Why Caregivers Shouldn't Feel Guilty About Calling Hospice

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A billboard in my city carries a simple message: "Most families say, "Why did we wait so long to call hospice?"

When I talk with our local hospice folks, they say that is the message they hear most often. Yet, I understand why people do wait.

Calling in hospice for the care of an elderly parent or other a loved one means you need to come to terms, on all levels, with the idea that this person is dying.

The person who is dying needs to come to terms with this issue as well, however, from my experience, it's the family who is most reluctant to accept a diagnosis that the disease is terminal.

Accepting that our own or a loved one's life is limited to a few months, weeks or days is gut-wrenching. However, when we do get to the stage where we accept that nothing more can be done to extend their lives, or at least extend their lives without any quality of life, we are finally in a position to help.

Calling Hospice Means Taking Action

We can stop wringing our hands and feeling helpless and we can decide that we will do whatever we can to help our loved one have some quality of life for whatever time he or she has left.

We can rally the troops and call hospice. My mother had to cope with a great deal of pain during her last years. Sometimes she would look at me and say, "Can't you just give me a little black pill?" I'd smile tearfully and say, "No, Mom. I can't. But I'll do everything I can to make sure you are as comfortable as possible."

Mom was in an excellent nursing home at the time. However, they could only do so much with pain control without overstepping their boundaries. After the doctor in charge decided that Mom had only weeks to live, he finally gave permission for us to call in the local hospice.

 
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  •  Comments 1 to 10 of 15 
 
 

This is what really irks me about the whole Hospice situation. Why do we have to wait until we get "permission". if I had it all to do over again, I would have called Hospice so much sooner. In order to admit her to hospice care, my mother only had to be diagnosed with an "Adult failure to thrive" condition. I don't think enough people are aware of this. Also, many Hospice organizations also provide palliative care which can be so helpful long before a person is on the verge of dying. No one is telling the caregivers these things. it is so important to get the word out so that families can get the services and support they need desperately at the end of life.

 
 

anonymous13319

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Apr 25, 2010

Despr: thank you for this information...it would be a shame for others to go through what you did with your mother. You are kind to share this with us.

 
 

zumbakat

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May 16, 2010

However, with hospice care, I've been told the person must have a DNR and no treatment such as radiation can be given.

 
 

oliviajr

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May 23, 2010

My mother has dementia along with a whole list of other stuff. I have talked to her PA but he says she is not ready for hospice. When do you know because I don't know how much more time my mom has. It could be 1 day or 5 yrs. And can you get in home hospice care.

 
 

pooh4292

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May 25, 2010

My grandmother's DNR was optional, and we chose to enact it, and she would not survive any measures to save her life anyway, nor did she want to go through what it would take if the need arose. I dont think hospice means DNR is mandatory, as a matter of fact, DNR's can be revoked at any time, orally even.
As far as when it ws time for nana to receive hospice care, after she recovered from her broken hip (as much as possible), they focused on her lung problems, which were more serious than we could've ever imagined, she was unable to do progress in pt as medicare requires becaue her lungs wouldnt do the work required...after 2 hospitalizations and the dr seeing nana decline along with referral from the home care that was her rehab team, she placed into hospice care, in my home, immediately, and they really jumped in with both feet. They provide all care here, that is their purpose to make the patient comfortable so they can live out their final stage of life out of the hospital. I dont even take nana to dr's appts, the hospice nurses, doctor and our family doctor work together as a team and take care of her needs that way. They're great. Even has an aide who comes and bathes her, a social worker and a chaplain. They have volunteers too, to give me a break, but she wont have any of that. Anyway, that's my experience before and during hospice care so far. Hope it was helpful, and I took a couple of weeks between pt suggesting it before i asked the dr what he thought, i researched what hospice means, and then talked to the dr. Best of luck to you.

 
 

oliviajr

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May 25, 2010

Thank you. When my mom goes into the hospital I do a DNR on her because she would not make it thru it either. She had a hip replacement last July so I know what you mean there. The last time I took my mom to the er was for a GI bleed and that is when the doctor at the hospital talked to me about hospice,so on her next next doctor doctor appt. I talked to him about it and he said she was not ready that she was not going to die in the next 3 to 6 months. So who do you trust hospital or her regular doctor. I have found I think a wonderful hospice center that I think will come to my house.

 
 

pooh4292

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May 25, 2010

i would notify the hospice center you found and have them do an evaluation...

 
 

Bobbi

Give a Hug

May 25, 2010

If anyone has questions about Hospice, all they usually have to do is pick up the phone and call them. Ask questions, lots and lots of questions. If the time is not right, then at least you have information in hand. If the time is right, then you can have services begin. I personally cannot sing the praises of Hospice enough. I agree with the above, having a DNR does not mean that you cannot change your mind....at any time. Most people who enter Hospice do not want life prolonging measures.

 
 

oliviajr

Give a Hug

May 25, 2010

Thank ya'll so much I will call and atleast talk with them and go from there.

 
 

Eve

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Jun 3, 2010

My father has alzheimers, in feb. 2010 had a massive stroke. He is unable to speak, move, incontinent, and has to have all his food pureed. Then I need to feed him. He is in my home and I am his caretaker. He is also 90 years old. He has had infection after infection, sleeps 90% of the day, as of late hardly eats or drinks. Vital signs are erratic, just a mess. We had a home health agency when there time was up we requested in home hospice care. My question is how do you know if your parent needs hospice? or should he go back to Health Care.

 
  •  Comments 1 to 10 of 15 

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