Musings from a survivor and hospice social worker

After a long day yesterday and then a conversation last night that I really could have done without, allow me a vent/educational moment. I took a call from an old family friend who needed to tell me one year later that her feelings were still hurt that I did not return her call the week Linda was actively dying. She had apparently left a message offering to bring over a meal, and felt she needed an invitation from me. For over a year she has harbored her hurt and felt I needed to apologize. I graciously did so, explaining that during that week I was not able to take calls, because I was busy taking care of Linda, the children, and me. I was busy saying goodbye. I was not sleeping. And I was not answering the phone. I said I was very sorry, and offered that we had many visitors, and anyone who answered the phone invited anyone who wanted to come over to do so. She still needed more apologies from me for my not taking the call and personally extending an invite. All that long week I tried to make everyone around me feel ok. I tried to allow those who would not come and say goodbye who Linda asked for feel ok, and I lied to Linda and told her they came.
So, after playing nice in the sandbox, not throwing sand, and seeing two hospice caregivers yesterday who0 are dealing with the same issues at their house, allow me to set a few guidelines for use in case you run into this in your life:

• If the caregiver has a loved one who is not actively dying, but needs constant care, call/email/send a note.
• Show up and do laundry
• Bring the kids and do the yard if it needs it
• Drop off a meal. If they do not look like they are up for a visit, hand it to them, give a quick hug, and tell them you are thinking about them. Use dishes they can throw away, not have to keep track of.
• If they have kids, ask if you can take them out for a fun day, and do NOT talk to the kids about the loved one dying unless they bring it up.
• Do not tell the caregiver or the patient horror stories about someone you knew who died of the same disease. Really. They are dealing with those possibilities quietly. They know.
• Do not compare their loss to a loss you had. It’s not the same.
• Do not ask who is inheriting what. It’s nobody’s business.
• Do offer to come and just sit, so the caregiver can get out and the patient can visit if they are up to it. Being housebound is not easy for anyone.
• Do not expect a patient who is in the end stages of life to do the visiting. It exhausts them to leave the house, and it wears out the caregiver. It really is tiring to lift wheelchairs, oxygen, make sure you have meds, and make a loved one comfortable in a car. The patient needs to use their remaining strength for the activities they choose.
• Do not tell the patient or loved one that you just know God will work a miracle or that you just know they will live longer than they were told. You are not God. You do not know. They are coming to terms with mortality. Let them. Telling them to “fight” assumes they were not before.
• No miracle cures please- potions/machines/vitamins/health food. If they were going to try it, they already have.
• LISTEN. Being there counts.

When a loved one is actively dying and death is expected:

• Drop off the food. Disposable containers. Doorsteps are great drop offs if the family is in crisis.
• They need to take care of them. Unless you are the minor child of the dying patient, the family’s role is not to take care of you or to make this ok for you. It will be over soon. Be there if they need you. You will have lots of time to work through it.
• If a loved one needs to say goodbye to you, buck up and do it. It’s their death. Forgiveness is a powerful thing.
• If you are in a place where you are invited or should be there, tell your loved one what you will remember and take with you as they continue to live through you. Let them know it’s okay to go.
• If they participate in a faith tradition, be respectful. If they do not- the same rules apply.

When it’s over:

• Leave the sheets alone. The loved one may want them.
• Leave the clothes alone. They can empty closets when they are ready.
• No “I understand” statements unless you really truly do. “I’m sorry” goes a long way.
• Let the loved one adjust on their time frame. No criticisms are welcome. Some take a long time, some short. It’s their loss. They lived the illness, and they get to decide how they will respond.
• Dinner out/a cup of coffee/a flower a week or two later counts. A lot. That vacuum after all of the events are over can be deafening for a solo caregiver.
• No asking for ashes. Really. That’s rude.
• Be there. Just be there. Supportive, not suggesting. No “God will never give you more than you can handle” stuff. No “It will be ok soon.” It will be- but let them discover it on their time frame.
• Remember the anniversary.
• Don’t be afraid to use the loved one’s name. They died, they did not disappear.

Thanks for listening. Time to go take care of my hospice families.