Terminal agitation or restlessness

Quilting brings calm

Mom started this stage of the dying process yesterday . Made worse when she refused her Valium. She hasn’t yet started morphine because she doesn’t appear to be in pain. Neither does she have labored breathing even though we can’t keep her cannula in her nose. It was really bad yesterday and only a little better today with the Valium. Constantly scratching herself or pulling at her nightgown or sheet, with bent fingers. Moving her legs restlessly from bent knee to straighter.

So I tried something I had read about here. I put a small stress ball in one hand and a rolled up dry washcloth in the other. She’s had them in her hands for about 45 minutes and although restless, is sleeping some. She’s moving her arms and hands, but keeping the items in them. So thank you to whomever mentioned that idea a few weeks back.

oh, also, the hospice nurses are coming to the AL every day now.

harshedbuzz

@Quilting brings calm

I am sorry for this. However common and prepared you think you are; this is difficult stuff.

HB

Quilting brings calm

@harshedbuzz

This is a horrible way to die. Today the hospice doctor upped her Valium to 3 times a day, but not increase the dosage. It would only work for about 4 hours. I asked the AL nurse just what they were going to do overnight because she would have her last dose at 6pm, and not another until 6am…??? they gave her lorazepam at 4pm and said she could have it every 4 hours.

Her back and legs were extremely red from scratches. I hope they don’t turn into open sores.

tigersmom

@QBC, lorazepam was the only thing that calmed my husband’s agitation at the end. He received it every four hours, too. I hope it helps your dear mom. HB is right. This part is hard to watch. Thinking of you both.

GothicGremlin

I'm so sorry @Quilting brings calm this is very, very hard. I remember well when my sister was transitioning - pulling at the sheets, restless legs. We didn't start morphine until quite late for the same reasons.

Thinking of you both. I'm glad hospice is coming by every day, they were so helpful to us, I hope they're the same for you.

midge333

I think it would be a good idea to try the morphine. What if she is in pain and cannot express it in any way other than thrashing about and scratching herself? I think it is worth a try. You certainly won't harm her by giving it.

Quilting brings calm

@midge333

We are thinking alike. She cried out last night when the staff repositioned her trying to prevent bed sores. I talked to the hospice nurse this morning. We are going to give morphine when she cries out or moans. No closer than every two hours. It’s not going to be available 24/7 though because only a nurse or me can give it. The resident aids at the AL aren’t qualified to do so. So I may shift my visits later this week so that I can be there evenings after the AL nurse leaves.

H1235

Dementia is just so ugly and awful from being to end. So sorry you and your mom have to go through this!

midge333

@Quilting brings calm :

Let us know if it helps. Others may be in the same situation in the future. Good luck!

housefinch

I hope she can be more comfortable. And remember that inpatient hospice exists if she can’t be comfortable with the medication limitations you have where she is.

forbarbara

QBC, I’m right there with you. But because it’s cancer that’s killing MIL - dementia would have taken a lot longer to get to stage 7 - there is no question about the morphine. She’s getting it regularly and the MC medical team has been instructed by Hospice to give her additional morphine as needed. She’s near the end of transitioning and today I saw massive changes in the 5 hours I was there.

What works for me to reduce her anxiety is singing hymns. Because I don’t know all the words, I hum a lot and this morning she was trying to hum with me. A sweet moment. I hope you have some too.

Quilting brings calm

@housefinch Not sure we have any in-patient hospice services in my area. Is that something hospitals would provide? We are in central Illinois on the outskirts of Springfield.

Forbarbara - my step-dad probably died of an undiagnosed cancer in February. He was obviously in pain too and morphine was started as soon as possible once he went on hospice.

Mom didn't get any morphine by the time I left today. However the combination of lorazepam and more Valium seemed to be helping. She was asleep while I was there ( 2 hours mid morning, and 3 hours after lunch). Fidgety but asleep. I gather she was more fidgety while I was at lunch - it was time for meds. I am more than ok if she sleeps ( or is unresponsive) the rest of her time as long as we can keep her comfortable. The persistent terminal restlessness is hard to watch.

housefinch

I don’t know what exists in your area. However, if you are visiting and she appears uncomfortable and no staff is allowed to give morphine often enough (only because of no nurse there 24/7, etc), I would keep a possible transfer, even to a local hospital where she can get whatever she needs, to have a comfortable, peaceful passing. Or at least to somewhere your hospice company contracts with for inpatient hospice service (higher level of care). I think uncontrollable restlessness and agitation would count. But of course I understand not wanting to move her, too—-based on the scratching, I just assumed she was on regular morphine and having itching as a side effect. Sending you hugs.

Phoenix1966

Your mother is so lucky to have you looking after her so faithfully.

Despondent

Thanks for post. I hear you. My DH started with restlessness and agitation a few months ago. Still being ambulatory he did major damage to the yard. Literally pulled all the grass out of half the back yard. Hopefully will come back. He was started on Rexulti mid Sept. Nothing noticeable initially. Dr raised dose to 2 mg. Then the bottom fell out. He picked up everything in the house. 24-36hr. Days. About 4hrs sleep during this period. He tore kitchen & living room apart. Dr. finally Ok'd my titrating Rexulti. Started him on trazadone for sleep. Still daily agitation around 4pm. Used trazadone 1/4 during the day. Slept but reduced agitation. I didn't want him chemically restrained. That's one reason I wanted him home. Tried Seroquel Dr. had RX. I was afraid because same class as Rexulti but so far working well. DH is a quick sensitive responder. Will hold breathe daily because I know side effects will happen at anytime. Point being I couldn't stand seeing him restless then agitated. Fortunately, today he has perked up considerably.