Why do I now feel guilty about calling in hospice?

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My husband died in march he had Alzheimer's and Parkinson's my one daughter has said that hospice starved him to death. That really hurts me and makes me feel I was wrong.

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You were not wrong. Your daughter is suffering from grief and needs to blame someone, so she's putting the blame on you. I'd suggest that you both attend the grief counseling support groups that most hospices offer for up to 13 months after a death. You'll find out that they do not starve people. They stop giving sustenance when the body can no longer properly use food and feeding would simply stress the body. If it's even absorbed because of tube feeding, it just prolongs life to enough to keep the person breathing. You were compassionate toward your husband who was dying by not dragging out the procedure. Try to understand your daughter's grief and get the support you need through hospice. You can also seek professional counseling separately. Just know that what you did was allow him to die naturally with dignity rather than prolonging artificial life.
Take care,
Carol
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Just to add my voice to the others here. Based on your husband's diagnoses, hospice care was likely the best choice for both of you. Near the end of life, people with advanced Alzheimer's disease stop eating, and so the decision not to start tube feeding your husband was perfectly in line with this course. It is how the body shuts itself down and, from my understanding, does not cause suffering in people in the final stages of life.

I do not want to market my book, "Handbook for Mortals: Guidance for People Facing Serious Illness," but you can read it for free online. We devote an entire chapter to this issue, of deciding not to pursue life-prolonging treatments.

I agree, your daughter may be using this as a way to express her own grief and sadness. Families can really be torn apart by their experiences near the end of life. Your hospice team is likely to offer some sort of bereavement counseling. Perhaps you could attend a few sessions, for your own peace of mind, and for some suggestions on how to overcome this issue with your daughter and preserve your relationship with her.
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Momobrien, it's called Obamacare, and how these once vibrant people are viewed as "has beens" or "cast-a-ways". Most people do not understand what is going on in our society, nor have a clue as to so many benefits that Medicare once paid...that are now being eliminated, systematically eliminated. And the hospitals, re-hab facilities, are all effected. Medical facilities are closing down, and employees are being let go. The Govt. has a cash crunch, but the politicians all have the best benefits on planet earth. Gee, wonder how that all works.

And for all of these people that are elderly, that helped to build this country...(the WWII and other veterans) that fought and died for this country...to see how their peers and other elderly are now being treated? There are always abuses within systems, but everyone needs to get educated and look at the system..Obamacare, and where it is headed. There are some 15 million "UNPAID" caregivers for Alzheimer's people. That is 15 MILLION UNPAID CAREGIVERS at an economic cost of about $200 BILLION. Where would these people be if not for these caregivers? I have a few suggestions; a) convert all of the Presidential libraries into care facilities for starters..and stop building them until we get our debt under control b) ask all the Govt people with the best health insurance to kick in and help the elderly c)contact your congressman or women and State Senators to voice your outrage.

Hospice provides, by and large, a great and valuable service. Yes, there is a great abuse from all types of healthcare providers, and abuse will never be completely eliminated. However, we can start with basics, and to help the elderly pass on with dignity and respect.

And, Momobrien, my heart goes out to you. You have to try and call/contact people that can give you some help. You are going to need help. Hang in there the best you can. My thoughts are with you. Marco40.
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Your Husband had to be Terminal to have Hospice in the first place . With 6 months to live. My Daddy ( a Doctor himself for 31 year ) was gifted by Hospice. Each 3 months you and your case are looked at , very closely. Then given another 3 months. My Daddy was given
nine months of this Gift called Hospice. Its end of life care and they
are the BEST at what they do . They give palliative care ( end of Life Care)
They do not starve a patient. When my daddy was on the unit here in Las Vegas they would give him anything he wanted. Most of the time it was a bowl of cereal with very COLD MILK. We only have a 12 bed unit with a turn around 5 days and if you do not die you go back to where you were once your medially cleared ( as in symptoms managed). They adored my Daddy ( plus he was a doctor himself ) so they extended his stays . They will always hold a special place in my heart. The men and woman that do this at home care or on the unit are made of something beyond human. I have seen their wings many-,many times. They were wonderful to my Daddy and our family. When a loved one dies, you always want to blame. Your daughter is going through the normal stages of grief. Time is her friend. I lost my Beloved Cut Man ( my daddy ) as I liked to call him always in my corner for 49 years 9 months ago. I still
have very-very bad days. Plus now my Mummy has had to be put in a group home for ALZ.. So I 've lost both my parents in less than a years time. My Mummy is still alive ( but she is not the Mummy who raised me anymore and never will be again).
I'm not looking forward to Fathers day this year at all. It was a honor
to be his Daughter for 49 years. I like to say I will love my Daddy forever and 1 day.

Your Daughter needs a support group or to heal from this pain of losing her Daddy in her own time and way .

Prayer's to you both.
Please don't ever think
Badly of Hospice
, they are a GIFT to the dying and we so need them.
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Think about alternatives to hospice. Could he have been cared for as well without them? How about if he had been in the hospital instead?

My father, age 85, had been accepted to go to a hospice facility but the hospital kept making excuses why he couldn't be released. As a result he wasn't given suitable medications to make him comfortable and passed in an extremely agitated state. That was over nine years ago and it still breaks my heart to think about it.

You did the right thing and your conviction of that should strengthen you in the face of your daughter's irrational emotions. Please get grief counseling or go to a support group, whether your daughter joins you or not. Our local hospice offers free individual counseling which I used to great benefit after Dad died.

You each need to process your sorrow in ways that work for you, and for however long it takes. Perhpas your daughter is not ready to accept help. Bless and comfort her and at the same time protect your own fragile state. May you remain in touch with the source of everlasting peace within us all.
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First, I send my condolences to you. You are still grieving it sounds like, and you are going to rehash all the "could have done this" scenarios in your head. Let everything go for now, and concentrate on your own healing process. It will take as long as you take to grieve and do not let anyone try to rush you. Be strong for yourself, and know whatever was done, was done for his best.
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Thank you, Marco40. I just got a call from hospice advising that my 68 Y.O. husband (young onset AD) is being allowed to stay in hospice "for now". He was re-evaluated this week and the nurse practitioner said he definitely qualifies - Stage 7D. Apparently, Medicare is already backing off the exclusion of dementia (AD) w/o a co-morbidity. But who knows. This hasn't even been published yet. But "failure to thrive" is no longer a diagnosis that will allow someone to enter hospice, even though all terminally people fail to thrive in some manner.
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Gabbie - I'm so sorry that your daughter is making this situation worse for you. I think the others are right - she's angry and needs someone to last out at. I'm assuming by her thinking he starved to death that the issue is that he did not have a feeding tube placed. Hospice is not there to make end of life patients struggle and suffer. Their goal is to keep them comfortable and help them maintain as much quality of life as they can while they can. A feeding tube for someone with a disease or condition that could improve is without question. That patient would not be one who would be in hospice. A feeding tube for someone going through normal end of life stages - no longer wanting to eat or drink - is only going to prolong the inevitable. It sounds like your husband was at that inevitable stage and, feeding tube or not, would have continued down that path. Again I'm sorry that you are dealing with her blaming you while you are deep in your own grief. Stay strong and remember the good times with your husband. Hugs, Kuli
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this site has helped me so much in the last year. Thank You so much I know that my daughter is grieving and would not hurt me on purpose but she keeps bringing it up and when I get upset she will say she does not mean it was my fault. but GOD IT hurts.
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I'm sure you have some hidden self-blame (for lack of a better word) of your own, too, gabbie...it would be nearly impossible to escape from such a harrowing experience emotionally unscathed.

And that is something that, like you said, will take time. But it will get better, I know it will. It has to...time heals all wounds but leaves the love and the good stuff behind so that you aren't left with nothing after you've worked through all your grief.

GOD bless you and your daughter...I'm sure you two will come out stronger in the end from all of this.
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