Some would ask why I would use my blog to write about such a sad and heart-wrenching topic as my father’s dying. Why I’m spending time doing this instead of being there with him, why I’m putting myself through the extra emotional turmoil of writing about it. I don’t honestly have good answers for this. It’s kind of cathartic to put my thoughts into words on a page, that’s always been a therapy for me. I’m spending hours and hours at my parents’ house doing whatever I can, spending time with dad and helping with visitors, keeping Mom company. My three sisters are here as well, Dad’s favorite “cheering section” and between bouts of tears, we’re just coping. But we’re also noting this process. None of us has walked through death with a loved one before. Always death came suddenly, unexpectedly in most instances. We’ve never sat with someone who IS dying and watched it happen. It’s such a strange place to be, almost surreal. And after fifteen years of cheering Dad on, encouraging him to get better and keep going, we don’t know how to help him die. It’s all we can do to let him go. We were told that hospice would be wonderful to us, that we would be so glad to have them to lean on. The truth is, the hospice company that was recommended to us, has so far been pathetic. The sweet woman who came to explain their services was warm and friendly and compassionate. But the first nurse who showed up was anything but warm. She hardly spoke to any of us, hardly spoke to Dad, just tended to his bandaged foot, and left. We refer to her as Broomhilda. They said they would take care of his meds, and when we picked them up at the pharmacy, there were NO instructions with them. The nurse we called to give us the instructions (you would think they could at least be bothered to show up for that) gave us the WRONG instructions completely. So on top of our grieving and heartache we are agonizing about whether we’ve done any harm by following the wrong instructions. According to what they told my sister, the hospice people DON’T come to the house on weekends. So what do we do if he’s dying over the weekend, pray tell? I hate this hospice already.
Yesterday, a Saturday, was a day of visitation. Family, friends, neighbors, relatives coming in from out of state, the house was a constant stream of visitors. Church family came to pray and be supportive, which was so healing and needed. And of course, stress brings out the strongest qualities in each one’s personalities, which is not always compatible with the way others handle stress. Some of us like quiet, some of us need to talk, some of us need to “do,” and some can’t handle being there. None of us “wants” to be there, yet we all know we have to. There are moments when those differences clash. But we’re holding it together as best we can, the ebb and flow is part of the fabric of our lives, most of us don’t have much interaction with each other on a regular basis.
Dad wasn’t eating much for us, so when he wanted something to eat, we were eager to fix whatever he said he wanted. The day before he said he was fishing on a boat, and that there was this big fish that he kept seeing swimming around the boat. It was under the bridge at the creek (I assume he’s remembering his boyhood in Snowville) and he wanted my nephew to go catch it. After some time of this fish story, one of the sisters went out to Long John Silver and brought back some fish for Daddy, which he ate like he was starved to death. He practically inhaled it. All he wanted yesterday was some spring onions. My sister got him a piece of onion (after finding that none of the local grocery stores had spring onions in October) and he chewed and chewed on that piece of onion like it was delicious. An hour or so later, he started choking. A small piece of the onion was stuck in his throat and he couldn’t cough it up (the pain meds affect his ability to cough). After several panicky attempts to help him get that onion out, the rescue squad was called. Ultimately it led to a trip to the ER where a doctor was able to get it out with a small scope, and send him home. Ironic to be trying to save his life when he was trying to die. But we couldn’t let him die of choking. Once again, hospice was no help. We were anxious because Dad has a pacemaker/defibrillator in his chest, and the nurse said when he’s at the end, that defib will kick in, shocking his heart to restart it, and that’s painful. Someone was supposed to come out Friday to turn it off, but nobody knows why they never came. So there’s that anxiety. A couple of hours in the ER (once again at my now least-favorite hospital on the planet), they send Dad home and I go home to try to sleep after two days with almost none.
But sleep won’t come. I am so wired by stress that I can cry a river, but I can’t get sleepy. I feel so bad for going home instead of trying to stay at Mom’s to be near Dad. But she has a house full of people staying there, I am not really needed at this point. Yet I feel like I not only WANT to be there, but because of all the nights I’ve spent at the hospital with Dad, I know how scared he is of being alone when death comes. When he would startle in his sleep and his mind wouldn’t rest, I would put on some soft music (hymns) and sing to him to help him get back to sleep. Part of me wants to be there to sing him to sleep again, to be a comfort when he’s leaving us. But I don’t think I could get the notes out. Several bouts of tears later, someone suggests a hot bath to relax me and help me sleep. It does relax me, and I finally think I can go to bed for a few hours when the phone rings. It’s Mom, crying, saying they think it’s happening and we should come now. We scramble back into clothes and make the 32 miles as quickly as possible, my heart in my throat all the way. I text message the family and friends to let them know what’s happening on the way (no, I’m not driving, my husband wouldn’t let me behind the wheel with only 2 hours of sleep). We get there and Dad’s been calling for his family. He’s breathing irregularly, and in pain, so they give him some meds. We hold his hands and tell him we love him and just wait and watch.
Sometimes he stops breathing (is this it? or just sleep apnea? Finally he starts breathing again). When his breathing gets very shallow and slow, we see this area in his chest jump and we assume it’s that defib kicking in. One sister is on the phone with the hospice nurse (she’s an hour away?? What kind of outfit is this, anyway? I thought they were local!) and is given the phone number of a man who can come and turn off the defibrilator in Dad’s chest. He says he can’t be there until morning (do we HAVE until morning? Sheesh!) and tries to give instructions for how to stop the defib with a strong magnet on Dad’s chest. So we search for a strong magnet, and after much chaos and confusion, we find one, but we don’t know if it really does what he says it does. Meanwhile, a relative arrives, one of the granddaughters, from out of state. She comes with two small children who have made the long drive. It’s after midnight and they are cranky, needing to sleep. We try to settle the kids, but we are strangers to them and it’s the middle of the night, and they want none of that. The hospice nurse (a different one this time, thankfully) arrives after midnight to check Dad over. She spends an inordinate amount of time telling us why all the chaos with the hospice isn’t her fault, that she made the calls and people were supposed to come and do these things on the list. I don’t care. They only had one chance to make a first impression and they stink. I think of ways I could tell people online about their crappy service. It’s hard enough watching someone you love die without having his care managed by Larry, Moe, and Curly. But ultimately Dad is sleeping peacefully and we find it’s not time yet. So we all drift home to sleep however much we can. Another day on this horrible journey ended. Has it really only been four days since Dad made his decision? It feels like months.