Making the Call to Hospice

I finally called Hospice. 

My girlfriend and my cousin have both been gently urging me to do this for some time now.  I’m not sure why the call was so hard for me to finally make, but the simple truth is that I’ve been putting it off for several months now.

What Hospice Can Do

I had no idea how much I didn’t know about Hospice.  I’ve only ever thought of it as a place where we take our loved ones when they are dying.  But it’s so much more than that.  In just a few short days, I’ve learned a lot about what they can offer both in the area of short- or long-term palliative care, and the things they can do to help caregivers as well.

What Happened

First, I was visited by a social worker who discussed with me what the hospice program can offer both for patients who need comfort care and for their caregivers.  We talked about how mom is doing, and based on my mother’s current situation, she recommended that I consider a “soft” admission.  She said this means that for the next 4 to 6 weeks, they would monitor her condition closely to determine how she’s doing.  The social worker told me that if she seemed to be stable that we would shift to palliative care, and if her condition was deteriorating, we would stay on the hospice program.

Palliative Care

If mom goes to the palliative care option, this means that she’ll have regular visits from a nurse to check up on her condition and ensure that she is comfortable and safe.  This means that if there is pain or physical discomfort, we can address those requirements with either medications or therapies.  When we talk about comfort, we are looking not just at physical comfort but mental and emotional states as well.  If she is emotionally distressed or experiencing anxiety, these issues can also be addressed appropriately.  They also offer guidance on nutrition, home safety, and general care as needed.

With each check, if her condition appears to be deteriorating, they will assess if it is best to move her back into the hospice program.  If she’s stable, comfortable, and doing well, then we continue with palliative care.

Hospice Care

Hospice care includes all the benefits of palliative care plus much more.  The hospice care program is an amazing program; the people who are part of it have all been absolutely wonderful in their work with us.  Our social worker gave us a big magnetic sticker for the refrigerator that has the Hospice contact phone numbers with “Call Hospice First” written across it in big letters.  I’ve done this more than once, and I’m so grateful to have this resource.

Currently, I have a nurse visiting once a week during which mother is checked out, and we are able to talk.  I think having ready access to this level of expertise in caregiving is one of the very best things about being part of this program.  Yesterday, I talked with our nurse extensively on my concerns and to learn how I can best handle the new challenges that are arising all too quickly.

Twice a week, a Certified Nurse’s Assistant (CNA) comes out to offer care for mom.  This includes bathing, which is a true godsend.  I’ve been using bathing wipes and shampoo caps to see to mom’s hygiene – but a son can only do so much.  I clean up all but her private areas; I’ll hand her a wipe and ask her to clean as needed in the other areas.  A CNA is able to ensure that she’s appropriately clean everywhere and can check her closely with a trained medical eye to look for any areas of concern with skin or other issues.

She now has a new primary care physician who, as part of Hospice, will be looking to her comfort.  Mom gave up doctors some time back because of a bad experience with her previous primary care physician.  Her new doctor will no longer be prescribing handfuls of pills several times a day to try to keep her within statistical norms.  Now, her doctor will only be looking to see to her comfort and safety.

Caregiver Support

Hospice recognizes both the value of caregivers, and the needs of caregivers.  Caregiver fatigue is well understood, and they have a wonderful support program that includes counseling if you want it and offers both respite and more frequent breaks in your duties.

One of the first things the social worker encouraged me to do was to take advantage of the caregiver respite program.  This allows me to take mom to the local care center for up to 6 days and 5 nights, where they see to her comfort and safety.  I need this.  I need this badly.  I haven’t really had an actual break over the last two years, and we’re at the stage where leaving mom alone for even an hour is a potential risk – so I can’t even make a quick trip to the store without worry… and there has really been no “me” time for such a very long time. 

There is also a volunteer program, currently on hold due to the COVID-19 risks, where a volunteer can come out to site with your loved one for a couple of hours while you run errands, go shopping, or just take a walk in the park.

End of Life Support

This is huge.  When a loved one finally passes, it can be devastating enough, without having to deal with everything that goes along with such an event.  Hospice can offer a tremendous level of support through this time.

First, when a loved one in the Hospice program passes, aside from the family and friends you need to reach out to, there’s only one phone call to make… to Hospice.  They will come out and take care of everything for you, including working with your selected funeral home to see to final needs.  Not only this, they also offer counseling and grief support at many levels, including counseling with a non-denominational chaplain if needed.

What About Costs?

The Medicare system recognizes the value of caregivers enough to cover these options.  Hospice in-home care is covered by Medicare, as well as respite stays. 

In Closing

If you’ve been thinking about calling Hospice, my advice (do what I say, not what I do…) is that you don’t procrastinate… just make the call.  Knowing your options is so much better than not knowing your options.  After understanding the program, you may choose not to participate, but at least you’ll have a clearer understanding of resources that are available to you.  I’m so very, very glad I called.