“I’d like to put your mother on hospice”, the doctor said.  What?! My mother’s not dying. I said silently, but replied “Why do you want to put her on Hospice?  “ “Her assisted living facility calls me whenever there is a problem.  I want to try some new medication with her and see if it helps. If you agree I will have someone call you and they can set up an appointment to talk with you.”  “OK”, I said. “I want to find out more about it first.”

I had called the doctor’s office after I had made an unsuccessful attempt to get my mother’s test results from the hospital.  I thought they could talk to the hospital and get them to release the documents to me. Imagine my surprise when the doctor came on the line!   From what she said it sounded like she was getting tired of receiving calls from Atria reporting my mother’s recalcitrant and hallucinatory ways. She wanted to try something that might help her.  I received a phone call that that same afternoon from the hospice and set up an appointment for the next Friday, hoping my sister could come too.  I did not want to make a decision like this by myself.

At this point I had no real understanding of what being under “hospice” care meant.  I thought it was a group of volunteers who came to your house to assist and help the family at the very end of a person’s life.  I thought a week or a month before at the most. I did not realize it was a business that involved many people who worked as a team.

We were met that Friday afternoon by a young hispanic man who introduced himself as a chaplain.  I could just picture how his services were used by the hospice.  This sounded serious.  He explained to us that just because a person was under hospice care did not mean they were expected to die soon.  A person who qualified for hospice was someone who needed extra care and was not expected to recover from their disease or condition.  Thinking that any extra help my mother could get would be beneficial, my sister and I agreed to the care.  First she would need to qualify, though.

That afternoon when my sister was visiting with Mom in her room, a large, brusque nurse came to interview my mother to see if she qualified.  You could see how this was going to go! ”How do you feel?” she asked my mother to which she replied, “Fine.”  Who’s the president?”  “Obama”, my mother said.  “You don’t qualify.”  the nurse said and left.  An hour later I received a call from her confirming that she indeed did not qualify.   But an hour later I got another call.  “I talked with the doctor.  She said to qualify your mother.”

The next day I was called by the hospice social worker.  She began by saying that she had visited my mother and had enjoyed talking with her.  Then she asked what plans we had for her burial/cremation and if we needed help to set up a plan.  “My mother has a plot and it is paid for,”  I said a bit peeved.  “She is going to be buried on top of my father.”  This was something I did not want to picture just then.  I am not one to  dwell on the body of a person after they are gone, and therefore am not a regular grave visitor.  My father has been gone for 12 years.  His skeletal remains are in the ground, but his essence or ‘spirit ‘ is not.  His memories are what are important to me and so it will be with my mother.  “My mother is not dying,”  I said. “Yes, but it is good to plan ahead.  Does your mother have a preplanned service?”  “I don’t think we need to discuss this right now”, I said.  “All right”, she said, finally getting the point.  “I just want to be of help.”

I got very busy the next week and a half and did not visit my mother.  I did not get any calls from Atria and was reassured that the Hospice was also checking on her.  What happened during the next few weeks made realize all was not fine.


3 responses »

  1. Kathy, this just gets more and more shocking, compelling, heartbreaking, and now, scary. Thank you for sharing your story with us. Know that we are with you. Is it morbid for me to say I am on tenterhooks for the next installment?
    I recently heard that there is a movement afoot in the medical industry to create a different form of care for the very fragile elderly. These people are not necessarily dying, any more than any of us, but rather than readmit them to the hospital over and over again for every little thing that can go wrong with that aged a body, teams are formed under the coordination of one medical professional to administer all kinds of home care to the patient. In your mom’s case, her home is the care facility. Maybe that’s what they’re talking about, although it was never called hospice in the article I read, so maybe they are two different things.
    Hang in there.

  2. I so empathize with you, Kathy. Thankfully you have compatible siblings with whom you can make decisions. Such a tough spot! Sounds like you handled insensitive, possibly over-busy people very well so far. I’m awaiting your next post.

    I sat with a hospice nurse at a wedding (of all places) and learned helpful information that I posted on my blog, Help! Aging Parents. It may be after the fact, but I’m adding the link: http://wp.me/pGfkw-22X and if it’s helpful, I’m glad. I also posted about the difference between Hospice and Palliative Care that might be appropriate. In any event, know that I wish you, your mom and siblings well.

    • Thank you, Susan for some great references on hospice. It really gives a clearer picture of what they can do. I think more people, like me, need to be educated about this. I will certainly refer to them in my next post.

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