Taking my husband off of hospice. Advice?

Question

Taking my husband off of hospice. Advice?

Follow

Share

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?

Anxiety Care Decisions Depression Hospice Parkinson's Disease

This question has been closed for answers. Ask a New Question.

19 Answers

Most
Helpful Newest
First Oldest
First

Good morning. I hope I am understanding your situation correctly. If not, please set me straight.

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.

Helpful Answer (1)

Report

Going through something similar with my mother. They will not automatically move him to palliative care (at least they will not in my instance). They will, for all intents and purposes, simply cut him off. You will lose EVERYTHING that hospice provided, including any aides provided through Medicare. They will repossess the hospital bed, any equipment--including oxygen--and no one will be there to write prescriptions. Start seeking a medical provider right now as the wait lists for home care providers is very long. If your husband had a medical provider previous to the hospice certification, make contact today and see if you can set up telehealth appointments if you husband is unable to make office visits. While his physical condition may have marginally improved, you are in very much worse shape for services than when on hospice. It will now be up to you to coordinate everything and anything they had provided. I hate to be such a Debbie Downer, but you are essentially screwed (pardon the language).

Helpful Answer (1)

Report

You will lose the support you got from the Hospice Team.
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.

Helpful Answer (1)

Report

Try taking him to physical therapy. Improve diet and give supplements with naked egg protein drink, and try to decrease meds gradually that's probably what's making him depressed and anxious. Also physically moving your body increases serotonin and dopamine and makes you mentally feel better. Some social activity like an adult day care or some activities at the YMCA can help him be mentally engaged.

Helpful Answer (0)

Report

My hospice chaplain told me patients are allowed to stay on it as long as the upper arm circumference keeps declining. Yeah no, otherwise we would put anorexic girls into hospice.

Helpful Answer (0)

Report

Make sure hospice knows about his mental deterioration. He may be improving momentarily physically, but that is not the only measure. In any case, as someone else said, even if he is removed from the program, he could be back on if something changes. In addition, if there are multiple hospice programs in your area, you can apply for a different one and see what they say.

Best to you both - there is nothing easy with Parkinson's. :-|

Helpful Answer (1)

Report

Ask doctor about Depakote, and Trazodone.
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.

Helpful Answer (1)

Report

Sedating medications will most likely affect his motor skills and possibly cognitive abilities. Use with much caution.

(2)

Report

Excellent. Im not a professional but like to read about medical things.

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 !

Helpful Answer (3)

Report

Penguina: Speak to his neurologist.

Helpful Answer (0)

Report

Sorry for all that you and your husband are going through but taking patients off hospice according to certain metrics is common. My mother was on hospice for about 8 months. Dementia does not auto qualify a patient—dysphagia (trouble swallowing), weight loss will qualify him, so his weight gain shows improvement in his ability to stay alive if that makes sense is the easiest way to explain it….if someone continually looses weight they will die within the 6 month timeframe that hospice takes patients for. My mom was off hospice until she had an event. No, we arent doing testing to find out for sure it is a stroke but that is what was presumed with her word salad, worsened confusion, difficulty swallowing and inability to maintain her weight. It is supportive and comfort care. That being said, hospice can be called back should he develop something that qualifies him. Talk to his doctor and develop a plan, make decisions for when that happens. My mom did not want to go to a hospital, so I have an out of hospital do not resuscitate order I carry for when I take her on outings from memory care. When she had her “event” we were at the park with her greatgrands; 1 and 3 yr old. Another gentleman was near and I asked for him to help-explained our arrangements and he got my truck, helped to get her in truck and Zi took her to memory care and hospice came and assessed. She again qualified for hospice and has been on 4 months so far this time. Im thankful I did not have to put her through a hospitalization to arrive at the same point. I have people I can call to assist if needed when I take her on outings to help me get her back to memory care. If not for our plan she would have had 4 hospital visits by now and she was adamant about not have procedures/tubes, etc. Hope this helps you, it has provided us with a peace and allowed us to live as much as possible. My thoughts are with you both.

Helpful Answer (0)

Report

I hope they plan to move him to Palliative care if moving him off Hospice. The explanation to him can be simple, they no longer see him passing within the 3 month time frame because he’s doing so well so insurance is moving him to Palliative care which is for end of life patients who aren’t expected to pass in the next 3 month, happens all the time. If you feel he won’t understand that either you might try simply making the transfer, he may not actually notice. Now, I don’t know if it’s the same organization that provides both Hospice and Palliative care in your case, it would have been for my mom and that certainly makes it easier but I’m sure the caretakers who have been working with him from Hospice will have suggestions on how to make the transition easier for both of you.

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

Helpful Answer (0)

Report

Just my experience with my wife. Hospice care is substantially more than home health care and at least in my case once in hospice care was covered 100% so why not from a financial basis. You get very good care and access to some very good drugs that can ease any issues. Worst case after the 6 month evaluation they do not cover it. But let the insurance company make the decision. This is the game they want to play so play it.

Helpful Answer (2)

Report

Just my experience with my wife. Hospice care is substantially more than home health care and at least in my case once in hospice care was covered 100% so why not from a financial basis. You get very good care and access to some very good drugs that can ease any issues. Worst case after the 6 month evaluation they do not cover it. But let the insurance company make the decision. This is the game they want to play so play it.

Helpful Answer (0)

Report

Is there a reliable doc who will keep prescribing the Xanax or its close relative Ativan? Part of the reason he’s graduating from hospice is that he’s gained weight and function—which argues that his med regimen was working.

Helpful Answer (0)

Report

I would bet, Peggy Sue, that if he goes on palliative care (entirely different to Hospice) he could continue to get the medications that are working for him. I can't imagine them depriving him of them. Let's hope so, anyway.

(6)

Report

I will add to what a former poster the REalReal said about magnesium.

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.

Helpful Answer (1)

Report

My husband‘s neurologist prescribed Lexapro for anxiety and depression, and he saw relief very quickly, which continued until he died. Just through conversations I’ve had with people, it seems to work wonderfully or not at all, but you could ask about it. Be aware that any equipment being provided by hospice will be removed when they discharge. I would definitely recommend palliative care and if appropriate, he would be eligible for home health therapy services again.

Helpful Answer (1)

Report

You can ask his primary care physician to test him for an actual magnesium deficiency before giving him a supplement. You should always inform his doctors that you are adding a supplement if he is taking other meds, as there may be interaction.

Helpful Answer (8)

Report

Penquina, I would personally give my husband a magnesium supplement. Far to many people are deficient, upwards of 80%, and it is a vital nutrient for our nerves, along with 600 other functions, meaning other supplements and drugs can not do their intended job if we have a deficiency.

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.

Helpful Answer (2)

Report

Just tell him that Hospice is end of life care.
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?

Helpful Answer (8)

Report

This question has been closed for answers. Ask a New Question.

Taking my husband off of hospice. Advice?

19 Answers

Recent Questions

Popular Questions

Related Questions