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 Mom's rapid decline.... and recovery! 
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Mom's rapid decline.... and recovery!
My mom is in the hospital. This started as an infection in her leg. She was started on an antibiotic on the 30th Aug then changed to Bactrim on the 2nd Sep because the first one wasn't working. She woke up on the 8th a little confused but we saw her pcp that day and her infection was looking very well and almost healed, she finished the Bactrim on Thursday the 8th and was still ccnfused that evening and had a crash landing against the toilet tank in our main bathroom because she thought she was in her own bathroom which has a raised seat. Friday morning she fed herself breakfast and we had her anti coag appt and her INR was fine (2.9), we came home and I fixed her lunch and she couldn't figure out how to get the spoon in the cup of her yogurt. She was having numerous hallucinations that other people were in the living room all afternoon. She was talking to my niece Joanne and asked me why her head was on backwards, I told her it wasn't real, it was Lewy's and as long as my head stayed on right we were okay. By dinnertime when I tried to give her her meds ( I put them in yogurt and she swallows it) she was chewing the pills and I had to keep telling her to just swallow, but she didn't get it. She couldn't feed herself so I fed her some soup but she kept making faces like I was poisoning her. Her parkinsons kicked in and all four limbs were shaking and moving all the time, and she kept calling her mommy. I couldn't get her to drink or eat anything, and her cognition was in a very rapid decline, so took her to a different ER ( not the one we tried the night before), and they started running tests and admitted her. At first they thought ( as I did) that the infection wasn't really cleared up so she needed IV antibiotics, so she was started on those. The nurse in the ER asked her what her DOB was and it took her 5 minutes to come up with 29.......32, and she never did get the October ( her dob is 10/29/32). When I asked her what my name was she said "thigh" and my sister's name was "lion". I called all of my siblings and let them know about her rapid decline and told them that I had no idea why she had such a rapid decline and I didn't know if she was coming back or not , that I hoped with the IV antibiotics she would get better but I just didn't know. I did a lot of crying, especially when she was asking for daddy and her "mommy , please help me", it just broke my heart. Last night when i came home from the hospital to get some much needed rest ( I hadn't slept at all Friday night), she was resting a little better, but still didn't know who any of us were or where she was. I did get a glimmer of hope when the doctor examined her abdomen and my mom opened her eyes , looked right at her and said " I have a hernia". It was the most sense she had made in three days! So off I go to home with a very heavy heart. :cry:
When I got to the hospital this morning, my mom was sitting up in a chair, had been showered and shampooed and I said "Hi" she said "Hi", I asked her if she knew who I was and she said "Ellen" and I asked her her birthdate and she said "10/29/32" and i just started bawling!!! My mom's back! She is as lucid as she was before and what had happened was she was running low blood sugars because of the infection, then when she was started on Bactrim, it ( along with the low blood sugars) caused her to go into renal failure which caused her cognition to go into a very rapid decline.
The doctors are going to change some of her diabetes meds and she will probably be home tomorrow. I have never been so happy and so relieved in my life!!!!
This is a strange disease and not for the faint of heart.... I am so exhausted right now just from the highs and lows of the past 3-4 days that I came home to take a much needed nap ( and my sister is forcing me )! :lol:

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun Sep 11, 2011 4:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom's rapid decline.... and recovery!
Great news, Ellen! :P We've been through a few similar 'adventures'. As you say---not for the faint of heart.

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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.


Sun Sep 11, 2011 4:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Mom's rapid decline.... and recovery!
You must be exhausted! That is pretty amazing that she came back to such a high functioning level of cognition from where she was, but diabetes can have profound effects like your mom was experiencing. A former coworker was diabetic and she had serious cognitive problems sometimes till they got her meds changed and she stabilized. 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.


Sun Sep 11, 2011 6:02 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mom's rapid decline.... and recovery!
That is totally awesome! I am so glad for you both.

As tired as you must be, taking the time to share in such detail on this site is a real gift for us, especially to newbies who haven't experienced this particular roller coaster yet. In spite of what many health care professionals will tell you, a Lewy decline is not necessary permanent, especially if it accompanies an illness, infection, or change in medicines.

And I gotta tell you, I hate low blood sugar! I finally got my doctor to take me seriously and change my meds when I described an episode at a mall where I was incoherent and had to rely on my demented husband to get me some orange juice. Oh, yah, you are are caregiver, aren't you? Well then I guess we can't have you going low. Grrrr ... If I had the energy I'd be mad that they would do it for Coy's sake but not mine, but at least I got off that drug. I hope they get your mom's diabetes drugs stabilized on the first try, but it might take a little trial and error. That's definitely treatable.

I am so glad that (this time at least) there were discoverable and treatable causes to the apparent decline.

Thanks for sharing.

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


Sun Sep 11, 2011 8:35 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom's rapid decline.... and recovery!
Good news. Did the MDs conclude that your mother shouldn't be given Bactrim (or similar meds) in the future?


Sun Sep 11, 2011 10:08 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Mom's rapid decline.... and recovery!
Just got home from the hospital again, one of my sisters is going to spend the night there with her, because now that she's feeling better she's going to start wandering. She called me this afternoon and asked if I was on my way to pick her up and I said no, but I am going to come see you so she said "didn't the nurse call you?" and I said no but I'm on my way anyway. So I asked my sister who is here from out of town if she would mind staying with her just in case she decides to get up and walk home or call a cab! I will pick them both up in the morning when she's ready to be discharged.
Yes, Robin, we are definitely not giving her Bactrim anymore, and it just so happens that it was the ANP that I'm not fond of who prescribed it.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Sep 12, 2011 12:33 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom's rapid decline.... and recovery!
Make sure you add 'sulfa drugs' to your mother's allergy list. A LOT of people have problems with these drugs, not just those with LBD.

_________________
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 12, 2011 9:19 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom's rapid decline.... and recovery!
Ellen, so glad to hear your Mom is recovering well. I know only too well the rollercoaster that you are on. Been there, done that, and still doing it. It is so very scary, and you go from low to high in such a short space of time. How many times I have prepared myself for the worst, and then, lo and behold, Dad is nearly better than I am. I have often joked to friends that he will bury me, with all the stress. :lol:
Ger x

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


Mon Sep 12, 2011 11:21 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Mom's rapid decline.... and recovery!
So glad to hear from you, Ger, I thought of you often during our "adventure" and wondered how things are going with your dad. Hope all is okay, I know how it change from day to day, and sometimes hour to hour. Please know that I think of you often, along with several of the other people on the forums....I'm off to bring Mom home from the hospital.....at least that was the plan last evening!! Thanks for everyone's support, it means so much to me to know I have you all in my life, "cause sometimes my family is a trip.....another story for another day!
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Sep 12, 2011 11:58 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom's rapid decline.... and recovery!
Thanks Ellen, he is now in a wonderful nursing home, but cries every day to come home. He is not a well man, but is where he needs to be, not where he wants to be. I beat myself up every day thinking maybe I should bring him back home - that is my heart - my head knows that I cannot look after him any more, but my heart is broken. On top of that, I am havng a lot of problems with my Mom - too much to go into right now, and my husband lost his job. I am feeling completely overwhelmed. Thats why I haven't been posting, but I do visit often. Thanks for thinking of me, xxxxxxxxxx

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


Mon Sep 12, 2011 3:35 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Mom's rapid decline.... and recovery!
Dear Ger,
So sorry to hear all you are going through...please know you are being thought of....I will light a candle for you.....

Best to all,

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Sep 12, 2011 7:21 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Mom's rapid decline.... and recovery!
Jeanne,

Thank you thank you for this:

"In spite of what many health care professionals will tell you, a Lewy decline is not necessary permanent, especially if it accompanies an illness, infection, or change in medicines."


Best,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Sep 12, 2011 7:23 pm
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