As I am typing this blog, I am in bed with a man who is not my husband. (No, dear Reader, this is not just a cheap stunt in order for you to keep clicking through to my blog so it can boost my organic traffic, this is totally true). I’ve taken off my shoes and am sitting with my back against the headboard with my laptop on my lap, next to a patient who is likely to die today of pancreatic cancer. He is wonderfully cognitive, and his thoughts are ordered. Gareth has very little breath left in him but watching this horrible disease rob him of his strength daily, we have learnt to understand him, breahtles or not. He is not in pain and not anxious at all. He smiles when Storm and I tell him that I am going to park next to him for the morning, do my work, take my calls, and basically just hang around so he is not alone. Storm assures him that when I leave, she will take my spot.
I hold his hand and I tell him how much he is loved. I read messages from his sisters who are overseas, and I play him a song on my phone. He falls asleep, and I carry on typing. He is just older than me, shares a birthday with my husband and has the bluest eyes I have ever seen. This is the way the morning progresses. Every 20 minutes the team gently comes to turn him and then, when he wakes up, we chat about the things that matter at the end of a life like forgiveness and gratitude, and love. Always, always love. He also surprises me and mentions something about the movie Avatar!? I promise him that I will watch it one day (this is a big ask, as it is not my genre and I would rather watch a hamster on a broken wheel than watch sci-fi, but there we go… the last weapon of the dying is of course manipulation). I know he is a Christian and I ask if I should organise someone to pray with him, but then I realise he might not still be alive when said person shows up! So, I scootch in closer and pray like a kid. It feels like I am making a phone call to someone we both know well and whom we love and just letting that person know that Gareth is ready to be picked up. There is no hurry in the prayer (like many of my prayers are). We have the whole day and Gareth is not going to interrupt me. He holds my hand tighter than usual and then he falls asleep again.
Social workers always say that we need to meet people where they are at. So, when our guests arrive here, we don’t compare them to who they were before they got ill or injured. We also don’t judge them on what they should have been, achieved, gathered, accomplished, and acquired. What they bring into that room is all that actually matters for the time they are with us. It is often wonderfully freeing for them.
I’m not sure what happened in Gareth’s life. I can’t understand why not one friend came to see him or why his relationship with his wife had broken down to such an extent that she kept his boys from saying goodbye to him almost right up to the last possible moment, just hours before he passed away. We do not know what he did career-wise or how his cancer journey even started, and it is definitely not our place to know. Our job was to accept and love him from the moment he arrived, and that is what we did. It makes our work so much easier and less complicated.
Rose, who is with us for end-of-life care, was a highflying A-type personality who did something so fancy in the finance world that I can neither spell nor understand it. When her work colleagues visit, she is anxious for days before and for the days afterwards, she is depressed and weepy. Right now, Rose is not a career woman, her life has minimised dramatically. She is the same, but she is so totally different and although her colleagues love her, they don’t really have an understanding of where she is at. I get the feeling she is ashamed that she is not still fighting this cancer with every aggressive treatment available to her. I doubt they have told her that she is a quitter, but that is what she feels like when she is with them. She was a fighter in the rat race, but in this battle, she has chosen differently. Her colleagues are out there in the world, achieving goals and making money and climbing career ladders; things that were important to her once too. But as her abdomen distends, her world shrinks and what matters to her is different. She prefers to see my staff, the social worker, the wound care nurse. Her siblings sometimes get it a bit wrong; they can be an overwhelming and exhausting presence, but they have loved her through her many versions of herself, and they are adapting once again to this one.
When we care for patients upon discharge from hospital after invasive, painful and let’s be honest, totally gruesome plastic surgery, we need to meet them where they are at too. I often wonder why someone who is so beautiful would want to enhance her bum or reduce her bingo wings. We have had women (and many men) who travel from the States, Canada, Botswana and other places to come here “in secret” to be lifted-and-shifted, trimmed-and-tweaked and sliced-and-spiced. Sometimes multiple surgeries are performed, and we watch the poor guest weep as they are in such severe and overwhelming pain that the thought of lying down makes them almost hysterical. We need to keep in mind that although the plastic surgery is totally physical, the need for healing is here, more than in other surgeries, psychological and that is part of the recovery on which we need to focus too.
I don’t know why people make certain choices and I am often astounded at how the choices we make can affect our lives forever, and sometimes not really at all. Earlier today, a young woman came in to book her room here and confirm that she is expected after her double mastectomy in a week’s time. She made all the right choices, so how did she get cancer? She ran, she maintained a healthy weight, didn’t smoke, didn’t drink, she was even blessed with no cancer in her very deep gene pool. She bought organic vegetables and ate tofu rather than red meat. For goodness’ sake, the poor woman even shopped ethically on-line. Never did she even once buy as much as a handkerchief made by little Chinese children paid with a grain of rice after a twelve-hour shift (picture your slim-fit T-shirt absorbing their tears). She even suffered her way through menopause cold turkey as she read that HRT’s are bad for you. She expected an award of a long, dignified life, but instead was told she has stage 3 breast cancer. It is not fair, we tell her. We see this all the time. I can tell you this in writing (which I am doing obviously) that bad things happen to really good people. All the time. We recently had someone recover with us after a terrible bout of pneumonia. She was totally charming and funny. She is 86, inhaled her way through 25 cigarettes a day, knocked back glass after glass of wine while sitting in the bright African sun with her pale Scottish skin (she did not even have the decency to have an age spot or little cough, never mind any of the smorgasbord of cancers from melanoma to lung cancer on offer for one breaking every rule when it comes to longevity), but life does not work like that. There is no algorithm that ensures that life “makes sense” or that you get what you deserve or even what you pursue. Life is rather messy and unfair, but as we see the whole story with everyone who stays with us, we are also totally convinced that it is not completely random.
I often question choices and decisions I have made in this business, but in moments when we are able to absolutely offer precisely what a person needs in his or her last hours, I am beyond grateful that we do not fall under the corrupt department of health or the highly inefficient board of health care funders. If we were, we would not be allowed to instinctively care and love like we do now. Apparently, no licenses have been issued for formally registered hospices and sub-acutes for years, so we would probably not have got an official licence, even if we wanted one, but I assure you that if we did, and became an “institution”, Storm would have been busy doing reems and reems of paperwork and admin and I would have been on the phone to Discovery begging them for payment instead of sitting here next to a dying man who just needs the dignity of presence. (Just yesterday I spoke to a doctor who received less that 15% of pre-approved claims for his palliative patients! What the heck?) We would have squeezed too many patients into a room and staff would have been overworked and unmotivated because instead of weekly sessions where we connect and talk and laugh and eat together, they would have been ticking check lists and completing forms. So, we chose to do our own thing, stay private as a non-medical facility. We make much less money, but in this game, it can never be about the cash. Instead, I am holding the hand of a man who now needs someone to be there for him. Despite the story that led up to this last chapter in his life, things have fallen into place. There is forgiveness and grace and a tangible peace. It has fallen into place for Gareth now, and to him, it is all that matters. I am not for a moment implying that an easier life wouldn’t have benefited his loved ones, but what gentle promise is this, that right at the end, things were okay? God must have had him all the time.
For each end-of-life patient, we start a WhatsApp group that includes the medical team, shrink or social worker, admin staff and us. We also add the family so that they are included and informed throughout the journey. (This could be a blog all on its own). Two days before Gareth died, his sister in Australia wrote: ‘Thank you all so much. My brother couldn’t have been in a better place. I truly believe that God led me to you. Gareth feels so loved and accepted for the first time in 40 years.’ Later she wrote:
My dearest Anne, and all staff
From the minute I connected with you back when Gareth was still in Olivedale hospital, I knew in my heart that God had led me to something special. When I saw the prices, I was in a bit of shock as you know, because I didn’t know how we were going to manage it, but once again as the human heart fails what I should have said is “God, I know you can do this”.
When I started looking around at the different hospices, and some that were sent to me, I just felt flat and discouraged
but the day Gareth arrived there he took a selfie of himself sitting outside his room and two photos of the garden, I knew we made the right decision. He called and said with the most grateful heart “Sis, I feel like you’ve put me in a five star hotel. Thank you from the bottom of my heart.” And he was home.
Gareth had led a lonely, cold existence the last 5 yrs. Once he was with you, we felt so at peace. It was like finally my brother had a home a place where he would be loved and helped and checked on. Oh, as I write this tears are streaming because I know that I know that our God never fails.
I am so happy that we got there to not only share some beautiful moments with Gareth but also to meet you all. Our hearts certainly were filled with the peace of Sunninghill and God’s presence is all over the place. So, from the bottom of our hearts, we are so grateful for the love that you showed us, for caring for us. Even though we were an intrusion we were never made to feel like one, and most importantly to you all for loving him and keeping him comfortable in his final days. For being there with him. Anne, for recognising and being tuned into the fact that his last day on earth was here and going and sitting with him on his bed, holding his hand, and praying for him. Thank you for keeping us informed. To Obie and George, thank you for being with him when he drew his final breath.
Thank you, and may God give each one of you the courage and strength to go on. I believe that this is not only a business, but a calling and a ministry.
All our love
Jennie and family
It was Jennie’s choice to find us and pay for Gareth to stay with us. Jennie and Carol came out to SA and spent time here to say goodbye. She made the right decision. Small choices in the end, even at the end of a life filled with many questionable choices, can make a big difference.
Sometimes our choices directly impact the outcomes of our lives, and sometimes they don’t, and things feel very random. There is no guarantee, but there is freedom in letting go our need to hold onto the outcomes too tightly. Dr Edith Eger, a holocaust survivor, says; “To forgive is to grieve – for what happened, for what didn’t happen—and to give up the need for a different past.” Gareth never got the past he wanted, he was robbed to soon of a future which could have made up for the past, but in this minute, on this Thursday his soul is good. The last chapter has been beautiful.
Footnote:
Gareth passed away on Thursday afternoon around four. His dad came to say goodbye and clung to us because it takes superhuman effort to leave your dying son. His precious sisters, who had sacrificed so much for him, FaceTimed, but they had no regrets. They all loved him and he knew it. They walked every step of the way with him. His precious daughter, spent intimate beautiful moments with him. He loved her. She loved him. His ex-wife (it is ALWAYS the ex-wife, not the new one) spent most of his last day with him, assuring him she will carry on loving and cherishing their daughter. Gareth waited until he finally spoke to his two young sons on the phone who live in the Capetown, and a few hours later he gently slipped away. Obakeng and George whom he loved so much, were with him. He was never alone. He still isn’t.