Terminal Agitation/Restlessness

Bailey's Mom · September 29

My DH with AD was diagnosed with terminal agitation/restlessness and put on in-home hospice about a week ago. He was extremely ambulatory, verbal and could do all of his physical ADL's without assistance. A month ago I placed him in a MC facility for a 30 day respite so that I could have some work done on the house and get some rest…sole caregiver. He panicked when he realized that it was a locked facility…the second night he struck a female aide trying to get out of the door while she was emptying the trash…the police were called and they took him to the ER (aide too) for medical evaluation and then returned him to the MC. The next night he ripped a fire extinguisher off of the wall and attempted to break out the windows to escape…the facility was locked down, and the police took him away in handcuffs. I retrieved him from the ER the next day…he was urine soaked, terrified, almost non-verbal, couldn't dress himself or walk without assistance. Now his is almost a vegetable, after the hospice calming, sedation drugs…can't walk, even with a walker, dress himself, talk, eat without assistance, drink without help…after only l week! Without the drugs he is physically strong, but terrified of his delusions of ghosts living in the house and stealing from him, has capgras (doesn't recognize me as his wife), extreme paranoia and packs to go home (even furniture) every night. I feel like I am killing him with hospice, but also don't want him to live in fear and terror for the rest of his life. It is beyond devastating.

jgreen · September 29

Dear @Bailey's Mom

So very sorry you and DH are going through this extremely tough roller coaster ride. While not in same situation as you I have experienced the noticeable changes with any medication adjustments/additions. I am learning that it takes several days/weeks to ‘even out’.

Hospice is primarily comfort care for the LO and family support. Now that your DH is sedated, maybe talk with the hospice nurse about your concerns and see if there is a way they can ‘lighten’ the dose just a bit to see how DH responds. If they advise to remain with this regimen know that you are making sure he is not “living in fear and terror” anymore.

Please accept a big hug 💝

dcare45 · September 29

https://alzconnected.org/discussion/77232/terminal-agitation-restlessness

I agree with @jgreen . I'm sorry you have to be going through this. You are doing the best that you can and will make the right decision for your DH in the end. Sending you love and strength.

Biggles · September 30

Life dishes out some terrible challenges and I don't think it gets any worse than dementia and alz. Watching our LO suffer and crumble before our very eyes, destroying and losing all our memories and history. I am so very sorry you are in this awful predicament. None of us want or need this fear and terror neither do our LO. It's a lose lose situation that must be endured. Sending you strength and love.

annie51 · September 30

So sorry you’re dealing with this awful situation. It’s so stressful on you and to see him living in terror is just that much more heartbreaking. I hope he mellows out a bit and hospice can help you through this. Sending hugs!🫂

Sunfish47 · October 1

So sorry this has happened to you and DH. Seems to me I read many instances on this site of loved ones going downhill in their disease progression after a move to temporary memory care, cuz the caregiver absolutely, absolutely, absolutely NEEDS some respite. I hope hospice can get him back to his previous abilities. So sorry.

Karen711 · October 2

I’m so sorry to hear you and your DH are going through this. I will be placing my DW in mc in a couple of weeks and fear a similar result. Jgreen’s thoughts make sense to me. And you’re right, you don’t want him living in fear. If you’re comfortable with your hospice team let them guide you through this. Keep us posted. 💜

BPS · October 2

Talk to your hospice nurse and explain the changes and events. If she didn't see him a month ago she may not know the degree of chang. They should be willing to work with his medication to find the best option. My wife is on hospice and sleeps a lot, she also has high anxiety at times. I agreed to raising high medication knowing she may sleep even more but would not be scared when she was awake. There is no good answer.

Bailey's Mom · October 2

https://alzconnected.org/discussion/comment/283519#Comment_283519

His hospice team seems to be only focused on end of life, calming medicines, and don't want to consider anything else…he is medicated to a vegetative state and has lost all quality of life in 2 weeks. No matter what I say to them, the standard response is "he is going into the transition stage of actively dying…what if he isn't? His vitals are perfect, he has none of the traditional signs, like mottled skin, blue finger nails, he still eats and drinks, and hospice has downgraded his status so that instead of a nurse coming every day, it is a few days a week. I am going to contact a geriatric psychiatrist to see if his situation can at least be evaluated…I would hate to be wrong on this one. I would expect him to advocate for me, so I am going to get a second opinion, even if they think I a crazy and a wishful thinker.

BPS · October 3

You can also have him evaluated by a different hospice company. I was concerned about hospice from hearing storying like yours and not having any experience with it. I asked what if I don't like your treatment and they said that I would be able to have my wife evaluated by another company with no issues. In my case the hospice team have been very good to work with and only change or increase medication after I report an issue or they talk to me first. Myt wife is in MC and the hospice nurse sees her three times a week and more if there is an issue and a hospice aid comes five days a week.

CindyBum · October 3

Oh honey. The weight of the things we normal humans "get" to shoulder as caregivers is beyond comprehension. If I could take a piece of that load off of your shoulders, I sure would.

If it helps at all. You did the right thing for yourself and your husband. Respite is vital for you both. And, he needs the medications, but damn this bully of a disease for fighting all of that help so friggin' much.

I can only offer my own experience as well. When my DW was accepted into hospice, I had really, really underestimated how long she still had to live. I was reluctant to call them because of the idea I had of "they only accept people with 6 months to live." She only lasted 4 months after entering in-home hospice. Her last year was marked by terminal restlessness and agitation. Since she has passed, I became pretty convinced that her incessant wandering and not sleeping was sort of her last burst of energy before slipping away.

Big, big hug.

Cindy

persevere · October 3

just an observation. It seems that the respite in the hospice facility has kicked everything into high gear. I am a big advocate of hospice and it has been a lifesaver for me. But I have declined their offers for respite for just this reason. Seems like I have heard many stories like this and even one of the hospice nurses cautioned me. Hopefully if/when he’s home you can settle back into a manageable routine. But hospice will work with you to get the right med combination if they’re a good organization.

Bailey's Mom · October 4

https://alzconnected.org/discussion/comment/283591#Comment_283591

Cindy, Thanks so much for your post. I remember when you were going through the final phase with your partner, and always thought that you were so level headed and a great caregiver. I have tried to be, but it doesn't come naturally to me and I have made many mistakes along the way. His reaction to the respite at the MC facility was so unexpected and aggressive…I just was not prepared for it. He has been on in-home hospice since 9/21/26 and now is a complete vegetable and most likely won't make it through another day. I feel that I made a huge mistake with this too, and that I am killing him by administering the 'comfort drugs'. I tried to talk to his hospice nurse and ask if there was a possibility that he wasn't in the end of life stage and instead had severe agitation/sundowning that was exacerbated by his series of events…medication mismanagement by the VA, MC respite, fall injuring his back, 2 trips to the ER, 2 more trips to the ER with the police, and now in-home hospice. Her reaction was that 'he is actively dying and there was nothing I can do about it. If I wanted to revoke hospice, she would get the paperwork ready'. This has been so difficult, and I am afraid that I have made a big mess of it.

CindyBum · October 5

Bailey's Mom….I could have written what you wrote while my DW and I were in her last year. I still sometimes wonder if I should have changed meds earlier and if that would have helped. Or, had I not turned to grab a diaper, would she not have fallen and then passed away 12 days later? Was I medicating her too much at the end? I still cry about how her agitation and wandering took her over in that last year and what I could possibly have done better for her on that front. The only thing I'm absolutely sure that I did right was that I gave her my all and did my best and I poured every bit of love I had in me into my DW as she suffered. That's all we can ever do, I think, especially with the absence of better care options for people with dementia.

What hits me with your hospice nurse is the phrase "actively dying". The reality is, once our LOs get dementia, they are already actively dying. There is nothing we do in all of our caregiving that will stop that from happening. Once in Stage 8, I finally realized that. I did all I could do to ease her transition and that's the most I could ever do.

One thing I think helped me at the end came from my therapist. She asked me if I thought it might be helpful to say the things I wanted to say to her before she left this world. I told her how much I loved our life together and asked for her forgiveness for my mistakes in our relationship and in my caregiving. She had a moment when the words actually came and she said, "Wow. Me too." That brings me peace now.

Big hugs.

JAnn4563 · October 6

Wow beautifully said.

Momx3 · 2:13PM

I not for sure if my comment will be seen as appropiate but my DH is in stage 6 with EOAD/FTD. He tells me quite often he wishes he could just die. We witnessed his grandmother battle this disease and ended up in a nursing home where she died from a bed sore. We are not where you are in the disease but I wonder if death isn't actually a blessing. I know I would not want to live the way my husband is now where I don't recognize my children or grandchildren. Just my opinion…and I pray I don't hurt or offend anyone by sharing it.

Terminal Agitation/Restlessness

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