
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?
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?
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 !
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.
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.
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.
I used to work for a hospice agency. You might already know this, but it's true that every 6 months the hospice team has to discuss the patient. Insurance can be quite tricky. If a patient shows signs of improvement, such as walking even if very shakily and gaining some weight, this can possibly be viewed as an "improvement." So, Insurance may look at this and say that due to proof of documented "improvement" that he no longer meets the criteria for end of life/hospice care. However, if he is removed from hospice services, please contact them immediately if he has signs/documented proof that he's declining in health again. He could potentially be readmitted to hospice care.
I think you voiced concerns about some medications. If he has a primary doctor (some hospice patients are overseen by the hospice medical director/doctor), perhaps ask the hospice nurse how they can assist with making sure certain medications continue to be prescribed by the primary doctor so there is a smooth transition. You could emphasize your concerns about his increasing anxiety, too.
As far as trying to explain the transition of hospice services "leaving", I can only imagine the challenges you are facing as it is with his memory situation. However, perhaps trying to say often that hospice, his medical results, and his insurance all "see him doing better" now than before. That they think "he's doing well enough" that he doesn't need end of life care anymore and that this happens to a lot of people. Also, that if he ever needs hospice in the future, his doctor along with you both could call hospice to come evaluate him again.
I would maybe ask the hospice staff to refrain from using the words "leaving" or "ending" services if those words seem to upset him. Other people here may have better suggestions, but this is what came to my mind from my hospice working days. Although, it's YOU who knows him best.
With memory problems, perhaps asking hospice to help make this transition of stopping services as smooth as possible over some time, if possible, to allow him time to better adjust to routine support and seeing familiar staff faces slowly changing.
I'm still fairly new to this forum/website. If there's anything that I mentioned that doesn't fit what you needed or is not helpful at all, I apologize for that.
It's good for you to pick and choose what advice you think is the best for your situation. Regardless, know that I am thinking of you and your husband and that I pray for a gentle transition, and that you receive the help and support that you both need right now.
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