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Dilirium

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Does anyone here have any experience in dealing with dilirium. My wife who is 53 has advaced cervical stage 4B and is on a pain pump using hydromorph and the last 2-3 days she has become really dilirius. Problems in knowing the time of day, what day, what is happening, etc.. Just wondering if anyone has dealt with this as a caregiver and had any suggestions.

Thanks
John

MCKMNL
Posts: 40
Joined: Jan 2011

I have no experience with this, I wish I could offer some advice. You both are in my thoughts.

Missy

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Patrick is very delusional most of the time and it's getting worse not better. He has long involved conversations with invisible people, hears things and sees things that just aren't there. He is on a combination of 100/mcg of fentenyl and 150 mgs of oxycodone, so I'm not sure if this is from the meds or if this another fun side effect of the beast within. It's very possible he has mets to the brain as it would not be a short trip for his C (stage 4b laryngeal).

All I can do is try my best to keep him in the present. I answer his questions honestly, no matter how outlandish they may seem. And sometimes they really really do come out of left field.

If it helps, get a dry erase board and write the day and date on it where she can see it. And any time she asks answer as best you can. As much as you want to freak out, don't let that be the face she sees. It bothers Patrick when he realizes whats going on, but I try not to let it bother me because of how it bothers him.

Sorry if I babbled. I'm just really tired :)

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

John,

I lost my beloved husband on Dec. 20, 2010. He had been doing ok until three or four days before his passing. Up to that time he had not even experienced pain, but the Thursday before, it began. We had already been enrolled into Hospice, as difficult as that move was for him. I, as well as his Oncologist, had explained that it was not just for the dying, but to assist us. Thank God he had finally agreed to it.

He was dx with extensive sclc in April of 2010, and of course, we had been given the prognosis. He believed with all his heart that he could survive beyond the prognosis. I prayed with all my heart that he would!

After a fairly good response to his first line chemo, and PCI, the monster reared it's ugly head and by November, we knew it had gone to several bones and his liver had suffered from the mets and the cancer. He was weak, but was still able to get around. We were blessed to have gone to the beach for a week and spent a lovely thanksgiving with our family.

As I said, on Wed., Dec. 15, we had been at the Dr.'s and he told her that he was experiencing some pain in his upper abdomen. They believed that it was the cancer in his liver and she scheduled him to begin Topetecan on Monday, the 20th. He had second line chemo four weeks before of carbo/taxol, with no good results. I knew we were coming to the end of treatments, and the sadness that it could be soon that he could pass.

He was given oxycodone for this pain, which was really about a 2/3 in his words. By Thursday night he really began to feel pain in his back, and really had not eaten for a few days. The oxy made him very drowsy, he was taking it every 6 hrs., but by Friday the Hospice Dr. had moved up to every 4 hrs. Very, very drowsy, and even fell on me once. Hospice nurse came to check on him and explained that he would adjust to the pain med. soon and would be clearer. Beginning on Sat. night the hallucinations started. Or was it hallucinations? Our Chaplain had spoken to us about "transition" and how one begins to prepare for the end. He wasn't communicating too well, his voice was low and weak. Once he sat up and told me that there was a bomb under our bed and that he had to diffuse it. I told him that I would do it, and I got up and did it! Then and only then, did he calm down. My love and I were both in the service, he served in Vietnam, and that was always a threat, bombs placed under vehicles and such. Throughout this time, he continually told me that he loved me, that he adored me. He also spoke of "them" showing him a "threat". I told him to tell "them" that he had Jesus by his side, and that no one could threaten or harm him. Once, he sat up, and told me that a lady was shouting "hi" to him, I told him to say hi back. On Sunday morning, I awoke to see him sitting on the edge of the bed. He actually looked better, and when I asked him how he was and what he was doing, he said, " I'm doing better, I'm fine". Then his eyes and his head began to dart around the room as if he was watching something fly around, when I asked him what was the matter he replied, " these elves, they're doing trickery on me"! And then he said that our daughter and I were elves and we were doing "trickery" on him, too. I told him not to be mad, we were just in the Christmas spirit, then he said ok and smiled.

He would have some lucid moments, when the meds were wearing off, one time I held him and told him that if he saw the Lord to go with him, that I would have a broken heart and miss him terribly, but that I would be alright. He gritted his teeth and told me, " I am not going anywhere!"

At a point, early Monday morning, he told me to just let him die, so I asked him if he really wanted me to do that, and he said, " no, I was just kidding". When Hospice came they ordered the extended strong pain meds, with a sedative. His pain was increasing, and as sad as it was to understand that only through him being so sedated, would the pain be controlled, but that we would no longer be able to communicate, I knew I would not hear his voice again.

I had read months before that during a person's transition time that they can become restless, agitated, and of course the meds could cause hallucinations. What I have shared with you is how I
experienced his moments and how I dealt with it. It was very hard to see and hear what he was going through, but I knew to go along with it, not argue or correct, or say that wasn't happening. I tried to calm and soothe any fears or disturbances he felt. I kept our room softly lit, played soft instrumental music very low, and held him constantly. I was blessed that our beautiful daughter was there and we shared in his care those last 3 days. Hospice was very caring, helpful and considerate to all of us.

When his time came, something came over me, as well. I knew that this was the time to give him all the love I had. Caring for him, bathing him, administering his meds, reading to him, kissing him, holding him... I felt that everything I had was for him in those days, soon I would have time to take care of myself.

I am sending you prayers and good wishes that you may be strong in these times. And that your wife be comfortable, without pain and able to feel your love.

Lucy

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Lucy,

Thanks for your insight my wife’s cancer is cervical dx in Aug end of Sept has spread to liver and lungs, and has been in pain since early August. They started chemo in Oct with Cisplatin and Topotecan, helped with the pelvic tumor but not with the liver and lungs. They switched her Taxol in Nov and she seems to have gone down hill since then, last CT in early Dec showed 2 tumors and countless spots in the liver.

My wife has been on hydromorph started off with pill form but since late Dec has been receiving the liquid type via a pump she gets 2/mg every hour, and still the worst pain for her is in the back which is where it all started. The whole thing is so sad you get to the point your best times are when they are sleeping at least as the caregiver you know they are not in pain. I find since the delirium started about 3 days ago she is very restless and has no clue, what day/time, etc it is and is constantly talking and having conversations through the night.

Did you find your husband was worse at night. I asked the Dr and home care nurse today is the beginigng of the end for her they don’t yet. Could be urinary infection, they are thinking it is either liver or kidney failure or mets to the brain. Kidney failure is common with cervical cancer.

As the caregiver everyone tells us to look after ourselves but it is easy not so easy to do when caring for a loved one and seeing them fall apart a little more every week.

Again thanks for the words of encouragement and your prayers too. I hope you are doing ok as well this is hard especially when they are so young and still should have so many years ahead together.

John

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Lucy,

Thanks for your insight my wife’s cancer is cervical dx in Aug end of Sept has spread to liver and lungs, and has been in pain since early August. They started chemo in Oct with Cisplatin and Topotecan, helped with the pelvic tumor but not with the liver and lungs. They switched her Taxol in Nov and she seems to have gone down hill since then, last CT in early Dec showed 2 tumors and countless spots in the liver.

My wife has been on hydromorph started off with pill form but since late Dec has been receiving the liquid type via a pump she gets 2/mg every hour, and still the worst pain for her is in the back which is where it all started. The whole thing is so sad you get to the point your best times are when they are sleeping at least as the caregiver you know they are not in pain. I find since the delirium started about 3 days ago she is very restless and has no clue, what day/time, etc it is and is constantly talking and having conversations through the night.

Did you find your husband was worse at night. I asked the Dr and home care nurse today is the beginigng of the end for her they don’t yet. Could be urinary infection, they are thinking it is either liver or kidney failure or mets to the brain. Kidney failure is common with cervical cancer.

As the caregiver everyone tells us to look after ourselves but it is easy not so easy to do when caring for a loved one and seeing them fall apart a little more every week.

Again thanks for the words of encouragement and your prayers too. I hope you are doing ok as well this is hard especially when they are so young and still should have so many years ahead together.

John

Noellesmom
Posts: 1270
Joined: Aug 2010

John, I can't remember if you have hospice helping you or not. If not, this would be a good time to speak with your doctor about getting hospice help. Remember, it is not only for end of life care.

Hugs.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

John,
Mike was convinced he was being sent to Iraq on a special mission to paint houses. On a couple of nights he was able to use his cell phone and called people in the middle of the night telling them to make reservations to come to Virginia because he had found an "East Coast Donor" A few times he told me that I was not to be trusted.
Most of the time I just went with the delusion, it seemed to make it easier for him than trying to explain why he was not thinking clearly. One of the things that the docs used to to to see how his mental status was; they would ask him, "Do you know where you are? Whats the name of this building?, What day is it?" Mike always got the first two right, but after being in the hospital for weeks, even I couldn't tell what day of the week it was or what the date was. We used a dry erase marker and put the day, date, and doctors and nurses names on it to help keep him oriented. He also had a difficult time telling between am and pm, becuase he was sleeping so much of the time, he's see 3:00 on the clock and make phone calls, thinking it was three in the afternoon.
I work in a psych hospital, so delusions aren't too scary for me. I just didn't take it personally, and humored him as much as possible to help keep him calm. Trying to talk him out of what he was believing, tho, caused him to be more agitated,
Penny

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Thanks everyone for your comments sounds like this kind of behaviour is common as their lives near an end. The doctors think it is liver shutting down and not filtering the toxins or the cancer has spread to her brain. I do try and agree with what she is saying so not to upset her too much. She was up at 3 this morning looking for her passport, then at 4 trying to open the pain pump thought it was her purse she wanted all her money, then at 5:30 she opened her nephrostomy bag and the bed was wet. She does come out if and thinks clearly sometimes seems the dilirium happens more at night. I tried to give her a sleeping pill at 10 last night and she thought it was 10 in the morning. Trying tell them they are wrong does seem to agitate them more.

Penny how are you doing I know it has only been a couple of weeks since losing Mike, I presume it is day by day just like dealing with illness. Hang in there I am sure there will be better days ahead.

John

Noellesmom
Posts: 1270
Joined: Aug 2010

John, I may have missed your response - is hospice helping you?

Remember, you don't have to call them just at the end of life - many people use their services for months.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello John and welcome to you and your wife. I was a caregiver for my dad. He passed in March 2010 from esophageal cancer. I have been where you are right now. This is called the ending stages of life. The meds, cancer, and dehydration make them very dilirious. I would suggest having hospice come soon. They will help you and she understand what is happening, and how to accept it. It is very hard as a caregiver to watch our loved ones be in so much pain. Just tell her how much you love her daily. Hug her often. Give her your blessing that it is ok if she wants to move on to the next world. This will give her the peace she is looking for. Hope this helps. You are not alone my dear friend. We will be thinking of you and praying you get the answers you are looking for.
Tina in Va

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

This is a difficult time. Get Hospice in there as soon as you can. They will help both of you more than you can imagine and they will make sure she is not in pain. It's time for your wife to find peace. She has to know that it's okay for her to go. I have been in your shoes. My husband passed Jan. 6th. Give your wife all the love and support you can while she is still with you.

(((HUGS & PRAYERS)))

Skipper

neverquit
Posts: 221
Joined: Oct 2010

John, Tina and Skipper are right. I just went through the same thing with my husband who passed away on 1/23. Hospice was called in on Friday, I told him it was OK to go that night, and he went peacefully early Sunday morning. It sucks but he is free and in peace.

Hopeful720's picture
Hopeful720
Posts: 92
Joined: Feb 2010

what you're going through. The last few months for my dad (56 years old) he was having many hallucinations. A lot had to do with the CO2 levels going to his brain, and lack of oxygen towards the end. He was confused about what was going on around him, and the cancer turned a witty, brilliant man into someone that did not know how to use a remote control. It was devastating to watch. He did know who everyone was, and he was able to discuss memories from years ago, but just became confused at times. I always answered his questions as best I could, and tried to ease his anxieties when he became frustrated in his confusion. I held his hand and let him know it was okay. He thought his oxygen was coming from various locations in the house and I tried to just answer his questions no matter what. I am sorry you are going through this with your wife. My thoughts and prayers are with you during this difficult time. Your wife is lucky to have you by her side John. No one should have to watch their family member not only suffer from this terrible disease, but also to watch them be confused at daly occurrences, and not know what is going on around them. It is too much.

Prayers and warmth,

Lauren

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

Hello All Tina in VA, Skipper, Lauren and everyone else who has offered good advice.
You are all right on there is no doubt she is in final stages the home care nurse has told me that and the doctors they figure she has 4-6 weeks. The delirium is better they cut back on the pain meds but the pain worse, today alone she has had 5 or 6 severe pain attacks, the nurse thinks it may have moved into her pelvic bones. There is myself and our 3 kids all in their 20’s helping look after her and trying to work. She has not been out of bed in 4 days, getting IV every day for dehydration, eating very little, constipated, and very weak. A week ago she was moving around the house, we were eating meals together, watching tv, etc. She is scheduled for a CT this Friday just don’t if she is able to deal with it at this point, but everyone wants her to have it.

I am going to the hospice tomorrow weather dependant calling for 10-12” of snow tomorrow. The doctors, nurses, family and friends have been suggesting this to me over the last month.You are all right it is just so hard to watch a loved one suffer so much day and night, especially ones spouse at such a young age. The idea of sending her away is gut wrenching for me, but so is the idea of watching her suffer every day and the idea of watching her die at home. It probably is the more humane way of dealing with it, we don’t treat our pets this way.

The kids and my wife are trying to talk me into going away for a few days to relax and get away from the stree, just don’t know if I should also don’t if I would really enjoy it guess need to take that day to day as the last 7 months have been.

Thanks again to everyone will let you all know what happens over the next few days.

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

John:

You don't have to send your wife away if you don't want to. Hospice has service in your home as well. I can tell you that when my husband went to the hospice facility I stayed most nights and it was comforting to know I could sleep and the nurses would be there if he needed them or to give him pain meds when needed etc. It got to a point where the nurses told me to go sleep at home for a couple of nights. I also couldn't bear the thought of my husband dying at home. I don't think I could live in the house again. One thing with hospice, if you want to leave to get some time alone you are only a phone call away. You can go to the store or even a movie to give your mind a rest. Generally hospice doesn't accept patients at their center until they have only two or maybe three weeks left.

However, if you feel better having your wife at home hospice will still be there for you. They have a home program. You will have to give most of the care to your wife but when my sister had hospice at home they sent a nurse every day (I think twice a day) to check on her pain meds and then there was a home health aide to help bathe her.

I hope you get to talk with them very soon. They are there for the rest of the family as well as the patient. They are wonderful people and will help you make the decisions that are right for you.

Once your wife gets into the hospice program there are no more CT scans or chemo. No more IV's. It's all about whatever it takes to make the patient as comfortable as possible.

Good luck. My prayers and thoughts are with you.

Skipper

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

I do hope that you are able to get hospice set up as soon as time permits. My experience was at home with my husband. As I shared before, his time came very fast, within 3 days of him beginning to feel bad and in pain. We had also felt that at the hospice facility was were we would be most comfortable. We didn't make it to that point, and I am now glad that we were at able spent his last days in the comfort of our home. Honestly, he was really sedated the day he passed, so it may have been for my best. Wherever you and her decide, it is where your hearts are that makes it better.

It must be so difficult to have to work during this time, but many must. I pray that you have understanding co-workers that are willing to do a little more while you are going through this. Having your children there must be a comfort. It was for me, and I know my husband knew that they were there for us both!

And yes, take moments for yourself. Cat-nap, watch a favorite show, read, pray or meditate. I suppose your weather is keeping most indoors, but a short trip to a coffee shop may be a good diversion.

My prayers are with you, your wife and family.

Lucy

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