Taking my husband off of hospice. Advice?
My husband has had quite an experience with Parkinson’s for the last four years or so. He was put on hospice nearly a year ago. On the last nurse’s visit she said they may take him off hospice because he can walk now, although very shakily; his tremors have practically stopped; he gained four pounds - up to 105 - in two months; he hasn’t fallen in several weeks. He is confused over what this means for his care. He thinks it means they are giving up and will not provide any services. I’ve tried explaining it’s really kind of the opposite, more like he requires less care because he is better now, not on the verge of passing. Even though he is improved physically, his mental condition is worse. He is depressed and anxious. He takes 100mg Sertraline once a day and 1mg Alprazolam 3Xday. But he says he feels like he is just hanging on by his fingernails. Has anyone had better luck with another med to relieve anxiety?
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Any and all equipment that you have from Hospice will be returned to the company that brought it.
If there are things that you need the doctor can order specific pieces of equipment and Medicare/Medicaid will probably cover it.
Keep detailed records of his decline and he may well be eligible for Hospice again.
(I always kept notes on my Husbands decline as that added information when he was due to be recertified.)
He will no longer have the Hospice doctor so he will have to return to his previous medical team.
As to the anxiety and the meds talk to his neurologist. If you have all the information as to what he has been on and what the medication has done that will help the doctor see if there is another that will work. medicating with Parkinson's can be tricky and if the dementia he has is Lewy Body that makes it more difficult.
Best to you both - there is nothing easy with Parkinson's. :-|
My husband has not responded well to most anti anxiety medications. But these two, or any combination of one or both, keep him calm, relaxed, and are not addictive. The problem with some habit-forming (addictive) anxiety meds, is that over time, they lose their effectiveness, and the patient is more anxious because they need more of the drug. In fact, talk with the doctor before you stop any medications, and be sure to wean him slowly and safely.
To be clear, the medications I suggested are not anti anxiety, but rather, sedative in nature. But, still, it might be worth weaning him off of the anxiety meds.
Just because hospice is stopping services, doesn't mean you can't replace that with some other home care services. Try an agency that provides home health care. The hospice nurse may be able to make a recommendation.
id forgotten about pallative care … possibly since it’s “new”.
it seems a really nice way of helping people between independence and hospice.
thank you for mentioning it !
As for the medication, another replay had a good point about the fact he’s putting on weight and medications may work differently but if you can get him to a geriatric psychologist or a geriatric specialist I would strongly recommend it. We were constantly having to change psyc medications, add or subtract them, change dosage for my mom because it’s such a fine balance and the disease progresses. I imagine it’s just as prevalent with Parkinson’s given it’s neurological so maybe for him it’s his neurologist who stays on top of his behavioral meds but don’t hesitate to call whoever it is and tell them what isn’t working, if that doesn’t work pursue another specialist as well.
Sending strength
Magnesium glycinate supplementation definitely helped reduce Mom's anxiety and she was on it for years but she was not on a lot of prescription meds.
Since your husband is on a lot of prescription meds I'd ask his PCP or pharmacist about efficacy of adding magnesium glycinate to your husband's care plan and effect on his current meds.
If you decide to try it make sure to get the glycinate version to prevent loose stool. We were giving Mom 400 mg per day and she is a small woman. Usually it comes as 200 mg. You can also stagger dosage.
Is it possible for your husband to continue with palliative care? That would give you added help and might give him the reassurance he is seeking.
Best of luck.
Klonopin or Xanax. They are addictive, and are being less used now, but I know you understand that the most important thing is getting your husband to want to live, specially if his health is doing fairly well.
Best of luck, hopefully others will have ideas too.
Tell him that they thought he was dying, but INSTEAD he is getting better.
Tell him he deserves a graduation cap, gown and scroll for doing so well.
Graduating from Hospice! Throw him a party, I say.
I know, if there is some loss of mental acquity your hubby may never understand that he just became to well for end of life care. But that's the fact of the matter.
I wish you both well. I hope you aren't going to miss the extra care too much?