Hospice At Home Care: Hints For the Caregiver

First of all let me preface this post by saying:

  • Begin Disclaimer
  • I am NOT a Doctor.
  • I am NOT a Nurse.
  • I am NOT suggesting that anything I say will definitely work for you.
  • I do NOT pretend to know anything better than the wonderful Hospice staff that is working with you now.
  • I am NOT endorsing any product or service for any reason other than my own opinion.
  • End of Disclaimer

This post is for the family member or friend who had a regular 9-5 job and all of a sudden must become a Nurse, Counselor and Janitor overnight, in order to care for a terminally ill loved one.  First of all one note: HOSPICE IS A WONDERFUL RESOURCE; they do not do it all however.  That is where you must take over.  That is where I had to learn a lot of helpful tricks to make it through each day.  I am sharing these hints that helped me and I hope that it will help someone else.

I had the honor and privilege to be one of the primary caretakers of a dying loved one.  During this process, I learned a lot of lessons and figured out how to do things out of necessity.  The Hospice Nurses were indeed helpful but not even they can predict exactly what will happen.  A lot of things you just figure out on your own.  It is almost like bringing home a new baby.  The hospital can give you a few pointers but you learn how by doing.  Caring for a dying loved one is the same process, in reverse.

When we entered Hospice care, we were given a really helpful book called, Gone From My Sight’ by Barbara Karnes.  It was a great reference and gave a clear outline on what to expect.  I found more information and deeper explanations when I watched her video however. Barbara Karnes presents the concepts of the end of living.  It is a wonderful video to share with the entire family.  She does a great job at explaining death and the process that all living things go through at the end of life.  I have included a clip of the video from youtube.com here:

No one likes to discuss death but when you are caring for someone who is dying in your home, you cannot talk about much else.  Their care becomes the top priority.  We were always caring for her, preparing to care for her or pushing a pain pump every 15 minutes. Our Hospice Nurses only visited a couple times a week unless I called for them.  The aide who came gave her a bed bath and helped us change the bed but only did so twice a week.  The rest of the time, we were on our own.

Tip #1: Dying To Get Home
If you watched the video of Barbara Karnes explaining the process of death, you know that your loved one is dying and is NOT at home to heal. This bears repeating because my natural tendency is to want to help her get better. Remember this: they are not getting better. No matter what you do, they will not get better. It was a shock to discover bedsores when she arrived and my first thought was,”what can I do to make this better?” I don’t know why I was shocked. She was NOT mistreated. She had limited movement for over a month before she came home. She was dying and her body was responding.

My whole role was to support her in the process of her transition. THAT is hard to do! When I see hurting I want to comfort. When I counted the days it had been since she had last eaten, I wanted to feed her. All I can do is understand as much as I can and support her. I learned that her body no longer works correctly. She was full of infection but never ran a fever. She didn’t want to eat or drink. It helped me to remember that when I wanted to feed her but couldn’t, God was. When I couldn’t help her, she was being helped. My new mantra became, “God help me help you.”

Tip #2: Get Help!
No one can care for anyone 24/7.  I couldn’t care for my loved one alone.  She was not a small child and I could not lift her alone.  I had to have another set of hands almost all the time.  I also needed to continue to be a Mom to my children, cook, clean and sleep sometime.  I was lucky and did this as part of a team.  WE needed a break from time to time though.  So even though one of us would take the days and the other the nights, we still needed someone to come in from time to time.  Hospice also offers Respite Care  but don’t count on this being your back up plan.  It had to be scheduled and we didn’t know if it would be approved or not.

Tip #3: Dying Stinks.
Seriously. It stinks badly. Bedsores are the worst. Let’s face facts, it is decay. Very quickly, I found that the strongest sprays did not work. I had to get creative. Open the windows if you can and keep the dressings changed often. It was 97 degrees outside, so opening the windows was out of the question. The best way I found to take care of the smell was frequent changes of the bedding and dressings. I also took the soiled linens and dressings outside immediately. The sheets then had a chance to air out before going in the washing machine and I could put the dressings in a bag, seal it and dispose of it, all outside.

The most helpful tool in the fight against the smell was 2 bowls of white vinegar placed under the bed. One at the head and one at the foot. The vinegar needs to be in a ceramic bowl. Plastic will absorb the odor of both the stink and the vinegar. I changed it out every other day and washed the bowls before adding new vinegar. I kept the bowls in a dish (in case the bowl got turned over) and under the bed to keep from kicking it.

Once the dressing and bedding changes were over, even the vinegar needed help. A friend of mine introduced me to a wonderful spray that has no odor itself and does a GREAT job in helping to eliminate the smell. Unscented Biological Odor Eliminator  This little bottle did wonders and it took only a few sprays to neutralize the odor. I also found a spray that adds a wonderful light scent to the air and changed the “feel” of the room. I don’t begin to know how, but it changed the energy of the room and after I sprayed it a couple of times, the air felt and smelled lighter. Full Spectrum Energy Healing Mist

Tip #4: Diaper Drama
I don’t care if you are 9 months or 90, diapers are a pain in the butt. They still leak! My loved one had horrible bedsores and the diapers wouldn’t hold the discharge and it also kept the liquid too close to her skin. The Hospice Nurse suggested using maxi pads INSIDE the diaper. It works! I took 4-5 maxi pads, removed the covering over the tape and pressed them inside the diaper, covering the entire backside. It offered her more of a cushion over the bedsore, collected the discharge and pulled the liquid away from the skin. She had a catheter so I didn’t have to worry about the urine but I would have added more maxi pads to take care of that issue.

It was also suggested that sometimes finely crushing several aspirin and placing them on the bedsores would help with the smell. I do not know if it works but we did it anyway. We would crush 6 or so aspirin and sprinkle the diaper with it like baby powder.

The Aide instructed us to roll her onto the diaper but I quickly figured out that because of the location of her bedsores, this would not work. We ended up changing her like you do an infant. We lowered the head of the bed and I slid it under her while my assistant lifted her by the knees.

Tip #5: It’s All About Coverage
Hospice provided all the chucks, diapers and maxi pads we needed. They also brought over several 6×6 gauze pads to cover the bedsores that had formed on her legs. They were located up under her buttocks but the diaper wouldn’t cover them. The bandages also became full quickly. So I had to figure out a new way.

An Ace bandage wouldn’t cover the sores and they were located close to the center of the body, where no one wants a lot of tape. So I came up with the idea of using the maxi pads AND the gauze pads together.

Any 6×6 gauze pad with adhesive should work.

Fold back the covering halfway exposing the tape and pad.

Fold back the other side to expose
the middle of the pad.





Rip off the middle of the strip so that the tape on the ends are still covered.

Attach the sticky side of the pad
to the gauze.

Side view. You are now ready to expose the tape on the gauze and place.

This trick allowed me to once again, cover the wound, add a layer of padding without added pressure, keep it in place and pull the liquid away from the skin.

My number one resource was the Hospice staff. They do this everyday and were always ready to help with knowledge of their experience. Only we could decide what was the best way and that is always by trial and error. I will share more of what I learned in a follow up post.

Let me know what worked for you. Add additional tips and hints.

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