Terminal agitation

[xipotec]

As many of you already know, my FIL is in his last days with pancreatic cancer,

He seems to have Terminal Agitation. I was wondering if anyone had any knowledge or experience with this and could offer some guidance.

Our hospice team is terrible, and I know many people have good experiences with hospice but ours has been awful. They are very little help.

 

[PrincessJo]

My grandmother passed away just a couple of weeks ago at 94.

At the end she used foul language that she had never used before. She was singing WWII songs and talking about the war as if it was yesterday. All she kept saying to the family was, can I go to sleep now? Can I go to sleep now?

My Mom and everyone kept telling her over and over, yes Mum, you can go to sleep now, it's okay. Go on, we will all be fine.

It took a lot of patience and love, but she passed peacefully. Maybe she's dancing to those WWII songs now too

I'm not sure there are any words I can share with you to ease the suffering of your family. My heart and thoughts are with you at this time. Be strong.

 

[MEK]

I am so very sorry about your FIL. Knowing that he is agitated must make your entire family feel so much worse.

I don't know a lot about hospice care, but I know they generally use a sublingual morphine that eases respiratory rate and provides pain management and relaxation. Is he receiving this? If so, could he perhaps have a drug sensitivity towards it?

My thoughts are with you.

 

[xipotec]

Apparently its is a syndrome that can happen when someone has unresolved life issues. There are reports of massive drug doses not helping.
He is in very high methadone and haldol now, and still awake and agitated.

Its also called the "difficult death"

I hope someone might be able to relate how they managed it.

Interesting story about WWII

 

[mommasita]

I have never heard of it...
Sending lots of strength to you and your family. It sounds rough to deal with, along with everything else.

 

[Enchanted Minnie]

I'm so sorry to hear about your FIL. I work at a VA hospital as a tech. I frequently will work on the hospic/pallative care floor. I didn't have much experience with death before working there so I still have alot to learn also. As far as I have seen it can be common for terminal agitation towards the end. Anywhere from a few weeks, day, or hours before the end. Patient's may see loved ones and start talking to them. They may "pick" at the air like they're trying to grab something. They may relive an important time in their life, like WWII. (my grandmother did the same thing because she lived in Austria during the war. She kept talking about the crying babies). They may develop a personality that they've never had before. Usually it's more aggressive and not like them. Doesn't mean they're really like that. It's just part of the mind slowing down. I don't know if it means that they have "unfinished business" or they are struggling with something in their past. I would guess life isn't perfect for anyone and we all have something that happened in our life that we'd like to change.

From what I have learned from the hospice nurses is it's harder for the loved ones to watch this transition then the patient. There is medication for them to relax them or ease some pain. I think coming into this world isn't always easy, long labor, complications etc. And now that I've seen many of my patients pass it's the same leaving this world. Some pass peacefully and some not. I have had the nicest patients struggle at the end, it is what it is. It's not always fair but hopefully they have loved ones and caregivers there to help them.

I hope maybe a bit of that helps answer a few of your questions. And hopefully someone else will have more experience to help answer them also. I will have you and your family in my thoughts and prayers.

 

[eculmone]

Hang in there. From the sounds of it it wont be too long but it is so upsetting to have to watch them suffer and feel so helpless

 

[Muushka]

A dear friend passed away 3 years ago and suffered from terminal aggitation. I live in a different state so I only heard about it from his wife.

From my small understanding of the process, you are right, unresolved issues and from what my hospice nurse friend told me, it also involves anger about dying.

He became quite violent. Hospice finally helped but it was a terrible thing for his wife to experience.

Oh dear. I just noticed when this thread started. I'm so sorry.

 

[Pea-n-Me]

I see this is an old thread but I will respond anyway, as both a longtime hospital nurse and someone with a recent hospice experience with a loved one myself. It is really a form of delirium, that occurs when a series of biological changes occur in the body. Delirium can be extremely difficult to deal with as both a patient and a caregiver. One must find the right balances among body systems (like wake and sleep), and complementary and pharmacological therapies, yet this is extremely challenging to do and to sustain. All it takes is one sleepless night to revert back to a state of restlessness and delirium. (Yet it is so nice when on occasion you can strike that right balance.) In hospice care, one must keep in mind that the ultimate goal is comfort. Medications can be scary to administer when you feel that harm might come to the patient from them. And often, increasingly large doses are needed, and side effects can be many. My heart goes out to families without medical backgrounds trying to manage this, and other realities of caregiving at home. I hope that things are going better for you, and if your father passed, it was ultimately peaceful.

 

[mdvlprof]

Sorry about your FIL. Dad passed away a few years ago from PC. Fortunately, tho, he was at peace. Knew Mom was $$ ok. 4 grown kids, all $$ ok. Active at church. Knew everyone would be ok.
The hard part was seeing mental brilliance reduced to mind of a pre-schooler.

 

[rlduvall]

I had never heard of terminal agitation until this thread, but it makes sense. When my mother entered the last few weeks of her life with terminal lung cancer, she was initially hateful and angry. It broke my heart to see her like that, but as she began to accept what was happening, or maybe the drugs kicking in, she changed and accepted her fate with tranquility and calmness. I never realized this might have had an actual name and it actually helps me to understand what was going on those last few weeks.

It has been almost 6 years and I still think of her every single day!

 

[DisneyFairytale]

When dad was nearing the week that he passed, he went through the same thing. He also said some pretty nasty things that were not normal for him, and he would also not recall conversations that we had. It was difficult, but we were able to try to keep him busy which help him settle a lot more. Are there things that you are able to offer him or show him, to allow him to focus on something like writting letters? or you can get him a memories book at your local book store which he can take time to fill, to share memories. Thats what we got my dad and it was wonderful for both him to fill and for us once he passed.