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My mom has declined rapidly over the last week. She has dementia. She moves only her arms in slow movements like she reaching. When I ask her questions or talk to her she moves her mouth and sometimes she will mumble or moan. Sometimes she will just moan so I think she may be having pain. I give her morphine and lorazepam. I also place an ABHR suppository if she is overly agitated. She is pretty uncommunicative. Her eyes open in slits now. She has her head pitched back at what I would consider an uncomfortable position with her mouth open. Her breathing is shallow and rapid. She was drinking from a straw until yesterday. I have started offering her water on swabs the hospice nurse gave us. She will suck on them. It seems she is thirsty. She has stopped eating and not taking her protein shakes. This is my first experience up close and personal caring for a dying person. Are these things to be expected? How do I truly know if needs something since she is no longer communicating. I’m not sure what I’m doing here.

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Lost my mom in 2018. Hospice folks are very helpful and can answer many of your questions. Being there, offering your prayers and support for your mom are so important. She’ll likely hear you even if she can’t respond. My mom could speak and asked for a final blessing with our pastor. Afterwards she was visibly more settled and peaceful. We implemented comfort measures and then waited for Mom to answer God’s call. It was the most difficult thing we’d ever done, but our solace was that as she left that body and mind that were broken and failing, she then walked in full light with our lord.
Best wishes
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Reply to DadsGurl
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What you are experiencing is normal.
Did Hospice give you any information, a pamphlet on what to expect? If not there is a real good one you can read on line called "Crossing the Creek" it explains a lot.
If you have any questions or fears you can call your Hospice 24/7 and someone will be able to answer your questions.
You can also ask if they have a Vigil service, someone will come and sit with you and mom. These are generally trained volunteers that have had a lot of experience. (they may have suspended volunteer services but you can ask about vigil services)
There are signs you can look for as she is getting closer to death. Breathing changes, you may hear sounds, commonly called "Death Rattle" (Cheyne-Stokes), you may see coloring of the skin change (Mottling) and one particular pressure sore can develop called a Kennedy Ulcer. It does not always happen but if it does death is usually within 24 to 48 hours. Sopping eating and drinking but that can happen days before death sometimes longer. Urine will become very dark but that would be expected if one is not drinking or eating.
The Hospice nurse told me that some people just want to die alone, or they do not want you to be there, they will wait until you leave the room to go get a drink, go to the bathroom and they will die. Almost as if they do not want to cause you more hurt.
Just hold moms hand, tell her you will be alright, thank her for all she has taught you. Tell her that you love her.
(((hugs))) to you.
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Reply to Grandma1954
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This is such a difficult stage of Life.. You are doing a great job with Mom, pls know that..

My Dad passed Feb 2018..As you’re doing, I would keep his mouth moist, put chapstick on his lips, hold his hand..I noticed, the tenseness in his muscles would subside when I would very gently massage his shoulders, temple..

I talked to him, told him to relax, let go, I would take care of Mom...

Sending prayers to you & Mom..A very tough time, you are doing all the right things for her..God Bless you both..We all understand this transition!🙏🏻❤️🤗😇
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Reply to cinzim281
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I agree that your should call hospice, if you haven’t already. There are legal issues that are easier when someone is “on hospice”. If your loved one dies at home, then the police and coroner must come out - but if they are registered with hospice then you can just notify hospice and funeral home. Sorry to sound morbidly practical, but you have enough on your plate now and hope to make your/her transition less difficult.
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Reply to Libbby
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Did your hospice give you a booklet or printed information about "what to expct? ". That is a hugely helpful guide to knowing what to expect. What you describe sounds completely normal. Distressing for you, of course, but completely normal..You can try to keep your mother calm if you can get medications into her. Don't worry about food and drink. When the body is quitting, it does not want any more food or drink, it just wants to shut down naturally.
Talk I her. Tell her love her and that she did a good job being a mother and you will be ok.I
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Reply to RedVanAnnie
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I'm sorry, I can't imagine trying to face this on your own ((hugs)). The only thing I can offer is that my mom was given her meds on a schedule rather than as needed - basically they kept her stoned out of her mind and 90% unconscious for her final days - and I was grateful.
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Reply to cwillie
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I cared for my mil until she passed in our home. Hospice was a great help but they are not there but a few times a week and not for long. What your mom is doing sounds much like my mil did after she decided that she no longer wanted to work at getting better. It was almost as if she then gave herself permission to die. We switched from home health care to hospice within the same organization.

My mil, while still non-verbally communicative, stopped eating and drinking. They told me not to force her or she might choke. She did suck on those swabs vigorously at times (and again, I worried about her choking). There were times when I could tell she wasn't at peace so I gave her the ativan. And I never went to a higher dosage of morphine because she didn't seem to be having any pain breakthroughs.

The hardest for me was changing her panties. I was so afraid of hurting her with all the maneuvering I would do. And it would be during those times her eyes would open and she would look at me but I didn't feel like she was seeing me. And yes, her head was way back in a way that I thought was uncomfortable BUT her oxygen number went up and we were able to stop giving her oxygen. It was available if her numbers went down but she stayed consistently above 97 after years of struggling to get her there with the supplemental oxygen. I was told this is not unusual.

She lingered like this for three weeks. The hospice nurse said there was some unfinished business. I took a guess at what that was (booking a vacation for my husband and I -- she had always said that when I was done taking care of her, we were to go to Florida) and when I told her I'd bought theme park tickets, she nodded her head and died 45 minutes later.
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Reply to graygrammie
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Zdarov Apr 3, 2020
Bless you, what a thoughtful response. We only hope the OP is reading.
(1)
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It's a tough time for you and I don't want to scare you anymore than need be. The "death rattle" scared the living crap out of me, it's normal but scary. I had a hard time giving my father his meds, ground up the pills with water and used an eye dropper in the corner of his mouth. Didn't find any for sale but the pharmacist had some and just gave them to me. I hoping you get the information and peace of mind to continue.
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Zdarov Apr 3, 2020
What a gift you were to him. Bless you. My father just passed in a facility because his wife was too scared to do this. People like you never cease to amaze me.
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Hey, so sorry you are going through this. I had to go through the journey of losing my mother 2 years ago. So I understand. When mom became uncommunicative I started to recognize what her behavior meant when I asked her a question. For example when I had to suction her throat, I would ask her if she wanted me to do that and she would open her mouth, I was so delighted when she did that (the little things). When my family members would call on the phone her breathing would increase, very short rapid. It was amazing. So just ecognize the signs, and that will make you feel better.
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Reply to Stylistchild3
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What you are experiencing is expected. People do stop eating and drinking due to the fact that their body is shutting down. Continue to do good mouth care as well as allowing her to suck on the swab. She may stop sucking on the swab and that is okay. Just keep providing good mouth care. It s ounds to me that you are doing a really great job as a caregiver. Don't hesitate to contact the hospice nurse if you need them. They are available to you 24/7. You could ask the nurse about positioning. Maybe rearranging pillows to support her neck and head to make her more comfortable. Take care. You're awesome for doing this. Not everyone can.
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Reply to Peanuts56
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