When a Loved One Dies: What to Do Before & After, Part 1
My 97-year-old father died on January 4, 2017. If you regularly follow this blog, you already know quite a bit about his struggles to stay alive the past two years. On most days, he soldiered bravely on, saying his goal was to “make it to 100!” But after Thanksgiving, he began a steady decline, making it more and more difficult for him to eat, breathe and get around. He frequently said “I’m done!” and “Just send me to the Other Side.” He also said he knew “We don’t get to choose when we go!”
Knowing he had lost the will to live, and as the family member with the POA over his care, I had some difficult decisions to make. The senior care center where he lived helped me connect with a Dr. who made “house calls” and also worked with a Hospice provider. Once your loved one is on hospice care, a Dr. will be part of the team, but because Hospice would stop Dad’s diabetic care, which he was getting through a home care agency, I put off switching immediately from Home Care to Hospice.
Dad, the doctor and I sat together and updated Dad’s Care Provisions. Dad was adamant that there would be “no more hospitals,” so we added that to DNR and “no extreme measures,” along with a provision for no antibiotics. Dad was highly prone to aspirational pneumonia, which he’d had 7 times, so it was presumed that would be his cause of death. He was aware of what trying to save him from that would involve, and decided that he wanted to die at home. A copy of the provisions was hung on his door, where it would be easily accessible.
I alerted immediate family members to Dad’s steady decline and his wishes, and most of them came to visit with him sometime during the Holidays while he was still alert and able to recognize his 9 children. He was able to be at the home of one of my brothers for Christmas, and we helped fill one of Dad’s last wishes by taking him on 2 drives to see Christmas lights.
The aides and CNAs at the care center were made aware of Dad’s care provisions and failing health, and they increased their surveillance and assistance. Dad was only in pain when he tried to get up and walk, so we refused opioid pain killers for the time being, as we knew they would increase his risk of falling.
On Mon. Jan. 2, I visited Dad at his dinner hour and was told that he had eaten almost nothing all day. He also seemed to be hallucinating, seeing and hearing things that weren’t there. That was a symptom when he’d had pneumonia before. Because he wasn’t eating, insulin for his diabetes was no longer an issue. The next morning I called the hospice nurse and told her we were ready to switch. Before I could get myself over to Dad’s apartment, hospice people were there setting up a hospital bed and arranging for their own oxygen supplier to provide Dad’s 24/7 oxygen.
Although hospice care doesn’t provide medication to effect a cure, they will provide whatever is necessary for comfort care, and oxygen is considered one of those things. The nurse also said that even though he wasn’t in pain, morphine would help to relax his muscles and blood vessels, making it easier for him to breathe. Dad’s breathing became more labored throughout the day, and when the morphine was finally administered, for a while there was a noticeable change for the better. Even though he wasn’t talking, the nurse said he probably could still hear, so we gave family members who couldn’t get there a chance to say goodbye with the phone to his ear.
We were told that Dad could live for several days like this, so when he didn’t seem to be responding at all, we went home that evening to try to get some sleep. We came back the next morning and “sat vigil” all day. By evening, even with the morphine, his breathing was very labored. We were again advised that he could live through the night, and that sometimes a dying person will wait until their loved ones have gone before they let go of this life. Because a snow storm was threatening to make travel impossible, I slowly made my way home up slippery hills. I had just gotten into bed when the Care Center called to say “He’s gone.” I made my way back through the snow, and found the hospice nurse already there. She assured me that I didn’t need to feel bad about not being there at the moment of his passing, that maybe I had to go before he could “go,” too.
I felt more relief than sadness to see that Dad was no longer struggling to breathe, and my religious beliefs helped me to know that he was in a “better place,” freed from his worn out body. However, I know that everyone experiences the death of a loved one and grieving in their own way.
In a future blog, I’ll share my experiences and what I learned about what needs to be done after a loved one dies.
- Update your loved one’s Care Provisions. Put the document where it can be easily seen.
- Ensure a family member has the legal right to make medical decisions for your dying loved one.
- Talk with a Dr. about certifying the need for Hospice or comfort-only care, and decide who you will call. If your loved one has Home Care, that agency might be able to provide Hospice Care.
- Keep family members updated on your loved one’s condition, and when they can visit.
- Allow comfort care, as needed. This is not the time to worry about drug addiction.
- Be aware that refusing to eat and difficulty breathing can be normal end-of-life signs.
- Get a doctor’s confirmation that it’s time to follow the dying person’s last wishes, whether they be to maintain life in any way possible, or to take no extreme measures.
- Even though he or she can’t respond, talk to your loved one. Hearing can be the last sense to go.
- Don’t feel like you have to be there the moment your loved one dies. Sometimes they won’t “leave” until you do.
By Marti Lythgoe, DTN Home Care Writer/Editor