helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
genden69

Hospice

29 posts in this topic

I am being encouraged by our Primary Care Physician to put my DH (Parkinson's diagnosed 19 1/2 years) on hospice. This is a difficult and heart wrenching decision for me. Any advice from those of you who have had personal experience with hospice?

Share this post


Link to post
Share on other sites

Do it.  You can drop out ANYTIME.  And rejoin anytime.  Try it, see if it helps you and him.  If it doesn't; drop it.  My father went through Hospice, my mother didn't.  My friend recently went through Hospice for PSP, and it really, really helped.  Her husband told me "we should have done this sooner."

 

I am sorry though, not what your want to hear your PcP say....I will hold you in my thoughts...

Share this post


Link to post
Share on other sites

Do it.  You can drop out ANYTIME.  And rejoin anytime.  Try it, see if it helps you and him.  If it doesn't; drop it.  My father went through Hospice, my mother didn't.  My friend recently went through Hospice for PSP, and it really, really helped.  Her husband told me "we should have done this sooner."

 

I am sorry though, not what your want to hear your PcP say....I will hold you in my thoughts...

Thank you for your information and kind thoughts. When they put DH on the scales today, it took two to do it, he only weighed 125 lbs with his jacket and hat on. I cried. The doctor showed me his chart. In January he weighed 156 lbs. Two months ago he weighed 135. It is a struggle to get him to eat. I try to temp him with all of his favorites. His dementia and psychosis is severe. My estimation is that his quality of life is very limited, but I am not in his shoes(slippers). I am agonizing over dental work that needs to be done. He has three crowns that have decay and need to be replaced before they abscess. I don't want him to have to suffer that pain, but the dentist told me three months ago that we should just watch it. I need to get him back in to the dentist, but I need help to get him there and that is not easy. There must be some good that comes from life's struggles.

Share this post


Link to post
Share on other sites

Genden69, it surely is a very, very difficult thing to decide to do, even if it may be obvious that it's the best step to take.  I can tell you from experiencing my Dad on hospice that if the hospice is a highly rated one with a good reputation, it can be handled with such care for the person on it and also for the caretaker and family and friends.  He was able to remain in his room at the assisted living facility he was already in, and they brought everything that was needed.  They met with me and explained everything, and they even had volunteers come in to sit with me in my Dad's room when I was feeling like I needed to talk with someone who had been through it.  The emotional part can be difficult, but this wonderful hospice (Gilchrist here in Maryland) knew every thing to help both the patient and the family.  My dad was kept as comfortable as possible, and they explained what he was most likely feeling, which was very comforting to me.  They also held at their main facility grief support groups.

 

Please keep us updated, as we will be thinking about you, and I'll be praying right now for both you and him.

1 person likes this

Share this post


Link to post
Share on other sites

I have had several experiences with hospice. My mother had cancer. My husbands mother and grandfather as well. They make you feel at peace as much as possible and they truly help you through it all. You will not be alone. I hope you really consider it keep in touch we are thinking of you.

Share this post


Link to post
Share on other sites

I understand hospice with cancer. Hospice specializes in medications to control pain to keep the patient comfortable. The MDS warned me to carefully check the rules because there are many. The hospice I interviewed told me that if he falls and injures himself, I am not allowed to call 911. I have to call them. They will send someone over to decide what to do. If he goes to the ER or hospital, they lose money. Hospice takes over the medications and they decide what he takes and when. They will take away his statin and his Northera which is a specialty drug for his orthostatic hypotension. Then his blood pressure will be so low that he won't be able to stand up. He will also not be allowed to see his family doctor or MDS. His care will be managed by nurses and aides. A lot to think about. Will the benefit be worth it? Has anyone had hospice for their Parkinson's loved one?

Share this post


Link to post
Share on other sites

Genden, Oh I am sorry you are going through this alone.  Okay, DON"T PANIC.

 

First: go to Medicare's Hospice page https://www.medicare.gov/what-medicare-covers/part-a/how-hospice-works.html

They also have a booklet https://www.medicare.gov/Pubs/pdf/02154.pdf

Look at page 9 of the booklet.  His Stain will be covered, it helps with a symptom, it is not an attempt to 'cure' him.

 

He is allowed to see any doctor he wants.  He is allowed to do many things.  You need to find another Hospice service than the one you are talking to.  They all are different, any hospice service that takes away his doctor and says they will decide what drugs is in it for the medicare dollars, not your husband.  Please research on the web Hospice in your area.

 

I had this exact same conversation with my friend's husband.  PSP is a PD Plus syndrome.  If your husband falls and hurts himself, yes, you need to call the hospice # and ask which ambulance you should call.  An accident is not an attempt to 'cure' him.  You also have the right to drop Hospice at anytime, and rejoin it.  You care for him, Hospice (properly done) also cares for him as a person.  There are some bad actors out there, but there are some wonderful organizations also.  If I can help with research, just send me a pm with your location and I would be happy to help find information for that area.

 

I am sending all the calm and good vibes I can to you and your husband.  Deep Breaths, my friend, you are not alone, and CANNOT be railroaded by anyone into any decision that you feel is against his interests.  Hospice (properly done) can be a blessing.  It is up to the individual family to decide the benefits.  I trust you, your husband trusts you; trust yourself that you will make the right decision for both of you.

6 people like this

Share this post


Link to post
Share on other sites

Genden,

I have been thinking of you often in the past week.  I hope things are okay, and you are still cherishing good moments with your spouse.  You have all the love and support people's thoughts can give you.

1 person likes this

Share this post


Link to post
Share on other sites

Thanks everyone. I have decided against hospice for now. DH has extreme orthostatic hypotension which requires a drug called. Northera to control. DH was in the study for the drug, then received it open label for a while, then when it was FDA approved and on the market, his MDS arranged for the pharmaceutical company to pay what his insurance would not cover. He needs the drug or he has no mobility and would have to be totally bedridden. He can still walk some. Upon my inquiry, hospice said if he went on hospice, he would no longer be able to get the drug and hospice said it would cost them $4000 a month and they would not cover it. It is good practice to do the requisite research before jumping into something. Hope this information helps someone else in their decision making.

3 people like this

Share this post


Link to post
Share on other sites

My understanding is Hospice takes over and until you are ready to relinquish all control of your loved ones to them  do think twice.  Their job is to make the passing go quick and comfortable.  They will not try and make them better because that's not what it's for.    I feel unless it is totally hopeless and you are ready to let go then do your homework like Genden.   I support your decision. Keep up the good work.  You know best.

1 person likes this

Share this post


Link to post
Share on other sites

I understand hospice with cancer. Hospice specializes in medications to control pain to keep the patient comfortable. The MDS warned me to carefully check the rules because there are many. The hospice I interviewed told me that if he falls and injures himself, I am not allowed to call 911. I have to call them. They will send someone over to decide what to do. If he goes to the ER or hospital, they lose money. Hospice takes over the medications and they decide what he takes and when. They will take away his statin and his Northera which is a specialty drug for his orthostatic hypotension. Then his blood pressure will be so low that he won't be able to stand up. He will also not be allowed to see his family doctor or MDS. His care will be managed by nurses and aides. A lot to think about. Will the benefit be worth it? Has anyone had hospice for their Parkinson's loved one?

I had our local hospice group set me up with nurses in my home after my colon surgery went completley to hell. Had spent 3 months in the hospital and was just tired of it. They setup an IV pump and tree by my bed with hydration and pain killers. Eventually, I pulled out of the worst of it and no longer needed their care.

 

The hospice group I used is part of the local hospital system - they didnt have any the restrictions you mentioned. I took all my necessary PD meds and could see my family doctor. Maybe each one is different.

2 people like this

Share this post


Link to post
Share on other sites

I had our local hospice group set me up with nurses in my home after my colon surgery went completley to hell. Had spent 3 months in the hospital and was just tired of it. They setup an IV pump and tree by my bed with hydration and pain killers. Eventually, I pulled out of the worst of it and no longer needed their care.

The hospice group I used is part of the local hospital system - they didnt have any the restrictions you mentioned. I took all my necessary PD meds and could see my family doctor. Maybe each one is different.

As I understand it, Hospice operates under Mecicare and Medicare establishes the rules. My DH would be able to take his regular PD Meds, but not the specialty med because of the cost. Perhaps you were able to see your own doctor because he had privileges at the hospital system that the hospice group was part of. It all comes down to rules and you have to know the rules and how they apply to your situation. I am happy hospice worked well for you.

Share this post


Link to post
Share on other sites

My friend was lucky that we live in a large city.  She had over 20 different hospice programs to chose from.  And yes, there was one Hospice program that said no drugs, and if she broke her arm nothing could be done until they came and 'evaluated' her lying on the floor, and she had to drop her own doctor.  She did not choose that one.  Every location is different.

Share this post


Link to post
Share on other sites

The hospice in my area is a non profit that was established by and supported through the local churches and donations ( you don't have to be of any faith to use their services though) they offer fewer services but also have none of these red tape restrictions and serve people with everything from cancer to MS who are still receiving treatment- as well as those at the end of life. I currently receive some services through them- no Medicare or any insurance involved. I went in explained my situation then signed a piece of paper saying that I had been honest in what I'd told them and understood that they were a non profit whose services are limited by donations and that should I need more than a certain amount of moneys worth of services a year they may not be able to provide them.

 

Like I said, my insurance doesn't know or care I'm using "hospice", and I'm also encouraged to seek help from other agencies as well. I don't know if there's something similar in you're area, but if you haven't done so already you might try looking into nonprofit hospices that don't participate in any insurance at all.

 

You are in my prayers

 

-FEISTY

Edited by Feisty Folder
1 person likes this

Share this post


Link to post
Share on other sites

Wow-don't like reading those restrictive practices that some hospice groups are setting up.  Yes, it sounds like they are "for profit" and not the patient centered treatment we want.  My dad was on palliative care first and then hospice with Kaiser's Medical.  We were never given these restrictive requirements.  Kaiser's is a non-profit-no stock holders to push for higher profits.  Please check into palliative care.  Palliative care is relatively unknown to the general public but can provide excellent services which your husband may need.  Palliative care is much more open ended and less restrictive-you can still have the drugs you need to continue your therapies.  Palliative care is set up for debilitating illnesses, not for end-of-life-care.  My dad was on palliative care before he moved to hospice care by the same nonprofit medical group-Kaiser's.  They came to the home to provide the needed services and could be called for medical advice.  If he needed services that required a hospital, they told us to bring him in.  It's patient centered, not bottom-line centered.  

Share this post


Link to post
Share on other sites

Thank you all for your information. Hospice agencies I have investigated are all for profit under Mecicare/insurance. I don't know about a nonprofit in my area, but I will continue to investigate. Thanks everyone for your information. I knew you would come through. As a caregiver, I am isolated. I only know of one neighbor and my brother who used hospice. Both agencies were for profit. My brother signed my SIL off of hospice. She had progressive supranuclear palsy and they refused to treat her UTI. We need to do our homework, but ironically, when the need comes, we often don't have the time or energy to do the research.

Share this post


Link to post
Share on other sites

I found a 3 year old new York times article discussing the sorts of problems you're facing when it comes to restrictive hospice requirements

 

http://mobile.nytimes.com/blogs/newoldage/2013/01/03/hospice-obstacles/?referer=

 

 

The article mentions a program offered by some hospices called "expanded care" or "concurrent care", hopefully those terms will assist you in your search.

 

The article also mentions how the hospice system needs overhauling, since the line between palliative care and treatment has become so blurred (your husbands meds are clearly a quality of life issue though). Getting rid of restrictive hospice rules seems like an excellent thing to write your Congress person about. Since CG are so busy it seems like a good project for us PWP who are still in early stages to take on. If I were to write my Congress person would it be alright with you for me to summarize your situation?

 

I hope you find the help you need soon.

 

Hang in there

 

-FEISTY

Share this post


Link to post
Share on other sites

I found a 3 year old new York times article discussing the sorts of problems you're facing when it comes to restrictive hospice requirements

 

http://mobile.nytimes.com/blogs/newoldage/2013/01/03/hospice-obstacles/?referer=

 

 

The article mentions a program offered by some hospices called "expanded care" or "concurrent care", hopefully those terms will assist you in your search.

 

The article also mentions how the hospice system needs overhauling, since the line between palliative care and treatment has become so blurred (your husbands meds are clearly a quality of life issue though). Getting rid of restrictive hospice rules seems like an excellent thing to write your Congress person about. Since CG are so busy it seems like a good project for us PWP who are still in early stages to take on. If I were to write my Congress person would it be alright with you for me to summarize your situation?

 

I hope you find the help you need soon.

 

Hang in there

 

-FEISTY

1 person likes this

Share this post


Link to post
Share on other sites

I found a 3 year old new York times article discussing the sorts of problems you're facing when it comes to restrictive hospice requirements

http://mobile.nytimes.com/blogs/newoldage/2013/01/03/hospice-obstacles/?referer=

The article mentions a program offered by some hospices called "expanded care" or "concurrent care", hopefully those terms will assist you in your search.

The article also mentions how the hospice system needs overhauling, since the line between palliative care and treatment has become so blurred (your husbands meds are clearly a quality of life issue though). Getting rid of restrictive hospice rules seems like an excellent thing to write your Congress person about. Since CG are so busy it seems like a good project for us PWP who are still in early stages to take on. If I were to write my Congress person would it be alright with you for me to summarize your situation?

I hope you find the help you need soon.

Hang in there

-FEISTY

e

 

Thank you. You certainly have my permission to cite my situation when writing to your congress person.

Share this post


Link to post
Share on other sites

Thank you for your information and kind thoughts. When they put DH on the scales today, it took two to do it, he only weighed 125 lbs with his jacket and hat on. I cried. The doctor showed me his chart. In January he weighed 156 lbs. Two months ago he weighed 135. It is a struggle to get him to eat. I try to temp him with all of his favorites. His dementia and psychosis is severe. My estimation is that his quality of life is very limited, but I am not in his shoes(slippers). I am agonizing over dental work that needs to be done. He has three crowns that have decay and need to be replaced before they abscess. I don't want him to have to suffer that pain, but the dentist told me three months ago that we should just watch it. I need to get him back in to the dentist, but I need help to get him there and that is not easy. There must be some good that comes from life's struggles.

Your story sounds so similar to mine.  My DH was dx with Parkinson's in 2006, then additionally with Lewy-Body Dementia in 2012.  By 2013 he was suffering from severe hallucinations and paranoia and increasing immobility, and was hospitalized for 6 weeks.  When he was discharged, he was not able to walk or lift him self, and to my utter disappointment he had to be placed into long-term nursing care. I started my daily vigil of helping him with all 3 meals every day of every week of every year, and spending as much additional time with him as I could.  The Parkinson's and dementia advanced relentlessly over the next 3 years.  He was given rehab, PT, multiple medicine changes, and excellent nursing care but nothing helped.  Last year in Oct. he was told by our Dentist, after losing several crowns, that he had several infected and abscessed teeth.  I made the heart-wrenching decision to have the oral surgeon pull the teeth damaged beyond repair, and he ended up losing 12 teeth including a front tooth.  In looking back, I have some regrets and maybe should have had the doctor try longer with the antibiotics to try to cure the infections because I didn't notice much improvement in his overall condition afterwards.  The oral surgery was very hard on him and me.  By January of this year, his Care Plan Committee recommended Hospice care.  And again I had to made another very difficult decision.  After family discussion, I chose a non-profit Hospice that came highly recommended and whom I had seen in action with other residents.  It was one of the best decisions I could have made.  I did have to choose between the nursing care center doctor and the Hospice doctor, choosing the latter.  But the cooperation between the doctors, nurses and CNA's of both teams was incredible and my husband received the most competent and compassionate care I could have ever hoped for.  I had the support of Hospice Counselors and a Chaplain.  Even though I was doing caregiving in a long-term care environment, I was totally worn out.  In the last months, I had to feed DH at every meal, hoping he would eat at least some pureed food which was necessary after losing so many teeth.  His weight loss continued.  He seemed to be suffering from pain, although he always insisted he was OK.  The Hospice doctor took him off of many of his previous medications, always asking my approval.  He was started on a low dose of morphine, which seemed to calm him more than anything else, and he had periods of rest and sleep.  Sadly, my Beloved passed away in July after a valiant battle against Parkinson's and dementia.  But I'll always have the consolation that I did everything I could to try to maintain some kind of quality of life for him to the end.  Hospice is now providing grief support which has also been very helpful to me.  Losing my Beloved is the hardest thing I've ever gone through, but somehow life must go on.  I hope my story will give you some thoughts and ideas.  As caregivers, we are strong and we are not alone.  My thoughts and prayers are with you.

Share this post


Link to post
Share on other sites

Is this not the worst nightmare for CGs?  My heart was pounding hard just reading this and what you have been going through while life goes on around us.  Why does it have to be like this?  Lane, you are so strong and I admire you for your strength and your willingness to go above and beyond for your DH.   I keep thinking of  that saying of God doesn't give you what you can't handle.   I don't know about that.   We all just do what we can and some will push beyond their limits because we can't let go.   My heart goes out to you and now you can finally rest. I know it certainly is not the ending you hoped for but  it is still finally over.   The emotional aftermath will take more time to heal I'm sure. 

Edited by miracleseeker

Share this post


Link to post
Share on other sites

I am so sorry for your loss. May you be comforted knowing the excellent care and love you showed your husband made a difference. Thoughts and prayers for you today.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now