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I've posted before that mother has colon cancer and we are home from the hospital with hospice. Friday will be two weeks that we are home. Yesterday she slept a lot, but was ok when she woke up. At 8:30 pm she used the bathroom, put her back in bed and she finally slept because she had a lot of pain from her arthritis. I gave her her meds and around 2:00 am, dilaudid. Today she also slept a lot nurse told me to start giving her Ativan regularly, not as needed like I was doing, but all of a sudden she's starting to see things that are not there, talking not clearly, wanting to go do things like cutting something... before she also asked me if my dad was there (my father passed away 10 years ago) I told her no and she said good.
I'm scared what's going on? Is it the meds? Is it part of the decline fast approaching? It's 12:30 am I told her to just relax and sleep that tomorrow we will do everything. She also as not used the bathroom since last evening. She said she wanted to around 6:00 pm I tried to get her up but she was very weak and not able. I'm sleeping next to her in a different bed and she keeps talking/mumbling. I hope someone is up and knows what's happening, what do I do?

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I don't have a lot of experience with this but just feel really bad for you and wanted to reach out. I hope someone else can offer more helpful information.

What they told us with hospice is that the person can be declining then perk up then go back to sleeping a lot. My grandpa had a rapid decline of about 2 weeks after a case of pneumonia he never fully recovered from. His was pretty steady where he started sleeping more and hardly eating, waking only to take a sip of water. By the time he stopped drinking he was not waking up at all. We did not see those bursts of energy like they said he might get, so I don't know what it looks like when someone gets those. Hopefully others will be up to comment.

Do you think your mom might be reacting to the Ativan? It can cause hallucinations in some people, and can cause agitation (it did agitate my grandpa before, though he did not have any visible effects when they administered it to him when he was sleeping so much.) Also is she still drinking fluids? Do you think she could be dehydrated?

I am so sorry. I know it is scary. Did your hospice people give you a number you can call 24/7? They must be used to getting calls from family members in similar situations. I hope your mom is ok and that you will be able to get some sleep.
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There is nothing to do but be with her. She may continue this way for awhile or she may go back to sleep. You could hum or sing to her or tell her a story or speak to her of things you know she would find comforting. You could brush her hair, put lotion on her arms and legs or just sit with her quietly. If she can no longer get up for the bathroom, it might be more comfortable for her to have a catheter. Ask her hospice nurse tomorrow. When are you to give her the antivan next? There's probably a little too much on board and that is causing her to hallucinate but it's really not a problem, right? Do you need someone with you? You might want someone or you might want to just keep your mom company while she finishes up on this plane. I think you did the right thing to tell her you would help her do things tomorrow after you both get some rest. Hugs for you both.
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Thank you both so much. Unfortunately I don't have anyone that can be with me. I want my husband to get sleep because he needs to go to work, my sons have school/work and I have no sybilings. I don't know if it's the Ativan she's on the lowest dose plus for the past years she's been taking Percocet for her back pain that's a much stronger med.
It's 2:00 am and she keeps talking/mumbeling, I tried telling her to go to sleep but she keeps talking. I'm not saying anything to her.
I wish I had someone that could stay with me...
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Thinking of you blackcloud...
I hope you can get some rest tonight
Hugs, Bella
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I'm so sorry. It does help to have someone with you. If it is like this tomorrow, I wouldn't think twice about asking your husband and sons to take turns staying with you. This is a big deal and you need support. It might just not have occurred to them how hard this is for you. And chances are they will be able to sleep there anyway.

It must be a comfort to your mom that you are there with her. 97yearoldmom is so right - what you said to your mom was really nice. We talked with my grandpa a little and held his hand, but most of the time we just sat with him. (And we did take breaks too.)

I feel really bad for you and your mom. I hope things calm down a bit so you can sleep a little.
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I wish you had someone with you too. But it's probably like dreaming out loud that she is doing. Try taking some deep breaths. Breath in through your nose at a slow count of 8. Hold it for 8 and then breath out through your mouth for a count of 8. Do this several times to help you relax. Let your shoulders come down. My theory is that it's hard work to die. The body wants to keep going. It has an incredible strong tether to life. When that last breath is gone from your mom, she will be gone. That sounds so obvious but what I mean is that her body will be just an empty vessel. The essence of her will have " flown away". Just like that old spiritual. I'll fly away oh glory. I'll fly away. Hallelujah. When I die, hallelujah by and by, I'll fly away. A long time ago, when someone died, their friends or relatives would " sit up" with them. They would keep the deceased company by sitting in the funeral parlor with them all night. The deceased were not left alone until they were buried. At some point that stopped. Now people go home from the funeral home at a set time. The staff locks the door and the deceased are alone in the funeral parlor until the staff comes back in the next day. When my MIL was dying, my SILs all went home at the end of the day. I couldn't imagine leaving my mother to go home to bed while she was still alive. My husband stayed with his mother and I would join him. He was alone with her when she passed. When my mother was dying I had been with her in the hospital for several days. Almost two weeks night and day. I was so tired. My nephews came to sit with their grandmother. They told me to go home. They would call me if she passed. I went home and slept hard. They called me. She was gone. I was so sorry that I had left her. So even though you are alone know that it is a good thing that you are there with her in her last days. Some of the dying will fly away when they are alone. They will wait for you to leave. Regardless of how it happens, it is okay. It is their choice. The decision has been made that she needs to go. So let her go and be out of her pain. Her breath must stop but yours must continue. Breath again and try to rest. Just being there is enough. It's everything really.
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Blackcloudone,
You are sitting up with your mother who is declining?
Putting on some soft music, reading to her, may soothe her.

Take a lukewarm washcloth gently to her face. This is comforting. Talk to her. If she awakes enough to want to go to the bathroom, you may need to ask your husband to wake up just long enough to assist her to use the toilet.
Or, do you have a bedpan, or waterproof sheets?
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It may be that your mother's body is no longer able to process the Ativan efficiently so the dose is building up. Call the hospice team and ask them what to do. If your mother wasn't showing signs of agitation or distress prior to the regular doses, make sure you tell them that, too.

Note: you're not disagreeing, you're just asking. Don't worry that anyone will think you're being difficult or a nuisance, you're just being a good caregiver.
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If you have concerns about giving the ativan, be sure to speak with the hospice nurse before giving your Mom another dose. imo.
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We're sitting with you, blackcloudone

May you both find a little rest tonight

If it is keeping with your beliefs then say the Lord's Prayer wth your mom and end with God bless mom

I'm not versed in hospice care but my mom doesn't do well on Ativan on a hospital setting and a large dose knocks her out
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Ms Madge, beautifully said.
Yes we are sitting with you now, Blackcloud.
Many of us have been where you are now. While it's tough, it's an honor to be with your loved one when they leave. A time like no other. Hold her hand, speak to her with love, just being there is enough.
During my mom's final night, I just provided comfort, did some mouth care, cool washcloud to her forehead as she was clammy,  rearranged the pillows and sheets. Just being able to touch her felt very calming for me, and I hope her as well. 
Our hearts are with you. 
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Ohh, "Dear" blackcloud, many shoulders are here to lean on for you...lotsa gentle hugs...tissues, and big ears to just listen too. 
My time will come when I will be in your shoes and it scares me/makes my tummy flip ...but, knowing aging care friends will be here to hold me up and walk me through the "unknown" brings me comfort that I won't be totally alone.

Hoping you find comfort and a little less loneliness being here.

Thank you for sharing your experience with your sweet momma.....

Thinking of you both all day,
Bella
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