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Actively Dying

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Hospice listed my husband as "Actively Dying" on Monday and had to sedate him because he was so agitated and in so much pain. I asked what Actively Dying meant and was handed a booklet and was told it is all explained in this booklet. Well this booklet explained all these signs and symptoms of this actively dying thing broken down by time period. My husband is displaying some of the described signs and/or symptoms, but not all of them. And, the amount of sedatives prescribed do not keep him calm. I am only to give him the valium and haldol every 4 hours, however the effects of these medications only last maybe an hour and a half. He is unable to swallow anymore so I have to crush the valium and give it to him via a syring. Because the effects of the sedatives are only last the hour and a half, I am getting no sleep because he is waking up very agitated. I finally asked today if they could increase the dosage of the sedatives and was told no, they would increase his morphine instead. He is now getting 360mg per hour of morphine through his CADD pump. That was at 2:00pm today and he is still not calm and comfortable for more than an hour and a half and now he has become extremely hard to please and basically nothing I am doing is right. Not only that, if I leave the room, even just to use the rest room he flips out....even if he is asleep when I leave.

I still don't know what this actively dying really means and no one can or will tell me when I ask. I mean does this mean he will only be here another couple of days or is this going to go on for months? That stupid little booklet didn't give any specifics either except to say that it could be days or months. Has anyone else had their hospice assign this term to their loved one? If so, any experience, advice or information you can give me would be greatly appreciated.

Sherry

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

If you've read any of my prior posts you'll read that my husband passed one month ago. He was on hospice and they told me the same thing, that he was actively passing. They said that they can tell one way my looking at the feet. They showed me areas where they were starting to discolor which means the blood is failing to flow and the body is shutting down. My husband also took haldol but it was increased to every 2 hours when the agitation got really bad. I hated watching the process but I know he didn't suffer in the end.

My husband also would panic if I left the room or went to sleep. I survived on 3-4 hrs of sleep for nine months. I think that he was simply "afraid" that he would pass "alone". I imagined the fear is what causes most of this.

Please take care of yourself too and ask hospice to send a crisis nurse to spend the night. Then you can sleep and he will know he isn't alone.

Let me know how things go for you ok? My thoughts and prayers are with you.

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Michelle,

Thank you for the information. My request to increase the haldol was denied yesterday unfortunately. My husband is hallucinating now on top of everything else. His feet and ankles are blotchy, but they have been for several weeks. His breathing is very irregular and he has long pauses between breathes at times.

I did finally get a crisis nurse on Thursday, for 4 hours only. However the nurse informed me that she was there to "assist" me not replace me so it was really worse when she was here than when I am alone.

Take Care and thanks again for the information.

CherylMike
Posts: 118
Joined: Oct 2009

Sherry~ My husband passed away 2 weeks ago today. I also had hospice helping me. They assigned nurses 24 hrs a day at the end. They helped me with a timetable as Mike was slipping away. In the final hours, his breathing became labored and shallow. His fingers turned blue. I am so appreciative of the hospice help. When Mike passed, he was surrounded by his family at home. My husband also hallucinated. I was given haladol, but Mike ended up falling at home and was taken by ambulance to the hospital. He remained there 2 weeks, went to a hospice in care unit for 4 days and then was taken home for 2 days when he passed. Have you tried Antivan? This really helped Mike when he became agitated. It calmed him down and allowed him some peace. My heart is with you at this time. ~Cheryl

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Cheryl,
I am so sorry for your loss. My thoughts and prayers are with you and thank you for taking the time to answer me during this difficult time for you.

Yes, we tried Ativan, it had no affect on Gary what-so-ever. Thank you for the suggestion though. The on-call hospice nurse was here today at my request because Gary's halluciantions we so bad last night he actually thought I had him in the garage! The nurse increased the amount and frequency of haldol and is going to suggest to his doctor tomorrow that we try another, stronger sedative, I apologize I wrote the name of it down but don't have it handy, thorazine I think. She also assured me that what he is going through is common at this stage and is a result of the decrease in oxygen to his brain. He keeps taking his oxygen off though.

Thank you again for the advice and your thoughts. (((hugs)))

Sherry

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

My heart is breaking for you dear one....please pm me anytime if you want to talk. I lost my husband on 10-13-09 while under hospice as well. The haldol was given every 2 hrs which calmed him down but also assisted in the process to join the Lord.

((((Hugs and prayers)))

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Michelle

And my heart is breaking for you. I will take you up on your offer to talk and pm you.

Thank you....

Sherry

CherylMike
Posts: 118
Joined: Oct 2009

Thank you for the caring words. Mike hallucinated that my oldest son played professional basketball for the Taco Bell team. He thought all the doctors and nurses were Taco Bell employees and kept demanding that we get him out of the Taco Bell and take him home. At first I could rationalize with him. I would tell him that he must be having a dream. He would understand that this meant he was hallucinating. After awhile, I could not do this. He kept going in and out. However, even after the doctor told me that he would never "wake up" and be able to talk rationally, he did. I kissed him on the forehead and told him that I loved him. He told me that he loved me and to kiss him on the mouth! My son spoke to him and he spoke with my son for 5 minutes. He also "woke up" and spoke to my daughter (the day he passed). My best advice would be to talk to Gary, as he may have in and out times that he can speak with you. These times will be very precious in the time to come. (Mike was pretty good about the oxygen, but really bad about wanting to get out of bed. He was 6' 2", and he would fall when he got up. That was a challenge). I will keep you in my prayers ~ Cheryl

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Gary too is 6'2" and tries to get out of bed! These hallucinations are bizarre! At first I thought Gary was joking because he has such a good sense of humor until I laughed and he got angry. So now I try to explain to him that the things he is seeing and hearing are not real, but last night he had me outside checking because he was sure people where standing outside the window discussing how to steal his tools! Had a hard time convincing him that I didn't move him to the garage though. I have found that if I just go along with it he calms down faster. Tonite he was a little more coherent and we were able to talk for a few minutes. I spend a lot of time sitting by his bed reading to him (he always liked me to read to him), or just telling him what is going on in the house, with the grandbabies, or what was on the news. I actually have him set up in the living room so that he in the "midst of things" and can see what is going on in the kitchen and dining room. He was so happy to see my son yesterday after asking for him all night. He had it in his mind that they were going outside to do stucco work on the house though....my son was able to convince him that they should do it another day though.

This is a hard journey we are all traveling...some of more along the path than others and it is such a blessing that there are people out there that are willing to share of themselves...famliy and friends mean well and try so hard, but unless they have traveled this path, they really just don't understand.

Please keep in touch and let me know how you are doing.
(((hugs))) and prayers for you!

Sherry

CherylMike
Posts: 118
Joined: Oct 2009

I also had Mike's bed set up in the front room. We have a fish tank in there and would go and sit after supper. We use to talk and read together for hours in that room. He really loved it. I was glad that he could spend his last couple of days with his "fish" and family. Mike hallucinated one time that my 13 year old son and his 15 year old cousin were driving to Colorado. He was sure that his sister knew about it. We called her and she convinced him that she would never let the boys drive anywhere. I do not know why he had this thought? I am glad that you were able to spend time tonight with Gary.

I find night to be the hardest time. Mike had head and neck cancer that mets to his bones and organs. He fought for over 2 years. We would hold hands every night when we went to sleep. He hurt so bad at the end, holding hands seem to help ease his pain and mine. It is tough to be in the bed by myself (just the dogs and me). I sleep with his robe and that helps (it smells like Mike). I am getting by because of my kids (23, 21 and 13) The 21 and 13 year old are home with me. I make dinner, do laundry . . . to try and make things seem as much like "normal" as possible. My 13 year old told me that he hears his dad laughing at night and it makes him feel better. I was glad. Thank you so much for listening. You are right that unless you are going through this, you have no idea how hard it is. My God Bless~Cheryl

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Cheryl,

Gary's hallucinations last night were that he had a blanket out in his truck for me and he wouldn't settle down aobut it until I pretended to go out to the truck by stepping out on the porch with his truck keys in my hand. And there is some sort of wooden box with a green felt lid that I am supposed to find and give to my son Michael. I finally convinced him that I found it and Michael is coming to pick it up.

I am sleeping on the couch in the living room and last night light our dog insisted on sleeping on the couch with me. Who knew a pomeranian could take up so much room!

I am so glad that you have children at home with you still. I am sure that just doing the routine things with the kids is comforting in a small way. I keep thinking that I will have my grand daughters here as much as possible after...they are 1 and 3 and are the apple of Pop Pop's (Gary) eye. Especially the 3 year old..I can't even imagine trying to explain to her where Pop Pop is.....

Please keep in touch with me and let me know how you are doing.

Blessings to you and your family.

Sherry

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

Sherry,
My mother-in-law was hallucinating, too...or maybe it was disorientation... but in the beginning it was not too bad and we tried to orient her. But after a while it would just make her more agitated to try and orient her so we would just go along with it.
I did find that listening to what she was talking about helped me to know what she was thinking about or what was important to her. The people she was talking to (not there) events going on (happened years ago) etc.
You said in the first post your husband was getting 360 ml of morphine per hour - this seems like an awfully lot AND he is alert and hallucinating?
Fatima

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Fatima,

Yes, it was 360mg and now it is 500mg and he is not really alert, but he is hallucinating something fierce! I know most of it is from the morphine, but Gary is what they term "resistint" to medication and his pain had him screaming and flailing about. His pain is now controlled, but the hallucinations are pretty bad. We tried thorazine last night, but it actually had the reverse effect on Gary and we are back on Haldol and Valium and he is much calmer...still hallucinating, but not agitated and angry. Gary is also talking to people that are not there and imagining all kinds of situations that are not real. I tried reasoning with him as well, but now just go along with them....that seems to make them go away sooner.

Thank you and take care!
Sherry

CherylMike
Posts: 118
Joined: Oct 2009

I slept on the couch with my italian greyhound - thankfully she is small! I was able to sleep for the first time in weeks as the hospice nurse was there all night and kept checking Mike. I finally felt like I could sleep as I knew someone was keeping an eye on him and would wake me if he needed me (even though I was in the same room on the couch, I still needed the reassurance of having the nurse).

I hope Gary is more comfortable? I hope that you are getting some rest and eating. I am doing the best I can. I just seem to be anxious? I was exhausted, now I can not sleep? The kids are a huge help. My thirteen year old asked to see the counselor that he has talked to throughout Mike's illness. I am glad that he was able to verbalize that he needs help. I know that your grandkids will bring a smile - kids have an amazing ability to do that. I am stressing about the holidays - will be the first without Mike (last Thanksgiving he was in the hospital having lymph nodes removed. My daughter and I had turkey from Mayo's cafeteria). Two weeks later, we had our big Thanksgiving dinner at home with Mike. So, this will be a first for all of us. I am unsure if I should try to do something special that would make the kids feel as if their dad was with us?

Please keep replying - I take great comfort in this site. God Bless you ~Cheryl (my daughter has a pomeranian that weighs around 25 lbs - she is a BIG girl)

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Hi Cheryl,

Your last sentance made me giggle...out pom weighs 22lbs! Now I can tell her that she has company in the Big Girl category!

I am not able to get a nurse for the night unfortunately. Or even one that will stay longer than an hour during the day. Tomorrow I am going to have to make one of them stay with him so I can at least go to the store and get milk for my coffee! Don't get me wrong the nurses that come here are wonderful but they are overloaded with paitents and perpetually shorthanded. Gary has his worse night yet last night I am never even laid down, couldn't, he was in very bad shape with an adverse reaction to thorazine. Hopefullu tonight will be different. I am actually beyond being tired anymore.

What a smart young man your son is to know when to ask for help. Us adults can certainly learn a lesson from him! I dread the holidays this year. Gary loves Christmas and would deck our house out like crazy. In early October he picked out the grandkids Christmas presents from ads that came in the newspaper and made sure that I bought them right away so he could see them. Our oldest granddaughters birthday is in December and he also picked out her birthday present, she will be 3. I wish my daugher could be here, but it is way more important that she not risk her pregnancy, Gary would be devastated!

Hospice told me today that it will be a day or two at most. Gary has beat all their other projections, so I am not sure what to think about this.

I too find comfort here because everyone understands. I will continue to post and I hope you will too.

(((hugs))) and prayers!

Sherry

CherylMike
Posts: 118
Joined: Oct 2009

I am sorry that you had no sleep. I remember nights like those (I took my pj's to the hospital to try and have a sembalance of normalacy - however, the hospital only had a recliner that would snap back up every time you rolled over/ I felt like a pretzel). It was rough. I hope tonight is better for you and you can sleep.

Mike and I did not plan for Christmas. We honestly thought that he would be here. He fell and hit his head the beginning of Oct., spent 2 weeks in the hospital, 4 days at hospice in-care and then came home before he passed away. He had gone hunting with the boys mid September and was working full time until the first week of Sept. When the cancer got in his bones, it became extremely painful (he ended up with a pain pump to control the pain - even with that he was still taking dilaudide). I am so happy that Gary got to pick out gifts for your grandchildren. That will help make the holidays a little brighter.

Please hang in there. Mike went from hallucinations and being extremely agitated to very quiet. I was told that he would not wake up, but he did. He spoke to my kids and me the last day of his life. I really think he wanted to say good bye to all of us before he left. This time is a very precious memory to all of us. I will be praying for you and thinking of you.

Please continue writing~Cheryl

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

Sadly, this is a road many of us have traveled. My husband passed away 10-20-09 after a 6 year fight. Thankfully, he went pretty fast at the end. I don't have any sage advice. I'm sure your husband appreciates your care and love. I just wanted you to know that I'm here and thinking of you. Fay

mrsgeb's picture
mrsgeb
Posts: 32
Joined: Oct 2009

Thank you Fay. I have followed your posts and have admired how strong you are and how you have handled everything with such dignity. I appreciate your kind words and thoughts. Gary has been the most marvelous husband and friend and I am so lucky to have had the honor of being his wife and friend. He still tells me that he loves and thanks me for taking care of him. He is a class act and such a good person.

Take care Fay and you are in my prayers.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

You're a wonderful wife and caregiver and you've been so blessed with a loving husband. Please know that the hallucinations are just part of the process. I know it's hard, but you're a strong woman and I'm sure you'll be okay. Just keep in touch and take care of yourself too please?

My thoughts and prayers are with you. Email me anytime (you have my address).

((((hugs)))

teacher91
Posts: 3
Joined: Oct 2009

My Mom was starting to hallucinate and have these visions of people and going to "the house" while she was at home the last week of October. I was staying with her because she needed help remember medications and getting around safely. Hospice started to see that she was declining and gave me the booklet also. I guess I didn't want to think that it was happening so quickly. They suggested moving her to our hospice unit at the hospital for pain/symptom management and after a few days, she agreed to go.

She has been there since Oct. 30. Initially she was still alert although confused. She has pancreatic cancer and they saw that her liver was failing with jaundice and the mottling on her legs. She has been in a semi awake state since, sleeping most of the time, but she still tries to get up although she's gotten too weak to lift herself up like she was initially. I'm beside myself praying that she's comfortable.

They steadily raise the morphine which is up to 100mg./hr now. I thought this was a high amount as she is a small woman, but I see it can go higher. They say she does become tolerant. They also are administering haldol and ativan. She hasn't had any fluid since Nov. 1, except for what's in the morphine IV. Can this be enough to keep her going? I thought it was going to happen sooner, so I wanted her comfortable as she had wanted to be in the end, but now I'm afraid she would have wanted to be home and I don't know if that's an option or a reason she's holding on.

I'm torn between getting ready to mourn her and still trying to keep it together to take care of her affairs at home as well as trying to be there for my husband and daughters. Can this go on for weeks longer, or months in this state? I pray that she's comfortable. It's so hard to watch and not having been able to talk to her for weeks now.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

Ask the hospice nurses how long they think your mother will be here. I know they told me the my husband had hours or days. It turned out to be hours. This time is difficult whether the person is home or in a hospice unit. You have other responsibilities as well. Since your mother agreed to go to the hospice unit, she knew that meant dying there. She made the decision to be there. Honor that decision. Take care of your family and be with your mom as much as you can. Take care, Fay

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