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 What is normal? Can the end be getting closer? 
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Joined: Wed Sep 30, 2009 8:25 am
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Post What is normal? Can the end be getting closer?
My MIL sleeps all the time now. When she sits up to take her meds her head is slumped forward. She contines to lose 1-2 pounds a week.
Most of the time she only talks when spoken to and then it is a one to two word response. She is still able to get to the bathroom with assistance, but her accidents are more frequent. She often gets panic attacks and is extremely confused about where she is and what is wrong with her. Her hands feel cold to the touch. Every now and then she will chatter about some distant memory from her childhood and we get a glimpse of her former self. At least she is not in any pain. Is she getting close to the end or will this drag on even longer? Anyone have any insight or is this as unpredictable as the rest of the disease?


Sun Jan 03, 2010 2:15 pm
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The two things that would indicate she's getting closer to the end is that she's sleeping all the time and regularly losing weight. Do you have the help of hospice? If not, it's time to bring them in.

Be sure you know your MIL's wishes in terms of hospitalization, intubation, feeding tube, treatment of pneumonia (through antibiotics, hospitalization, etc), and brain donation. If you intend to have her brain donated for medical research and to confirm the diagnosis, be sure those arrangements have been made.


Sun Jan 03, 2010 2:53 pm
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We brought hospice in a month ago. Steady decline since then. Lost another pound in less than a week. Complains of no energy today. Took a shower but it drained her. Ate one quarter of a turkey sandwich and a couple of orange slices. Did not drink beverage. Watching the Catholic channel all day. I suspect she knows something. So sad, just glad we can be there for her (daughters did not even call her and wish her a Happy New Year).


Sun Jan 03, 2010 4:28 pm
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I forgot--she did advanced directives before she got really bad. No feeding tube or extraordinary measures. Wouldn't discuss brain donation.


Sun Jan 03, 2010 4:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Well, then hospice is best-placed to indicate if your MIL is nearing the end.

Brain donation does not require the consent of the donor. As long as the healthcare POA consents, this is all that is necessary. In many of the cases I work on, the donor has nary a clue.


Sun Jan 03, 2010 5:38 pm
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In my experience as a home health RN, I transferred many patients to Hospice. There was often a lot of reluctance on the part of the family, and sometimes the physician, but never the patient. The average time from the transfer to Hospice to the patient's death was weeks, not months. I never had a patient who went to Hospice who lasted longer than three months.

So the advice is good: Do it now. Don't wait.


Mon Jan 04, 2010 2:18 pm
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mockturtle -
dagoetz's MIL is already on hospice.
Robin


Mon Jan 04, 2010 4:53 pm
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Sorry, Robin. I was just giving general advice, not specific. :wink:


Mon Jan 04, 2010 5:03 pm
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My Mom has a living will, and a DNR. Detailed intructions on No feeding tube or anything that would prolong life. SHe has already left orders to donate her brain.
She does not eat good now. Breakfast is her best meal. I try to give her finger snack all the time. It takes her all day just to eat what she will eat of that.
The Dr. has a Rn and a PT and a OT coming regulary. I have called Hospice, They are going to come by and just give me some info into how they can help. I know as long as the PT and OT are coming Hospice can't come in. Is that right? Because I thought hospice will sit with her and not just comein and work with her and leave. The PT and OT never stay longer than 30 min.
Can some one please give me just some insight to what condition are like when it gets really worse? I know every case is diffrent, but just some ,any kind of insight . It is bad now, Her mind set is never her anymore. Sleeps 60% of the day. Eating not much. WEight loss. But she is still able to get around somewhat, with my help. Can feed herself still, (that is what she does eat)shaky as all get out but she makes it to her mouth.
Sorry for the long wrinting , just exausted. Still tring to find help. She won't put up with people.
:?

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Fri Jan 22, 2010 10:54 am
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Location: Henderson, Nv.
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Tammy,

I am sure that the end is individual like the symptoms are to each one.

Towards the end my LO was bed ridden, cath, diapers, ate teeny bits, lost a lot of weight, drank little, slept a lot. Then the sleep increased to the point he slept most of the time. Other than 2 times he was mostly compliant. I don't think they have much strength left and utilize that to just stay with us. The last few days he just slept and then one day he just gave 2 deep sighs and stopped breathing. It was peaceful. He was also on morphine the last 10 days for pain. I should mention that about 2 weeks prior to his death a scan also showed cancer of the bladder and liver. Which of these diseases really took him? Its no longer important. His battle with LBD, Parkinsons and then the cancer has ended. He is not suffering any longer, now has wings and is Home. Bless all of you.

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Dianne C.


Fri Jan 22, 2010 12:41 pm
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Ty, Dianne,
I am glad he is truly at home now! Rejoicing everyday!
I forgot how long it has been with mom, I had to get with my sister to figure out how long she has been fighting this. She came down with it so extremely fast. Hallucinations started at the very beginning. It has been about 6 years now she has had this LBD, w demt/park. Only finally diagnosed right 3 months with LBD.
Now I understand why she is advanced so much.
Thanks,
Tammy

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Fri Jan 22, 2010 1:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Tammy,

Right; you can't have home health (PT, OT, RN) coming and hospice coming. They are mutually exclusive. Great that you are sitting down with hospice now. I encourage you to sit down with more than one hospice organization.

re: signs of the end. When someone is sleeping 20+ hours/day. When someone loses interest in food and water. When someone is not engaged with their environment or people.

Robin


Fri Jan 22, 2010 1:45 pm
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TY Robin,
My mom is closer than I thought. SHe does not care to eat much at all. Just now I had to talk her into lying down because she was up and she started saying she wanted to go home. I am use to her hallucinations and delusions, so I was walking her to her room, and it was time for her meds, well she has refused meds and not wanting to eat. I am hoping I can go in her room in about 30 mins and she will be up to taking her meds. I have been holding off giving her seroquel in the day time, but it looks like I might have to. SHe is Very Delusional and her Hallucinations are bad right now. She won't take her meds, I got her back in bed. How do ya'll deal with this when this happens?
Thanks for giving me some insight.
Tammy

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Fri Jan 22, 2010 3:12 pm
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Go for the Seroquel!


Fri Jan 22, 2010 3:29 pm
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I gave her the seroquel at 2:15. Still waiting for it to kick in. She is very defiant, calling for the Police and thinking someone is going to hurt her.Tring to walk all through the house. I haven't been able to give her ,her parkinson's meds because she refuses anything I give her to eat and drink. So her tremors are bad also, refuses to use the walker. For you Brave ones out there that have done this for years, my respect and amazement is totally yours!
I know this too shall pass, I am just having a good long talk with the Lord! Getting through it is growing me I know but man the growing pains during it is amazing!
Love and admiration to you all!
TY,
Tammy

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


Fri Jan 22, 2010 4:30 pm
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