Halioperidol in my toolkit

Lynne D

My HWD, despite being on Seroquel, is still prone to fits of agitation, especially regarding undergarments. Tonight I was dealing with him trailing urine soaked Depends goo all over the house, trying to get him to change into a fresh undergarment. He became violent,. I could not handle that along with cleanup, as I had the unfortunate luck to have pulled a muscle in my back.

I called hospice. They directed me to Haloperidol, in my emergency drug stash. Fifteen minutes later I have cooperation (of course accompanied by verbal abuse) then sleep 25 minutes later.

Before he nodded off he pointed to all of the people in the photos on his bureau and told me how much they loved him, and he proceeded to tell me how vile I am and call me every foul name in the book.

I am not one of those who had a healthy relationship with their “loved one.” This one is a narcissist (which persists even in dementia, apparently) and an emotional and verbal abuser. I invited him to take the earliest leave possible from the planet and told him he is killing me, literally. Not my best caregiving moment. 

He is getting more than he deserves.

Any information on placement in a hospice facility? 

Quilting brings calm

I have no knowledge of hospice facilities, other than  I’ve heard they exist.  I just wanted to let you know we care about you and we support you.  {{Hug}}

Cherjer

Sorry to hear this happening to you, Lynn. I am so glad Hospice came to the rescue! Sorry I do not have information on placement in a hospice facility but am sure you will get an answer. Too hard for you caring for him at home.

And you need to take care of yourself with the pulled muscle in you back.

Jo C.

Dear Lynne, there are not sufficient words to say how sorry I am for what you are enduring.  It certainly is a situation that appears to require professional relief assistance.  The inpatient Hospice setting in a free-standing Hospice has critiera that are fairly strict and once a patient can settle sufficiently to be managed in the home setting, most often the patient is discharged.

Who pays for full room and board is another issue.  Here is a link from Vitas Hospice which is a large national Hospice re inpatient Hospice care regarding criteria for admission:

https://www.vitas.com/for-healthcare-professionals/making-the-rounds/2019/october/inpatient-hospice-guidelines-for-our-patients

There is of course, the five day respite care option that is provided by Hospice.   Five days respite while a breather for the caregiver, is not a long term sustainable solution.  Still; being able to recoup a bit can be helpful.

While there are free standing Hospice care centers, they are far and few between.  Most Hospice entities will manage the patients in a nursing home setting with Hospice following; the majority of care comes from the nursing home staff.  This can be done for the respite period as mentioned or long term.  In Long Term, the family becomes responsible for the costs of the facility.

The "agitation" mentioned in the link above is not the type of behavior being demonstrated by your husband; however, since it is so severe and refractory to medication, it may trigger a change in services to accommodate the untenable position that exists.  Meds have been tried; however, at this point they are not sufficient for the continuing behaviors.

Since your husband is on Hospice service, it is unlikely that GeroPsych would be an option covered by Medicare; however, it is a question to ask Hospice about; who knows what may pop up.  Adjustments of meds appears to  be warranted; in this instance, the Hospice physician may wish to consult with a dementia specialist to find a more effective approach.

I so wish I had a good and easy answer for you.  The one thing I do not recall, is specifically what type of dementia your husband has. If it is Lewy Bodies Dementia, that is a dementia often refractory to medication management and Haldol contraindicated.  If not LBD, then that is different.

Lynne, if it is at all possible, it seems that the time has been reached that this is no longer a one woman job 24/7 with all the dread behaviors and managment issues.  If Hospice cannot cover the need for the level of care required, if you can find it within the budget to make placement with Hospice following him, that may be the one option that is going to bring that level of care needed.  Hospice physicians will of course have to find a way to adjust meds so that he is able to be cared for in a facility setting.

You have been an awesome caregiver and amazing person in so many ways for so long; I can only imagine the overwhelming dynamics and exhaustion. Please let us know how you are and what is happening. I will certainly be thinking of you and so hoping Hospice will be able to assist for the level of care required.  (They do have an obligation.)

J.

Jo C.

Addendum:  Was just scrolling thru the Vitas site when I came upon their descriptions of different levels of care when I saw the 24 Hour Intensive Comfort Care outline; scroll down toward bottom for detailed description:

https://www.vitas.com/care-services/hospice-care-at-home/intensive-comfort-care  

Wonder if this would be a Hospice service that could bring anything to the table.  It is a Medicare mandate for one type of four different levels of services when criteria is met.

J.

Lynne D

Thank you Jo C., that is helpful and I will be seeing the hospice nurse this week.

M1

Lynne i know how excruciating back problems can be, do get it looked at if it doesn't improve quickly.  Glad you had the haldol and it sounds like you may need to continue it, hope you will at the very least. Let us know what happens, i am so sorry. About the past as well as the present.

Ed1937

Lynne, you are a special kind of person to do what you have done for your husband, after a less than wholesome history. He is so lucky to have you by his side.

I don't really know much about the stand alone hospice facilities, but my brother was in one for about the last two weeks of his life. He had alz, but was not violent at all. Visiting was very private and comfortable, but when the nurses/aides had to check, they would let us know, and we would wait in another room until they had their job done. Everything was very clean, and the care was nothing short of excellent. I don't think this answers many questions for you, but maybe it will put you at ease if he does go to one.

toolbeltexpert

Lynne I have no experience to offer, I am glad you had your team and your toolbox had the right tools and you were able to accomplish your task. This is a testimony of your care even in the most trying of circumstances. You are in my prayers always. Sending hugs your way on the wings of the southbound hummingbirds.

Stewart

Jo C.

You now have the knowledge for the different levels of care as mandated by Medicare; hope it helps a bit.

If the Haldol is assisting, it is an option to continue using as necessary; and from your writing, it certainly does seem necessary.  Hope it will continue to help.

J.

ThisLife

Lynne D

Just wanted to send you hugs for then behaviors conditions you are enduring. I also a a caregiver to HWD with who I've not had a good relationship. I am not experiencing the level of abuse you are. My prayers are with you.

Joydean

Lynne, sending prayers and hugs your way! Please take care of your back!

abc123

Dear Lynne, just want you to know you are in my thoughts and prayers. I hope the meeting is a huge success and you get the help you need and deserve.

jfkoc

Haloperidol is not approved for use in older adults with dementia-related psychosis....drugs.com

To me this means that you try something else first. Bottom line is you want something that works and "not approved" does not mean never use.

Jo C.

Thinking of you, Lynne.

J.

jmlarue

I'm so very sorry for you, Lynne, and hoping against hope that the Hospice nurse can offer some substantial help.

Lynne D

Jo C., H has been diagnosed with mixed dementia, vascular and Alzheimer’s. 

You used the word “untenable.” That is spot-on. I meet with the hospice nurse tomorrow. 

French

Lynne, I really don’t know how you can bare all this. You are very courageous. I think I would have stop caregiving for long and I fully understand your reaction.

My partner barely speaks but still tells  me that I am pretty. He still loves me. It is comforting but also heartbreaking. I still love him but not the same way. 

He repeats « I stop ». I know that it means that he doesn’t want to live anymore. Not possible in France. Even  in Switzerland, Belgium or Netherlands, active dying is possible, but only for people who are able to clearly state it. So, I also wish that something will happen to shorten his life.