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 End Stage Fears 
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Joined: Fri Feb 06, 2009 7:22 pm
Posts: 10
Post End Stage Fears
Hi Guys! It's been a long time since I signed in, but I do visit and read. Thank you to everyone for their input. I am just too worn down and defeated to add much.
Mom has been in a nursing home since November, following a disastrous inpatient senior assessment. The doctor there (aka: The Pompous A--), put her on Haldol after I told him that I had long suspected LBD. She froze up like someone in the movie "Awakenings", and they promptly started weaning her off the Haldol and myriad other drugs they started her on upon admission. Prior to admission, she was only on a blood pressure med and a reflux med. The one and ONLY time I saw him acknowledge that I may have been right was after she was in the nursing home and he authorized hospice care with the diagnoses of LBD.
Anyway... we're trying to find our way to acceptance with this whole thing. Hospice has been terrific.
The last 3 days have been weird and now I am terrified of losing her. Sunday she managed to break the tray on her Broda (?) chair (sort of a fancy gerichair with a tray that confines her) and launch forward and fall. No major injuries, but she was "wired" for the rest of the day - impulsive, wanting to go catch the tram, go "home" (meaning Ireland, came to US in 50s), I was her sister, etc, etc.
Yesterday she slept. This morning she was asleep in her broda chair in the dining room, staff looked away and she suddenly woke up, tried to dive over the side, and landed on the floor still in her chair. (they have it on video tape, and that's exactly how it happened).
I was there within the hour, and she wasn't able to maintain eye contact, and she was drooling more than usual. By the time the hospice staff arrived, she was out cold again. We couldn't rouse her at all. Put her in bed and stayed with her. She was rather stiff too- while in the chair, her head was hanging down and instead of just lifting, I actually had to push to lift her up for a sip of water (and she had no response to that at all) .
The hospice nurse assured me that Mom wasn't "heading home", and I could safely go home.
Can anyone add any wisdom to this? I am in agony at the thought of losing Mom. What am I seeing? Why am I so unnerved this time?
THANK YOU in advance.


Tue May 12, 2009 9:10 pm
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Location: SF Bay Area (Northern CA)
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Mary B,

I'm not sure it's possible to prepare for a loved one's passing so...cut yourself some slack. It's OK if you are rattled by such mysterious events. Probably there are more to come.

No clue as to what's going on unless she has an infection or if they've changed the meds. Ask for a current med list from the facility. Maybe she has been given something "PRN."

Is she being given an AChEI at all? (Exelon, Aricept, Razadyne)

Robin


Tue May 12, 2009 10:03 pm
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Location: CA
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Mary B. -- This has got to be brutal on you; your mom is probably not very aware of what is happening and is probably suffering less than you. Take advantage of any counseling and support services hospice might be able to offer to you to help you deal with all of this. Take good care.

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Renata (and Jerome-in-Heaven)


Tue May 12, 2009 10:49 pm
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Mary B,
Sadly there really is no way to prepare to lose someone you care for, I believe it is a matter of excepting as time goes by, doesn't make it hurt any less, As to the Doctor who ordered Haldol, he should be shot, there is so much of this going on in facilities every where, they just don't listen.
I am sorry you are dealing with this in your life, Good Luck!

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Irene Selak


Wed May 13, 2009 7:17 am
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Dear Mary B,

I am so sorry to hear of the recent events with your Mom. This disease is like a scary rollercoaster ride. My loved one went through these episodes for quite a while. Sometimes it was the medication, sometimes it was an infection, sometimes it was because of change in her schedule, and sometimes there didn't seem to be any reason at all. I agree with the other wise people who posted here. You sound like you are just plain worn out and that is probably why you are reacting the way you are. Try to stay strong and take advantage of Hospice counseling like raffcons suggested.

Joyce K


Wed May 13, 2009 8:40 am
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Joined: Fri Feb 06, 2009 7:22 pm
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Post Thank you.
Thank you, everyone. The hospice nurse and I have discussed the possibility of a UTI causing this episode, and she ordered labs this morning. Mom is still in the sleep mode, and I am trying to settle myself down.

It was May 1 of last year when my kids and I noticed a huge slide, and that's the date generally accepted as her entry into end-stage. I guess I have read too many checklists and now I'm on high alert. Thanks for your kind words of support.

"Is she being given an AChEI at all? (Exelon, Aricept, Razadyne)" This is very interesting, and I will discuss it with everyone I can. :) Mom had been on Aricept while at home, but the geriatrician felt it was no longer effective, so she has been off it for over a year.

And I DO like the idea of shooting "The Pompous One". :) We had our first Patient Care Assessment meeting last week, at the 6 month mark, and I thought he would be there, but no. I get the impression he doesn't have the guts to look me in the eye. I specifically said no to Haldol. My father had been on it in the late 90's, and it was bad.
I had samples of Mom's handwriting, showing the appearance of a little tremor, along with a diary of behaviors, all pointing to LBD. I also had lots of printouts about neuroleptics making LBD worse, but he had to throw the pharmacy at her.
After the placement, which was inevitable because she was so damaged at the assessment, I found more documentation that giving neuroleptics to a suspected LBD is equivalent to a chemical lobotomy. That's exactly how I would describe Mom.

Again, THANK YOU to all of your kind input - you have given me hope and comfort, and some additional avenues to try.

Have a great day and I'll talk to you as soon as there's an update.

Keep supporting the LBDA!

ps: I have taken the counseling of the hospice team to heart. They have been truly wonderful. They tell me I have "chronic grief", and have guided me to some degree of peace. I recommend them to everyone who is facing this.


Wed May 13, 2009 10:59 am
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My husband passed in Aug. of 08. If I hadn't had hospice the last year I hate to think what would have happened. They are trained professionals with a human touch. I say they exemplify the saying "Christian love in action".
The care they gave Ronald and me, kept me going mentally and physically. There is no way to prepare you completely for the "end". But, they do help you understand what is happening and about when to expect it. Don't think you are different when it comes to this; my one son would not accept the facts until the "end". He, of course, thought his dad was going to be here always. It is hard to face and hard to live the loss after wards. But, you will get through it. I asked someone who had lost her husband "Do you ever stop crying?". She replyed "It just get a little less often". She was correct. I still cry, but, it is a little less often.
God bless you and I will keep you in my prayers.
Blessings to all with LO's with LBD.
maryangela


Mon May 25, 2009 4:55 pm
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Hello I am new to this whole thing. My mom is 75 and she has LBDw/P. She wasn't diagnosed until June of last year. She has been ill for the last 4 years. She was in a nursing home and I have just taken her home with us. My Husband and myself.
So far so good. I am use to her hallucinations, it is the sleeping so much and the refusing to take her medicines, and one of her Heart meds causes her to unrinate so much. She does wear the pull ups all the time, and we are all the time in the bathroom. I spend more time in the bath room than anywhere else. I can see the transgression with her brain because her legs are not responding when she wants to walk, and sometimes she just forgets she has to move her legs. Her shakes are really bad but Praise God she can still feed herself with some clever tricks I learned from the nurses where she was. Her drinks I use a small cup with a straw attatched to it and I cover the top with clear plastic wrap so she won't spill it. Her tray I use a plate with high sides to it, and almost always give her a spoon, easier for her to bring her food to her mouth with out dropping it.
I Love my mom very much and want to make sure the last few years she has with us she enjoys all she can while she still can.
I keep looking on-line for the diffrent stage types of LBD and I can't find any. I have no idea what the sever stage contains. I know she is in the moderate to sever stage now. But what can I expect. What do I need to prepare for. If any one out there can clue me in I would greatly appreciate it.
We feel very blessed to be able to have my mom home.I know the Lord has and will keep on giving me the stregth to take care of her. Because I could never do this with out Him!
I just find myself giving 100% to her and nothing left over for my husband. I feel so guilty about that but at the same time I know she needs me 24/7. Is anyone else going thru this too?
Thanks for listening,
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Wed Jan 06, 2010 12:44 pm
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All -
Tammy has now posted her message in the Introductions section.
Robin


Wed Jan 06, 2010 12:53 pm
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Joined: Mon Jan 04, 2010 7:48 pm
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Location: northern CA
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Hi all,
I too am new at the forum. Mom used to be plagued with UTI's until I made some changes. They did mimic some LBD symptoms. Mainly more sleep and less coherence. I don't want to sound like an MD basher, but what we are up against is kind of ground breaking and not all is known about LBD. The best way we can help our LO's is to be fearless advocates and not be afraid to step on toes. Search out and find someone that is familiar with LBD as has been shown going down the wrong path is dangerous. A lot of docs still have the "I am the doctor" attitude, but being well informed helps a lot. This forum has a wealth of experience and knowledge for which I am grateful in the short time I have been here.


Thu Jan 07, 2010 12:05 am
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Hello all,
Miom has taken a turn for the worse. She is totaly lathargic. She can't even drink or talk. SHe does have a fever of 100. I am hoping it is just a infection and when it is cured than she will be back. that or maybe her meds. I know it is a part of her decline also. if it is her meds I am in a part when which is batter for her, To be angry,scared and upset all of her waking time or relaxed and resting. I am wainting in the nurse to get here and to see what she wantsto do. I am hoping they will take her in and evaluate her.
Keep her in your Prayer as I will keep all of you and your LO in my Prayers.
Thank you,
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Mon May 17, 2010 10:00 am
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Joined: Sat Jan 27, 2007 8:38 pm
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Dear Tammy --

I have not logged on to the forum for some months, but for some reason, I checked in this morning and read your post. I encourage two things for you:

1. It is very common that in this late stage of LBD, your mom will be asleep most of the time. That is natural and expected and is, in many ways, a blessing, as it spares her the ugliness of what she often experiences during her waking hours. It's also God's way of giving you a break.

2. The fever is a sign of infection. As you know, it could be any number of infections, including pneumonia.

You mentioned the nurse coming over -- does that mean your mom is on hospice? If so, that is great. If not, it is time to give your family and your mom the gift of bringing in hospice.

I, too, had my LO at home until just days before the end. I had it in my head that it would be best (and right) for my husband to pass away at home. I fought suggestions that we have him moved to the hospice facility, until it became obvious that they had the means to make him more comfortable there than at home.

So, he spent his last five days at the hospice center and they were magical days. He was relaxed, comfortable, out of pain, lovingly cared for around the clock. I was there 24/7 for the full five days. They took care of the back-breaking work of care, and I could simply be with him and love him, and prepare myself (as well as I could) for the end.

It's an emotionally devastating position to be in -- loving and wanting MORE TIME with your mom (really wanting to have her back as she was, but any way will do), and recognizing that her body and mind are in torment and releasing her to God is the greatest gift you might give.

My prayers will be with you and your family!

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Renata (and Jerome-in-Heaven)


Mon May 17, 2010 11:02 am
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It sounds to me like it could be neuroleptic malignant syndrome!! This can happen in LBD with certain types of drugs. I hope this is not the case but it's something my husband got with Risperdal and it can be life-threatening.


Mon May 17, 2010 11:39 am
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Location: SF Bay Area (Northern CA)
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Yes, fever could be either infection or NMS. NMS is caused by antipsychotics. Seems like you said recently, Tammy, that the hospice MD was trying different antipsychotics. You may find useful info on NMS here:
http://community.lbda.org/forum/viewtopic.php?t=1052

Since your mother is on hospice, you'll have to make a decision if you want to treat the NMS or the infection, and whether you'll treat it at the hospital or at home.


Mon May 17, 2010 11:51 am
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Location: Fl.
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Thank you all for your loving thoughts. The nurse was here from hospice and when she check for a fever it came up 98.2. Maybe it was my thermomiter was off. But she said it looked like a radical decline. She is checking to see if the doctor can come out to see her. I have to decide if I want her on a decathiter. (sorryspelling is bad right now). Is it easier on her for that? I mean I don't mind changing her. But I just want what is easier for her. She is just totaly unresponsive. If this is her going home, than let it be. May God have His will be done.
TheDoctor just called me and will be out to see her in about a hour. I will ask the Doctor about that syndrome, thank you. Keep her in your Prayers.
I appreciate ALL of you so very much!!!!

Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Mon May 17, 2010 12:20 pm
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