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My dad has been in a SNF since February. He has Parkinson’s. Since that time we have seen him digress rapidly. He no longer can stand or even walk with a therapist. He has had a bad fall and is pretty much bedridden. His speech has digressed to mumbling and you can barely hear or understand him. Swallowing is also becoming an issue. The nurses have suggested we might want to consider hospice. Has anyone else had experience with hospice? What are the pros and cons? Is it a “death sentence”? When should you agree to put your loved one on hospice?

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This isn't not a death sentence. But, understand...hospice is for those who ARE not going to recover and continue living.
 
I got her doctor to recommend hospice once he was willing to admit that there was really nothing that was going to fix her problems...the surgery would have killed her, and nothing else was likely to help.   My Mom wanted to just be pain free.

The choice for me with my Mom  was to get the medical care she needed for real pain management. She could not swallow pills, and the doctors would not prescribe the level of pain killers she had to have (thinking they would be investigated for needless dispensing these drugs). 

Hospice was able to get on top of her pain, and keep her pain free for the remainder of her days. She was not going to get better...why let her remain in pain?
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Hurtbabygirl, so sorry you are going through this.

Note that one will pass on the same time table with or without Hospice. Hospice is there to help make that passing as pain free as possible which we would want for our love ones.

Both my parents used Hospice. My Mom was also a serious fall case, afterwards she couldn't remember how to walk or even stand, and the fall also accelerated Dementia into the last stage. There was absolutely nothing the doctors could do for my Mom. Mom just stopped eating as her body was no longer accepting food. My Mom had a peaceful transition.
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Hospice is not a death sentence. It’s important to understand that they do not prolong life, they prove comfort care. They don’t speed up the process. If a loved on goes on hospice, understand that it means the end of life-prolonging treatment, it means the patient (usually) isn’t going to recover. There is a booklet that hospice provides called “gone before my sight”, it’s written by a hospice nurse, Barbara Karnes and it explains the dying process and gives a general timeline of symptoms that occur in the months, days and final hours before death. I strongly suggest everyone read that booklet when considering hospice for a loved one. The booklet says one of the hardest things for families to accept is that the patient no longer needs food. As the digestive system shuts down, food is no longer needed and causes discomfort. I can attest to this, my MIL is at that point where her disgestive system is shut down and food causes discomfort. Her caregiver thinks it’s constipation causing discomfort and that she will die if she doesn’t eat but the sad reality is, her body can no longer digest the small amount of food she takes in. He cannot accept that she no longer needs food and that it will not keep her alive longer. The book says, and I agree with this—that food is no longer needed, a spiritual energy is needed and what will sustain the body from now on. Hospice will recommend you stop feeding the patient and it’s not because they are trying to speed up the process, it’s because their job is to provide comfort care. They will provide morphine for pain and Ativan for anxiety and both are also used to control breathing, if your loved one has difficult breathing a low dose will make them comfortable. Many people think these meds are a form of euthanasia but it’s simply not true.
I am so sorry you are going through this.
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I reacted with the same defensiveness when nurses first suggested hospice. I viewed it as you said, a death sentence. It is not, just a different way of care focusing on comfort rather than living long. We did it, and it was the best thing we did. So many resources were provided for free in terms of special chairs, extra nurses, social workers, personal aids, and the real benefit was we found out as a veteran in hospice, he got free care at an SNF. (had we knew that earlier, my mom would have saved many thousands more) Now after my dad passed, they offer free bereavement counseling to the family. By the time this is suggested, a LO is on a downward trajectory anyway and that is sad, but may as well make that as comforting and easy as possible.
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jeannegibbs May 2018
Thanks for taking the time to share your experience, Karsten.
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