On average, how long does end-of-life anxiety last?

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Mapotter Asked July 2018

On average, how long does end-of-life anxiety last?

Mom has been crying (without tears) for hours at a time. It is pretty much a daily occurrence now. We have been giving her Lorazepam at least once per day, but will give it more often now. It doesn't really help, though. The hospice nurse came out yesterday and instructed us to give it to her every 8 hours to see if we can get it to stay in her system longer. In addition, she said to try morphine (small dose) to see if she is in pain. (Mom cannot tell us.)

While Mom seemed to calm down a little during the day yesterday -- she was walking around a little and standing (with assistance, of course), when I went to change her into her pajamas at 5:00, she started crying. She cried until after I left at 7:00. Nothing calms her, except looking at a picture of my granddaughter. Music doesn't help. Talking to her doesn't help. I gave her more morphine at 5:30, but it's obviously not physical pain. So, I will stop that. It appears to me to be her mental state.

When I arrived this morning at 8:00, Mom was quiet. Then the hospice aide came to bathe and dress her. Mom started crying as soon as the aide started changing her clothes. (This seems to be a pattern.) I gave Mom Lorazepam, but at 10:00, she was still crying.

Even though she appears to be talking when she is crying, very little of what she says is understandable. One thing she did say last night while crying, though, was "Daddy." That is what she called her father.

I contacted the hospice nurse this morning and she said she will talk to the doctor. She doesn't feel she has a UTI because the appearance of her urine is fine. Even if the doctor orders a sample, the only way they would get that is with a straight catheter. Mom will not stand for that. She is still a strong fighter.

What the nurse did say was that it could be end-of-life anxiety. How long does that anxiety (on average) tend to last before they give in?

Anxiety End of Life Hospice

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score 2 · Answer 1

This is definitely a roller coaster ride.

Today, Mom was hard to deal with. I took her to the store, but she was mad because I didn't get what she wanted. Whenever we would go to this one grocery store, she would always check (and usually buy) 12-packs of soda. In this case you had to buy 4 to get the sale price. Since I push her in a wheelchair, there is a limit to what I can buy of anything. Apparently, she was not happy because she took her foot off of the foot plate and caused the wheelchair to jerk forward (first as we were leaving the store, and again in the middle of the parking lot!)... She almost slid out of the chair...

Then, tonight, confusion set it (sundowners...). I kept telling her she couldn't go out the front door (because there are no railings), but you cannot reason with her. I ended up taking her for a ride (in her pjs and slippers) because she wanted to go somewhere... Then I had to force her to go to bed at 9:00 so I could go home. She was not happy....

I think back to last week when I was so upset about the thought of her being on her death bed, to feeling good about the two days she was doing well, then this evening, feeling frustrated when dealing with her dementia-like issues. In addition, I have to deal with my brother talking to Mom like she is a child -- Telling her how to unlock and open the door that I didn't want her to go out of in the first place! --"Turn the little thing in the middle. That's it. Now turn the big knob" ... Grrr....

I'd say it is an emotional roller coaster!

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score 2 · Answer 2

Thanks for the update Mapotter!
My Mom has the same problems with getting impacted easily. Senna stopped working for her. I give her magnesium 500 mg. One at night and one after breakfast. That seems to keep things running for now. This is a roller coaster ride!
Take Care :)

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score 1 · Answer 3

Today, Mom was still doing well, at least this evening. I didn’t get to her house until noon and she was still in bed asleep. So she had no breakfast. I adjusted her pillow and she woke up. She had a little to eat for lunch, but mostly drank — an Ensure and bottle of water. For dinner she had a very small salad, Ensure and very little spaghetti. So, she has cut down on food intake.

My real issue now is that the doctor wants her to take 10 mil of Senna Plus twice a day because she gets impacted so easily. Plus, while she was in bed all those days, she had no sense of when she had to go. Now, she doesn’t feel it because it is running out of her... The nurse says they would rather have that than her impacted. I have to change her several times a day now — but not because she tells me.... There has to be a balance here.... This is not fun...

But, on a good note, Mom has still not cried (knock on wood...).

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score 2 · Answer 4

Thanks for the update. The ups and downs of amazing "recoveries" can be so hard to deal with. On the one hand, you're happy they're doing better, but then you're just waiting uneasily for the other shoe to drop and for them to go downhill again. I remember those days with my mom well. Just enjoy the good days as best you can. {{{Hugs}}}

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score 0 · Answer 5

Thank you for the update! I sent you a message with my Mom's update. I am glad she is doing a little better. I hope she keeps it up. :)

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score 2 · Answer 6

Day 6(?)... As of Friday afternoon, I stopped giving Mom lorazepam. She has not cried at all. She has been sleeping and not eating very much...-- until 4:00 this afternoon... She wanted to get out of bed. I had her in the wheelchair. She ate a good dinner (actually fed herself). Then she sat in her chair in the living room for a while. Then wanted to get up and walk. She needed quite a bit of support since she has been in bed for the past 6 days (my arm is killing me....). She was laughing quite a bit, too. She kept wondering where everyone was, thinking more people were there or going to be there. Finally, at 8:15, I had to get her in bed so that I could go home. (My brother can watch after her while she is in bed.) I didn't get to sleep until 4 a.m. this morning, so I was done. She was not too happy about being in bed, and I bet she could have stayed up until 10. I don't know caused the change in her. She is like she was a few weeks ago, only a little weaker walking (and she wasn't crying...).

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score 2 · Answer 7

I wish I could get a grasp on how long anxiety can last for your aging parent. My mother fell last week which is adding another specialist to doctors for her to see. She had many stitches in her main hand. I wonder if I might ever feel normal although I cant really remember what normal felt like. I vacillate from guilt, worry, fear and general overall anxiety. Its also hard because she didnt take care of her health for years. She is a kind person. I just feel as though another pin, shoe will always drop.

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score 1 · Answer 8

Mapotter, now I'm bawling too - my mom would stand at her 4th-floor window and wave goodbye to me everytime I left. Your post reminded me of that. It's an emotional day for me and that makes me sob. But in a loving way...thanks for reminding me.

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score 2 · Answer 9

Blannie, thank you. When I was getting ready to leave, I told Mom that I would see her tomorrow. She said, "Okay." (99% of what she says doesn't make sense.) For years, Mom would stand at the window or door and wave to me as I was leaving (up until sometime last year). I remember crying (even 4 years ago) and thinking one day she will not be doing that anymore. Today, I bawled my eyes out just visualizing that memory...

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score 3 · Answer 10

Mapotter and Onlychild, I am so sorry you are going through this. I don't have great answers, I just wanted to offer my support from one caregiver to another. I had my mom on hospice for a week and I would drive to her apartment and be saying to myself, "Please be dead, please be dead" all the way there, because it was so hard to see her struggle. The hospice nurse was able to tell me when she thought it would be her last day and she was right - she passed away at around 11 PM that evening. I had sat with her all day and she passed when I was in the next room, taking a break. It's so hard. {{{Hugs}}}

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score 0 · Answer 11

Wow, Joann. I was trying to figure out how to get my sister in Mom's house. It would take two able-bodied men to get her in a transport wheelchair and up Mom's steps. Mom may pass before that happens. It is either that or we put her in an inpatient hospice center.

I did just get Mom in her wheelchair for a few minutes today. A few days ago she would walk with assistance. Now she can't walk... She got tired and indicated she wanted to get in bed (as best I could tell that is what she wanted). So, she is back in bed.

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score 2 · Answer 12

My Mom started humming. Each day it became more frequent and louder. Usually we would bring her up to a table and lock her wheelchair wheels. She would sit and just talk about whatever. But during this humming time, she would not sit still she had to be on the move and would get mad if you stopped her. She was given something for anxiety. Then she pretty much sat and just mumbled. Daughter said better than the anxiety at that point. It was downhill from there. She didn't want to get out of bed. She closed her eyes and never opened them again. But she responded to the nurse talking to her. She was having problems swallowing. I called Hospice in. Six days later she passed. It took about 2 weeks from beginning to end. Thevweek beforeveveryone came to see her except my nephew. I took him in to see her. We stayed till 1:30pm. I got a call, she was declared dead 20 min. later.

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score 2 · Answer 13

onlychild, We did not give Mom the Haldol (yet). She had been calm (sleeping) all day. Now she is starting to move around. She had an Ensure earlier, but so far has not taken anything else. This is so hard. My dad died of a heart attack at age 57. Somehow, a quick death seems so much easier than this...

That was nice that your Mom told you she loved you. Just hearing that makes it all worth it.

Hugs.

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score 4 · Answer 14

Mapotter, Im sorry you are going through this hard time. I wish things were different for my Mom and I. She actually slept all night, but woke up a 6:50 calling for her Mom with her legs dangling from her hospital bed. She was okay, and once she was back in bed she seemed a little better. She actually knew who I was, and she told me that she loved me. That was nice. I know its mean to "wish" she would go fast, but this is torture watching her slowly waste away.
I will try the Haldol again tonight. Can you let me know if you ended up giving your Mom the dosage of the Ativan and Haldol in between and let me know how that went?
Take Care :)

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score 2 · Answer 15

onlychild, Wow. Your Mom is young. (I am 61...) I feel so bad for you.

Day 2... I arrived and the aide was here. Mom was quiet, but just staring. She refused breakfast so far. I prayed that God would just take her in her sleep before I got here... I can't stop crying...

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score 2 · Answer 16

Mapotter, my Mom is very young. She is 67. It is so sad to see someone go downhill. She is sleeping right now, so now I get to wake her and get her ready for bed. Wish me luck! Have a good night!

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score 0 · Answer 17

Thank you Barb. Seeing Mom as she has been the past 3 days, I was giving her less than 2 weeks. She is eating less, and has refused some meals. I told my brother today that the hospice nurse said she could be having end-of-life anxiety. His response was that he knows she has declined, but "We aren't there yet." I'd say he is in denial.

onlychild, how old is your Mom? Mine is 94 and has really gone downhill in the past 9 months. She has aphasia. I have been caring for her since I retired last year January (she was still functional until 9 months ago). I don't live with her, but sometimes I think it would easier if I did. I am there most of the time. My brother, who lives with her, said he doesn't want to give her Haldol because he knows of someone's child who was given it for autism... :-/...

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score 3 · Answer 18

Mapotter, this happened to mom the last several days of her life. It was our primary reason for calling Hospice, because no amount of tramadol appeared to be able to control whatever pain, psychic or physical that she was experiencing.

We started her on Morphine on Wednesday afternoon, she died Friday afternoon.

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score 1 · Answer 19

Mapotter, I hate the idea of drugging her also, but she is not herself and I would like for her to be comfortable. Good luck to you! I will try the Haldol tonight and report back on here. I haven't slept well in 2 days. I hope it can keep her calm. I can handle her during the day, but not at night!

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score 2 · Answer 20

onlychild, it sounds like we are experiencing the same thing... The hospice nurse told me today that if the Lorazepam doesn't work to try the Haldol in between doses... God, I hate feeling like I am drugging her.... A friend of mine, who had vascular dementia, took Lorazepam and Haldol and her daughter said it made her nutty... Mom gets the next dose of Lorazepam around 5. Her dosage is .25 mg. She has been sleeping for the most part today. But, she has had periods of whining. And, yes, it sounds like she is having nightmares, but doesn't always appear she is sleeping by the grimace on her face.... She is definitely reliving something...

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score 2 · Answer 21

I was just going to post this question. My Mom is "in distress" but she can't communicate what ails her. It is so heartbreaking. She is eating and drinking less everyday. I gave her Ativan at night so that we can both sleep, but last night she was asleep, but making noises that sounded like she was having nightmares.
I called the hospice nurse and she said to try Haldol tonight and see if that calms her. It is in her kit that has the Morphine. Can you please let us know if anything helps your Mom?

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score 2 · Answer 22

Ahmijoy, that is good to know. I didn't realize it was not uncommon. It does seem more of a fear thing with Mom.

Cwillie, thank you.

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score 2 · Answer 23

There are alternatives to ativan, tell them it isn't working for her and ask for - insist on - something else.

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score 6 · Answer 24

One thing I learned with my mom and other people with dementia I observed is that they absolutely don’t like to be messed with. Bathing, feeding, changing clothes and bedding, that all kicks in their behaviors. A woman on my husband’s rehab floor carried on so loud we couldn’t hear his television and he was five rooms away. We think they’re in pain or anxious or afraid and we wish we could talk to the “normal” loved one for even ten seconds to ask them what they want and how we can help. Unfortunately not possible.

There is no time frame on this, Mapotter. No one can predict what’s in the future for Mom. My own mother became more or less comatose and the last time I saw her, 3 of us couldn’t wake her. But your mom has gone the other way. I honestly don’t think she is “crying” even though she may be making sobbing sounds. It’s her way of communicating now, even if only with herself.

My heart hurts for you. I hope you all find some peace some way, some how. Keep posting here, ecause it’s not just me. We ALL care. Xxoo

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On average, how long does end-of-life anxiety last?

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