I got the call last Thursday at 11; Dad had taken a turn for the worse and Greg thought my sister and I should come over soon. Having just come from the gym, I rushed through getting ready and got on the road a short time later. When I got to his room, my sister was already there, sitting with him. His breathing was labored, he was on oxygen, and he looked so thin. I had brought some peonies over on Monday and they had become globes of white and sunset-colored petals, with an incredible fragrance. I wanted Dad to have some sort of sensory experience, and the peonies were wonderful. We settled in and prepared for whatever was coming.
He had declined more and more in the preceding two weeks. When I saw him Monday the 25th, he was barely taking in puree’d food; by Wednesday, he was choking and I gave Greg the okay to stop feeding him. That’s what happens with Lewy Body, in particular, but can happen with most dementias; the throat muscles become weak and dysfunctional. Dad hadn’t said a full sentence for years, just one or two words at a time. His throat had become so weak now that he could no longer even swallow, and the last thing we wanted was for him to aspirate something and get pneumonia or some other infection. I didn’t want to keep doing something to Dad that was only for my comfort.
At work on Wednesday, I asked my friend anxiously how one did something like stop feeding one’s parent? It is a terrible choice. I am, of course, a fan of hospice, and I wanted Dad on service with Providence of Seattle – where I volunteer – so that they could make the uncomfortable decisions. Something happened with the referral from the doctor’s office, and I kept having to call them to make sure it had been sent. The squeaky wheel definitely gets the grease when it comes to health care! Finally, on Monday the 2nd, I called Providence, who still had no record of my dad, then called his doctor and insisted they send it now!
At last, he was in and we went through his intake with the nurse on Tuesday, who helped us arrange an air bed and made sure a comfort pack with medication was sent to Greg. My sister and I sat with him for a little while and chatted quietly, jumping a little at every cough and wheeze. Eventually, we both went home and carried on with our lives until the phone call Thursday morning.
And then – nothing. He seemed better, although his breathing was still labored on the oxygen. We sat, then ran some errands, then sat some more, until we decided with Greg that he seemed to be doing better, and that it might be a few more days. I left and went over to a friend’s house for dinner, getting home at 8:30; and the phone rang again. Dad had slipped by us and left the world, accompanied only by his most trusted friend, Greg. Crying, I drove back over to the house.
Being with a person who has died is like no other experience. You don’t realize how much noise people make, even when they are not talking! People shift, and inhale and exhale, and make all manner of other noises when they are alive. There is nothing but silence and motionlessness with death. I have now seen both of my parents after their deaths – and I’m not even 50 years old. I sat with my dad until my sister got there and took her turn with him. My husband and I had researched funeral homes a few years before so Greg and I had someone to call right at hand, and could make arrangements without fuss, and they came when we asked them to come. And then he was taken away.
Being a caregiver advocate, I can’t help but use my experience to help others. Accordingly, I have these words of wisdom for the end. Be the squeaky wheel, don’t stop advocating for your loved one as much as you have to – be annoying if necessary; use hospice – even though Dad was only on service for four days, they helped a great deal, and they are following up with bereavement care. Know when enough is enough; heroic measures are often only comforting for the family members, they might be harmful to the patient. Have arrangements ready, so you don’t have to distract from your family member, or fumble through a phone book, making last minute choices. Be prepared, as much as is possible.
What a long, strange trip it’s been. Being Dad’s caregiver defined me in many ways. I based a career on it, wrote two books and a blog, and started a support group. For his sake, though, I am so glad it is over. I hope wherever he is, he is free and strong and doing whatever he wants, unconstrained by his non-functioning body. And I look forward now to whatever new thing is coming my way, whatever new paths I can take, and whatever new things will help define me; I’m pretty sure I’ll write about those, too! I thank everyone who shared this journey with me – I couldn’t have done it without you.