her surgery last August, which I think exacerbated her hallucinations and delusions.

Just as you both, and others, have wondered, I myself have asked what stage of this disease are we at? My mom is still quite vocal at times.

I would like to extend my sympathies to all of you on this board!

Melissa

_________________
Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.


Tue Apr 10, 2012 9:21 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Are we in the final stage?
My mom had restless leg syndrome long before we knew anything else was wrong. She was diagnosed with severe sleep apnea in the summer of 2009, and we hoped she'd go back to normal after being on the cpap for a few months. Instead, she got worse and eventually was diagnosed with lbd. So in a way I guess she had a sleep disorder, too. Major life changes tended to cause depression in her, but she'd always overcome it without medication after a few months, so it wasn't clinical depression.


Tue Apr 10, 2012 10:30 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Are we in the final stage?
Sandwich mom and all~
Sounds like we are all in the same state of this horrible disease!
My mom,82, had a probable LBD diagnosis in 2009 after a fall, but was diagnosed with ALZ dementia 15 years before that.

she still lives at home with my dad, who amazes me with his strength every day!

She needs help with her walker, can't hold a conversation (usually one word answers) duly incontinent, but sometimes gets to the bathroom in time. Her appetite has decreased (lost 15 pounds in last 6 months).

We began her hospice evaluation 2 weeks ago,after several falls within a week (she forgets to use her walker in the house). A few days after the initial evaluation, she fell getting out of bed and fractured her hip. She had a partial replacement (thankfully she came thru the surgery well!) and is now in a rehab facility for her hip.

Luckily, when she was first diagnosed with ALZ she knew the road ahead better than any of us (read my introduction) and did her POA and advance directive back in 2004.

We are just hoping she makes enough progress in physical therapy that she will be able to return home with hospice service to grant her final wishes..however long that may be.

Thank you all for your stories (especially sandwich mom, who I fully see myself in!) they have not only been a comfort, but a wealth of information!
~Heidi


Fri May 11, 2012 8:41 am
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Are we in the final stage?
Just checking in with an update. My mom has started to lose weight due to not eating much. I haven't seen her eat more than four bites per meal for weeks now, and those meals took over an hour. She holds the food to her mouth (lately to her nose), but she won't open her mouth. She can hold it there for 15-20 minutes. Prompting her verbally doesn't help. Pulling on her chin doesn't help. I'm told that every now and then she'll finish most of her meal, but I haven't witnessed that since early February and I'm there twice a week, usually during a meal. A week ago I showed up just before noon and found her holding a piece of peanut butter and jelly sandwich up to her mouth. It was all dried out. The caregiver said she'd had it since snack time (two hours prior). The hospice nurse and staff at the facility think she may be holding food in her mouth and possibly aspirating a bit, and that's why she's not taking more in. They've begun to give her pureed food since she'll take more of that in, and they are now thickening her liquids.

She's sleeping most of the day, walking less, has a fever, and has had fluid in her lungs for over a month at least, maybe two. I expect the end is near but no one has confirmed that. I keep hearing that she may linger for months still if she continues to take in nourishment. I have such a mixed bag of emotions over this. My mom is still young (68), and we were very close. I've done a good deal of grieving and am ready for the end. I already miss her terribly, but her passing will mean closure at least. What is most difficult for me now is not knowing WHEN it's going to happen. I feel like my life is kind of suspended in a waiting game. I can't plan anything that would take me too far away from her or would be hard to cancel at the last minute. Then I feel bad for finding that difficult because at least I have a life left to live.


Fri May 11, 2012 2:35 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Are we in the final stage?
Sandwich Mom : I am so sorry for you. My mother is 73 and I am also a sandwich mom. Is your mom cycling at all? My mom has been in bad shape and then gotten close to normal later (albeit a bit paranoid). When my mother wasn't eating - we took her out to eat and found that she liked that a lot and would eat everything as long as it wasn't at the facility. She absolutely HATES the food at the facility (even when the food is good). It sounds like your mom may be in a different space than my mom, but if she starts to cycle into a better place, try taking her out to eat.

Good luck - Liz


Fri May 11, 2012 5:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Are we in the final stage?
Sandwich Mom,

Can you have your mother evaluated by a hospice agency? Does the care facility allow in several hospice agencies? If so, ask around as to which one is preferred and why. A good hospice RN can give some indication.

Also, the author of the booklet "Gone from my Sight" gave a terrific presentation on the signs of dying. These signs can begin months before death. You can find my notes from the online video (and a link to the video) here:
http://forum.psp.org/viewtopic.php?f=2&t=8800

The online video is about an hour and a half. It might take 10 minutes to read the notes.

You might read the book "Final Gifts." From that book and others, I've learned it's important to say our good-byes, and give permission to die. It may be necessary for you to go away so that your mother can die. So I would encourage you to take weekends away or other trips. You will need to decide in advance what you will do if your mom dies when you are away.

While you are in this transition period, I encourage you to make funeral arrangements for your mom, and decide if you intend to donate her brain upon death. It sounds like your mom may be a few months away from death, and having all of these arrangements in advance will reduce some stress when death comes.

Robin


Sat May 12, 2012 2:01 pm
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Joined: Thu Dec 08, 2011 5:23 pm
Posts: 14
Post Re: Are we in the final stage?
Allison, my mom (age 83) was able to leave the ALF and go out to eat with me three times a week up until the end of Feb. Then she started not wanting to go out. I asked if she felt bad or was in pain and she said no. I asked if she was just tired and she said yes. I did take her for a hair appointment in early March but that was the last time she left the facility. She began sleeping day and night and doing strange things that she had never done before when she was awake. They checked her for a UTI and did bloodwork but found nothing. She didn't want to eat or drink very much and just wanted to sleep and be left alone. She also began throwing away her meds or spitting them out. We finally made a disastrous trip to the ER - horrible for her. I had to stand by her bed the whole 8 hours we were there to keep her from pulling out her IV and to keep her covered. By that time she did have a UTI from not drinking much and she was dehydrated so they gave her IV fluids and antibiotics. They didn't find anything else wrong. She went quickly from being able to go to the bathroom on her own to having help to being in Depends. Her cognition took a nosedive. She lost 25 pounds from March 11 to April 11. She couldn't walk anymore without a person on each side of her, then didn't get out of bed at all. The doctor at the ALF called for a hospice eval in April at my request and she qualified. I've left out a lot of things in order to keep this short, but basically she declined from the first of March until May 4th when she passed away.

This is my first Mother's Day without her and I miss her so much, but in all honesty, it was a blessing when her suffering ended, and I can't be sad about that. I know everyone is not "religious" and I don't want to offend anyone, but it's my belief that she is in Heaven with my dad - right where she wanted to be.

I only posted on the forum a couple of times, but I learned so much that helped me and Mom through the last six years. My heart goes out to anyone who has this horrible disease and it most definitely goes out to all the caregivers who do the best they can for their loved ones even though we sometimes don't know what the best is. Happy Mother's Day, Mom. I love you forever.


Sun May 13, 2012 7:32 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Are we in the final stage?
dmdaviss,
I just read this. I'm so sorry to hear that your mom has passed. I also believe she's where she wants to be now--with your dad and free of this horrible disease. Even though my mom's body is still living, I've been grieving the loss of her for 3 years now. I'm weary, and while I hate the thought of her dying, I long for her to be set free.

Robin, my mom has been under the care of hospice for several weeks. We already have arrangements for a brain donation with Oregon Health Sciences University--all the paperwork is signed, and they're expecting her. This Friday my dad, aunt, and I are meeting with the mortician/funeral director/cemetery owner who will be handling the transportation of her body to OHSU and back again. I know him personally from church, so that is a comfort. Her obituary is half written, and we are going to meet again soon to plan her funeral. Last Friday Dad and I talked and decided that we'd rather get all the arrangements done now because we're afraid it will be too emotionally difficult to deal with once she goes.


Wed May 23, 2012 12:43 am
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Are we in the final stage?
dmdaviss,
so sorry to hear of your mom's passing, but glad for you and your family that she is finally at peace and no longer suffering from this horrible disease.

Sandwichmom,
I feel your pain! My mom (although much younger than yours) was discharged home from rehab today. She has almost no mobility (very difficult to get from car to wheelchair) and just the 3 mile trip home with transport was enough to tire her out for the day. a month ago, she was able to eat out with my dad every night, and now only has a few bites with each meal.

I hope that both our moms are relieved of this nasty disease with little suffering. My mom is also on a "bridge" to hospice program..hoping she can get a bit more PT for her hip before hospice is back in full swing. She also sounds like she has a bit of fluid in her lungs. Try to live your life the best you can. Make every effort to take joy in your children's lives and accomplishments, as I'm sure that what your mom would want for you.
~Heidi


Wed May 23, 2012 10:07 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Are we in the final stage?
Oops! Should have said older! Needless to say..been a rough day!
~Heidi


Wed May 23, 2012 10:09 pm
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Joined: Mon Dec 12, 2011 3:44 pm
Posts: 3
Post Re: Are we in the final stage?
Hello, this is Allison, the original poster. I'm posting now to send a belated thank you to all of you who have responded and shared your stories in this particular forum. My mom died on April 30 of this year, only 2 months after my original post. These last months have been extremely difficult, as my family and I still struggle to process how quickly this disease took her life and changed ours so dramatically. While I haven't posted much here, this community has been very helpful to me, and I want all of you to know that you have not only my gratitude, but also my best wishes as you continue your own struggles with this disease and the loss of your loved ones.


Mon Sep 03, 2012 2:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Are we in the final stage?
Thank you, Allison, for the update. I'm sorry to hear about your mother. Lewy is heartbreaking and you and your family are in my prayers as you work through your sorrow. God bless and keep you!

_________________
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.


Mon Sep 03, 2012 2:39 pm
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