My husband is only 57 and in final stages of LBD. Qualified for Hospice. He needs someone with him on a one-to-one at all times. I am lost. If he comes home will need 24 hour care. No one wants to help for entire time unless payment is out of pocket. I don't want to put in a nursing home because the more meds he is on the more he will be agitated. Please, I have reached out to everyone. All door have been closed in my face. No one helps. Please advise.
Is your husband agitated most of the night? Usually by the time they are on hospice dementia patients sleep a good deal of the day and night. Could you sleep when he sleeps? I know that is not a sound and refreshing kind of sleep but for a relatively short period it can be done. We moved furniture and managed to fit the hospital bed in. I slept 4 feet away from him. I also had help coming in, but since he slept so much she had little to do while he was on hospice (5 weeks).
Does your husband take anything for the agitation? Mine (also LBD) took seroquel. He used it for the entire 10 years. Hospice discontinued it, but quickly added it back in when it became apparent it was necessary for this comfort.
My heart goes out to you. All dementia is cruel but it seems especially brutal when it strikes so early.
I would also like more info on what it means to be "chemically induced" - I have heard of people on hospice can go under 'respite sedation' to break the cycle of pain & agitation. The plan is not to keep them snowed after that but a medical intervention for specific outcomes & the patient should be more alert after receiving treatment. Anyone with dementia will have a tough time adjusting to a new environment - that's a given but should be prepared for. What does the facility do if someone is agitated & doesn't want to stay at first? Find out - I have heard not great stories of staff telling family just to leave without saying goodbye.
Sounds like a lot of fear here of the unknown - take the time to really understand what you are signing up for & what the care plan will be. Some facilities have better relationships with hospice than others and there are free standing (few unfortunately) hospice homes as well.
The fact is that most people spend less than 2 weeks on average on hospice - we need to change that and help folks along the emotional continuum so they feel like they are "playing God". When we make decisions based on comfort - the lens gets real clear.
Good luck to you :-)
I am so sorry you are having to go through this, but the reality is that your husband is dying and this form of pain control would give your husband relief in a way that conventional pain control can't. I understand how painful this is for you and chemical inducement can be a form of "pre-death," but it would be so much more painful to be around your husband while he is agitated and suffering so much. We don't do that to the animals we love--we don't allow them to suffer inhumanely.
I am disabled with severe Fibromyalgia and I had an accute flare-up of nerve pain that my pain medicine could not touch, where I was suffering so deeply all I could do was rock uncontollably from side to side and moan---for 36 hours. When the pain finally broke, my husband was exhausted from the helplessness and despair he felt while watching me go through what I went through. Imagine having to go through that hour after hour, for days on end with your husband. Not only would you have to deal with your own suffering, think of the depth of his physical suffering.
However, you will not know the why for chemical inducement unless you talk with the hospice physician. Also, unless things have changed, you can request to stay with your husband's doctor instead of going with the hospice physician--even while he is on Hospice care. Please know that you are in my thoughts and I am sending you and your husband love, light, healing energy and prayers for strength and comfort. Hospice will have a Chaplain, ask to meet with them---they really will be able to help because they are trained to listen and be there to support you.
We need to know why the doctor wants the patient sedated. If it is terminal agitation that can be aggressively pursued and it may take a few trials to get it right as patients vary in response. If it is an artifact of the diagnosis where a patient is hitting out at staff or something like that, this might be considered chemical restraint for safety and if properly done can be handled at home but it would be hell on an individual caregiver without help. I've seen a few exceptions but not many. I'm not sure what the others mean by "chemical inducement" unless they are mixing it up with the oft heard phrase chemically induced coma (usually related to trauma), it is not a hospice term.
I hope Dennie speaks with a hospice social worker to help get a better understanding.
If I made this even more confusing, feel free to ask again!
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