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She is starting to turn away all the foods and drinks she has liked before. She is spitting into a napkin a lot. She chokes, she can't walk anymore. She is up and down in her sleep pattern. 2 nights ago she was up every hour...the last two days she has been sleeping all the time. Last night she slept almost 14 hours.

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Thank you, TamCummings99, very much.
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The body prepares to shut itself down in a very organized fashion. Sleep agitation, changes in hydration and nutrition are normal, including not wanting any food then asking for a favorite meal the day of death. Try reading "The Final Year The Final Moment" or "How We Die" or "Gone From My Sight." Knowing what's going to happen won't make your loss any easier, but understanding what the body is doing can be very helpful. She may begin sleeping more and more, you may find her talking to persons long gone, reaching out as though she is trying to touch someone, or having increased agitation. She may become semi-comatose or be alert. She may have bursts or energy or become bed bound. Hospice will evaluate her for pain or any medication adjustments and are available to you 24 hours a day. I'm sorry to hear about your loved one.
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Mom is 91...she's my little energizer bunny. But the dementia has gotten so much worst just in the 5 months she has been with me. Her mood is up and down. She stopped walking..we push her on the walker...because she won't use the wheelchair. But she eats..I have to put the food in her hand...sometimes up to her mouth. But on good days..she does it all by herself. She has LBD Dementia.
For the first 4 months here she was up every hour of the night....now she sleeps almost 16 hours in a day. But it's so nice to have sleep again.
I'm happy to hear that they have had your MIL on hospice that long...It gives me hope. Thank you...
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My mother in law has been with hospice for about a year now.
They do an evauation every 6-8 weeks to requalify her.
They have told us there should be no problem keeping her on hospice given her age and alzheimers condition.
Unlike home health care that can only keep them on their program as long as they are under dr. care and having changes in health and medication,both of which my mother in law no longer qualified for with them.
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I'm sorry ...I wished all the people here would have the greatest experiences with their hospice. I have such a great group working with me ...and I am so grateful for them . They have set us up with everything we need for her. And are all about the comfort level of pain and suffering. We also have mom on powdered Miralax I give to her in liquids. Its so hard to see them suffer so much. I hate what is happening to our loved ones. God Bless you for being there for her.
So may I ask? how long has she been with Hospice? Mom has been with them since October...and I am so afraid that they will release her from it and leave me high and dry. Since she has improved a little. I rely on them so much...I don't know how i would cope with out them.
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yes,we do have hospice thankfully.
A nurse comes in once a week and another comes in to bathe her 2x's a week.
She has to be bathed in bed as we can no longer get her up.
She doesnt remember how to stand up or walk.
The hospice we have seems to be more interested in just waiting things out.
When we tell them the problems she is having they don't suggest anything to do or anything to give her to help out.
Most of what we do we have just figured out on our own.
We even had to almost beg at one point to get antibiotics for her when she was bordeer line pnuemonia and had bronchitus.
It's almost like they are just waiting for her time to end.
Our concern, as we tell them, is her comfort level until then.
We asked them about her bowel movement issue as she will often go a whole
week or two without a movement and they did finally give us senna tablets to give her.
We give 3 in the am and 3 in the evening crushed up in her food,but that still isn't enough.
We are thankful for the hospice care we have, but just wish they were more up on things with helping us with her different health issues.
Thank you for the suggestions for saliva.
We have started giving her coconut water and she likes that but we can only get a shot glass or 2 in her at a time.
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I agree...with Jeannegibbs, Pamsplace00....you should have hospice called. I think you can get the doctor to call them. I didn't have to call because the home healthcare nurse called for me. But it might have to be referred by the doctors. I think you would benefit greatly by having them. Mom has a nurse visit 2 times a week and bath aides twice a week. Plus they are at call at anytime day or night. They will medicate her for comfort and care. We have drops for the saliva issue. But mom has improved since I first posted this...she is doing better these days. I wouldn't ever want to lose my hospice...they are my angels.
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pamsplace00, Do you have hospice for your mother? I think you would find that a great comfort.

I wonder if the "mucus" is built-up saliva because she is unable to swallow often enough? That was the case for my husband and hospice ordered a patch for behind his ear that helped minimize that problem. The nurse warned that it might give him a dry mouth and then we'd have to decide which symptom was worse, but my husband never complained of a dry mouth. What was wonderful about hospice was their immediate response to each new symptom of discomfort. Their goal truly is to reduce suffering.

Bless you and your husband for taking care of this dear old woman. If you can have hospice assist you I think that will benefit all of you.
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My husband is 69 and he is the full time care taker for his mother.
She has been with us 2+ years.
She will be 88 dec.31st.
I try to help and relieve him when I get home from work in the evenings and on weekends to give him a break.
Since she has been with us she has regressed to being imobile (bed ridden)
incontinent and mostly unable to eat solid foods.
We liquify all her foods by pureeing them in a blender and have to thin them out with water so she won't throw it up.
She has alot of mucus buildup and she will have days and sometimes weeks that she will continually throw up her food as she will gag on the mucus and the food won't go down.
We also give her a digestive aid and OTC medicine for the mucus buildup and allery medicine to try to cut back some of the mucus problem.
We also either grind up a multi vitamin and mix it in her food on her good days when she can keep some food down and on the days she can't, we give her childrens chewable vitamins and meds and she loves to suck or chew on them.
We feel all of this has to be at least some help..
She has lost alot of weight,prob. only weighs about 80lbs. now.
She doesn't know who we are but we can tell sometimes she will see us as a familiar face.
She is a blessing to have and be able to help.
If we were not taking care of her at home, she probably would not still be alive.
May we all be blesses to have care for us when needed.
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connief, it's such a tremendous double loss as not only have you lost a loved one, but some people also lose their identity. The feeling of loss is so compounded when you have to establish a new you and a new life.
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We think we are ready for our loved one to leave us, but when it does happen, be prepared for a huge feeling of loss. I cared for mother for 5 years, thought she was ready, thought I was ready. When she finally let go, I struggled with the loss and the feeling of "what do I do now?" My prayers to you and all the loving caregivers out there. There are no easy answers to final days, just love on them till the day there are no more.
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With Lewy they do tap their hands, and you are right because somehow it is related to Parkinsons. My mom is getting the shifting gait when she walks now. I'm glad you stopped the Halperidol drops. All of my investigating on this horrible disease shows Haoperidol and Haldol are ok for ALZ but not good for LBD. It has bad effects for people w/ Lewy Body. The articles I've read also show that over the counter pain relievers are better too. I often wondered why mom responded so well to tylonel. My mom was like your mom on Monday. She was talking alot but didn't make sense. Finally after we walked a little she perked up and started making more sense. I hope your day will be a good one. I'm with you, I hope our Mary's have peace soon too.
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The drugs they gave her were trazadone and ambiem... The trazadone is suppose to make your body relax but doesn't shut the brain off, and the ambiem shuts the brain off but doesn't relax your body. Thats probably why her hands were still moving. With Lewy they tap their hands? My mom does that in her sleep too. It's like someone with Parkinsons. She also has lorazepam when she gets agitated, but I hate what it does to her. Plus Haloperidol drops which is an anti psychotic. But I don't give any of those to her any more. The last few times I have given her only 1/2 morphine pill for her arthritis and one advil pm.
Mom also talks sometimes and she makes no sense at all. Then other times she is talking and making complete sentences. I hope and pray both our Marys have peace soon. Glad you are getting some rest too.
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Msdaizy: What were the drugs they were giving your mom? Right now the dr's have my mom on her needed drugs for high blood pressure, thyroid problem, a water pill and pottassium.. Also, they give her a stool softner/laxative because the meds she takes really bind her up. What they added though is: Effexor 37.5 mh (an anti depressant) and a sleeping pill (ambien 5mg). She was never on sleeping pills but with all the agitation and waking up it's the only thing that helps right now. Does your mom constantly "twitch" around while she is asleep? My mom moves her hands, and her lips like she is talking. One night I stopped at the NH after she was asleep (they had given her the sleeping pill) and she was still moving her hands, ect.) I was surprised because I thought the sleeping pill would totally relax her. My mom knows something isn't right. Today she was telling me she got "lost" at the nursing home and couldn't remember where her room was. She said her brain "froze". I can usually tell now when the Lewy Body is "active" as I call it. She has a glassy eyed look. Then when "Lewy" leaves, she looks and talks clear again. It is so hard to watch. I'm with you. Today I prayed with mom and asked that God please give us both peace and calmness. As bad as it is with mom, I am so proud of her. She still talks to the aids and nurses about the hope that she has and the loving God she serves. I know she will be in His memory.
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Thank you all for your words of wisdom. I watched mom from my bed last night, I have a monitor. I could see the frustration in her. She knows something is not quite right.
She is sleeping better these days. She shows more feeling now than before when she was drugged. I am no longer giving her those meds that messed up her character. She is back to the sweet lady I know.
She's losing interest in food all together. The last few meals have been picked at.
I see the anguish in her eyes. I am ready for her to be at peace. I pray for that time to be during sleep. I don't want my mom to suffer anymore. God Bless all of you compassionate caregivers!
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Msdaizy: My Mom wasn't formally diagnosed with Lewy Body Dementia but I had my suspicions based on what I learned here. Sometimes she would seem out of it and sometimes she would be just like her old self.

I know. It's so difficult to watch our parents decline and thank God for this wonderful support group we have. Take care, dear friend, I believe we're doing one of the most important things for our parents we could ever do.
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msdaizy I know a woman who turned away food 3 years ago Thanksgiving!!!! Her wonderful daughter takes the best care of her that I have ever seen. She has been on Hospice this entire time. Her daughter has been feeding her a combo of ensure mixed with ice cream, oatmeal, blueberry's, and other various fruits. It is truly remarkable how she is still hanging on. The grandson reads to her in her bed at night. I think this is the reason for her strong will to continue. So the answer I have to your question is... Life is a mystery and a miracle at birth and the body and mind are not the only reasons for living, there must be something stronger keeping this Mother alive, even though her mind and body have given up.
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One thing I do want to say, is after reading and studying up on the Lewy body dementia. I have not given mom any of her regimen of meds they prescribed. I now know that a lot of what was happening to her was adverse reaction to some of the meds. They were suppose to keep her relaxed and calm but meds like these don't always work on some LBD patients. I learned that also some of the anti psychotic meds can make things worst. Mom slept 14 hours last night with no medication given to her.
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Carol72156 did your mom have Dementia? I noticed signs of things with mom about a year and a half ago. But never paid to much attention to them. It wasn't until she fell in July and after being at the hospital and having ct scans and mris they told me she has progressive dementia. Mom was great right after we brought her home. But started going down hill shortly after that. She's been with us now for going on 5 months. Its such a hard thing to watch and even more difficult to deal with. I am so glad there are so many of us compassionate people out there giving our loved ones care. I am so grateful for everyone on this forum. They have answers...when no one else could tell me. God Bless.
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Msdaizy: My mom has started to push the food away too. The last two days she hardly ate. The food looked good too. She just took the jello. Today for dinner I asked her if she could please try to eat something. She started to eat some of the green beans and took some bites of the "pizza" they had. I had to leave before her dinner was over, but called her before she went to bed. She sounded so tired, but she told me she ate "alot". You are truly in my thoughts tonight. I hope you can get a good night's rest.
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My Mom began to eat less about a month before she passed away. Finally it was just a couple bites of food and a sip of water. Then, the last two weeks Mom was in bed and slept almost like she was in a coma.

Mom was on hospice so whenever I had any questions, I'd ask a nurse. Also, no matter what time of day or night it was, if I had a concern about Mom, I called hospice and they were always very helpful.
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My Mom began to eat less about a month before she passed away. Finally it was just a couple bites of food and a sip of water. Then, the last two weeks Mom was in bed and slept almost like she was in a coma.

Mom was on hospice so whenever I had any questions, I'd ask a nurse. Also, no matter what time of day or night it was, if I had a concern about Mom, I called hospice and they were always very helpful.
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I don't think eating is a reliable gauge. My husband didn't eat anything on some days weeks before he died. He ate lightly the days leading up to his death and he had a good breakfast on the day he died.

I think this irregular pattern is not unusual, according to the hospice books.
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msdaisy, Sounds like your mom may have some time. My dad could not eat at all for the last seven or so days.

I wish you strength and peace through God's love. I pray for His Blessing on you and your family.
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Mom isn't completely bed ridden yet. I transfer her to come sit in her lift chair in the living room. She likes to be out with us and the kids. She still knows when she has to go potty..so I get her on the bedside commode or the bathroom toilet. But trying to hold on to her and clean her off is sometimes challenging.
She ate a little bit tonight..mainly picking at her food. She still likes cheetos so she got those for a special treat. The coffee she usually loves is not tasting good to her anymore..because every sip she takes she makes a funny face.
She is more alert today...so maybe it's going to be a crazy night but what ever it takes I will be here for her. She deserves it.
Merry Christmas to you all..and may you get rest tonight.
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Mz Daisy - how eerily similar to my mother. She also went to complete bedrest about 10 days ago. She is now incontinent. She is totally alert at some moments, then confused the next. She has AML (leukemia, the elderly kind), and I shudder to imagine what her H and H levels are. She has been on hospice for one month. They are good people. Talk about angels among us. Their grief counselor has been wonderful to me. Peace to you.
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Do talk to the hospice nurse, msdaizy. What I noticed the last day was picking at covers and clothing. It resulted in getting tangled in the bedclothes. I'd straighten them out and it would happen all over again. Reaching up with his hands. More difficulty breathing. Some agitation, but not severe.

I hope your mother goes in peace, but even if she experiences some agitation at the end, be grateful for all the comfort you have been able to give her along the way. And I am so glad that she has had many years after her own caregiving role ended.

Hugs to you, dear msdaizy.
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msdaizy, I am so sorry. I will have you and your mom in my thoughts during your vigil. This time is so hard on everyone involved. May she be blessed with peace.
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Yes we have been on Hospice for 2 months now. She has stopped walking as of last week. She has been losing her appetite more and more. Things she loved she is pushing away. I am so grateful for all of you and your endless words of encouragement and advice. I pray for this to end...and for her to be at peace. My father passed away 10 years ago Dec 29th. When he died my mom took care of him from a massive stroke for 13 years as a caregiver. When he died I prayed my mom would have 10 good years of freedom. I think my prayer was answered. Only I wished it the end wouldn't have been so hard for her. I'm just praying that it happens in a peaceful sleep. God Bless you all.
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My mom is on hospice...ms. Daizy, that sounds like my mom. Hospice says within the next couple weeks. I am actually sleeping better this week, after about 6 months of not sleeping. I am on FMLA from work as primary caregiver...she is sleeping a lot more, and I thank god she sleeps soundly like 11 hours at night. She is needing morphine sub lingual for SOB in the afternoon, but it helps her, and makes her comfortable. She had stopped eating mostly everything for about 2 weeks, but this week, has asked for soup and today, for jello. She only eats a few bites, but that's ok. Hospice told me it takes more energy to burn and digest food than to not eat. Its the body conserving any energy it has. I wake up each morning wondering if I will find my mom alive or not, but don't fret too much about it. I have done evertthing I could for her, and now its in someone else's hands I guess. I can only hope I have someone take this kind of care of me at my end of life. May god bless you and send his angels down to watch over you and your mom.
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