Hospice, Crying ,and Sleeping                By Lori La Bey

Here are some comments and questions about hospice and dealing with someone who can’t communicate any more, that came from one of our readers Michelle.  I thought many of you may be wondering about the same things so decided to make our conversation a post.

Good morning Lori…Hope all is well with you.

Spoke with my mom’s hospice nurse yesterday and just mentioned how my mom cries. She explained to me that sometimes this may be her way of acknowledging you. Do you find that to be true? I thought perhaps that she may be in pain, but she told me they have a way of noticing if that is so. She will be assessed next month to see if she will continue with the hospice care. She said if she continues to have weight loss and not eating well…that she will be able to have the hospice care. As weird as this sounds, I hope she will continue to be eligible for their care.

The nurse also mentioned that her sleeping is normal. She seems to always be asleep whenever I call the nursing facility. I thought they were giving her meds to make her sleep, but she said that is not the case. She said that in the final stages sleeping a lot is normal. Do you find that to be the case?

I plan on visiting with my mom this weekend. Just to connect again and touch. Can’t wait

Take care Lori and have a wonderful day

 Hi Michelle,

 It’s good to hear from you.  Sorry your Hubby is sick.  Hopefully he is not a whiner.  LOL No really, I hope he doesn’t have H1N1, but if he usually doesn’t stay home you know he is feeling pretty bad.  Maybe some good chicken noodle soup will perk him up and he’ll be up and running soon.

 You asked a couple of question.

 Let me address the first question on crying.  Here I have to agree with Hospice.  I have found their cries are different for pain, then when acknowledging someone around them.  As I say that I’m trying to figure out how I know that.  I guess I look at their eyes, mouth, facial expressions, and body movement in general to tell me.  Do their eyes look soft and calm or fearful or painful?   Does their mouth look peaceful, smiling, or is it unaffected vs. twisted and tight.    If they start to twist their face, or body; or twitch I find this is usually a pain situation. 

Bottom-line, if I’m still not sure I pray for guidance and something usually comes to me.  It makes me feel calm and knowing.  It maybe a voice I hear whisper in my mind, or just a gut feeling that settles with me to guide me in how to handle their reaction.

As for your second question on sleeping, I too agree with hospice.  I have found sleeping in very typical.  I find I look for signs of frustration to tell me if things are not in sync.  I look for those facial signs, the eyes, mouth, the body movements and sounds.   I find with my Mother she is perfectly content being in bed.  In the earlier stages would be upset and not ready to go to bed.  She was uncomfortable.  This is not the case anymore.  As long as she is content, peaceful, and happy; I’m ok with it.

 I think part of how I got to this point is I now accept who she is today.  I no longer feel the need to have my “Old Mom.”  I’ve let that image go in a sense.  I remember what she was like, but have accepted that imagine as part of the past.  I try to enjoy her as she is now, even if that means she is tired or non-responsive, compared to how she used to be.   I have learned to look at the subtle signs she gives me.  I have learned to connect with her on a deeper level.  One I did not know existed prior to her disease.

 You also talked of hoping your Mom remains on hospice.  I totally understand.  My Mom was on hospice and then was taken off because she gained weight and didn’t qualify any more.  Mom had been losing weights for about the last year up until hospice started.  It was a double edge sword.  Even though you hate to have someone on hospice because you know it’s toward the end of their life, you still want them to have as many services to keep them comfortable and to assist in providing a wonderful quality of life.  It’s a mixed bag.  For our family we will most likely have to go through the process of signing Mom up at another time for hospice.

 I hope these answers help you when you are connecting with your Mother.  Have a great visit with your Mom.  Let me know how it goes.

 Lori