After the usual preparing breakfast, school lunch and packing bags, we head to school. Before leaving the school grounds I ring my local café for my daily coffee order which they have ready and waiting for me on my way through to the hospice.
Once at the hospice, I gather Mark's breakfast of porridge and poached eggs and add all the ingredients to maximise the nutrition (probiotic plain yoghurt, fresh berries, supplement powders, 100% juice not made from concentrate and no added sugars, added fibre and highly nutritious seeds). Mark is usually sleeping when I arrive and his head is often hard pressed on his shoulder and in an awkward looking position. I then have the honour of inflicting pain on the man I love, to massage and loosen the muscles in his neck, enough to get his head up and straight, so that I can feed him his breakfast. It's agonising for me and for him, but it has to be done. I massage in magnesium oil and warm the muscles with heat packs. Nurses tried using muscle relaxant drugs and pain medication, but nothing took the edge off the pain as much as the natural approach of heat and massage.
After breakfast it's time to give him his wash in bed, clean his face, shave and attend to any bed sores or dry skin. We now lift him into a special supportive chair every day and most days he stays in the chair until the evening. I wheel him out on to the veranda, make him a cup of herbal tea, massage his hands or do a little physio or play his favourite music and just hold his hand. The hours pass quickly and before I can say "Herbal Tea?" it's already 11am!
I usually leave around 11.30am to allow him to have a little sleep in the chair before lunch arrives. I then tend to other duties such as grocery shopping, study or general house keeping duties such as paying bills and completing the paperwork for our tax and GST reports. Before I know it, it's 2.30pm and I rush to finish whatever I am doing to be able to get to the school to pick up Sebastian. Together we go back to the hospital so I can give Mark his DCA and prepare Mark's dinner, including boosting his hospital soup with homemade bone broth and adding probiotics and other supplements into his dessert. From there Sebastian and I head home, cook dinner and enjoy what is left of our evening.
Up until today, I would usually put Sebastian to bed and collapse on the lounge, becoming a true-blue couch potato and watching mindless TV. Zoning out to everything. But this doesn't work. When I go to bed and all is quiet and no matter how tired I am, no matter if I read or not, I can't sleep. There is no point trying to drown out what is happening. It IS happening.
Today I spoke at length with the Hospice Chaplin. I don't have much time for Chaplin's I'm afraid, but this guy is different. He speaks my language and seems to really understand me-which is rare. He listens and seems to understand and agree with my way of thinking. We talked for hours and he witnessed my frustrations with doctors and other staff. For once I felt heard and understood, supported and unafraid to be me. It was better than any counselling session I have ever been to (not that I have been to many because they generally don't understand me and want to tell me what to do).
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| Our Schnauzer "Else" doing her bit! |
Last week was another test of my strength when one problem after another presented itself. First Mark was put on a diet of pureed food (baby food basically) because he had failed to chew up and swallow a steak that was overcooked, tough and inedible. As I was not there to speak on Mark's behalf, the decision was made. The mush he was then served up was not pleasant and I lost all control of the food choices for Mark. The quantity of food was also greatly reduced, ironic when there was a concern of "weight loss" which was addressed by giving him less food! After finally winning that exhausting battle over several days and getting his food menu reinstated, I came home one evening to a trashed house. A thunderstorm sending my dog and the neighbours Golden Retriever into a quivering mess. In their panic to get out of harm's way, the doggy door was broken, our new shelving in our entryway was buckled and painted doors where scratched to pieces. I took a deep breath, calmed the dogs, put on music and left the house again to go to the hospital. Two nights later, crashed-out on the couch and about to go to bed, I heard an enormous crash and smash of glass. I was terrified, but I had to go toward the noise as it came from the area of the house where Sebastian was sleeping. The shower screen in our bathroom had smashed and the glass was cracking and falling to the tiled floor. There was glass everywhere. I was shaking with fear, although I could not see any explanation glass explosion. I rang my neighbours and within minutes they came to my aid. Together we cleaned up the glass and removed the frame that had been holding the glass, so that Sebastian could safely walk to the toilet in the morning and I could still have a shower.
During the clean-up process I closed the Sebastian's bedroom door, so as to dull the noise of the vacuum cleaner. In the process I jammed my thumb in the door frame. I felt so defeated, yet I also felt a surge of anger. What did I DO to deserve this? What more can the Universe throw at me to try and break me? I wanted to cry at the pain and scream at the ridiculousness of this situation. But I took a step back and looked at what was happening in front of me. It was 10 o'clock at night, and my friends where here, cleaning up my mess and making me feel safe. What was there really to cry or scream about? I'm ok, I'm cared for and I'm loved. Isn't that what we all really want in life? When you take a step back from all the "stuff", what is it we really seek?
Today was a breakthrough day for me and I feel much lighter and happier. Maybe Mark's time on this earth is over and maybe he has fulfilled his journey. I accept that may be the case and maybe our time together is coming to an end. Maybe all that I am doing with supplementing his food and giving him DCA is not going to change the final outcome. But I KNOW in my HEART, this is what I must do right NOW. I don't fully understand the things I do, the things I say or the things I write, but I do know that I have always been True to Myself, whether that has offended people or not. I don't lie, I don't sugar coat and I don't try to be or act how others feel I should. You can love me or hate me, admire me or despise me, but don't ever feel sorry for me. I am living the life I was meant to live and I accept whatever outcomes present themselves.
The Chaplin asked me to write him a few words, a mantra or prayer if you will. He believes strongly in sending loving words and positive affirmations to people in need, to help them with their journey. I too believe in this, and I often allow myself to just sit and feel the love that others send to us. I understand that not everyone can physically help or that many of Mark's friends find his situation too confronting and too difficult to face. I understand and I don't feel anger. But I can tell you that it doesn't take words to help someone who is facing his mortality. Sometimes just being there, holding a hand and saying "I'm here" is more than enough and while you might feel sadness, I'm sure you will also feel good. It's nice to see hundreds of people at a funeral, but for me, the time to say goodbye has already passed. Maybe the time to say goodbye is while the person is still living and the funeral is to honour the life of the person.
Many people are taken too soon. Young people and even children who still have so much living to do. Often people are taken and family and friends don't have that opportunity to say goodbye. I can't imagine how difficult that must be for their families and loved ones. But we have lived with this disease since Oct 2012 and we have LIVED every day since. Our last holiday in Kangaroo Island may not have been perfect, but the photos and memories are priceless. Sebastian and I have cried a river and we are both at peace with whatever the future holds. My mantra for the Chaplin and for myself are as follows and you may choose to send them to me too or maybe you won't. Either way, I will not judge;
May I stay connected
May I remain true to myself
May I be kind to myself
May I allow myself to feel the love from others
May I feel peace in the life I have been given
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