Is this to be expected?

You are doing what we all do, and are never sure of it either. Mumbling or moaning is maybe trying to express words, not necessarily physical pain. Crying eyes is more a sign of pain. You can never know what she is thinking or trying to say, but facial gestures can give you a hint. You may find that she seems drawn toward someone else who treats her and is more expressive to that person rather than you who has known her all her life. Everything you have said we have all seen in one way or another. There is no book, no check list; you are doing it right so don't fret over it. God bless you!

Your dear mother may be nearing the end. I send prayers to you.💞💞

Jjcares,
This may be a pitter pill to swallow, but it sounds as though you need to be prepared for her passing.
God bless you for taking such good care of her!
When our loved ones can't or won't even take the swabs, the end is most certainly near.
How wonderful to be able to help her move on! How wonderful to be there for comfort!
You're doing great! You're doing everything that can be done! Stay strong and loving! Yes, this is to be expected.
Sending prayers your way!
God bless!!

My mother (advanced progressive dementia) periodically does the reaching thing, usually with the most beautiful smile on her face. We were told it is classic Alzheimers and she has been doing it off and on for at least 12 months, we think mostly when she has had bouts of delerium.
As far as drugs are considered, ask if is possible to have patches. My mother is on pain killer patches changed weekly. There is no specific reason other than that pain is the only explanation for some of her behaviour. She gets bouts of constipation, skin tears from throwing herself out of her wheelchair, and it took some months to clear up a pressure sore sustained by using her feet to propel her wheelchair for long periods.

I just lost my mom early yesterday morning. She also had dementia and heart failure. My first time as well, experiencing my beautiful mom deteriorate so quickly within a matter of days. Everything you are seeing is absolutely natural and expected. I am still grieving heavily, but I didn't expect to feel at peace. Hospice is wonderful. I hated my mom having dementia, but, in the end, she wasn't at all fearful like she probably would have been if she knew it was her time. God bless you and your mother. She is in good hands, and so are you. Be strong.

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.

Talk to the hospice case worker. They have lots of experience in what to expect.

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

Many posts are from people whose loved ones died more than a few weeks ago. Things have changed since the pandemic though!
I know because my mother is going through the same thing as the OP is right now! Blessedly, her memory care facility is still letting me visit, but that is not true everywhere. Also, her hospice provider told me at the beginning of thIs pandemic that they would no longer be visiting facilities! Nevertheless, I have put in a phone call and am hoping they can at least give me advice over the phone!

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.

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.

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!🙏🏻❤️🤗😇

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

You are doing a terrific job. Glycerin swabs or swabs dipped in water will help keep her mouth moist. Keep a journal of when you are giving her medications so you can notice trends: when is she more agitated, when does she groan in pain.... You appear to be caring for her pain and discomfort well and the journal will help you feel more in control. If mom is not eating and minimally taking fluids, she will not last very long. Please contact the people who will need to care for her when she passes: EMS or doctor for death certificate (not emergency numbers), funeral home... to see what will change with COVID-19 restrictions in place. You may want to create a Zoom account to connect with family and friends now and for an online memorial.

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.

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.

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.

You need a doctor to look at her.
for feeding, she may need a G-tube

Keep in touch with her hospice nurse and ask her questions as well. They are a wonderful source of help and info ...what you are experiencing is very normal. I've cared for 8 friends and family members and at some point they gave all experienced what you've described. I'm sorry for what you are going through.

How are you doing?

I'm praying that you called Hospice, and that they actually sent someone out. If you feel you need or want a chaplain of someone of your religion, ask for them to come out too. Someone for you to sit with and talk... about anything. It helps, my chaplain came out every 2 weeks, and would call me to let me know. He would talk about his life, everyday things. It was nice listening to him, and it was nice of him to listen to me.

Times like these is when Hospice should be available...Please call them...

My experience was bad, but you don't need to do this by yourself. The least they can do is talk with you over the phone. It would be best if they come by...no matter what time.

SO -- CALL HOSPICE... You do not need to do this alone.

CALL HOSPICE NOW, AND ASK WHAT IS NORMAL AT THIS MOMENT WHEN MOM'S HEAD IS PITCHED BACK AND LOOKS UNCOMFORTABLE

CALL HOSPICE RIGHT NOW, AND TELL THEM YOU ARE NOT SURE WHAT IS GOING ON AND YOU WANT SOMEONE RIGHT NOW TO GIVE YOU A PHYSICAL SECOND OPINION ON WHAT STAGE YOUR MOM LOOKS LIKE SHE IS IN..

CALL HOSPICE NOW AND TELL THEM THAT YOU DO NOT WANT TO BE ALONE WITH MOM, YOU WANT HER COMFORTABLE, AND SHE DOESNS'T LOOK LIKE SHE IS AT EASE. YOU ARE NOT SURE HOW TO GET HER EASY.

CALL HOSPICE NOW, BECAUSE THEY SHOULD BE THERE NOT JUST FOR HER BUT FOR YOU TOO. AND TELL THEM YOU WANT SOMEONE OVER NOW.. WHEN CAN YOU COME OVER?

I probably would give her more ativan and morphine.. My mom was spewing out fluid from nose, mouth, etc. It was not fun and she was suffocating... I didn't know about the ativan, until the Angel of Hospice came by and cleaned her up, prppped her on her side, so the fluids would run out instead of back in. He cleaned her up, gave her ativan, eased the brain.

SO -- CALL HOSPICE... You do not need to do this alone.

I am sorry you are going through this.. I found out the hard way too. Hospice not my team, another woman who didn't know me, left me to take care of mom, or take her out... She told me to crush morphine every hour on the hour.. She did not tell me about the ativan, Lorazepam.. That sucked. the ativan removes the brain from the body. morhpine shuts down the body. without ativan it is very disturbing. Had I known, I wouldve crushed both the of them together, slide it in and around her cheeks. You need to get hospice in,, and call them every 10 minutes. if they are not by your side right now. CALL NOW, AND TALK WITH THEM CALL HOSPICE, AND KEEP CALLING HOSPICE. THAT IS WHY YOUR MOM IS ON HOSPICE. YOU NEED TO CALL HOSPICE AND BOTHER THEM EVERY 10 MINUTES
If you are giving her suppositories to help her, HOSPICE should be by your side, literally.

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.

Caregiving is not an easy and simple job. While the main responsibility of caregivers is to provide care to people, particularly to those who are sick and of old ages, caregivers also need to take care of themselves and to spend some time doing things outside of their duty. More often than not, caregivers need to juggle lots of different things at once (e.g. running errands, doing housework, and more) in order to fulfill their obligation. This often leaves them tired and drained, which if constantly disregarded, can lead to caregiver burnout.

Certainly, providing utmost care to someone is a fulfilling job and enjoyable to boot. It teaches one to care for others and to see the value in other people. However, despite the fun and lessons that it brings, caregiving is such a challenging responsibility. There several challenges encountered by caregivers while doing their job; the most common of which are anxiety, mental stress, financial issues, poor work-life balance, exhaustion, and more. To avoid being overpowered by these challenges, caregivers should be active, careful, and cautious all the time.

It may be. What has the hospice nurse told you? The nurse told me that my brother was dying.

He stopped eating and drinking. He became unconscious. Speak to the nurse and the social worker. The social worker also gave me a booklet to read. My brother was in an end of life facility.

I know that this is a difficult transition. I am sorry. Others will help answer this question so hang around.

Take care.