what you should know when a loved one is dying…

Friends, I have to extend my deep and heartfelt thanks to all of you for your comments, texts, emails and phone calls after my last post. You have touched and comforted me more than I can ever express. I promise this is the last post about death for a while and we will return to our regularly scheduled POTS/MCAD programming because, as usual, I have so much to talk about.

I know we all react differently to sensitive topics, and I don’t want to make any assumptions or judgments about what might be upsetting or sensitive topics for others. So, as a warning, if you are triggered by discussions of death, you should skip this post.

Prior to my mother-in-law’s death three weeks ago, I had never actually witnessed anyone’s death. I have known quite a few people who have died, but this was the first time it has ever happened in my house, or that I have been intimately involved. Over the past few weeks I have spent a lot of time reflecting on the experience because it all happened so quickly and I’m still evolving because of it.

I have previously written about being a caregiver, but despite my experience caring for my mom, I was wholly unprepared to have someone die in my house. I tried to read as much as I could, but ran out of time. Books I had requested from the library became available three days after my mother-in-law passed – no one warned us she would only have two months from diagnosis to death. We did the best that we could.

What I learned

I have compiled a list of things I didn’t know, of things I wish someone had told me, about what to expect. I’d like to share it so someday someone else won’t have to wish they were told:

• A person in a coma can survive without water for about 7 days, assuming no artificial hydration is used. Urine is still produced, which is why a catheter is usually inserted. You have to regularly empty the catheter.
• As your loved one gets closer to death, s/he may exhibit unusual behaviours, such as hallucinating, becoming aggressive, or acting delirious.
• Towards the very end, breathing becomes erratic and labored. It sounds like they’re struggling to breathe, but rest assured, it’s normal and they are not in any pain. It’s just the body preparing itself. 
• Hospice is covered by Medicare, and is available to everyone. As soon as you are diagnosed with a terminal illness, ask about hospice and demand help. We finally received help from hospice for three days prior to my MIL’s death. I wish we would have been more assertive.
• You will wonder if you caused their death by regularly administering morphine at high doses. You didn’t. Don’t waste time thinking about it, because it will eat you up inside.
• If s/he wants to die at home, hospice will help make that possible. If s/he wants to be in a facility, they should help with that, too. The hospice we used didn’t provide a facility, even though my MIL wanted to be in a 24 hour care facility, and we didn’t know we had the right to go with a different hospice provider. If you have time, interview different hospice providers.
• Hospice will help prepare the body for the final stages. The human body can expel some fluids upon death, so hospice will line the bed and other surfaces if necessary to keep it as sanitary as possible.
• If your loved one passes at home, you call hospice when they pass, not 911 or other police or emergency number. Hospice should call the funeral home for you, but be forewarned, they don’t come minutes later. The funeral home came to pick up my mother-in-law over 3 hours after she passed. Which, yes, means there was a dead body in my house for most of the morning.
• When the funeral home arrives, they will bring a stretcher. But if your loved one’s body is upstairs, they may not be able to get the stretcher up there. If that’s the case, your loved one is carried down in a body bag. Just a warning, because it could be a little traumatic seeing your loved one’s body in a bag. If possible, have a friend or distant family member take care of the collection of the body while the rest of the family goes for a walk or sits outside.
• This one is going to sound insensitive, and I have tried to rewrite it numerous times to make it less so without any luck. So I’m just going to say it. In some states, a death that occurred in residential property can affect the value of the property. Here in California, a death in a house, even if it’s from natural causes, is considered a material defect that must be reported for three years after the occurrence, and at anytime if the prospective buyers ask. Hopefully it’s more important that your loved one is comfortable, but I wouldn’t want anyone to be surprised.
• Some states have “right to die” or “death with dignity” laws. Up until a month before my mother-in-law passed, California had such a law.  In California, a doctor would have to certify that the patient had less than six months to live, and the patient is given medication to take at home when they’re ready.  Due to religious or spiritual beliefs many people may be against such laws, and I respect all of your beliefs, so I will leave it at that.
• If your loved one is cremated, the cremation process takes a few days. If you have never seen human ashes, they don’t look like the ash produced by a campfire. It’s gritty and there are small bone fragments remaining that aren’t consumed in the cremation process. If you haven’t discussed end of life wishes with your elderly loved ones, now is the time. Today. Otherwise you end up in our situation without any idea what they wanted.
• Some areas, especially federal and state owned lands such as parks and reserves, require a permit if you want to spread ashes on the property. Research what is required prior to distribution to avoid hefty fines.
• In my county and others around the country, you have to get a permit to transport human ashes out of the county borders. So if we decide to scatter my MIL’s ashes in another state, we will need a permit from my county, and possibly a permit from the other state.

What I REALLY Learned

When caring for a loved one with a terminal illness, you will be stressed out. You will constantly feel overwhelmed.  They will say things they don’t mean, and you will think horrible thoughts. But the most important thing I learned is that only two things really matter:

1. That your loved one is as comfortable as possible.
2. That you don’t have any regrets when it’s over.

Because in the end, it’s not the cancer or the grief or even the heartbreak of watching your loved one die that will destroy you, but the regret of all the things you should have said or done while they were dying. Friends, everyone deserves the death they want. It’s the last gift we ever give.

I’m going to leave you with one last thought which, like most things in life, is best expressed through a story about my dog. On the morning my MIL passed, I posted this photo on social media:

with the caption that my dog was searching for his gramma, who had stopped breathing that morning. Friends, I (or, rather, my dog) received all kinds of compassionate and comforting responses from strangers all over the world.  My dog received countless virtual hugs that day. Three weeks later we still receive supportive comments.

Death is hard on all of us. It’s the greatest of equalizers because all of us, regardless of age, race, gender, religion, nationality, disability, and other characteristics, will die and will watch loved ones die. Lately it seems like we live in a hateful world that emphasizes our differences. But if we can stop focusing on those differences, and if we can start seeing each other not as strangers or enemies, but as owners of a dog who just lost his gramma, maybe we can start to realize that, while life is singular, the human experience is not.

“If we lose love and self respect for each other, this is how we finally die.” – Maya Angelou

Smell ya later.
– Linds