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 Help Please - Repeated Long Periods of Non-Responsiveness 
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post Help Please - Repeated Long Periods of Non-Responsiveness
All,

It has been a while since I last posted. My DH is going down very fast. He has LBD (Lewy Body Dementia). They say all of the dementias end up following the same pattern, so I am hoping my question will cast a wider net and some helpful guidance. As you all know, no one understands ANY of the dementias even half as well as the caregivers. So ... I am coming to you, my friends with LOs on this journey.

Here's what is happening: 1 week ago, my DH was completely non-responsive for over 3 hours. He snapped out of it, but seemed to have declined overall afterward. This last Friday morning at around 4 AM, my DH became completely non-responsive for over 14 hours. (I did manage to get his morning medicine down him by raising the head of the hospital bed, putting a cold wet cloth on his head and face, straddling him and giving him his meds 1 or 2 at a time and then urging, prodding, and, admittedly, nearly causing him to choke - a method I will not be using again in the future. When the nurse aide came to bathe him, she showed me how to put on diapers, move him in bed, etc. During that time he was confused and mostly non-responsive except for rolling eyes and trying to do things that did not make sense.

We are on hospice and they were going to start 24 hour care. Of course, less than 30 minutes before the nurse arrived (actually, about 5 minutes), my DH suddenly snapped out of it. He wanted to sit on the Lazyboy Rocker/Recliner in the living room. He stayed awake (mostly, but was even more cognitively declined) for about 3 1/2 to 4 hours. Then, again, he became completely non-responsive. My son, who is strong, was able to pick up my husband (230 lbs) with my help and my daughter's help and we got my DH back to bed. He did not wake up or even open his eyes during this entire ordeal. He remained non-response from around 10 pm until 5 am, when he woke up when I gave him his liquid pain medicine.

He was awake and very very confused at 7 AM and was trying to climb out of bed. I calmed him down and got him back to sleep. Again, around 11 am today he became non-responsive for over 2 hours. He woke up when my son (in my absence - I went to a store) basically tried to pry my DH's mouth open to give him atropine to reduce congestion because he was gurgling again. He now knows not to do that, but my DH has been awake, but more confused than usual (a LOT more confusing and unrelated statements).

Has anyone had any similar experiences. It feels like we are getting to the end. I have seen my DH on way too much medicine in the past ... when the medicine they had given him knocked him out in his chair to the point where he was drooling. Even then, I could get him to respond, to wake up, and walk with assistance to his bed. I firmly believe that my DH's current state is NOT related to the medicines (he has been on most of them for well over 18 months ... many in much higher doses).

Please help me understand what is happening.

Lost in the dark and hoping for some light or some understanding.

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May God hold you in the palm of His hand and shelter you in the light of His love.


Sun Jan 24, 2010 12:42 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
These sorts of non-responsive phases occur to many with LBD. I suggest you do a search of past posts containing keywords such as "non-responsive," "coma," "comatose," or "out of it." This seems to be part of the cognitive fluctuations that can occur in LBD. They may be blood-pressure-related.

I think the only thing you can do is to make sure the loved one is in a safe place, and keep an eye on them. You could raise the legs up and put the head down to see if changing the blood pressure changes the situation.


Sun Jan 24, 2010 2:15 am
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post The Level of Non-Responsiveness is Deeper Than Ever
I am aware of the fluctuations of non-responsiveness with LBD; however, what my DH is currently experiencing is like nothing I have ever seen before. Even the Hospice Nurse Aid noted that he was semi-conscious (very very non-responsive) and he is having difficulties with his lungs (not that his lungs have a problem - it is the brain's interactions with his lungs - we saw a pulmonologist on this issue). My DH's LBD is focused primarily on his autonomic systems. He has SEVERE Central Sleep Apnea, he is having apneas during the daytime, he is short of breath, his knees are giving out from under him such that he cannot walk without assistance and even then only for a few steps. Otherwise, he is being moved via wheel chair. He is also having difficulty with urination (cannot start and goes rarely). His breathing is a real problem. He is gurgling, has what appears to be pneumonia (wheezing in his lower left lobe accompanied by aching, for example). We have him on nebulizer 4 times a day and he needs it at night on most nights. To me, a first timer with LBD, that he is nearing the end.

He has been on a sharp decline since March 2009, with fluctuating blood pressure and pulse (but his heart checks out OK - nuclear stress test from 2 years ago is nearly identical to current nuclear stress test).

My DH is loosing control over motor functions even more obviously than in the past (he involuntarily threw the remote across the room). Of course, the knees giving way are also a loss of motor functions as is the frequent dropping of his drinks. We found insulated cups that are spill proof at Costco that work great. At least he's not spilling drinks on himself and his surroundings any more. Eating is quite messy, though he can still use a fork/spoon. Note, however, that this can be true for LBD patients all the way up to the end. Also, he still recognizes close family members and is largely aware of what is happening - also not unusual for LBD even up to the end.

Of course, when he is in the non-responsive mode, he doesn't recognize anyone. His eyes roll back when you can get his eyes open. His jaw locks up. His breathing is gurgling in his bronchials and throat on both inhale and exhale.

Time will tell the tale. Thank you for your response. I look forward to others.

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May God hold you in the palm of His hand and shelter you in the light of His love.


Sun Jan 24, 2010 2:40 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Questions, questions
I am thinking the Hospice representatives would talk with you freely about where they think [time wise] your loved one is at this time. Do they consider trying to make him stronger and more stable or are they telling you it is time to just wait? I don't understand. Sometime they talk about the end being near and we do not want to hear it. Did you ask them straight out?

I keep thinking of you and hoping for the best.

Dorthea


Sun Jan 24, 2010 5:33 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Could your husband have pneumonia or maybe another infection? I've had 2 episodes when I couldn't wake Frank and had to call 911 because he had a slight fever and I couldn't get any tylenol into him. It took hours before they could get Frank to respond. They were very iffy as to what caused the problem, but said it could have been an upper respirtory infection. Maybe hospice could give you some insight.

You and your family will be in my thoughts, we all understand that sometimes there are not answers to this roller coaster ride.

Take Care,


Sun Jan 24, 2010 7:10 am
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post Thank You All
Thank you all for your responses. I am familiar with my DH's meds and he has been on the ones with the most side effects for a very long time (over 18 months). He's back into a non-responsive state this morning. We did manage to get him to take most of his medication, but I am not going to do that again. I don't believe he would want it and my daughter, who helped me with giving him a drink and "cheerleading" swollowing and opening mouth and double checking to make sure he swallowed his medicine, also agrees that this is really forcing him ... coated in a lot of love and cheerleading ... but forcing nonetheless. This is the last time I am going to do that. If he's too out of it to take his medications, I am not

.6\o/going to try to get him to take it. I will focus on the liquid morphine for pain and continue the nebulizer, but this appears to be the end stages.

I did ask the weekend hospice nurse, and she said she just thinks he's in a deep sleep state (we disagree). Of course, she didn't see him in his non-responsive state. The Hospice Nurse Aid and Social Worker did see him in that state and they both thought he was nearing the end.

I have no been shy about asking about timing and where we are (though LBD is one of the most difficult of the dementias to predict because of the wild fluctuations in just about everything. My willingness to ask "the question" (how much longer do we have?" "I know there's no definite answer, but based on your experience, can you give me an educated guess?"). I have gotten answers from the doctors with these kinds of questions. Those answers are why we have been on hospice since 10/31
2009. They have been very helpful.

The weekend nurse just really doesn't know. Unfortunately, our regular RN is on vacation this week. She knows Mike and knows what is happening.

Of course, as it keeps happening, Mike just woke up (again). I now know it is a matter of time.

Thank you all for your prayers and support.

_________________
May God hold you in the palm of His hand and shelter you in the light of His love.


Sun Jan 24, 2010 12:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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When your husband does pass, I hope it's peaceful. I'm glad you have the support of a daughter and hospice.


Sun Jan 24, 2010 1:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
It does sound like the end is near. When I was nursing my father at home through his death from cancer, he was in a coma for the last week. I was amazed that his body could survive that long without fluids. But he just stopped breathing one night and that was it. And even though we were expecting it--even wishing for the end--it was hard.

I pray things will go peacefully for all of you. --God bless you! Pat


Sun Jan 24, 2010 1:49 pm
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Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post Thank you
I genuinely appreciate your prayers and support. May God hold you in the palm of His hand and bring you comfort beyond anything you can imagine.

_________________
May God hold you in the palm of His hand and shelter you in the light of His love.


Sun Jan 24, 2010 5:05 pm
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Joined: Thu Jan 28, 2010 10:01 pm
Posts: 2
Location: MA
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My mother has these episodes, they dont' last as long as you descreibed though. Her Neurologoist calls them waking dreams, and say its all part of this disease. Incredible, huh? Keep the faith!

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Laraine


Wed Feb 03, 2010 3:35 pm
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Joined: Sun Jan 11, 2009 8:17 pm
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Location: Arkansas
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My mom has the same kinds of unresponsiveness and they can last 18 hrs or more. I have to change her in bed and can only get her to swallow a little shake or juice my using a medicine dropper to get her to start the reflex going than use a straw. She will come out of it without notice. This has been going on for 6 months or so. Her knees buckle all the time and now she jerk some times even sitting in the chair. She'll collapes into a chair just with a transfere and her eyes roll back and slumps further. All this looks very scarely but she continues to surprise us and come back to "normal". She did have a week where she was breathing shallow and nurse advided using ozogen. She uses it sometimes a night and durning naps when she wants to. It seems to help. Its seem like the lungs get ridget too. I do feel we are in last stage but mom isn't ready to give up yet. I wonder if hospice really can give a much of an evaluation when it come to end of life with lbd and these buzzard fluctuations. I have work with hospice with my sister's and my husband's cancer death, and a family I work for, and they are great. LBD is so different. How do you know they are in pain, thus morphine? And other issues perticular to lbd?


Wed Feb 03, 2010 10:41 pm
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Post My mother passed from LDB a year ago
How is he doing today? Hospice can give you information of end of life and what to watch for. I just joined today and so have not read your previous posts. I hope you are getting some info.
Sharon10


Mon Feb 08, 2010 3:17 pm

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Dear Cryst
my Mother does very similar- I had her at the hospice house last week- couldn't keep her awake- comalike, she was not eating very weak etc.
She was always very physically in shape still very healthy heart etc. The hospice doctor says he doesn't know because because she is still healthy.
I brought her back home Monday- she eats very little, couldn't wake her up yesterday- she woke up about 7pm- lots of energy (made a huge mess)
she is pretty out of it this morning.
I give her meds when she is awake I don't wake her up for them. -crushing pills in ice cream is the only she swallows them.
Sharon

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syt


Wed Feb 10, 2010 12:03 pm
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Dear Cyst,

It looks like it has been awhile since you posted. It sounds like your DH was in a similar state as my mother was... she passed about two months later.

I understand the need to stage and determine how long you have left. We had hospice care but they only came two times a week to help with bathing. My mother quickly became totally bed bound once hospice brought in the hosptital bed etc.(Jan. 7 2009) She fluctuated in and out. Her delusions became sooo bad and she would remain in a semi contious state for days. We had to medicate her so she would sleep. It went down hill faster than I could keep up with. I am wondering if you are currently at this point.
God is with you.... You can do it. I felt very blessed in the end... Our year anniversary of my mother's passing was two days ago.(Feb.8 2009) My prayers are with you and yours.
Sharon10


Wed Feb 10, 2010 3:52 pm
Post In response to Sharon
If you are taking your patient out he/she is doing ok. It gets to the point where you cannot get them in the car... You may have a while to go. Take advantage of your time. Miraculous things happened between me and my mother! We were very blessed.
Sharon10


Wed Feb 10, 2010 3:57 pm
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