Running Out Of Time

A few days ago I posted a message regarding my mom only having 6 weeks to live.  We are now losing days fast.  Her doctor has advised us to bring Hospice in now. My mom is very coherent and refuses to allow Hospice into our home.  She feels that Hospice is only there to complete the death process.  Today her home health nurse stopped in and said her vitals are starting to make that "bad" turn.  Mom is not in much pain, but the swelling (ascites) in her stomach, legs, and feet has progressed at a rapid pace.  Her blood pressure has shot up, dryness of mouth is constant, cough, and heavy breathing is existing now.  From any experience, is there anyone out there that can tell me what to expect next, and is her death approaching very soon?  How soon?  Please elaborate if anyone has used Hospice and how was it for you?  I can only keep her comfortable so much.  My heart breaks watching her go through this.  Today I sat thinking if there was anything I need to say to her before she passes.  I want to make sure she knows how much I love her and how much I appreciate her in my life.  Any advice on this, I would appreciate.

Dear Anthony,

It is very hard to say how long your mom has, how rapidly she will decline. (Some people are tough - they hang on for a long time even after their body systems start to shut down.) But if the dr is recommending you bring in Hospice now, you probably are safe in assuming that at the very least he is expecting you will be needing a lot more assistance with her care, and quite soon.  

It was my experience in nursing  that when people reached this point in their illness, they could be very self-centered.   Sometimes it seemed their struggle had them so internally focused that they really had difficulty seeing how the situation must be for their caregivers, and many still had a large dose of denial clouding their judgement, too.  (Not intending to be unkind in saying these things - just realistic.)

For the sake of your mom's well-being, and your physical and emotional health, you may need to try to help her see that Hospice is not just about dying, but also about living -  with dignity and as trouble free as possible until the disease process can no longer be held at bay. And that the decision to ask for more help is not just about how she feels, but also about what YOU need.  The home health people can support you in this discussion, but it's best if the person who tells her that YOU need more help is you.

So, when you talk to her, tell her the same things you told us.  Tell her that you love her, and appreciate her, and that you always will. Tell her you want her in your life for as long as possible, but that you also know she is not well, and you want her to be as  comfortable as possible.  Reassure her that YOU will be ok, should the day come that she is no longer here to watch out for you.  (Moms need to know that they've done a good job in preparing their children for the hard stuff in life.)

Most of all, you have to tell her that YOU can only do so much, and you need more help to provide her with the best care you can possibly give her. Be firm - don't feel bad about telling her what YOU need. A broken caregiver is no good to anyone, but she honestly may not be able to see that YOU need more help, unless someone tells her it is so,

Sometimes it takes a gentle boost to allow a failing parent to still have a say in their life and also demonstrate caring for their family. Tell her that is what Hospice is all about: helping people to live well, while they still can.

I wish you and your  mom and family the best. And remember, take care of yourself as well as taking care of her.

sincerely, tre

tre... thank you,thank you ,for your reply here,the words you sent are exactly what is needed ,the care giver taking care of them selves is as important as the family member who is ill.Hospice helped me so much and allowed mom to live her last days in her home with her family that she loved so much,

karen

On 8/8/2008 mamasfriend wrote:

tre... thank you,thank you ,for your reply here,the words you sent are exactly what is needed ,the care giver taking care of them selves is as important as the family member who is ill.Hospice helped me so much and allowed mom to live her last days in her home with her family that she loved so much,

karen

Hi Karen

I didn't see your original posting but I would have just agreed with everything Tre so eloquently said.  We had Hospice when my husband was terminally ill and I cannot say enough wonderful things about the organization.  About the only thing I could add to Tre's comments were how they all treated Jack as if he were a living human being (as strange as that sounds).  All of our friends and many family members remained at bay almost as if they couldn't deal with his impending death so they chose not to see him at all.  His Hospice nurse would stop by just to chat and they would laugh and joke - something friends were afraid to do with him.  Sarge (as Jack lovingly called his nurse) was there through the entire time - lending support to me and helping Jack to enjoy his final days.  Sarge (N. Ft. Myers FL) - wherever you are - Jack and I both loved and appreciated you beyond what words can express.

Diana 

Taking good care of the caregiver is one of the lessons I learned through life's school of hard knocks!  I just wish I hadn't learned it so late...

I'm glad to be able to use my experience to hopefully help someone else out.

Thank you for sharing that hospice helped with your mom.  Trying to help a loved one through their cancer ordeal can be just devastating - thank goodness for organizations like Hospice, home health, support groups, etc.  I just wish we could get the word out sooner, so that people could spend more quality time with their loved ones, and get less burned out in the process.  Plus the advantage to the patient....

Take care, Tre