My husband is 72 and has been diagnosed with Lewy Body dementia. He is going on 9-10 years with first a memory problem but now has major behavioral issues. He is under Hospice palliative care. They have tried several different medications but nothing has helped so far. He just keeps getting worse. He is restless and always hiding, rearranging, or destroying things in the house. He relieves himself all over the house; just peed in my washing machine this afternoon. He will not take a shower or let me give him a bed bath. He's getting more abusive and not sleeping well. I'm trying to take care of him by myself but I'm getting worried that I won't be able to continue. Our local nursing homes won't take him because of his combativeness. We have two sons that are busy with their jobs and families. I am looking for a medication that will calm him down and give me some relief.
There are certain meds (I think it's Haldol) that should never be given to a LBD patient.
Big difference with the services that they can provide.
If he is on Palliative seeing a specialist that can get him on the correct medication, the correct dose would be great.
If he is on Hospice they can admit him to the In Patient Unit for Symptom Management.
If he is on Hospice the CNA should be the one giving him baths or showers.
If he is on Palliative Care I would talk to them about switching to Hospice. And Hospice staff can work magic getting someone into a facility if that is what is necessary. Once symptoms are managed it will be easier.
LBD can be very tricky there are medications that are typically given for anxiety and combativeness that can not / should not be given to someone with LBD as they can be fatal.
You can transfer his hospice benefit to a different hospice, you know.They are not all the same, for sure.
I would guess the goal for you might be to get him on meds that manage behavior somewhat, and then into a nursing home.
LBD is very very hard to live with, as well as to treat medically. My heart goes out to you.
Call the hospice nurse and tell them that he needs to be taken OFF Haldol.
Yes, he may NEED to be doped up, but not with Haldol.
the 2nd generation antipsychotics like olazapine etc. Are dangerous for
LBD as they interact with dopamine
and cause very serious side effects in LBD rigidity even death !!!
consult a very good geriatric psychiatrist or neurologist… and
start with very low doses.
also melatonin night and Ativan only when needed.
unfortunately many doctors /professionals not clued in !!!
we have to learn hard way and this forum great source info !!!
also when behaviours more controlled try to find good memory care for him and visit every day !!
LBD is not a gentle dementia!!!
best luck
My husband is on Trazodone and melatonin. Works wonders. It calms him from agitation and helps him sleep all night.
Hospice helped us get dad admitted to the behavioral unit where he got over prescribed a bunch of meds for memory (didn't keep him on) plus 100mg of Seroquel. The 100mg was causing too much sleep which lead to him not being able to help himself and that would lead to not wanting to eat because he would have not been able to stay awake.
So my primary helped us fine-tune and told us 50mg of Seroquel (melatonin optional) only at night and added citalopram for the morning regimen. So far/so good. Hoping all works out once placed in a nursing home. I'm still wrestling with the fact that he will have to go back to a nursing home instead of his home.
Don't give up either! Hoping you and your husband can find some peace as well!!!
I, also, would suggest researching and trying melatonin. It has many beneficial qualities. Personally, I would get him off of hospice completely. Are the limited services, besides the drugs, really adding any benefit? As someone said earlier, there is a difference in palliative care and hospice. I absolutely would NOT send him to hospice in-patient. He won't last long there. Their answer, as it has been thus far, will be to add additional/quantities drugs. You stated you are familiar with the side effects and Black Box Warnings for the drugs they are giving him. Please heed these warnings. They have been put there for this exact reason.
Please seek out care from another physician, preferably a geriatrician. You have your husband's best interests at heart. It doesn't appear that the ones treating him at this time have that same level of interest. Many prayers for you and your husband.