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 LBD caregivers in FL having a hard time 
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Joined: Wed Aug 11, 2010 3:05 pm
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Post LBD caregivers in FL having a hard time
Hello,
I'm sorry it's taken me so long to find this forum. My wife and I have been primary caregivers to my mother in a nursing facility in FL. We brought her down from SC (in an ALF apartment) the beginning of March of '09 after evaluating her and consulting with her primary doctor up there. At that time, she had been diagnosed with ALZ but had yet to see a Neurologist. Once we had her settled into the facility down here, we were able to obtain a referral to a Neuro who is familiar with LBD. He carefully interviewed us (as Mom was unable to answer many of the questions reliably) and weighed the symptomolgy, conducted several tests (including and MRI and EEG) and the diagnosis of LBD with Parkinson was delivered. So, we have cared for her and watched her slow progression since and brought hospice in (at the Neuro's suggestion) about 4 months ago.
This brings us to the present. About a week and a half ago, I received a call from my wife that Mom's condition had changed. She was now speaking incoherently, saying things that were inappropriate to the situation at hand and staring with a vacant expression when not responding to stimuli. This has progressed, in this short time, to her being mostly non-verbal (now she mostly just nods or says "MmHmm"), unable to stand at all, difficulty swallowing or downright refusing her meds. We walked into her room on Monday to see her extremely pale and her breathing rather shallow. This lasted for a couple of hours and then the color returned and she was breathing regularly again. Yesterday evening, the same thing happened, but only lasted a short time. Everyone in the facility has made mention of how different Mom is now and our hospice nurse has stated that she appears to have prgressed in to an end stage.
This is tearing me and the rest of my family up inside. In fact, one of my sisters (I am the youngest of 4 siblings) wound up in the ER because her blood pressure skyrocketed and she passed out after I called to tell her of Mom's condition. I believe I'm losing my Mom! No matter how hard you try to prepare yourself this inevitability, it doesn't seem like you're ever really ready. We have a care plan meeting with the facility and hospice tomorrow. My biggest questions are what next, and how long. Will she (we) suffer through this stage for very much longer? Will this get much worse? What can we do to make sure she's comfortable?
At this point, all I can think to do is to just be there. To tell her how much I love her and to reassure her that she doesn't have to keep fighting for us. I don't want her to suffer. This is not the kind of life she would have ever wanted.


Wed Aug 11, 2010 3:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: LBD caregivers in FL having a hard time
How awful for your mom and for all of you! Do you happen to know if she has been given any new medications prior to this decline? The reason I ask is that, two years ago, my husband was put on Risperdal and was at death's door until I [not the doctors, mind you!] figured out that he should not be taking it. He recovered to baseline, thankfully.

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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 Aug 11, 2010 3:50 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: LBD caregivers in FL having a hard time
Welcome to the forums, sorry for your need to be here, I also want to mention with your Mom's sudden decline to check for possible infection such as an UTI, Good luck at the meeting tomorrow!

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Irene Selak


Wed Aug 11, 2010 5:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: LBD caregivers in FL having a hard time
Most importantly, have you discussed these symptoms with the neurologist? What did he/she make of them?

Of everyone, hospice may have the best idea how much longer this will go on but even they may not know.

To me (a layperson), these symptoms do not sound like the end is near because the symptoms only last for a few hours. I'm not even sure they are LBD-related. Neurodegenerative diseases don't tend to work like that.

Have you and your family received counseling through hospice? By virtue of the fact that your mother is on hospice, some MD felt that it was likely that your mother would die within 6 months. It sounds like your entire family would benefit from a social worker and/or spiritual adviser's involvement.

Has your family discussed brain donation? What about body autopsy? I found both to be very helpful in giving me peace of mind to know exactly what my father died from, and what pathologies were at work in his brain.


Wed Aug 11, 2010 7:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: LBD caregivers in FL having a hard time
Welcome, and I'm very sorry for your need to be here. My dad's condition declined very rapidly last year, so I know how shocking it is when they suddenly lose several of their physical and cognitive abilities overnight.
The hospice folks should be good at telling you what can be done to make her more comfortable.
You and your sisters need to take care of your own health - you all deserve to live as healthily and happily as you can given the stressful circumstances. (I landed in the ER 8 mo. ago with a heart problem myself from the stress - it takes one to know one!) I've finally figured out a few ways of destressing a little better than I was doing and it sounds like your sister needs to do this too. It won't do anyone any good if she lands in the hospital. Take care,
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 Aug 11, 2010 9:28 pm
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Joined: Wed Aug 11, 2010 3:05 pm
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Post Re: LBD caregivers in FL having a hard time
Thank you all for your replies to my original post. In answer to some of your questions, we did have her checked for any infections and she is negative for UTI and c-dif; no new meds or treatments were introduced prior to this decline; and, yes, hospice has been wonderful and I, personally, will be starting some counseling with the social worker very soon.
As for today's hospice and care plan meetings, we have decided to take Mom off of all but her essential meds to give her body a chance to kind of "reset" and, hopefully, stop the constant diarrhea. As for the episodes of shallow breathing and paleness, the hospice nurse said that it sounded to her more like cardiac than anything else (Mom does have many underlying medical issues on top of the LBD) and we agreed that it would probably be a blessing if she went that way. Also, they started her on a pureed diet (which she tolerated quite well, and ate better yesterday than I've seen all week) and the speech therapist will be seeing her several times a week for treatment.
I was able to catch Mom in a rare time of clarity yeterday, and she let me know that she doesn't want to take the meds anymore, she's tired and ready to quit fighting this disease and is ready to "go home". I really can't blame her and will always be there for her to encourage her and to give her the love and support that she deserves. I never leave her room without telling her "I love you", and the last two days, even though she's been pretty much non-verbal, she has replied as I leave with a slightly slurred "I love you, too". That alone means more to me than you can imagine.


Thu Aug 12, 2010 2:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: LBD caregivers in FL having a hard time
Your mother is blessed to have a son like you and I'm glad to hear she is more comfortable. I agree that a cardiac event would be a blessing as a quick end to the misery of LBD. A neighbor's husband died recently in such a manner after years of PD/PDD [he may have had Lewy]. He had decided he wanted to walk again and the PT had him walking in the hall at the SNF--he was apparently doing very well but his heart just stopped later that day. His wife was both grieved and relieved. As your mother has rightly suggested, her permanent 'home' is somewhere else and she feels ready to go there. I pray for an easy transition and peace for all of you. God bless!

_________________
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.


Thu Aug 12, 2010 4:02 pm
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Joined: Wed Aug 11, 2010 3:05 pm
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Post Re: LBD caregivers in FL having a hard time
Thank you mock for your post. I know that Mom has always had a strong faith and, as a believer myself with a strong faith as well, I do believe that Mom is now looking forward to her eternal home. That in itself is quite amazing as she has had two phobias throughout her life; cancer and death. In fact, she has told me numerous times (both before onset and during LBD) that she is so afraid of dying. I have tried to reassure her through scripture and her faith that she should have no fear since the Lord and my father and brother (who they lost in the '50s at the age of 3) would be there to welcome her. Up until now, that hasn't seemed to convince her (some phobias are just immune to logic). But now...well, like I said before, her mindset is nothing short of amazing. Also, we have and continue to pray that she will be able to pass peacefully and, hopefully, in her sleep painlessly.
Now, that being said, we didn't have such a great day. She didn't want to eat all day. Yesterday's two great feedings of the pureed are now just a memory. I guess we will just have to wait to say what a new day holds for us.


Fri Aug 13, 2010 1:12 am
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